by Jeanene Harlick | September 28, 2016 5:26 am
I’ve been working on change lately. I thought I’d been giving it a pretty good go for years – I’ve been through so many, countless programs and therapists. But real change, in the real world, I’m learning, is a lot harder, and involves some very different strengths, tools, and tactics, than I realized.
I think the two hardest things about trying to change, about trying to “recover,” about trying to implement new ways to cope with a turbulent, punitive, and self-hating mind are this:
And you’re trying to do this when you’re just so fu—ing exhausted – from so many years of pain, of fighting a mind that constantly attacks itself. And, in my case, additionally exhausted from decades of malnourishment and the physical and psychological impairments resulting from – nearly one year ago – jumping off my apartment roof*.
And that last thing – that suicide attempt – has only added more deceptively-thin but unyielding filaments to the web of interior confusion, pain, tumult and questioning which underlie my dysfunctional coping mechanisms in the first place. Now, the why-am-I-like-this puzzle is even more complicated – possibly impossible – to solve. My mind is such a labyrinth of issue building upon issue, of experience building upon experience, that the only possible end seems the Minotaur.
Each time I have even one tiny victory – one imperceptible (to others) movement toward change – and manage (as I must, because the OCD calls) drag myself out of bed the following morning, I feel as though my body, mind and spirit have emerged from some kind of grueling, Herculean battle with Greek gods throwing emotional and cognitive lightening bolts at each other for days. And I’m once again sitting amid the embers, attempting to recuperate, haul myself up, and return to my troop. But more and more these days I don’t seem able to recover from the battle wounds. Each sortie takes a little more spirit and life out of me, knocks another chip out of my soul – a chip that vaporizes instantly and never comes back.
And as the saying goes, I’m just so tired of being tired.
Here’s one thing that’s so bizarre about my life now: I look at people performing the most routine of daily functions – showing up at work at 9 a.m. and leaving at five; walking down the hall with
*That suicide attempt bears an important reminder, readers: If you’re thinking about – or ever do – taking your life, please consider that if you survive, your life and your relationships will only be exponentially more fu—ed up than before. So in other words: Don’t do it. Not that I’m, obviously, the best role model on this topic – but please, ride the urge out.
a colleague and enjoying a moment of professional mirth, as I recently observed while in the hospital. And I marvel. I used to be one of those people – just doing normal things, showing up for work, dressing professionally, the usual stuff – and now “the usual” seems an impossible goal or achievement, something only the mighty and good can reach. I don’t want to be accomplished, “great,” make good money, or considered “talented” anymore – I simply want to be “average.” Plus stop hurting people, reciprocate kindnesses and, if I’m lucky, contribute a little meaning to this world. But I can’t even manage those little things.
Nonetheless I am trying to change, for real, right now, even though I’m sure it’s unapparent to those close to me. But the fact is I’m weak: The ways in which I’ve dealt with my mind and life events, for the past 20 years, prove it – and I don’t know if I have the strength, or courage, to change. I don’t know if I have the strength to sit with the reality of me and the courage to let go of the behaviors I’ve relied on to make me feel “safe” or “in control”; or the strength to stop myself from carrying through the impulsive, highly-destructive actions I’ve always resorted to when my emotions reach an intolerable boiling point.
I’ve succeeded once or twice, with the latter challenge, the past couple months. But just barely. And the failures have dwarfed the successes.
I wonder a lot lately why I’ve spent so much of the past few years being angry and blaming others, when – even if some of those feelings or beliefs are remotely justified – focusing on them is a waste of time and energy, period. The anger gets me nowhere – and it’s in actuality mostly a cover-up for hurt feelings, and sometimes denial. But you also turn people – and potential listeners or collaborators – away with anger.
The blame is even more pointless – because I’m complaining about things or issues or systemic, socio-political injustices my little voice will never, ever impact. Because let’s face it people, almost nobody reads me (although I’m grateful to those that do). But, of course, nobody in positions of power read me. So what’s the point of even trying to highlight prejudices or bad practices, or whatever thorn happens to be pricking my vulnerable side at any given moment – things which okay may play some, small role in the state of my life – but which pointing out is never going to make my life better. The only thing that’s going to do that is me. Change is on me.
So that brings me to another ingredient I realize I need for change: Acceptance. Am I – (are you) – willing to accept the world as it is, that certain disparities are always going to exist, and that I’m certainly not going to play any role in reversing them; can I not only accept these things and stop fighting them (it’s a losing battle), but also accept the state of my life? Particularly in comparison to others’? My life (your life), is what it is. Deal with it, Jeanene. A lot of people have it worse than me. Accept the fact that I have no fu–ing control.
It all seems too much right now, as I approach Oct. 23, that one-year “anniversary” of my suicide attempt: Having to not only face up to my culpability in the state of my life, and my failure to “recover,” as I’ve seen so many others do – while simultaneously attempting to cope differently with the painful psychological, existential and relational issues which have been present and growing ever-more complex and entangled for years.
Oh, and there’s one other thing I can’t comprehend learning how to do, if I’m really going to change. I don’t even know if it’s something a person can learn; it seems you have to be hard-wired for it: This concept of liking oneself. As far as I’m concerned, I’m a loathsome individual who’s treated many people – including beloved, supportive family members and friends who’ve made great sacrifices for me – horribly in my worst moments and inadequately at my best. How does someone like that ever like themselves? There’s just no excusing nor forgiving some behavior – especially when it’s directed toward the kindest, most undeserving of people. There’s no secular Hale Mary’s I can perform to atone for the sins of my past. There’s no walking away from them – nor the consequences of those acts and other choices of my life.
I do really believe there are people born into this world who just weren’t meant for it. The Cosmic Stork dropped them, by mistake, in the wrong universe. And I think perhaps I’m one of those people. Neither my mind, my spirit, my actions, my beliefs, my character, my person – fit anywhere. If alternative galaxies or wormholes or matrixes or whatever do exist, maybe I belong in one of those, I don’t know. But it’s sort of nice sometimes to think about whether, when I die, I’ll wake up in the place I was originally supposed to land in.
Because as I approach the date marking a year since that October event – an act I ceaselessly reprimand myself for not carrying out successfully – it becomes increasingly untenable for me to live with the pain and burden I continue to cause others, the loneliness (self-imposed) of my life, and the bleak fact that there’s nowhere for that life to go anymore. What, I constantly wonder, am I even fighting for? And why – goddamnitt – does this stupid, primal instinct of self-preservation, combined with intense fear (memories of the hellish rehabilitation process following the jump), keep getting in the way of me carrying out the act that will delete me from this particular quantum plane forever?
True change is much harder, and takes far more courage and strength and discipline and inner paradigm shifts than I ever imagined. And I don’t know if I’m up for it. I don’t know if I care if I’m up for it. And wouldn’t everyone be better off if I wasn’t?
I do know one thing for sure: I harbor newfound and profound respect, awe, admiration and wonder for those in my life – and outside it – whom I’ve witnessed overcome greater inner demons, hardships, and addictions than mine. My hat’s off – truly – to all of you. You are the bravest people I know, and I can only hope the rest of the world comes to appreciate what it took for you to learn and implement – through sheer will and courage – new ways of handling the external and internal vagaries every human battles, but which some battle more than others. You know, it’s silly – I tend to think I’m uniquely cursed with the dense, dark cloud of angst and bad luck I feel is constantly showering toxic rain upon me, directed by Karmic forces who just don’t like me. But that’s bullsh–. Life is hard for everyone. I’ve just taken the weak way out. Over and over again. And now I fear it may be too late to find a way out of the lovely, intricately-designed, interior labyrinth I constructed.
Don’t let the same happen to you, please. If I am to take any solace from this ineffective life of mine – those of you that can, try to change – start little! – now. Don’t be like me. Don’t end up in too deep a chasm to climb out of – a chasm you didn’t realize you were digging all along.
Source URL: http://adisorderedworld.com/2016/09/the-challenges-of-change/
by Jeanene Harlick | July 29, 2016 7:04 pm
I haven’t put much put stock in “hope” lately. I’m 42, an unemployed, former journalist, poor, and I jumped off my apartment roof last fall, to what I thought would be my death.
I’ve long been considered “mentally ill,” I still want to die, and now also live with what may be some sort of PTSD associated with the suicide attempt. When people like Hillary Clinton talk about, or fight for, the rights of the disabled, that doesn’t generally include fighting for people like me – people with psychiatric disabilities.
Yet, for some reason – one I’m still trying to pin down – this week Hillary Rodham Clinton has reignited a bit of inner hope.
For the first time since I tried to kill myself, spent two months in the hospital undergoing agonizing surgeries, and have (rather poorly) grappled with the suicide attempt’s physical and psychiatric consequences, I’ve shed tears of joy instead of despair the past two evenings.
Chelsea and Hillary Clinton’s speeches Thursday night, in particular, made me think maybe, just maybe, there’s hope for both me and this country lurking out there yet.
I know it probably has something to do with Hillary being a woman, and the fact that at least one of my mental illnesses – “anorexia” (it’s so much more than that) – is linked, in misunderstood but complicated ways, to the completely absurd, contradictory and unachievable cultural standards females are expected to live up to in the United States today.
Hillary’s never cared about being “thin,” “in shape,” or proving her discipline through her body, as she’s simultaneously fought for the downtrodden all these years, I thought last night. Why haven’t I done the same? Or, why can’t I start?
But Hillary’s nomination, her life work, her daughter, and what she wants to and will do for this country mean much more than that, of course.
There’s the obvious historical nature of the moment. A woman very likely becoming president. With me at an age where I’ve been able to witness and appreciate such an astounding, decades-long arc. With me so very, very proud of what this means for my three nieces.
But you know what moved me the most – what caused me to think that maybe I can keep fighting, instead of walking the four short blocks to the nearest train tracks – as I’ve lately been considering – this week?
First: Hillary’s resilience. Her courage. Her determination to keep getting back up when people have mocked her, attacked her, and dismissed her. She never – or at least not publicly – let herself fall into self-pity or stew in anger, as I always, inevitably, seem to.
No. Clinton just brushed off the dirt, healed the injuries, and looked for – and found – the alternate path to her goal. The road less travelled that was there all along.
Maybe I can do the same, I thought Thursday night. The odds are against me, I’m well aware. But anything is better than resigning myself to the life of obscurity, loneliness, joblessness and interior agony I have consigned myself to for the past eight months.
There was that story Clinton told, Thursday, about being teased at school, and how her mother blocked the door when Hillary ran home and tried to retreat inside, momentarily giving in to the fear and shame. “Go back out there,” Clinton’s mother said.
“She never let me back down from any challenge,” Hillary recounted.
Even though we self-absorbed Americans tend to think, during dark periods and circumstances, that each of us are the only ones facing such seemingly overwhelming, insurmountable barriers and “unfair” obstacles – the truth, of course, is more complicated.
The truth is that life is very, very tough for everyone. Just in different ways.
Like Hillary, I need to stop hiding from bullies – in this case, the biggest bully being what I allow my own mind to say to my Self.
“You have to keep working to make things better, even when the odds are long and the opposition is fierce,” Clinton said.
The second thing that reignited hope for me Thursday? Clinton’s longstanding understanding that the privileged are interconnected with – and commanded to help – the less fortunate. That, combined with Clinton’s concrete track record of doing just this – fighting to empower the disadvantaged – over, and over, and over again; for going on 40 years.
Hillary talked about how her mother was “saved by the kindness of others”:
“No one gets through life alone,” Clinton said. “We have to look out for each other and lift each other up. [My mother] made sure I learned the words of our Methodist faith: ‘Do all the good you can, for all the people you can, in all the ways you can, as long as ever you can.’”
I’ve been on this earth long enough – and I’ve endured enough – to know that I’m unlikely to reap, in my remaining time, any quantifiable benefits from the remnants of American “democracy” or politicians’ promises.
But just knowing there’s a female, presidential nominee out there who is, at least, trying to bring some change – however small, and however slow – to this country of ours, right now, may be enough to get me by.
Maybe that Hope from Arkansas which first rose to the national scene in the ‘90s, and which I’d assumed got extinguished long ago, has been there smoldering, all along, and is about to flare up again – this time stronger than ever. Maybe all we have to do is just believe in that spark – but more importantly act on it; help others as well as ourselves – and maybe if we do, this time hope’s flame will be made real, and lasting.
Source URL: http://adisorderedworld.com/2016/07/the-real-hope-from-arkansas-unexpectedly-reignited/
by Jeanene Harlick | May 27, 2016 6:36 am
Following is Part 1 of my chapter on the socio-politics of suicide for the forthcoming, 3rd edition of “Community Mental Health: Challenges for the 21st Century,” edited by Jessica & Samuel Rosenberg. If you are interested in reading the rest of the chapter, please consider purchasing the book (I receive no money from book sales); you can also sign up to receive an email when additional articles are posted on this Web site, using the form at the bottom of this page. Please consider donating below; unless “A Disordered World” receives donations, this will likely be the last article posted due to lack of income.
“Suicide is revealing: it exposes deep divides between the top and bottom of the social scale in terms of health, life expectancy and well-being. Suicide forces us to take these deep divides into consideration… All the data gathered by psychiatrists and epidemiologists tends to relate suicide to depressive states and alcoholism… [But] what is at stake is the meaning of life and even the status of the subject….”
-Christian Baudelot & Roger Establet, “Suicide: The Hidden Side of Modernity” (2008)
In Charlotte Brontë’s novel Villette, main character Lucy Snowe, as a young schoolteacher, endures a period of “overstretched nerves,” feelings of “cruel desolation,” utter loneliness and hopelessness which cause her to exhibit behavior that would today result in the iron-branded, DSM diagnoses of anorexia and major depression:
“Alas! When I had full leisure to look on life as life must be looked on by such as me, I found it but a hopeless desert: tawny sands, with no green fields, no palm-tree, no well in view. The hopes which are dear to youth, which bear it up and lead it on, I knew not and dared not know. If they knocked at my heart sometimes, an inhospitable bar to admission must be inwardly drawn… A goad thrust me on, a fever forbade me rest; a want of companionship maintained in my soul the cravings of a most deadly famine.1”
Snowe’s unbearably-weighty, “affliction on my mind” – brought on by a summer of unemployment, extreme isolation, “want of companionship” and a bleak future – causes Lucy to rise, in her weakened, emaciated state, from bed one stormy, October evening. She wanders off across distant fields in search of solace – or, if she can’t find it, death:
“That evening more firmly than ever fastened into my soul the conviction that Fate was of stone, and Hope a false idol – blind, bloodless, and of granite core… A sorrowful indifference to existence often pressed on me – a despairing resignation to reach betimes the end of all things earthly.2“
Lucy goes to a certain quiet hill she knows of, discovers a church where she vents her pain to a kind priest; then departs and, though finally relieved, gets lost and collapses from malnourishment among foreign streets.
Luckily for Snowe – and Brontë’s readers – Lucy is found, and regains her mental and physical strength. Spared psychiatry’s taint, she goes on to fulfill a successful career as a teacher and, by book’s end, headmistress and proprietor of her own school– despite never marrying, despite being a single, working woman in Victorian times.
I sometimes wonder if I – like Snowe, a permanently single woman who has long battled “overstretched” nerves, a “tossed” mind, “despairing resignation,” hopelessness, and periods of restricted eating – had escaped psychiatry’s clutch, I might not be writing about suicide today. I wonder, if I hadn’t been lured into the traditional mental health system – and tainted with ensuing stigma – I wouldn’t have ended up unemployed at age 32 and on a decade-long path which eventually led, also on a recent October night, not to an isolated hill but my apartment rooftop, where I jumped to what I thought would be my longed-for death.
I woke up, intubated, in the ICU three days later unable to move, bones and joints broken in every part of my body, including my skull and jaw. I was in the hospital a month, undergoing a series of agonizing surgeries as doctors patched me back together with titanium plates, screws, rods and braces. I spent another month in a nursing home, where I did not spend my hours feeling grateful I was alive. I did not feel blessed with some divinely-bestowed gift which suggested I’d “survived for a reason” or think that, because I survived, my life suddenly had newfound purpose.
No, on the contrary, for many weeks and months – and even now, many a day – I felt just the opposite, as I’ve learned many suicide attempt survivors do3: that my sh—ty life had only become sh—tier, and I was now coated with an extra layer of stigma.
The problems which drove me to be one of the .5 percent of people who go from thinking about suicide, to actually doing it4, didn’t magically disappear simply because I survived; they have only grown larger. Those driving factors – which researchers are only beginning to understand – had little to do with my pre-existing “mental illness” (a label I have problems with) but a lot to do with the prejudice-laden society, times and political landscape I live in. And it’s that point that I will try to drive home in this chapter – not only because this new understanding of the true underpinnings of suicide is critical to improving counseling and reducing rates, but because I and millions of struggling individuals and attempt survivors are tired of having clinicians and the general public blame our “sick” minds or moral deviancy for wanting to take our lives, when it’s a sick society that’s the true culprit.
Suicide is the topic nobody wants to talk about – or, at least, talk frankly about on a level which rises above simplistic, prevention-oriented clichés or flat-out judgments. That’s because suicide is scary, morally fraught, emotional, complex, and forces people – when thoughtfully examined – to confront fundamental questions about existence, the line between sanity and insanity, religion, and society’s role in driving some humans to a point of such utter despair they’ll walk willingly into death’s hands. An almost impenetrable wall of taboo also shields the public from having to tackle an act which was not fully decriminalized until the late 1960s, and which long has been considered a transgression against God, society and family.
But there is a hidden hunger to talk about suicide. When I published an article which very frankly discussed my attempt, and the wider phenomenon, in December 2015 I was flooded with messages. People passionately thanked me for honestly writing about suicide in a way few others are willing. I realized there are millions of people out there desperate to discuss thoughts and feelings which society misinterprets and frowns upon, and so which are kept hidden – millions of people crying for redress, and relief.
As I delved deeper into both newspaper stories and the academic literature on suicide I discovered that at this point in modern times, more than ever, there is an urgent need to puncture the silence surrounding suicide, because its prevalence is escalating at alarmingly rapid rates both here and throughout the world. While deaths from homicides and most major diseases have decreased over the past 15 years, United States’ suicide rate has steadily increased, reaching its highest in 30 years in 2014 – 13 people per 100,000.5 More people die now from suicide than from car accidents, and it claims more than twice as many lives as homicide.6 A recent Newsweek article said our nation’s failure to curb its tenth-leading cause of death constituted an “epidemic”.7 In many other countries, including Japan and India, rates are even higher; the World Health Organization (WHO) is so concerned it released a special report in 2014 on the need to recognize suicide as a global public health issue and to improve prevention efforts.
The demographic group driving the trend in the U.S. are middle-aged adults, adding to a slew of recent studies indicating a new steady state of suffering, hardship and desperation among American breadwinners.8 Suicide rates for adults aged 35–64 years old are increasing faster than for any other age group, and the spike is sharpest for 45-64 year olds; since 1999, the rate for this group has increased 63 percent for women and 43 percent for men.9
During the exact same time period, middle-class incomes fell substantially in almost 90 percent of metro areas throughout the nation.10 Studies have shown a link between the recent rise in suicide and increased socio-economic distress.11
Analyses of Centers for Disease Control and Prevention (CDC) data show that suicides, along with substance abuse, are also responsible for an alarming spike in overall death rates for working class, white adults under age 65, off-setting the benefits from advances in medical treatment for conditions like heart disease.12
Suicide’s impact isn’t limited to the nearly 43,000 individuals who annually fall victim to it. An additional million individuals aged 18 and over attempt to take their lives yearly; 2.7 million Americans make a plan; and 10 million have suicidal thoughts13 – and those are conservative estimates, due to underreporting.
And then there’s the close family members – six per suicide decedent, on average – who have to contend with the unique, complicated form of mourning and emotional scars suicide leaves in its wake14: “The strong traumatic charge it carries ensures that the shock wave [suicide] generates will spread across an area that is quite disproportionate to its statistical rarity… It is a highly visible aspect of social life,” wrote Baudelot and Establet.15
To those who still prefer to turn a blind eye toward this growing problem – despite such alarming numbers – because they write suicide off as the act of the cowardly and crazy, perhaps the cost to society can sway them. In 2015 alone, suicide deaths cost the nation an estimated $51 billion in combined medical and work loss costs – that’s more than $1 million per casualty.16 Despite the human and public toll, however, research behemoths like the National Institute of Health and CDC continue to devote far greater sums of money to finding cures for diseases and social problems which kill far fewer Americans. In fiscal year 2015-2016 the CDC earmarked no money for suicide intervention, while spending $788.7 million on HIV/AIDS prevention and research17– even though the former kills more than the latter. The authors of a Journal of Clinical Psychology article surmised the cause of this gaping disparity is likely stigma.18
I spend a lot of time now wondering how I went from a shy but happy girl who devoured books and taped foil around my wrists, spinning until I’d turn into Wonder Woman, to the woman who turned instead into a ravaged, emaciated, hopeless, and self-loathing 41-year-old that jumped off a building this past year. Just 12 years prior I had been a thriving newspaper journalist who’d successfully steered clear of the mental health system that shamed and stigmatized me in high school. But in 2004, I decided to give that system another try when I entered a residential treatment program during a period of worsening struggle.
That decision marked the moment psychiatry swallowed me whole, and convinced me and all who knew me I was nothing but a walking bar code of DSM acronyms and pathology. I bounced from treatment program to treatment program for the next ten years; when I finally escaped the system in 2013, it was too late. My identity as “failed mental patient” was solidified, and I had glaring time gaps on my resume. I applied for hundreds of jobs; no one would hire me. I started a Web site, “A Disordered World”; it drew a small, enthusiastic audience, but no mainstream outlet would publish me and one even plagiarized me.
Living in poverty in 2015 – SSDI was, and is, my only income – evidence continued to amass that I’d never be granted entry back into mainstream life. My only viable next step, by the fall of 2015, was clear. It was time to take my life, once and for all. Death was preferable to the disgraced, economically insufferable, and solitary existence I was keeping.
Some people, including many mental health professionals, like to say suicide is a permanent solution to a temporary problem. But those of us living as members of disenfranchised, oppressed minority groups, and grappling with socio-economic hardship or psychological distress – or both – know better. Suicide is a permanent solution to a permanent problem. It is our only path to peace and dignity, an exit route from what we finally realize is a fundamentally unjust world. A world where the “American Dream” is a ruse and in which we are powerless agents futilely trying to re-charter our course, when the political ship captains would never deign to give us – the stokers shoveling coal in the boiling room – a second thought, much less a say in the ship’s path.
I believe – and the research I’ll summarize below should prove it – our suicide problem is the penultimate expression of growing multitudes of hopeless Americans; it’s citizens tired of working hard with no pay-off, while others earn millions posting selfies; it’s the voiceless speaking out in the only way now available to them; it’s driven by the same forces that made Bernie Sanders and Donald Trump, against all reason, serious 2017 presidential contenders.
The numbers back me up. A news analysis showed that death rates are highest in counties where Trump’s support was strongest.19 These are counties who’ve lost significant numbers of manufacturing jobs since 1999 and whose residents are less educated.20 It’s a tragic example of how the personal is political.
“These Americans know they’re being left behind by the economy and by the culture,” observed The New Yorker about our nation’s “epidemic of despair”.21
Robert Putnam, a professor of public policy who studies America’s new class divisions, warned about the rise in middle-aged suicide:
“This is part of the larger, emerging pattern of evidence of the links between poverty, hopelessness and health”.22
Reducing suicide to a problem of the mentally ill is one of the top myths about this inextricably complicated act, according to the aforementioned WHO report. “Although suicide can be the epilogue of many psychiatric disorders, the majority of people who kill themselves are not patients of [mental health] services,” said leading British suicidologists Stefan Priebe and Alfonso Ceccherini-Nelli.23 Outside of the United States, where psychiatrists are less tied to the medical model, you find scholars calling for an end to the “faulty connection”24 between suicide and mental illness; you find researchers who are scathing in their criticism of traditional psychiatry’s blind adherence to medicalizing suicide as the act of the mad25, particularly in light of a growing body of research linking it to economic distress.26
Inside the United States, sociological dimensions of suicide are receiving increased recognition – but you have to look to venues other than psychiatry, mainstream news coverage and political press releases to find it. Groundbreaking research being undertaken in the fields of epidemiology, cultural anthropology, public health and history is demonstrating suicide’s connection to classism, poverty, prejudice, and discrimination – which helps explain, for example, why the ethnic group with the highest suicide rate in the U.S. is American Indians.27
This chapter aims to examine the link between suicide and disadvantage more closely, and put to rest false assumptions about suicide and mental illness. It will also review the disproportionate amount of socio-economic distress and discrimination experienced by the psychiatrically disabled, to drive home my argument that it’s injustice that’s at play in the deaths of most decedents who do have histories of mental illness – not their “mental illness.” While I don’t deny there’s a small link between mental illness and taking one’s life, the evidence is overwhelming that having a mental disorder is only one of several risk factors.28
I want to demonstrate the above points to help raise the conversation about prevention to a level where truly effective policies are developed:
“A genuinely open discussion of suicide must be a wide discussion – not just a medical or public health discussion, but a social, cultural, moral, political and even religious discussion,” wrote medical ethicists Fitzpatrick and Kerridge, on the type of dialogue which must now occur.
Let me provide some information from China, as an end to this long introduction, to help drive home my point. China is the only country where women take their lives at higher rates than men.29 Suicide there is often an expression of protest or revenge against a party which has publicly shamed, abused or oppressed a person, because suicide causes Chinese perpetrators to “lose face”.30
While unfortunately in the U.S., suicide doesn’t cause anybody but its victims to “lose face,” I think it does collectively symbolize a sort of silent protest, as well as hopelessness, from a growing population of oppressed and disenfranchised, middle-aged adults. We live in a period of widely-recognized, heightened economic inequality where people at the bottom of the social ladder aren’t reaping the benefits of soaring national wealth. There is a strong correlation between low socio-economic status and suicide, as will be discussed later. We’re not going to reverse escalating suicide rates by pumping more money into treating depression; we have to attack what’s causing our national depression: social injustice.
As psychiatry professor John Werry said, “The thing that’s most likely to have an effect [on suicide] in the long run is social policies which aim to give children, adolescents, and their families a fair break in life.”31
I tried to kill myself because I knew I was never going to get that “fair break.” And I firmly believe that’s the same reason more than 43,000 Americans are dying yearly in what is an entirely avoidable tragedy – if the powerful of our country simply cared.
The author can be contacted at jeaneneharlick[at]gmail[dot]com.
Suicide = Mental illness: An insidiously harmful myth
Suicide taboo and the imperative to reverse it
Suicide and socio-economic status
Suicide, socio-economic status & the mentally ill: More disadvantaged, more oppressed
Conclusions and recommendations
1Brontë, C. (1853/2001). Villette. New York: The Modern Library, p. 179.
2Brontë, C. (1853/2001), p. 183.
3Didi Hirsch Mental Health Services (2013). Survivors of suicide attempt support group. Retrieved March 18, 2016, from http://www.didihirsch.org/survivors-of-suicide-attempt-support-group.
4Dokoupil, T. (2013, May 23). Why suicide has become an epidemic – and what we can do to help. Newsweek. Retrieved December 15, 2014, from http://www.newsweek.com/2013/05/22/why-suicide-has-become-epidemic-and-what-we-can-do-help-237434.html.
5National Center for Health Statistics. (2016). Increase in suicide in the United States, 1999-2014. (NCHS Data Brief No. 241). Hyattsville, MD: Author. Retrieved April 23 from
Tavernise, S. (2016, April 22). U.S. suicide rate surges to a 30-year high. New York Times. Retrieved April 23, 2016 from http://www.nytimes.com/2016/04/22/health/us-suicide-rate-surges-to-a-30-year-high.html?_r=0.
6The Joint Commission (2016, February 24). Detecting and treating suicide ideation in all settings. (Sentinel Event Alert, Issue 56). Oakbrook Terrace, IL: Author.Retrieved May 1, 2016 from
9National Center for Health Statistics, 2016.
10Bui, Q. (2016, May 12). Where the middle class is shrinking. New York Times. Retrieved May 13, 2016 from http://www.nytimes.com/interactive/2016/05/13/upshot/falling-middle-class.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=second-column-region®ion=top-news&WT.nav=top-news&_r=0.
11Hempstead, K. & Phillips, J. (2015). Rising suicide among adults aged 40-64: The role of job and financial circumstances. American Journal of Preventive Medicine, 48(5), 491-500.
12Kolata, G. & Cohen, S. (2016, January 16). Drug overdoses propel rise in mortality rates of young whites. New York Times. Retrieved January 18, 2016 from
Myerson, H. (2015, Nov. 4). America’s white working class is a dying breed. Washington Post. Retrieved May 19, 2016 from
13National Center for Injury Prevention and Control (2015). Suicide: Facts at a glance. Retrieved from
14Baudelot, C. & Establet, R. (2008). Suicide: The Hidden Side of Modernity (David Macey, Trans.). Cambridge, MA: Polity Press. (Original work published 2006).
15Baudelot & Establet, 2008, p. 2-4.
16National Center for Injury Prevention and Control, 2015.
17Centers for Disease Control and Prevention (2016). FY 2016 Operating Plan. Retrieved March 8, 2016 from
18Witte, T., Smith, A., & Joiner, T. (2010). Reason for cautious optimism? Two studies suggesting reduced stigma against suicide. Journal of Clinical Psychology, 66(6), 611-626.
19Guo, J. (2016, March 4). Death predicts where people vote for Trump. Washington Post. Retrieved May 19, 2016 from
21Packer, G. (2016, May 16). Head of the class. The New Yorker.
23Priebe, S. & Ceccherini-Nelli, A. Economic factors and suicide rates: Associations over time in four countries. Social Psychiatry & Psychiatric Epidemiology, 46, 975-982.
24Pridmore, S. (2015). Mental disorder and suicide: A faulty connection. Australian & New Zealand Journal of Psychiatry, 49(1), 18-20.
25Weaver, J. (2014). Sorrows of a Century: Interpreting suicide in New Zealand, 1900- 2000. Canada: McGill-Queen’s University Press.
Fitzpatrick, S. & Kerridge, I. (2013). Challenges to a more open discussion of suicide. Medical Journal of Australia, 198(9), 470-471.
26Luo, F., Florence, C., Quispe-Agnoli, M., Ouyang, L., & Crosby, A. (2011). Impact of business cycles on US suicide rates, 1928-2007. American Journal of Public Health, 101(6), 1139-1146.
Stuckler, D., Basu, S., Suhrcke, M., Coutts, A., and McKee, M. (2009). The public health effect of economic crises and alternative policy responses in Europe: an empirical analysis. The Lancet, 374, 315-23.
Case, A. & Deaton, A. (2015). Rising morbidity and mortality among white non-Hispanic Americans in the 21st century. Proceedings of the National Academy of Sciences of the United States, 112(49), 15078-15083.
Hempstead & Phillips, 2015.
Baudelot & Establet, 2008.
27National Center for Injury Prevention and Control, 2015.
29World Health Organization (n.d.). Suicide rates: Data by country. Retrieved February 25 from
30Baudelot & Establet, 2008.
31Weaver, 2014,p. 230,as cited in Pridmore, 2015.
Source URL: http://adisorderedworld.com/2016/05/suicide-americas-deadly-bellwether-part-1/
by Jeanene Harlick | December 23, 2015 10:27 am
I won’t be celebrating much this Christmas – even though I know I should. And the New Year will bring me no hope for fresh starts, resolute changes, nor a healthier life. Such hopes started dying long ago, and were permanently extinguished October 23, when I tried to take my life in a way I never thought I could.
The worst part is: I survived.
Let me tell you something about surviving a violent suicide attempt that nobody will. You don’t feel grateful you’re alive, or that you survived for a reason which suddenly returns purpose to your life. It doesn’t bring into sharp focus the things which really matter – you never cared about superficial ambitions in the first place.
The problems which drove you to be one of the .5 percent of people who go from thinking about pulling the trigger1, or dropping off the subway ledge, to actually doing it – don’t just magically disappear if you survive. No, if I was going to give anyone a reason not to kill themselves it wouldn’t be some lie like, “This is temporary; you’re going to feel better,” or “You have a bright future, things will work out.” I’d tell the suicidal person not to pull the trigger because life afterwards – physically and mentally, at least in my experience – is even shittier than it was before. Because the fact is – as much as you’d rather not hear it, during this jolly holiday season – we live in a shitty and unfair world, and the promises presidential candidates are selling you about reducing income inequality, or so-and-so prejudice, are as illusory as the commercials which tie happiness and the American dream to a good-looking car.
Two months ago, confronting the force of my powerlessness and lack of agency in this fundamentally unjust world, I jumped off the roof of my apartment building. I broke bones and joints in every part of my body. I shattered my jaw and incurred fractures throughout my skull. I may never have full use of certain limbs again; the bones throughout my body are now tied together with metal rods and screws. Where once I was average looking, my face is deformed. I’m missing too many teeth to count, or chew, and have lost significant weight. I spent a month in the hospital undergoing a series of painful surgeries, and the past month sitting in a nursing home – a 41-year-old among elderly people, waiting desperately for my bones to heal enough to allow me to return home.
And there’s not a fu—ing person to talk to, who really gets what I – or anyone with a similar experience – is going through, if you survive the gun shot, or the jump. You search for support groups – and there’s a multitude for family members of suicide victims. But for survivors? None. Because we’re the bad ones, the selfish and cowardly ones; we’re the social taboo that nobody wants to talk about because we speak – loudly – the reality of this American life.
And so you curse yourself for not having gotten the job done right in the first place.
There are many myths about traumatic suicide, as well as surviving it. One is that suicide is primarily a problem of the mentally ill; the second is that surviving leaves you thankful, reinvigorated by epiphanies that your life does have meaning and purpose, that you do have things to live for, and that your future’s full of hope. I feel none of those things. On the contrary, life following my attempt – thus far – is exponentially worse. I feel lost, and meaning and purpose of any kind is elusive.
The experience of physical trauma, intolerable pain, malfunctioning organs, oozing body parts, catheters, complete immobility, and a face swollen the size of a pumpkin has left me wondering whether existence is no more than the random interaction of cells and neurons, whether I’m really just a pile of flesh and bones stripped of what was always an imaginary, culturally-constructed soul.
The surfeit of passion I once had for so many things – the force which, in actuality (not my so-called “mental illness”) has driven the trajectory of my life, including the walk up my apartment stairs two months ago – is gone.
I’d like – and at first I thought I would – to believe my survival is proof that maybe what everyone’s been telling me for years is true – that I’ve got so much to offer”; that I’m “talented” and “here for a reason”; that I’m “special” and “loved” in a way many aren’t because of my “unique” heart and mind.
But I just don’t feel it and don’t know that I ever will. I don’t feel amazed at the body’s ability to heal or survive nor confirmed it’s a brilliantly-designed machine marking evidence of some higher order. All I feel is that my life is now more irreparably messed up than ever – but worse, because I’ve caused my family unspeakable agony and pain, ruined their Christmas, and become an even greater financial and emotional burden than I was before that October night. And that burden was already very heavy.
Suicide – and there is now an abundance of evidence to support this – is fundamentally a socio-political problem, and I’m tired of people blaming my head or genes for my problems when it’s prejudice, stigma, classicism, poverty, agism, and being denied the simple dignity of making an honest living, no matter how many resumes I send out, that made me jump off the roof. Not some DSM-V label.
According to the World Health Organization (WHO), the belief that suicide is confined to the mentally ill is one of the top myths2 about this complicated and growing “epidemic” – America’s most “untamed” cause of death, according to a 2013 Newsweek article3. The reality is many people who die by suicide have never been diagnosed with a mental disorder and – vice-versa – many people who have been so-labeled do not experience suicidal thoughts or behavior4.
Some people, including mental health professionals, like to say suicide is a permanent solution to a temporary problem. Well, that is bullshit. For many of us living with socio-economic or psychological distress – or both – suicide is a permanent solution to a permanent problem. It is our only path to peace, and dignity.
When Brittany Maynard, a 29-year-old woman with incurable brain cancer took her life a year ago, most didn’t fault her for ending an existence which was heading from bad to far worse. Suicide is no different for people like me – why should we not have the same right-to-die as a person battling something as painful and excruciating as Maynard? Because I can guarantee you – the psychological, financial and moral anguish I experience about my inability to obtain work; the ceaseless burden I am to my family; my suffocating loneliness; and that society’s prejudice blocks my ability to earn a paycheck and contribute to this world – is the emotional equivalent of dying a slow and agonizing death.
Due to financial circumstances and my sole income being SSDI, I am in urgent need of aid to pay for costs related to my ongoing rehabilitation, particularly dental repair. My injuries are so severe and complicated that not even my long-time, excellent dentist can help me; he has been forced to refer me to an oral surgeon who will not – as my dentist was – be willing to repair my jaw and injured teeth at little or no cost. Given my history of anorexia, my continued inability to chew is significantly impeding my recovery. If you feel moved by this difficult-to-pen article – which I was very hesitant to share – or find it illuminating, and are in the position to give – please consider donating at my GoFundMe site. Please also consider sharing this post via social media.
Over the past decade, while life expectancy has increased and homicides have decreased5, America’s suicide rate has increased by almost 20 percent every year – that amounts to at least 400,000 deaths, nearly the number of people killed in WWII and the Korean War combined6. Death by self-harm hit its highest rate since 1987 in 2012 – 12.6 deaths per 100,000 Americans, according to a Centers for Disease Control and Prevention (CDC) report released last year. The report also revealed suicide to be the only top-ten cause-of-death to rise during 2011-2012, in contrast to illnesses such as cancer or stroke, whose death burden decreased7.
And, for every suicide completion, there are many more attempts. A prior suicide attempt is the “single most important risk factor for suicide in the general population, according to WHO8.
Suicide is a global concern as well. Last year WHO released a landmark report on rising suicide rates, highlighting the need to recognize it as a worldwide public health issue, and emphasizing the imperative to increase prevention efforts in all countries9. Globally, more than 804,000 deaths by suicide occurred in 2012 – an estimated 60 percent increase since WWII – or 11.4 per 100,000 people; suicide accounts for 50 percent of all violent deaths in men and 71 percent in women. In developed countries, self-harm is the leading cause of death for people ages 15-49 – higher than cancer and heart disease10.
Said the WHO report, “There is no single explanation of why people die by suicide. However, many suicides happen impulsively… Social, psychological, cultural and other factors can interact to lead a person to [it], but the stigma attached to… suicide means that many people feel unable to seek help. Despite the evidence that many deaths are preventable, suicide is too often a low priority for governments and policy-makers.”
In the United States, a suicide occurs every 13 minutes11. Almost 40,000 lives are lost to it yearly – more than road accidents; it is the 10th leading cause of death overall, and the top cause of “injury death” in America12. Despite all this, far greater sums of research money from organizations like the CDC and the National Institutes of Health continue to be devoted to finding cures for diseases and social problems which kill far fewer Americans13.
If you don’t care about suicide after hearing statistics like the above – and most researchers believe suicide is widely under-reported – or because you mistakenly believe it’s the act of cowardly or selfish people (more on that later), maybe you’ll care about this: Every suicide costs society about $1 million in medical costs and lost work, on top of emotionally traumatizing at least 10 other loved ones and friends14.
Perhaps most importantly, the present suicide scourge is not simply a passing trend explained away by events like the Great Recession; according to a Rutgers University paper analyzing 80 years of suicide data, Americans born after 1945 show a higher suicide risk than expected, and everyone is heading toward a higher suicide rate than the age group most responsible for driving current statistics15.
And which U.S. age group is that? The middle aged, according to the CDC and a 2012 Global Burden of Disease Report16. A more careful analysis of the numbers this past fall – by two Princeton economists – showed that mortality rates for U.S., non-Hispanic whites ages 45 – 54 suddenly stopped declining in 1998, while that age group in other rich nations has continued its post-1970, downward trend of a 2 percent, yearly decrease in deaths. Suicide and drug poisonings were identified as the driving forces of increasing, American mid-life mortality and morbidity. Wrote report authors Anne Case and Angus Deaton:
“No other rich country saw a similar turnaround… If the white mortality rate for ages 45 – 54 had held at their 1998 value, 96,000 deaths would have been avoided from 1999 – 2013… If it had continued to decline at its previous rate, half a million deaths would have been avoided…. [This all] points to increasing distress in this population.”
This isn’t surprising, when you consider the research emerging from sociology and psychology – some of it summarized below – and the day and age we Americans live in: The impossible, media- and social-media-driven criteria for success; increasing economic and class disparities; high rates of divorce; the stigma crippling the “mentally ill” (or, as I prefer to call us, people who make others uncomfortable because we threaten established norms); prejudice of all sorts; and the complete collapse of the American promise that you can make it in this world if you simply work hard. Problems, in other words, which tend to fall on the shoulders of adults and family breadwinners.
Suicide is a multi-faceted problem which can’t be boiled down to one factor – unemployment, mental illness, gun access, or whatever societal ill is the scapegoat of the moment. As Tony Dokoupil, in Newsweek, eloquently put it, “It’s a problem with a broad base and terrible momentum, a result of seismic changes in the way we live… We know, thanks to a growing body of research on suicide and the conditions that accompany it, that more and more of us are living through a time of seamless black… We’ve reached the end of one order of human history and are at the beginning of a new order entirely… The takeaway is darkly profound: we’ve become our own greatest danger.”
While psychiatry, mental health practitioners and politicians seem bent on treating and researching suicide as a mental health issue, sociologists and public health experts are recognizing the need to address suicide for what it is: the symptom of a very sick society – rather than of sick, deviant, or morally bereft individuals.
In a 2011 article surveying suicide research in the Annual Review of Sociology17, authors noted suicide often reflects disintegrating levels of social integration and cohesion; they emphasized the need to treat suicide as a “significant social problem in and of itself,” to embrace the complexity of suicide, and that sociological understandings of suicide “are not only relevant but essential to prevention efforts.” Nonetheless, sociological contributions continue to be mostly ignored in suicide prevention and research, with the act and risk factors reduced to individual problems surrounding mental illness – even when social and contextual factors are obliquely acknowledged. In psychiatric research, allegedly hard-wired, biomedical predispositions presumed to be fundamental risk factors in suicide tend to ignore how brain processes are flexible, the result of dynamic interactions between neurons, genes, society and the environment, the authors said:
“Given this individualistic frame, biomedical and psychiatric perspectives have become paradigmatic, with… prevention strategies focused aimed at high-risk individuals… [The solutions] which flow from this framework tend to neglect social and ecological determinants… We argue the present situation is problematic for sociology, for the scientific research agenda on suicide, and for the creation of solutions to this pressing social problem. In an age when biomedicine and genomics tend to dominate scientific and public policy debates” a multidisciplinary approach to suicide research and prevention is paramount, the authors wrote. They called for greater collaboration between sociology and the fields of psychology, biomedicine and public health in understanding suicide; and they admonished their colleagues to put more effort into its study – of more than 30,000 academic articles on suicide since 1980, only about 400 (1.3 percent) were sociological in nature, according to a 2009 review.
In Suicide: The Hidden Side of Modernity (2006), social anthropologists Christian Baudelot and Roger Establet, surveying past and current studies, note how the failure of most suicide research or national prevention plans to examine the role shifting socio-cultural factors and values, as well as country wealth, plays into rates, factors into why many nations have made minimal gains in curtailing deaths.
“It isn’t society that sheds light on suicide, but rather suicide that sheds light on society,” Baudelot and Establet wrote, emphasizing a need to go beyond the limited set of demographic statistics most sociologists and economists rely on to draw conclusions about why suicide rates are what they are.
And In Suicide and Culture: Understanding the Context (2012),Eminia Colucci and David Lester argue the increasing domination of biological approaches in suicide research and prevention, at the expense of socio-cultural understanding, is severely harming the ability to stop people from killing themselves.
Sociological risks, according to WHO, include discrimination, a sense of isolation, conflictual relations, financial loss, irresponsible media reporting which sensationalizes suicide and increases the risk of “copycat” suicides, and stigma against people seeking help for suicidal behaviors. I’ve experienced all of these things.
The Newsweek article I’ve repeatedly referred to highlighted additional risks corroborated by realms of research – risks which rarely have anything to do with us “crazy” folks.
Some of the groundbreaking research featured was that of psychologist and leading suicide researcher Thomas Joiner, whose father killed himself and who’s devoted his life to finding commonalities among the dizzying array of risk factors for self-inflicted death. Joiner’s meticulous studies have succeeded in identifying three circles of risk which – when they converge in what amounts to a psychological Venn diagram – lift a person from watching to sitting in the eye of a suicide tornado.
“What’s alarming is that each condition itself isn’t extreme or unusual, and the combined suicidal state of mind if not unfathomably psychotic… Joiner’s conditions of suicide are the conditions of everyday life,” wrote Dokoupil.
It’s obvious why suicide is becoming America’s defining social and political act when you see the three conditions Joiner found: 1) An overwhelming feeling of not belonging – with anyone or anywhere, exhibited through such things as social isolation, exclusion from social groups, loneliness, and lacking connection. This is why suicide rates are higher among amongst unmarried and divorced people. 2) Feeling one is a burden and liability to others, that they lack effectiveness, and are useless, non-contributing members of society – a feeling I, along with the first condition, deeply relate to. This second condition helps explain why suicide is higher among the unemployed – something I have long battled and berated myself for, as numerous attempts to find work over the past five years have proved fruitless.
And the final condition, when combined with the first two, which Joiner found creates a deadly vortex of almost insurmountably high suicide risk, is 3) Fearlessness, or the ability to die – an ability which develops with time and gradual acclimation to pain, because contrary to popular belief, it’s not easy or cowardly to kill yourself: It takes “a kind of courage… a fearless endurance,” Joiner said18.
While I’ve experienced extreme and incapacitating suicidal ideation for years – including several attempts to die by drug overdose – it’s always been this third condition, fearlessness, which has stopped me from doing something as concrete as jumping off a building. And I long considered myself a coward – and thus hated myself even more – for not having the courage to follow through with a sure-fire, violent attempt. Because I did, and do still believe, that my family and friends (and society as a whole) – while initially aggrieved – would be much better off without me.
I don’t remember much about the night of October 23, or the convergence of events, longstanding circumstances, and obsessive ruminations which pushed me past the edge of fear. I know the suicide attempt wasn’t planned, and the urge came on suddenly – which is unusual for me. All I know is once that fever struck, it was so overwhelming, so absolutely what I HAD to do, that I had to do it immediately, before I lost my nerve.
I had started making dinner when the feelings hit – I quickly tidied up so that my family wouldn’t find a complete pigsty when they learned of my death. I wrote a quick note. Then I poured a shot of rum – to help stave off any creeping doubts or fear – carried it up to the roof with me, downed it, and slowly stepped over the ledge onto my tiled roof top, and jumped.
I fully intended to die that night – it wasn’t my usual, half-ass, suicide attempt. I was done with life, tired of life, and exhausted from trying to re-make myself over and over again. I was tired of continually attempting to navigate – and succeed – in this world; but always falling, and dragging myself back up.
I didn’t have the strength to pull myself up anymore. My psyche and my heart were broken, and hope – as mentioned earlier – had long vanished. I was tired of being alone; tired of being a burdensome daughter and shameful aunt; and tired of not having the writing career – in whatever meager form – that I once had and could never have again.
I never, ever foresaw or considered the scenario in which I find myself now.
I hope that my state of mind, and my depression lifts. But do you know what surviving a suicide attempt has taught me so far? That I was right all along. That the world is irreparably messed up. That it doesn’t matter how hard you try – some people are born into good fortune, another few just get lucky, and a few somehow get the job, the family, and the sense of purpose they deserve when they work hard. As for the rest of us – an increasing lot, in a marketplace where even a Bachelor’s Degree means almost nothing; where powerful connections, beauty, money, pedigreed families, high class, fame, or thousands of Twitter followers are the true social currencies – we toil like hamsters in the proverbial wheel knowing our lives will always be struggle, poverty, more bad days than good, more heart ache than happiness, and living with the pain of talent unspent. We want to support ourselves; we don’t want to live off the government; we desperately want to contribute to society and help others.
America’s suicide problem is the penultimate expression of the growing multitudes of the hopeless; people who used to feel great passion about the possibilities of life, this world, and their potential to be part of its ongoing creative, cultural and spiritual evolution – but who are continually denied this humble right. Suicide attempts are individual citizens speaking, in the only way now available to them, that: “We give up. We will never be heard; our ceaseless work will not pay off – socially or financially. We’re tired of working so hard where others succeed simply by posting an eye-catching selfie. We’re really, really tired, and see no point in playing a game we – finally – realize can’t be won. So you win, the one percent. You win.”
We know that our lives pass unnoticed; we’ll die alone; our obituaries won’t grace any newspapers; and that politicians’ chess games will never translate to change in our own lives.
I now wonder whether all those “intimations of immortality” I used to feel, all those groundswells of passion and fervor and other-worldly purpose were all just straws of purpose I grasped, vapors that were never any more real than the masses’ comfort gods. I wonder whether art and words, subtle beauties and gestures, and the children of this world – the things which used to be my source of “higher being” and grounding, weren’t just as much hokum as the other, so-called “sacred.” Because even though I’m lucky in many respects – no brain damage, no paralysis, excellent, Medicare-covered surgeons – the short, frail life of the human body, and the culturally-constructed, storybook lens through which we view and experience life, and falsely imbue it with meaning, haunt me. I wonder if scientists and atheists and matter-ists and all those folks haven’t been right all along – there is no beauty or love, no greater, hidden messages encrypted on the surfaces of our life and nature and family, coyly waiting to be found – as I used to think. All there is of human existence, it seems now, is atoms. I always knew this was a possibility but had hoped my art and my Dubliners moments indicated otherwise – but now it appears that may not be so.
Maybe I’m still suffering from trauma-induced brain fog, combined with great difficulty and reluctance to process that October night. Nonetheless – this is not how I imagined things going down; like I said, that dive off the roof was supposed to work. If I had ever considered an afterward, an alternative ending – this feeling of nihilism, this complete bewilderment as to where the hell in the world do I fit now – most certainly would not have been one of them.
Due to financial circumstances and my sole income being SSDI, I am in urgent need of aid to pay for costs related to my ongoing rehabilitation, particularly dental repair. My injuries are so severe and complicated that not even my long-time, excellent dentist can help me; he has been forced to refer me to an oral surgeon who will not – as my dentist was – be willing to repair my jaw and injured teeth at little or no cost. Given my history of anorexia, my continued inability to chew is significantly impeding my recovery. If you feel moved by this difficult-to-pen article – which I was very hesitant to share – or found it illuminating, and are in the position to give – please consider donating at my GoFundMe site. Please also consider sharing this post via social media.
1“Why suicide has become an epidemic – and what we can do to help,” by Tony Dokoupil in Newsweek, May 2013.
2“Preventing suicide: A global imperative – Myths,” World Health Organization, 2014.
3See Newsweek, May 2013.
4See “Preventing suicide: A global imperative – Myths.”
5“U.S. suicides hit highest rates in 25 years,” by Casey Leins in U.S. News & World Report, October 2014; and,“40,000 suicides annually, yet America simply shrugs,” by Gregg Zoyoya in USA Today, October 2014.
6See Newsweek, May 2013.
7See U.S. News & World Report, Oct. 2014.
8“Preventing suicide: A global imperative,” World Health Organization, 2014.
9See “Preventing suicide: A global imperative.”
10See Newsweek, May 2013.
11See U.S. News & World Report, Oct. 2014.
12See Newsweek, May 2013.
13See USA Today, Oct. 2014.
14See USA Today, Oct. 2014.
15-16See Newsweek, May 2013.
17Wray, M., Colen, C., & Pescosolido, B. (2011). The sociology of suicide. Annual Review of Sociology, 37, 505-28.
18See Newsweek, May 2013.
Source URL: http://adisorderedworld.com/2015/12/no-room-in-the-inn-suicide-survivors-social-and-emotional-wasteland/
by Jeanene Harlick | October 14, 2015 4:39 am
Mass shootings’ most invisible victims: the severely mentally ill. We are not the villains.
Three…. Two… One…. BOOM.
That’s about how long it takes for the airwaves to explode with language – from TV reporters, political pundits, victim families, and our elected leaders – which slander the mentally ill following mass shootings such as the one which occurred in Roseburg, Oregon.
You had Hardball’s Chris Matthews – the epitomic liberal, who theoretically should be the disenfranchised’s defender-in-chief – denouncing all mentally ill individuals as “nuts” whose civil rights should be obliterated.
When WDBJ News reporter Alison Parker was killed on-air in August, there was her father telling Fox News and CNN that evening:
“I’m not going to let this issue drop. We’ve got to do something about crazy people getting guns.”
Did you know the severely mentally ill are no more likely to commit acts of violence than the general public? Just 3 – 5 percent of violent acts are committed by the mentally ill1, and only 2 percent of those acts involve weapons2.
Did you know that, on the contrary, the severely mentally ill are ten times more likely to be victims of violent crime than the general public, rather than commit them? This includes victimizing ourselves – whether through suicide or self-harm3.
But the actual facts surrounding the mentally ill don’t really matter to pundits, family members, the general public, or politicians pandering to the gun lobby.
The facts matter a hell of a lot to me. Because I’ve been labeled “severely mentally ill” for more than a decade, and its mythical association with violence is a primary reason why I experience prejudice and discrimination on a daily basis; why I can’t get a job to save my life; why I live in poverty – despite holding college degrees and being a former, experienced journalist; and why I often want to kill myself – because society refuses to allow me to live a life with dignity or meaning, due to the opportunities I’m continually denied.
Research suggests mass shootings like those which took place at Sandy Hook, Virginia Tech, Aurora, Colorado, and now Umpqua Community College are increasing mental health stigma and reinforcing negative stereotypes that all mentally ill are dangerous and violent4. Research also shows mainstream media’s coverage of mental illness – including reporters’ tendency to focus on high-profile, extreme, or violent cases – plays a significant role in the negative stereotypes the general public harbors toward us today.5
This is not fair and it must stop.
People with mental illness have a hard enough time as it is: we experience disproportionate levels of employment and housing discrimination, among other things6. The incorrect belief that most of us are a public danger or menace – “time bombs” ready to explode in violence – plays a central role in the prejudice directed at us7. During the past four decades, negative attitudes rooted in these unfounded beliefs have only intensified, resulting in greater social ostracism8. Where once the “mad” were simply viewed as another form of human diversity, we are now viewed as almost subhuman, atavistic beings9.
Let me tell you something: Guns don’t kill people. The mentally ill don’t kill people.
People kill people. All sorts of people kill people. Period.
Gun violence of any kind – and in particular mass shootings – are tragic and I don’t exactly blame people, particularly victim families, for the unintentionally prejudicial language they use, nor the uninformed policies they advocate for, in efforts to make meaning of the chaos and heartbreak they’ve experienced or witnessed.
But I do blame the media for using – or failing to qualify or question – derisive language which lumps all severely mentally ill individuals together, and implies we’re all deranged, all prone to violence, and all should have our civil rights stripped. That is not the function our fifth estate is supposed to serve.
I protest the media’s persistent refusal to call such language what it is (prejudice), and to remind its viewers that terms like “crazy” and “nuts” are pejorative slurs whose use reflects and perpetuates entrenched, negative attitudes toward people like me – a group of almost 14 million individuals10 (1 in 17 Americans) who come in many different shades, and whose diversity of mind should be respected just as much as ethnic minorities’ diversity of race and color, or the LGBTQ community’s diversity of gender or sexual orientation.
Do you want to know how it feels when people talk about the severely mentally ill as Chris Matthews, and many others did, last week?
It feels like I imagine a Black person feels when a racist calls him or her a “nig#er.”
How would you react if the father of a daughter fatally shot by a non-White person, in public, said in the days following the shooting:
“I’m not going to let this issue drop. We’ve got to do something about chi#ks getting guns.”
“It’s senseless that her life… was taken by a sp#c with a gun.”
“He was a nig#er that got a gun, and that’s part two of where we’re going with this.”
I think it’s pretty fair to say the public – and media – reaction would be one of outrage.
Replace “ch#nk”, “sp#c” and “n#gger” with “crazy people,” “crazy person,” and “crazy man,” respectively, and you get what Andy Parker, Alison Parker’s father, said on TV after her shooting.
Why do we not witness the same level of outrage when the media, pundits, politicians and victim families refer to the mentally ill with equally derogatory slurs?
If you look at the origins of the word “crazy,” you may begin to understand why this term is just as pejorative as the epithets sometimes used to refer to other minorities.
First employed routinely in the 16th century, according to the online Oxford English Dictionary11, the connotations of “crazy” then included “flawed,” “damaged,” impaired, “unsound,” “diseased,” “infirm,” “demented,” “cracked,” and “deranged.” Today, “crazy”’s contemporary, dictionary definition still includes the terms “having flaws or cracks” and “deranged.” Those are anything but neutral terms.
People who negatively judge or assume things about others, on the basis of their different skin color, are called racist. People who judge others on the basis of their different mind – minds which don’t conform to culturally-constructed definitions of “sane” – are guilty of an equally hateful form of prejudice: they are sanists. We live in a nation which tolerates every form of diversity except diversity of the human psyche.
Why does it matter how we talk about mental illness – and laws associating gun violence with it – following events such as Roseburg’s?
It matters because the prejudice this discourse fuels contributes to the ongoing discrimination and denied opportunities at least 14 million Americans experience today; threatens doctor-patient confidentiality; criminalizes the mentally ill; and increases the self-stigma, humiliation, shame and feelings of worthlessness the mentally ill internalize when we are talked about in language which portrays us as defective beings. (The Gun Control Act of 1968 literally refers to the mentally ill as “mental defectives.”) Studies have found all of the above has twice as large a negative impact on our lives than the mental illness itself12. In other words, it’s prejudice which fuels and makes permanent our “severe mental illness,” increasing our societal burden.
And that’s costing all of you tax payers more money.
The prejudicial rhetoric also matters because it leads to policies which erode our rights, such as lowering the threshold for involuntary commitment, as many states have over the past few years. Legal experts agree that gun laws which are based on predicting violence based on prospective, clinical assessments are a violation of civil rights13.
And the language we use matters because these resulting policies cost the nation more in the long run. Laws which threaten doctor-patient confidentiality deter treatment seeking, and that results – among other things – in more mentally ill landing in expensive, government-funded institutions or homeless shelters, and living off of SSDI – all paid for by your tax dollars. The policies being passed today also place a greater burden on our health care system – which comes at the expense of your health insurance premiums.
If you don’t care that you’re a bigot, fine. But I bet you care about what’s coming out of your paycheck, or how much you’re shelling out for health insurance. And it’s only going to get worse so long as the same, recycled banter that characterizes media coverage following public shootings continues.
President Obama – one of the few who appreciates the complexity of American violence, and who did not vilify the mentally ill last Thursday – lamented the “routine” media coverage and politics which inevitably follows mass shootings.
Douglass County Sheriff John Hanlin also called on the media to – God forbid – do the unthinkable: refuse to focus coverage on the shooter, thereby glorifying and sensationalizing him.
TV news and cable stations have aired Hanlin’s invocation repeatedly – and every time they do, his clips are sandwiched between coverage that digs up as much information as possible about the shooter and his background, giving that 26-year-old exactly the infamy the sheriff pled the media deny him.
That, folks, is “crazy.”
Responsible media coverage in the wake of mass shootings would start with two things:
1) Separate dialogue about gun policy reform from mental illness, as researchers and mental health organizations have demanded – including the American Psychiatrist Association’s (APA) president just this past weekend14, and 2) Focus on the underlying, socioeconomic disparities, discrimination, addiction problems and gun access which are the true, primary drivers of the violence which plagues our nation.
As I mentioned above, research shows that mental illness, in and of itself, rarely leads to gun violence. What does research show? That lower socioeconomic status, being young and male, substance abuse (both alone and co-occurring with untreated mental illness), and a history of violence or domestic abuse are the major demographic and economic determinants of gun violence15. Killings such as those in Aurora, or the man who killed six people and injured Gabrielle Giffords in Arizona – shootings in which mental illness did play a role – represent only a small fraction of gun homicides in the United States16.
United States citizens have far greater access to high-capacity, semi-automatic weapons than people in any other Western nation. Despite making up only 5 percent of the world’s population, United States citizens own 50 percent of the world’s guns17. We boast the highest number of privately owned guns in the world.
Public policy, criminal justice, and mental health researchers who’ve actually studied the role – or lack thereof – mental illness plays in the United States’ mass shooting problem say laws which focus on limiting access to firearms for people with mental illness are unlikely to be effective. Instead, gun reform is most likely to increase public safety if it limits access to firearms for individuals with a history of criminal or violent behavior, or people battling substance abuse who are deemed to be at an elevated risk for violence18. Experts also recommend repairing the significantly fragmented mental health treatment system, including increasing services19, forming alliances with gun owners to provide better education about safe storage of firearms20, closing gun show loopholes, and gun-free college campuses and hospitals21. The APA’s president also this past week recommended exploring temporary, firearm restraining orders for individuals deemed an imminent risk to themselves or others.
I’m really tired of being talked about and treated like the 3/5 of a human being I’m basically considered today, and I’m tired of the media getting away with inflaming the discrimination and prejudice I live with. The different-minded are the only minority group in this nation it’s completely politically correct to disparage and oppress. We are the lepers of this country, America’s “untouchables.”
Over the past five decades, the U.S. has recognized the equality and civil rights of gay people, transgender people, the physically disabled, and racial, religious and ethnic minorities.
Now it’s our turn. Now it’s time everyone recognize the United States’ most unrepresented, invisible and oppressed minority group: the severely mentally ill. Stop blaming and scapegoating me for problems our politics, and many in the media, have played a significant role in creating. Stop slandering me on the airwaves. And start affording me the rights my constitution and the Americans with Disabilities Act entitle me to.
As Patrick Corrigan – who helped found the National Consortium on Stigma and Empowerment – wrote in a 2005 book, invoking Dr. Martin Luther King, Jr.’s “I Have a Dream” speech:
“Some readers might blanch at using Dr. King’s noble verse to make sense of the vision needed to overcome mental illness stigma. But for many advocates, the prejudice related to psychiatric illness is no less insidious or heinous… I dream of a time when people are judged by the merit of their character, not by the diagnosis in their chart or the symptoms with which they struggle22.”
Please consider donating, using the “Donate” icon at the very bottom of this page, if you think I should get paid for my work, like any other journalist (this site is not a blog, as a look at any recent article can demonstrate). “A Disordered World’s” continued existence is at stake. Most importantly, however, thank you for your time and readership, regardless of your ability to support my writing.
1“Mental Health Myths and Facts.” U.S. Department of Health and Human Services: http://www.mentalhealth.gov/basics/myths-facts/
2Goode, E., & Healy, J. (2013, February 1). Focus on mental health laws to curb violence is unfair, some say. New York Times. http://www.nytimes.com/2013/02/01/us/focus-on-mental-health-laws-to-curb-violence-is-unfair-some-say.html
3Suicide accounts for twice as many deaths as homicides, and more than half of suicides are committed with firearms, according to CDC’s National Center for Injury Prevention and Control. Suicide is the tenth leading cause of death in the nation.
4Corrigan, 2004; McGinty, Webster & Barry, 2013; Pescosolido, Monahan, Link, Stueve & Kikuzawa, 1999, as referenced in: Rosenberg, J. (2014). Mass shootings and mental health policy. Journal of Sociology & Social Welfare, XLI(1), 107-121.
5Corrigan, P. (2005). Mental illness stigma as social injustice: Yet another dream to be achieved. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 315-320). Washington, DC: American Psychological Association.
6While the majority of people with mental illness want – and are able to – work, less than 15 percent are able to obtain employment. People with psychiatric disability experience far greater discrimination than those with physical disabilities; our unemployment rates are 3 – 5 times higher than the general population (See Corrigan & Kleinlein, Orovwuje, P.R. & Taylor, A.J.W references.)
7 See: <ahref=”http://depts.washington.edu/mhreport/facts_violence.php”>http://depts.washington.edu/mhreport/facts_violence.php
8Corrigan, P. & Kleinlein, P. (2005). The impact of mental illness stigma. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 11-44). Washington, DC: American Psychological Association; Orovwuje, P.R. & Taylor, A.J.W. (2006). Mental health consumers, social justice and the historical antecedents of oppression. In, A.J.W. Taylor (Ed.), Justice as a basic human need (pp. 95-111). New York: Nova Science Publishers, Inc.
9See Watters, E. (2010). “The shifting mask of schizophrenia in Zanzibar,” in Crazy Like Us: The Globalization of the American Psyche. New York: Free Press; and Foucault, M. (1988). Madness and Civilization. New York: Random House.
10National Alliance on Mental Illness (2013). Mental illness facts and numbers: http://www2.nami.org/factsheets/mentalillness_factsheet.pdf
11Entry for “Crazy, adj.,” accessed at the online version of the Oxford English Dictionary http://www.oed.com.ezproxy.plsinfo.org:2048/view/Entry/44007?rskey=DNyHqc&result=2#eid
12Orovwuje & Taylor (2006); and Phelan, J.C., Link, B., Stueve, A., & Pescosolido, B. (2000). Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? Journal of Health and Social Behavior, 41, 188-207.
13Rosenberg, J. (2014). Mass shootings and mental health policy. Journal of Sociology & Social Welfare, XLI(1), 107-121.
14American Psychiatric Association (2015, October 3). APA President calls for gun control measures in wake of Oregon tragedy. Psychiatric News.
15Rosenberg (2014), and American Psychiatric Association (2015).
16See Goode & Healy (2013), above.
17United Nations Office on Drugs and Crime (2007). World Drug Report. http://www.unodc.org/pdf/research/wdr07/WDR_2007.pdf
18See Rosenberg (2014), and Goode & Healy (2013).
19Goode & Healy (2013).
20U.S. Department of Health and Human Services (HHS) Office of the Surgeon General and National Action Alliance for Suicide Prevention. (2012, September). 2012 National Strategy for Suicide Prevention: Goals and Objectives for Action. Washington, DC: HHS.
21American Psychiatric Association (2015).
22Corrigan, P. (2005). Mental illness stigma as social injustice: Yet another dream to be achieved. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 315-320). Washington, DC: American Psychological Association.
Source URL: http://adisorderedworld.com/2015/10/the-hypocrisy-of-the-liberal-media-the-op-ed-on-a-topic-no-one-will-publish-except-if-its-by-a-best-selling-privileged-author/
by Jeanene Harlick | September 15, 2015 11:53 am
I am writing to let you know that, to my deep regret, I must indefinitely suspend the investigative reporting and writing on eating disorder treatment and other, mental health issues I’ve been publishing on A Disordered World. Since winter, I’ve poured hundreds of hours of unpaid work into the research and writing of the several articles I’ve written. I am enormously gratified that literally thousands of families throughout the world have found my articles helpful as they try to separate myth from fact in determining how to best-treat someone with a severe eating disorder. I have many additional, critical issues related to this subject which I’d intended to write about in the coming months. However the work I’ve been doing has come at the expense of my mental, physical and financial well-being. So while it causes me great distress, I’ve decided to take some indefinite “time off” from writing, to restore my health and financial sustainability. A Disordered World’s current content will remain online for anybody to access.
Money was the last thing on my mind when I started working on the stories I began posting in May. I researched and wrote those stories as a public service, to shed light on a form of treatment that has no scientific evidence to support it, and which is endangering the lives of potentially millions of individuals suffering from severe and persistent, eating disorders. Nonetheless, I am a single woman trying to live off of SSDI in one of the most expensive metro regions in this nation. I can not afford to continue to work for free, especially when it is coming at the expense of my health and recovery, and when my articles appear to hold little chance at gaining a wide audience or spurring reform within the status quo — the unregulated and dangerous for-profit, eating disorder residential centers which continue to hold sway for this mental illness in the United States.
To the hundreds of individuals who have publicly and privately commented on my stories or thanked me, I want to say: I am grateful to every single one of you. It brings me inexpressible happiness if my stories have validated anyone else’s experience, or helped lead individuals to appropriate forms of treatment which prevented them from getting sucked into the revolving door of institutionalized, eating disorder care. Your overwhelming response to, and reading of, my articles has made me feel my life is worth living again – has given me hope that maybe I still have something to offer this world.
Before I suspend my writing, however, I must alert you to some urgent issues.
First, and foremost, if you agree the for-profit, private, residential treatment industry needs reform and accountability, I implore you to write to your legislative representatives regarding the Anna Westin Act by October 1. That is the deadline to submit comments on this bill, known as H.R. 2515 in the House of Representatives, and S.B. 1865 in the Senate. (In particular, if you live in the states of Florida, New York, California, Iowa, New Jersey, North Carolina, Pennsylvania, Illinois, Minnesota, New Hampshire, West Virginia, or Wisconsin, contact the co-sponsors of this bill listed at the end of this column.)
If you live near Washington, D.C., or have the means to travel there, you can also attend the “March Against Eating Disorders” event on Oct. 27, or the Eating Disorders Coalition’s Lobby Day on Oct. 28, to provide a dissenting voice to the thousands who will be advocating for approval of “Anna’s Law” in its present form.
I cannot underestimate the import of the Anna Westin Act. The eating disorder treatment industry – and its advocacy arms – are marketing the bill as being about improving eating disorder training for health care and education professionals, and rectifying media and entertainment content which influences eating disorders.
Let me tell you what H.R. 2515 is really about (to read the full text of the proposed bill, click here ). It is about is a tiny clause you don’t find until you scroll to the very bottom of the proposed legislation, under sections relating to the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA):
“RESIDENTIAL TREATMENT.—For purposes of this section, mental health and substance use disorder benefits include residential treatment.’’
What this means is that every health insurance plan in the nation will be required to cover a private, unregulated form of treatment whose efficacy is completely unproven. Needless to say, the passage of this bill would be a huge boon to the for-profit, eating disorder treatment industry.
I believe mental health parity – which requires insurers cover mental health and addiction benefits on par with other medical conditions – is of course much needed. But I don’t think insurance companies should be required to cover unproven treatments – particularly when, according to my research and the experience of countless others – that form of treatment may actually be making us worse rather than better.
In case you need reminding, there are zero peer-reviewed, randomized control studies on the the long-term efficacy of residential treatment for eating disorders – an industry which has been running strong for almost 30 years. This lack of evidence is particularly egregious when you consider severe anorexia is the most lethal mental illness, with a mortality rate of 20 percent and markedly reduced life expectancy.
On top of this, globally we are spending more on institutionalized care for people with severe, persistent anorexia than we are for schizophrenia.
As Leslie Thompson, another, 30-year-old survivor of the eating disorder, residential treatment “merry-go-round” put it, in a recent comment to “Part 1” of my series:
“I used to think insurance pulling the plug on clients who lived at centers for months on end was a horrible tragedy, but I now agree it is a necessary evil in a futile attempt to regulate the industry. Mental Health Parity laws are forcing insurance companies to shovel out endless amounts of cash for often-worthless treatments. I am not against parity laws, but I am against parity laws being abused. Practices like this are why American healthcare costs are the highest in the entire world… Markets need regulation to protect the consumer – and this market has very little oversight… It is unconscionable that mental health facilities are not held up to the same standards as physical health facilities. A hospital would not perform an experimental surgery on someone based on positive testimonials…. We need to take the magnifying glass to [the eating disorder] industry, because the road to hell is paved with good intentions.”
Thompson, like many others I know, was able to achieve recovery only after extricating herself from the residential treatment system. She is now thriving, working as a legislative assistant in Minnesota.
Thompson’s points are particularly important when you consider that in eating disorder treatment, the most important consumer – the client – has little to no opportunity to regulate the market by choosing the best product because 1) We are deemed unfit, due to our “malnourished, broken brains,” to judge whether that product is good or not, and 2) The quality of the product is unknown because private programs are not required to report whether their clients achieve and maintain long-term recovery.
In November 2013, when the Obama Administration released its final regulations for implementing the MHPAEA, the National Center on Addiction and Substance Abuse at Columbia University (CASAColumbia) released a statement objecting to the lack of a “blueprint for optimum or even effective services… to guide insurers in deciding which addiction benefits to offer.1” Therefore CASAColumbia – a nonprofit research and policy organization which works to increase the use of best-practices in addiction treatment – developed recommendations for what exactly insurers should and should not cover, based on what the evidence demonstrates is effective.
Given that those of us who battle eating disorders lack stellar watchdog organizations such as CASAColumbia to guard against our maltreatment, it falls to us consumers to ardently demand legislators review the science – or more accurately, the lack thereof – surrounding residential treatment for severe eating disorders before passing the Anna Westin Act in its current form.
At the least, ask your legislators to add language to the bill which states insurers are only required to cover residential treatment programs which provide evidence-informed treatment, which track and publicly report clients’ long-term outcomes, and which have obtained the specialized, eating disorder accreditation currently offered by the Commission on Accreditation of Rehabilitation Facilities (CARF) [soon also to be offered by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)]*.
Really, however – given that attempts to regulate residential treatment for other mental disorders have proven ineffective at uncovering maltreatment or abuse2 — if money is going to go anywhere, I don’t believe it should be going toward residential treatment.
Consider what Ira Burnim, legal director of the Bazelon Center for Mental Health Law, said to me last month in an interview:
“It’s a waste of time to try and regulate residential treatment centers. For example there is a long history of trying to do this with youth residential facilities, and it’s been a complete failure,” he said. “We shouldn’t be spending our time trying to improve (mental health) institutions because they shouldn’t be there in the first place.”
I believe – along with researchers specializing in my population – money should be going toward developing and covering what’s known as “recovery” or “rehabilitative” models of care. Developed in the late 1970’s and 1980’s, recovery models of care are now successfully being used to treat almost all forms of severe mental illness — including schizophrenia, bipolar disorder, PTSD and substance abuse – all except eating disorders. Eating disorder care sits on an island in the mental health field, where its treatment industry has been successful in blinding families to the better, more efficacious approaches being used for all other severe mental illnesses.
*To read more about the role specialized accreditation plays in behavioral/mental health care, read my story touching on this issue as it relates to eating disorder treatment here.
The recovery model approach to treatment is a holistic, strengths-based -rather than deficit-based – approach which treats people with dignity, in their communities, and recognizes that people with severe mental disorders want and can return to being full, functioning members of society when provided access to resources such as supportive housing (for example, “sober living communities”), outpatient therapy, employment assistance, and consumer- or peer-run programs.
Rehabilitative care recognizes that recovery is an ongoing process, defined differently by everyone, and that many individuals can still thrive despite the presence of ongoing but non-disabling symptoms.
The need to move individuals with all forms of severe mental illness out of treatment facilities and into recovery models of care is exactly what the Bazelon Center litigates for.
“With every other [psychiatric] disability residential treatment doesn’t appear to be effective,” Burnim said, referring to the research to date. “Segregating people in facilities doesn’t work… I don’t know why the movement of de-institutionalization hasn’t happened in the eating disorder world. But with all other mental disabilities consumers and advocacy groups have come together to say individuals should be given the opportunity to stay and be treated in their own home… If you want to help people get better you need to treat them in their own environment by helping them learn to better navigate their own world.”
I asked Burnim about the “medical risk” or “self harm” argument treatment providers and parent groups often use to justify residential or inpatient treatment.
“The argument that somehow eating disorders are ‘different’ – a lot of people have tried to say that” for other mental disorders as well, Burnim replied. “But you have many disorders which also come with self-harm or life-threatening behaviors – such as schizophrenia or bipolar disorder. Our position is that that’s part of how the industry maintains their status quo – by saying ‘This disorder is different, so whatever trends are occurring in the disability world don’t apply to us.’”
I believe attempting to funnel more and more individuals with severe eating disorders into residential treatment — by marketing it as the gold standard treatment when it is anything but, and universalizing coverage of it — the industry is verging on violating our American with Disabilities Act (ADA) and Olmstead* rights by leading us into cycles of institutionalization which end in either death or permanent decline. My time cycling in and out of a system I was told would save me lasted more than a decade – as most of you know – and I’m much worse off today than before I entered that maze.
Bazelon’s Web site includes literature on how mental health facilities which look like caring treatment “homes” are often institutions in disguise:
“The physical location of a living setting in the community, its private ownership, or the absence of characteristics generally associated with a hospital do not guarantee that residents with mental disabilities are free of the discrimination and segregation prohibited by the ADA,” reads Bazelon’s statement on the community integration mandate. “Many individuals with mental disabilities are unnecessarily segregated in institutions such as nursing homes, board and care homes, and residential treatment centers that are physically located in the community… Facilities that may have the physical appearance of a home but, in fact, are quite isolated from mainstream community life.3”
Individuals with severe and enduring eating disorders – and their families – are easy prey for for-profit treatment programs because we are weak in body, desperate, and aren’t told that what occurs behind the locked doors of a residential center may not be science-based, nor that we’ll most likely end up knocking on the doors of other centers later, because each prior program failed us. When you write your legislator, demand that if more money is going to be pumped into perpetuating and expanding the “residential treatment industrial complex,” that money also be devoted to researching and developing community-based, rehabilitative services for treating severe eating disorders on a par to which they already exist for other forms of severe mental illness today.
That is the type of parity I want to see. And researchers specializing in finding more effective treatment solutions for severe eating disorders agree.
In the July issue of Journal of Eating Disorders, in an editorial demanding a new treatment paradigm be applied to “severe and enduring anorexia” (SE-AN), Dr. Stephen Touyz and Phillipa Hay called on researchers and health care providers to start providing recovery or rehabilitative models for this population:
“Those living with a chronic illness, especially one as debilitating as SE-AN, are entitled to dream of a better tomorrow and to feel understood not only by the medical profession but by the world at large… Patients with SE-AN can no longer be ignored for they have suffered for far too long, having to contend with an abysmal quality of life devoid of any hope of an effective treatment on the horizon… The time has now arrived to take the bold step in reconceptualizing illness severity in anorexia nervosa especially since there is a growing recognition that the factors that may contribute towards its onset are not necessarily the same as the ones that may perpetuate it…. On measures such as quality of life, those with SE-AN have been found to be equal in impairment to those with severe depressive disorder as well as schizophrenia. Such factors provide a compelling argument as to why a rehabilitation model of care, not too dissimilar to the ones advocated for those with schizophrenia, needs to be considered for those with a persistent eating disorder, including highly specialized acute care when the need arises.4”
*The Olmstead case was a 1995 Supreme Court ruling which affirmed that the ADA prohibits the segregation of individuals with physical and psychiatric disabilities. “Needlessly isolating such individuals, the Court wrote, is a form of discrimination based on disability—discrimination that perpetuates unwarranted assumptions about their capabilities and their worthiness to participate in community life. The Court found that institutional confinement deprives people of what is valued most in life: family relations, social contacts, work, educational advancement and cultural enrichment. In interpreting the ADA, the Court relied on the ‘integration mandate’—a regulation issued by the U.S. Department of Justice requiring public entities to ‘administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.’[28 C.F.R.§ 35.130(d)]. The Court also relied on a regulation requiring public entities to make ‘reasonable modifications’ to avoid discrimination on the basis of disability,” summarized Bazelon5.
I think the fact that a recovery model of care hasn’t been applied to treating eating disorders highlights a unique prejudice found both within and without the mental health care system toward individuals who battle these conditions. I have my own opinions as to why our voices are given little heed – including that anorexia is widely perceived as a superficial obsession with thinness when in actuality it masks psychological distress far more complex, as well as many professionals’ conviction our opinions should be dismissed as the irrational notions of “malnourished, broken brains.” But this prejudice is a discussion to save for another time.
I do think it’s important to emphasize however that severe and enduring eating disorders – along with long-term substance abuse — are very misunderstood conditions. Both often have little to do with their outward manifestation, but are behaviors individuals resort to to cope with undiagnosed and complex, underlying conditions, life distress, “problems in living” (as Thomas Szasz would say), poor socio-economic circumstances and barriers, etcetera. It has always struck me as odd that much of the addiction community notes how many substance abusers have “co-morbid” mental health conditions. This way of looking at things is somewhat misleading, in my opinion. For some individuals, the “co-morbid” mental disorder does not simply exist alongside the addiction; the mental disorder is what causes the addiction. The same can be said for most people who battle eating disorders. It’s what underlies that diagnosis that is the true “disorder.” (While I take issue with our current system of “mental disorder” labeling in general, I’ve written about that subject elsewhere on this site.)
Substance abuse and eating disorders share common ground in not only being possibly the most stigmatized and misunderstood mental disorders in the nation, but in that both conditions’ treatment have been largely hijacked by private, residential treatment centers mysteriously sanctioned as sound medical care by our government. I wonder if the eating disorder and addiction communities could reap gains by joining together to fight to eliminate stigma and obtain greater funding to establish more recovery model-oriented treatment alternatives.
I’ll end this somewhat disjointed, final post by exhorting readers to also contact their local media outlets. If Donald Trump’s bewildering domination of the Republican primary contest demonstrates anything it is this: The only people with power in America today are 1) The media, 2) Entertainers/celebrities, and 3) Big Money. Consumers, voters and even good-hearted politicians have minimal power as compared to these Big Three, if you ask me. If we want to have any hope in forcing all sectors of society to view and treat severe eating disorders through the recovery model paradigm which should have been applied to us long ago, we have to get the media and celebrities involved in our campaign. Otherwise, the eating disorder treatment conglomerates will continue to hold sway over the lives of people who are either dying or living miserably, all unnecessarily.
House of Representatives:
Theodore Deutch, FL
Zoe Lofgren, D-CA
Ileana Ros-Lehtinen R-FL
Paul Tonko, D-NY
David Young, R-IA
Leonard Lance, R-NJ
David Price, D-NC
Alcee Hastings, D-FL
Matt Cartwright, D-PA
Robert Dold, R-IL
Brendan Boyle, D-PA
Collin Peterson, D-MN
Keith Ellison, D-MN
Erik Paulson, D-MN
Amy Klobuchar, MN-D
Kelly Ayotte, R-NH
Shelley Moore Capito, R-WV
Tammy Baldwin, D-WI
*I’d like to extend a special thanks to Marsha M., the one reader from Connecticut who, over the past eight months, clicked the “donation” button on my Web site, in an effort to support my writing.
2Interview with Ira Burnim, legal director of the Bazelon Center, in August 2015.
4Touyz, S. & Hay, P. (2015). Severe and enduring anorexia (SE-AN): In search of a new paradigm. Journal of Eating Disorders, 3(26). http://www.jeatdisord.com/content/3/1/26
Source URL: http://adisorderedworld.com/2015/09/legislative-call-to-arms-before-i-sign-off-contact-congress-and-demand-revisions-to-annas-law-before-its-too-late/
by Jeanene Harlick | September 5, 2015 7:23 pm
In this first piece for the online publication, Mad in America, I reflect – through feminist and constructivist, social psychology lens – on how using my body in efforts to be heard, seen, and fight against prejudice, I become an unwitting collaborator in my oppression. I look to re-storying (also known as “narrative therapy”) and social activism, as first steps to empowering myself in more healthy and self-affirming ways.
I also encourage you to explore Mad in America – a site founded by respected author and former journalist Robert Whitaker – which publishes articles and investigative journalism about “rethinking psychiatric care in the United States and abroad… and investigating the problems and deficiencies with the current, drug-based paradigm of care.”
By Jeanene Harlick
In 12th-century China, an odd form of willful self-torture gained ascendance: the foot binding of girls and women. For almost ten centuries, mothers willingly broke their children’s toes, bent the foot double and bound it with a strap. The result: a miniature foot that was the only way for a subjugated gender to marry into power.
Today we can look back and understand why the women of ancient China mutilated their feet to try and obtain respect in an oppressive, male-dominated culture. Foot binding was just one of many social conventions utilized to increase a person’s status. But in contemporary U.S. culture, people who intentionally hurt their bodies are not extended the same understanding — rather than being considered “elite,” we are called “insane.” We may starve ourselves or carve ourselves, taking to the extreme culturally-embedded norms like thinness in an effort to fight against marginalization or cope with internalized shame. But instead of obtaining the voice or place in society we yearn for, we are further ostracized.
Susan Bordo has called the body a surface on which the rules, hierarchies, and metaphysical ideals of a culture are inscribed: bodies are a direct “locus of social control.1” For people who grapple with emotions, personalities, thoughts, and ways of being which fall outside the range of what’s considered “normal” in Western society, the struggle to be viewed as citizens deserving of an equal voice and rights can sometimes play out on our bodies, without us quite realizing it.
For me, this ongoing struggle has played out most visibly in starvation and, more intermittently, self-harm.
Psychiatry likes to use medical discourse to turn emotional and existential pain into pathology, branding differentness as “biologically-based mental illness.” As a result I’ve been slapped with a variety of DSM labels over the years, such as “anorexic,” “major depressive” and “treatment-resistant.” However, as feminist and constructivist social psychologists have noted, ruling classes often pathologize or criminalize individuals who are different because our nonconforming behaviors threaten these groups’ powers. Branding non-conformers as “crazy” is often a handy way to obscure the dominant ideology and status quo that ruling classes are trying to protect.2
A recent incidence of self-harm brought into sharp focus how, since acquiring the “master status” of “severely mentally ill” over a decade ago, I’ve turned even more to my body to try and cope with the lost opportunities and status that the erasure of my former, “normal” identity has wrought. Subconsciously, I started allowing mental health labels — and thus dominant groups’ oppression — to take control of my life and my narrative, never realizing I had a choice in the matter. As a person who’s always placed primacy on being an active, contributing and self-sufficient member of society, the seeming loss of agency over my life has brought excruciating existential pain.
The story I’m about to tell, which occurred about a month ago, is about how an act of self-harm I originally perceived as a strident shout that “I’m still here, and I’m still worth listening to,” was anything but. It’s a story of how I came to realize that in trying to be heard — and deal with my emotions — by continually abusing my body, I become an unwitting collaborator in my oppression.
By turning to a healthy outlet (this page) I stumbled upon epiphanies: the parallels between self-harm and anorexia and how, if I continue to resort to these forms of “speaking,” I will continue to be complicit in my own subjugation, just as a millennium’s worth of Chinese women were when they willfully and painfully mutilated their feet to obtain a “status” that was entirely illusory….
You can read the full story here
Source URL: http://adisorderedworld.com/2015/09/from-self-harm-to-self-empowerment-using-words-activism-not-body-to-be-seen-and-heard/
by Jeanene Harlick | July 25, 2015 7:38 am
The first thing anyone sees when they walk through the doors of a residential treatment center for eating disorders is a sub-circle of women who – like me – have already been through several other programs. And who, like me, have been told by the admissions coordinator that this program is different, this program will help them – permanently.
I remember the first time I admitted myself to such a program, in 2004, to try to prevent a longtime battle with mild anorexia from spiraling into something more serious that would derail my life.
I was shocked when, following the preliminary bag search, vitals check, weight-taking and paperwork, nearly every client who introduced themselves to me did so by giving me a warm smile, stating their name, and then asking me my name as well as this question:
“So, is this your first treatment?”
I quickly and vehemently nodded my head, yes, it was my first. And then thought to myself – as a wraith-like 20-year-old, who looked like she should be dead, walked by me – “What?! You mean people do this more than once? I will never, ever become one of those people.” I shuddered in horror, turned quickly away from the woman (who I later learned had been cycling in and out of treatment for the past ten years), and whipped out my reporter’s notebook. If I was going to spend two months inside this place I was at least going to get a story out of it.
Unfortunately, I never did write that story. Because that first treatment marked the beginning of the end of my career, my confidence as a writer, and my life and identity as a “normal,” moderately-successful woman with boundless potential. I left the program with nearly all my underlying conditions unaddressed, but the obligatory weight gained. I had been supervised, the majority of the time, by blue-collar workers lacking any psychological training; women who worked there because it paid slightly better than the cafeterias or cleaning jobs they had held prior (I asked). I had been forced to attend pointless, hour-long chapel services every day despite being an agnostic verging on atheist.
At discharge, I tried to shrug off lingering feelings that for years I had been too “easy” on myself – since my anorexia had never approached the extremes of most women I was in treatment with in 2004. I tried not to think of myself as inadequate because I could never deprive myself as “well” as these women had. It wasn’t the failing to achieve their ghoulish degrees “thinness” that bothered me – it was the rigorous self-discipline it took to get there, and which I worried I lacked, in other areas of my life. Working very, very hard – giving everything 110 percent – had always been of utmost importance to me.
I tried to plunge myself back into my newspaper job. But two months later I had quit, and moved home. A year later I was in the throes of a full-blown relapse, and was trying to manage a menial but full-time, administrative job while having a resting pulse rate in the 20’s, and severe bouts of dizziness and exhaustion.
Finally, my parents intervened, pulled me out of work and, on the advice of my physician assistant – an alleged “eating disorder expert” (hah!) – demanded I go back into treatment. I had been trying, in the months leading up to the crisis, to avoid this outcome – I feared becoming “institutionalized.” I had tried to attend an intensive outpatient program, but lack of work and family accommodations made attending it feasible. So when the crisis came to its head, I begged to, at the least, enter a day or intensive outpatient program closer to home, instead of being shipped off to a residential program again. I had serious doubts as to whether repeating this expensive, level of care – which my parents would have to take a loan out to pay for – was worth it.
But my parents researched and sought referrals for two weeks, and they promised me, this center they’d found in the Midwest, it would truly help me. And the program did look awfully great, on its Web site, and its admissions coordinator told us all the things we wanted to hear. We didn’t know, back then, that you couldn’t necessarily trust what a for-profit treatment program was selling you. And we didn’t know about the accumulating body of evidence demonstrating that residential or inpatient* treatment is, for the most part, an ineffective level of care for adults with long-term anorexia – unless they lack all motivation to recover, are experiencing life-threatening medical complications, or are simply unable to initiate change on an outpatient basis.
Most centers present themselves as the only hope and first-line-of-treatment for individuals of all ages with severe eating disorders, and brainwash our families into believing the same. And once us clients are inside the centers’ doors, we often lack the resources or ability to discharge and fly home without our families’ support. We call home, crying, but the clinicians tell us, as well as our parents, that our protests are “the eating disorder talking”; that they are the rants of inherently broken and malnourished brains.
These people have letters after their names like Ph.D., Psy.D., LCSW, R.D., and more, so what are we (or our families) to think? Of course these clinicians are right, our vulnerable minds believe, even though everything inside us is screaming something isn’t. And it’s not the eating disorder screaming. Because we want to get better, and we know it will be hard. But we don’t understand how being locked up – in effect – and treated with less dignity than dogs, is going to translate to lasting recovery.
When we discharge, and inevitably begin our slow relapse, and finally – following years of repeating the same cycle – start asking whether maybe it’s the treatment center that failed us, instead of the other way around, our views are muted by the industry. Our voices are dismissed as the misguided notions of bitter and angry, “treatment-resistant” anorexics who have failed to “surrender” to recovery.
*“Inpatient” generally refers to treatment which occurs in a hospital-based program.
Our numbers are small, so maybe that’s one reason we’re so easy to silence. The lifetime prevalence of anorexia, in the general population, is 1 percent of women, and of that 1 percent, about 40 percent will recover within five years, and an additional 40 percent will achieve partial recovery. So while, as I will continue to demonstrate below, adult women with long-term anorexia are often being routinely subjected to forced treatment which decreases rather than increases our chances of recovery and at times rises, I believe, to the level of abuse and malpractice –we are tiny in number and stature, and thus hard to hear among the clamor of apparently more-pressing issues in mental health policy today.
And the most extreme of us look ghastly on top of it – only further reinforcing the incorrect perception that we’re literally out of our minds, one of the many widespread misconceptions about adult women battling severe and enduring anorexia (SE-AN)* which proliferate today. (Many women with severe, long-term anorexia are also not severely emaciated, per DSM standards, but struggle significantly nonetheless).
This article in my series will continue my attempt to shed awareness about how the eating disorder (ED) field’s continued institutionalization of women battling long-term eating disorders – particularly anorexia – is hurting more than helping, by taking a closer look at the lack of data supporting residential treatment’s efficacy, the wide disparity in licensing standards and enforcement nationwide, and the issues surrounding accreditation.
In an era of health care reform where more efficient spending of health care dollars, outcome-oriented accountability, is being stressed, it seems that examining what is looking more and more like a flagrantly wasteful use of insurance companies’ as well as families’ money is long over-due.
Particularly when you consider that, globally, we are spending more on inpatient treatment for individuals with SE-AN than we are for schizophrenia[i].
As noted in “Part 1” of this series, eating disorder treatment is a an estimated $3 billion industry, according to the most recent IBISWorld market report[ii]. Due to growing demand, industry revenue is expected to annually increase at – a minimum – a robust rate of 5 percent. The profit potential of the ED treatment industry is so ripe that nearly the entire market has been bought up by behavioral healthcare networks or investment firms. Acadia Healthcare, one of the largest behavioral healthcare conglomerates in the nation (following its purchase of CRC Health Group last year), owns many of the nation’s most prominent ED centers, including Timberline Knolls (Illinois), Sierra Tucson (Arizona), McCallum Place (St. Louis and Austin, TX), Montecatini (Carlsbad, CA) and Center for Hope of the Sierras (Reno).
The industry buy-out can work for good or bad, said Deanna James, director of marketing for Castlewood Treatment Center. While the influx of money can help improve programs, conglomerate ownership has the potential to hurt centers when industry giants purchase too much at once and impose standardized, cookie-cutter approaches on programs for efficiency and economics’ sake.
“It’s very hush-hush – treatment centers don’t want to be [publicly] branded as being owned by these conglomerates,” James said. “I do think it definitely plays a role in the quality of care.”
Castlewood – as well as the Eating Recovery Center in Denver – was itself bought up by a smaller, private equity firm, Trinity Hunt Partners, a few years ago. James said Trinity has not forced Castlewood to cut corners or compromise the center’s flexibility in the range of tailored treatment it offers clients, nor the center’s commitment to using empirically-supported practices. She believes the center has only benefited from its ownership.
[Disclosure: Castlewood Treatment Center is one of the many programs I’ve attended; I was a client there before it was bought by Trinity Hunt Partners, and before Castlewood obtained the quality-control accreditations which will be discussed below].
United Health Services, another huge behavioral healthcare network whose ED centers include River Oaks Hospital (New Orleans) and the Center for Change (Utah), is currently being investigated by the federal department of Health and Human Services for allegations of fraud and neglect that have endangered the welfare of patients. The investigation was spurred by a series of articles by two major newspapers, finding negligence, “cutting corners,” staffing failures and patient deaths across Arbour Health System facilities in Massachusetts, and violence and sexual assault, among other things, at some other, Midwest[iii]. United Health Services’ corporate office has also been under investigation for fraudulent Medicare and Medicaid billing.
But Jillian Lampert, a leader in the field and chief strategy officer of the Emily Program, whose levels of care include the Anna Westin House, hasn’t seen investment firm buy-out impact the quality of eating disorder treatment.
“I know that it’s a concern, but I think those [entities] are investing because they see some eating disorder programs as providing really high quality of care,” said Lampert, whose center remains privately owned and has not been purchased by any such company.
It’s impossible to know what, if any, impact this industry trend has actually had, because for-profit ED programs are, for the most part, not tracking clients’ long-term outcomes – leaving consumers with no impartial measuring stick by which to judge whether a program is effectively treating clients or not. The Emily Program is an exception, being the only private program I know, of to date, to have completed a 2 ½ year outcome study – including a control group – that will be published in the coming months. That study, and the state of outcome research in general, will be discussed in depth in “Part 3” of this series.
Despite the paucity of such research, however, insurance coverage of residential treatment continues to expand. National awareness campaigns by eating disorder “advocacy” groups – some of whose primary funding base is the for-profit, treatment industry – are constant, and insurance parity legislation, as a result, on the rise. Recently, the state of Missouri expanded insurance coverage for all levels of treatment, including residential, despite its unproven efficacy. If the federal government passes the recently-introduced Anna Westin Act this year, insurance providers in every state will be required to cover all residential, eating disorder treatment centers, regardless of the quality or efficacy of the treatment that center provides – a huge boon to the industry. While expanded coverage of eating disorder treatment is certainly a positive, it is essential consumers demand this legislative mandate come with strings attached: greater transparency and oversight of programs which now operate with minimal regulation and virtually no accountability. That the federal government allocate more of its medical research funds toward eating disorders, to help enable program outcome studies, is essential, too.
*The “SE-AN” diagnosis is generally used for individuals who’ve battled anorexia for seven or more years, have experienced multiple treatment failures, and have poor quality of life, among other variables.
While no specific, therapeutic modality has emerged as a definitive, “evidence-based treatment” for adult anorexia* the body of research demonstrating what setting is most effective for treating adulthood anorexia is clear. Outpatient – not inpatient or residential – care as first-line treatment for anorexia in adults is now being embraced as protocol by international clinical bodies. The Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) – whose guidelines, published in 2014, are most current – revised their latest set of protocols to state that adults with anorexia, including SE-AN individuals, should be treated in the least restrictive environment possible. Many individuals battling severe, chronic anorexia can in fact receive successful outcomes in outpatient care, the RANZCP handbook states. The guidelines are based on a review of all the most current research to date[iv].
Outpatient care is also recommended as first-line treatment for bulimia.
The growing consensus among researchers, globally, is that residential or inpatient treatment should be resorted to only when individuals are experiencing life-threatening medical complications, are at extremely low weights, or are unable to initiate change in any level of community-based, outpatient care. Even then, residential treatment should occur for as little time as possible, with patients stepped-down to lower levels of care as soon as they are stable, experts say.
That’s quite a contrast from the eleven months I was forced to stay – against my will – at the last residential treatment center I attended, in 2012. And I was stable less than two months following admission there.
The research supporting these updated guidelines include studies on SE-AN individuals that have emerged from pilot programs in Australia, New Zealand, British Columbia, Sweden and Canada over the past few years. The alternative, largely community-based models of care utilized in these areas will be discussed in greater detail later in this series. But they are showing that outpatient treatment such as a form of CBT modified for severe anorexia (CBT-SE), as well as Specialist Supportive Clinical Management (SSCM)**, is proving highly success for women like me. One outpatient, randomized controlled study comparing SSCM to CBT-SE had a program retention rate of 85 percent – almost unheard of for my population; both groups also demonstrated significant improvement on nearly all outcome measures, including at discharge and one-year follow-up.
The RANZCP clinical guidelines also state individuals with all manner of eating disorders should be provided Recovery-Model-oriented care – an approach which also stands in stark contrast to most, standard treatment in the U.S. today, where the medical model predominates. Recovery-oriented care, as the RANZCP handbook puts it, maximizes self-determination and choice in treatment, delivers it through community-based services and in partnership with consumer organizations, supports the development of new models of peer-run programs, and recognizes the dignity of individuals and their right to make their own treatment choices – even if those choices might not seem, at first glance, as the best choice by the person’s treatment team.
The American Psychiatric Association’s guidelines – written in 2006, and which therefore could not draw from the recent, SE-AN research – have no specific recommendation for treatment setting for adults or adolescents with anorexia. APA guidelines advise clinicians determine level of care based on parameters such as medical condition, patient motivation, and weight loss rate. However their 2012 “Guideline Watch” did note that leading British researchers recommend against long-term, inpatient care as first-line treatment for adolescents, based on a large, multi-site study which showed adolescents receiving inpatient treatment fared worse than those who received outpatient care[v].
“On the whole, these investigators concluded that under the British National Health Service there is little support for long-term inpatient care, either for clinical or for health economic reasons,” reads the APA guidelines. “Inpatient treatment [for adolescents] predicted poor outcomes.”
I find it interesting that none of the big players in the insular world of U.S. eating disorder treatment and advocacy – much less the residential programs themselves – are telling prospective clients or families about the lack of empirical support for what is still widely being touted as first-line care for adults battling severe anorexia.
For Tetyana Pekar, MSc – creator, writer and editor of the Canadian blog, “Science of Eating Disorders: Making Sense of the Latest Findings in Eating Disorder Research” – the problems inherent in the predominance of unregulated, for-profit residential treatment in the U.S. are impossible to separate from the politics and economics of our health care delivery system. In case you need a reminder – we live in the only Western, industrialized country lacking socialized medicine.
“This is one of the fundamental reasons why I think for-profit healthcare is ridiculous and unworkable… As an outsider I can’t even imagine any kind of regulation being passed. It is so crazy to me how people [in the U.S.] think for-profit corporations will self-regulate,” Pekar said, speaking to the lack of accountability or transparency the ED industry is held to. “[Because] what’s the point. They get tons of patients. They help some, surely. But I feel there’s just no motivation on their part [to, for example, track client outcomes]. It will only cost more money.”
Added Pekar: “That’s not to say that all these centers want to do is make money, or that they don’t want to help….But wanting to help is not enough, particularly if you are not utilizing evidence-based practices.”
*Proven, evidence-based treatments exist only for bulimia and adolescent anorexia. Those include cognitive-behavioral therapy (CBT) for bulimia in adults, and family-based treatment for adolescents with three or fewer years battling anorexia. Interpersonal therapy (IPT) has also shown some effectiveness with bulimia.
**SSCM combines features of clinical management and supportive psychotherapy, including techniques such as collaborative goal-setting, fostering a strong therapeutic relationship, and providing care, support, education, reassurance and advice. The therapy is flexible and individualized, and focuses simultaneously on gradual resumption of normal eating and improving quality of life. Progress toward life goals motivates individuals to further reduce core, eating disorder pathology and later, maintain these improvements.
The RANZCP guidelines also warn there is no evidence supporting the use of psychotropic medications for adult anorexia. I found this particular protocol interesting, as every program I’ve attended over the past 11 years has tried to drug the hell out of me – including forcing me to take antipsychotics used to treat schizophrenia. A recent meta-analysis found there is absolutely zero evidence supporting the use of antipsychotics to treat anorexia[vi].
I was often a walking zombie as a result of over-medication. One Denver program forced me to take Zyprexa for months, which eventually landed me in a locked psyche ward for three days – because the medication brought me near the point of psychosis.
Ilana Kornfeld, 22, who attended the same Utah program I did in 2012, said the center forced her to take naltraxone – a drug used to treat substance abuse, and which numerous clinicians have since told her is completely inappropriate to prescribe for eating disorders.
“It was a terrible drug that made me feel sick and shaky, and I told [the center] that. But I was told ‘stay on it a bit longer. We can’t force the pill down your throat, but you would be non-compliant if you refused,’” Kornfeld, who was 20 at the time this occurred, said. “The amount of manipulation that went into me agreeing to take a drug I didn’t want to take in the first place, [and then me] continuing to [be forced to] to take it is absolutely painful to think about.”
This is just one small illustration of a huge problem within the industry that even many inside it admit needs addressing: the lax, state oversight of for-profit eating disorder programs, alongside wide disparity in licensing standards centers throughout the nation. Centers are also not required to adopt treatment protocols specific to eating disorders to operate a program, in any state.
“Anybody can say, ‘I’m an eating disorder specialist.’ There’s no quality control,” said Dr. Russell Marx, Chief Science Officer for the National Eating Disorders Association (NEDA). “The programs are not standardized… There’s all these places who say ‘We know how to treat eating disorders,’ but there’s no evidence to support it…. If you’re a family member it’s very hard to assess the quality of programs.”
In California, for example, all residential eating disorder centers are licensed by the Department of Public Health, under the category of “Congregate Living Health Facility” (CLHF), one of eight categories of long-term care facilities regulated by DPH. The other categories in this grouping include facilities providing rehab for people following brain, spinal or other life-altering injuries, skilled nursing homes, group homes for the developmentally disabled, retirement or assisted living facilities, pediatric palliative care centers, and hospice facilities, among other things.
While on one hand, this means California’s residential eating disorder programs are held to stricter medical and safety standards than programs in many other states (for example, the administrator is required to be a registered nurse), the level of mental health standards California programs are held to appears wanting. Eating disorder facilities are the only form of residential, mental health treatment overseen by the DPH; all other forms of 24-hour psychiatric care are overseen by the California Department of Health Care Services, including substance abuse programs.
This simply makes no sense to me. If you review the Health and Safety Code standards pertaining to CLHF’s (1267.13), you find nothing related to ensuring centers live up to quality, mental health treatment protocols or best practices – whether general or eating disorder-specific. And standards such as these – lacking specificity in regards to regulating the mental health side of treatment – are the norm throughout the nation.
In Utah, residential eating disorder treatment centers are overseen and licensed by the Department of Human Services; they are considered programs needing minimal medical, in contrast to California. Utah ED program licensing is the same type required of substance abuse treatment centers in that state – but it also covers children group homes and facilities for the physically disabled. In Missouri, residential eating disorder licensing even varies within the state itself. While McCallum Place is licensed by that Missouri’s Department of Mental Health as a “residential and day program,” Castlewood, the state’s other major ED program, holds a general state license as an “ambulatory mental health facility.” In Arizona, Remuda Ranch is licensed by the state Department of Health Services as a “Level 1 Behavioral Health Program.”
The variation goes on and on, the maze of standards and oversight so complicated and diverse that it is simply beyond the grasp of this writer – much less any potential clients or families – to comprehend or dissect.
This variation is, in fact, one argument Blue Shield’s lawyers made in my lawsuit (see “Part 1” of this series). Combined with the lack of outcome studies proving residential care’s efficacy, Blue Shield argued that residential eating disorder treatment, as it exists in the U.S. today, is more akin to education than to medicine.
I am inclined to go even further with that statement. When you take into account the experiences of former clients such as myself and my friends, and practices described in “Part 1” of this series, treatment at some centers virtually amounts – in my opinion – to quack medicine.
Wrote researchers Michael Strober, director of eating disorder programs at UCLA, and Craig Johnson, Chief Science Officer of the Eating Recovery Center, on the state of eating disorder treatment and thinking today: “It has become easy in our field for misunderstanding, misattribution and plain lack of knowledge to stand in for clinical wisdom…. It is little wonder that so many patients and families tell us they feel at a loss, not knowing who to turn to for sound, factual advice.”
Obtaining specialized, eating disorder accreditation, by one of the two major, national accrediting agencies operating in the U.S., is being offered as a possible solution to this problem by some leaders in the field, including the Academy for Eating Disorders (AED) and the Residential Eating Disorder Consortium (REDC).
Accreditation by a major, independent health care agency has long been accepted, throughout the behavioral health industry – as a way to help ensure treatment quality, and universalize the standard of care provided throughout the nation[vii]. Programs which obtain accreditation must conform to uniform, national practice standards.
Currently, most eating disorders obtain the general, behavioral health accreditation offered by the Joint Commission on Accreditation of Healthcare Organizations’ (JCAHO). Over the past two decades, the Commission on Accreditation of Rehabilitation Facilities (CARF), has also emerged as another, major accreditor of mental health care programs.
The Joint Commission standards are generic to all mental health programs, and therefore not eating disorder–specific. In addition, according to the aforementioned James, of Castlewood Treatment Center, the Joint Commission’s behavioral standards are primarily concerned with administrative and safety issues.
Castlewood, which operates programs in Missouri and California, is one of the only eating disorder centers in the nation to possess Joint Commission accreditation as well as the specialized, eating disorder-specific accreditation introduced by CARF in February 2013. CARF’s standards, which can be used for residential, inpatient or PHP (day treatment) programs, are based on guidelines developed collaboratively by REDC, the AED, and the International Association of Eating Disorder Professionals (IAEDP).
If more programs obtain such specialized accreditation – currently only six programs have it[viia] – it could mark a significant step forward in ensuring quality control. The REDC collaboration came about expressly due to some professionals’ concern that the proliferation of unregulated treatment is resulting in programs that don’t adhere to the level of rigor needed to ensure the safety and recovery of individuals battling severe eating disorders[viii].
“The CARF guidelines are very specific,” the aforementioned Lampert, who is also executive director of REDC, said. “It was very exciting that CARF adopted them.”
At the request of organizations like REDC and the AED, the Joint Commission has also started working on developing a set of ED standards to incorporate into their behavioral health care accreditation. After reading a summary of their efforts to date, it looks to me like the Joint Commission standards may be even more rigorous than CARF’s[ix]. The Joint Commission hopes to adopt and implement the ED accreditation by July 2016.
Lampert believes many residential centers have not obtained the CARF accreditation because they are waiting for the Joint Commission guidelines to come out.
REDC was formed in 2011 partly as a result of the publicity surrounding my lawsuit, Harlick v. Blue Shield. Critics of the ruling focused on the lack of evidence supporting residential treatment’s efficacy, as well as the variation in licensing and standards; a group of centers came together to try and start addressing the weaknesses in the current model of care, and that group became REDC, Lampert said.
Currently twenty eating disorder programs are members of REDC. You can see which ones by visiting REDC’s Web site here. While “twenty” sounds small, according to Lampert, REDC members represent more than 45 different centers – which she says is the majority of the residential eating disorder programs. With no firm figures on the specific number of residential treatment centers in the U.S., however, it’s difficult to nail down such figures.
“We decided instead of competing with each other, we should work together to improve treatment,” Lampert said, about REDC’s genesis. “We wanted to be able to address those critiques and provide the back-up data to refute them…[by] delivering programs that were meeting the same set of national standards, and by starting to do collaborative, outcome research studies.”
Lampert disputed the notion that placing profit over quality-of-care accounts for why many adults end up cycling in and out of residential treatment centers for years.
“I think it’s because eating disorders are complicated illnesses that generally take a fair amount of treatment visits” to obtain recovery, she said. “There is also the insurance piece – when clients are forced out early they don’t receive complete treatment.”
The CARF standards REDC helped develop require programs offer treatment modalities supported by evidence, and recommend, for example, incorporating SSCM and modified CBT for adult clients.
The standards also require care be delivered by clinicians with expertise in eating disorders and specialist training, and require that even lower-level staff receive at least six hours of continuing education training in eating disorders per year. Centers must also pay greater attention to clients’ unique needs and history, as well as age, socio-economic circumstances, career goals and quality of life. The guidelines also call for more cooperative, collaborative treatment plans.
CARF’s general, behavioral health standards – which programs who obtain the ED accreditation also have to follow – require organizations track client performance post-treatment, and report that data to relevant stakeholders.
It remains to be seen whether other residential treatment centers follow the lead of programs like Castlewood, the Emily Program and the Center for Balanced Living by adopting the specialized, ED accreditation, and therefore committing to delivering empirically supported treatment, as well as providing higher levels of transparency and accountability.
But when I learned more about CARF’s accreditation process, I had to wonder – does accreditation really ensure quality control? While the initial obtaining of it requires an external, on-site review – in CARF’s case, the review is conducted by a group of expert practitioners – external reviews occur just once every three years following that (the same goes for JCAHO). Apart from the three-year site visits, CARF relies entirely on periodic, self reports completed by facility administrators to measure whether a program is in compliance with standards. Client input – whether current or former – as to whether centers are living up to quality standards is never part of the review process.
If you look at Castlewood Treatment Center’s Web site, you will see that they still utilize a type of therapy called “Internal Family Systems.” This treatment – as well as lacking no evidence-base whatsoever, and whose use with individuals battling eating disorders has been criticized by many leading experts – was at the center of a highly-publicized lawsuit which eventually led to the resignation of former founders, Mark Schwartz and Lori Galperin. The lawsuit involved former clients who accused Schwartz and other Castlewood therapists of using IFS to implant false memories of sexual and ritualistic abuse in them, among other things.
How can accreditation be a safeguard, if a facility which has the CARF seal of approval – whose criteria explicitly includes the use of empirically-supported therapies – is still prominently employing a widely discredited modality?
The required, post-discharge, outcome tracking is also left up to centers to conform with on a “good faith” basis. Centers are not required to report the data to CARF (or anybody else), nor provide proof that they’re even collecting the data. Programs are simply required to show that they have a plan to track client outcomes. While CARF provides recommendations as to which kind of outcome measures best demonstrate treatment efficacy, it is left to centers to decide what measures, and for how long, the programs will track client status.
But again, even if centers design a good plan – whether they actually follow through with this outcome tracking is not monitored by CARF or anybody else.
I asked Brad Contento, a CARF communications officer, whether heavy reliance on center self-reports, combined with minimal, external reviews, is sufficient to ensure private treatment centers are providing care that is in accordance with best practices and the remainder of CARF’s accrediting criteria.
Contento seemed to think CARF’s reporting requirements were rigorous enough to guarantee quality control. He said accreditation is an “ongoing” process, and that facilities are “expected” [my emphasis] to conform every year to CARF’s standards manual, as well as submit an Annual Conformance to Quality Report, among other things.
“CARF also maintains ongoing contact with accredited organizations to consult on how to maintain conformance in between surveys,” Contento said. “In addition, we maintain internal studies as to the benefits reported by organizations themselves [my emphasis]. Accountability to persons served, greater focus on needs and goals of persons served, and improved quality of service delivery are some of the top reported benefits seen after implementation of accreditation.”
But Contento also emphasized that CARF, like any accreditation agency, is not a regulatory or licensing body; the ultimate responsibility of center conformance with quality treatment guidelines lies with the state wherein a program resides, he said.
“Our standards are designed more as an overarching framework for quality that can accommodate multiple approaches to treatment, as long as they are accepted practices,” Contento said. “Generally, CARF standards would not get into the level of mandating or excluding specific treatments… CARF is not a licensure or regulatory agency, so we do not prescribe specific treatment methods.”
When you put this last statement in the context of the overall regulatory situation, it pretty much epitomizes the multiple gaps which exist in the system. Because, as stated earlier, most state licensing standards for eating disorder programs are minimal, lack specificity, and involve little oversight. Moreover, in some states, once a center attains accreditation from a national body, the state defers oversight to that agency, through a process called “deemed status.”
The state of Missouri, for example, stopped overseeing Castlewood Treatment Center’s standards compliance once it obtained its Joint Commission and CARF accreditations, James said. JHACO and CARF are now responsible for ensuring Castlewood is living up to acceptable practice standards.
So let me spell this out: We have organizations like REDC or the AED offering accreditation as a solution to the disparity in licensing standards across states. But when you dig into accrediting bodies’ conformance criteria, you find the bodies’ assessment of whether a center is meeting standards to be mostly-based on inherently unreliable self-reports. And then, when you ask the accrediting bodies about the questionable reliability of such compliance measurement, the bodies say, “Well um, you know, please remember, we are not a regulatory agency.”
Which basically amounts to a regulatory, feedback loop in which no consumer has any assurance standards are being followed. Checks and balances are virtually non-existent.
I had already searched the academic literature for studies investigating whether accreditation impacts quality-of-care at eating disorder programs – there are none. So, given that, I asked Contento if he knew of any other studies as to whether accreditation impacts, similar forms of mental health care. He pointed me toward a few studies, and I did some additional literature searches myself. Most of the studies that have been conducted, however, are on facilities such as nursing homes and assisted living facilities. The study with the most similarity to for-profit, eating disorder treatment was an impact study conducted during 1998 – 2002, by the U.S. Department of Health and Human Services, which looked at whether accrediting opioid treatment programs through JCAHO or CARF improved the quality and effectiveness of these programs. The study evaluated 175 programs in 15 states. Like women with severe, long-term anorexia, the client demographic was also trending toward older individuals with more complex social and medical needs. Evaluators also noted the increasing role for-profit programs were playing in opioid treatment.
While the study unfortunately relied heavily on staff reports of accreditation impact, it nonetheless provided some helpful information. Overall, it affirmed that utilizing an accreditation-based regulatory model improved overall care and oversight[x]. Accredited programs, as compared to non-accredited ones, offered a greater array of comprehensive services, and 74 percent of program directors said accreditation improved their monitoring of patient outcomes. Seventy percent of administrators said accreditation improved programs’ quality assurance procedures. Shortcomings noted were a lack of patient input into care design and quality, and a need for better-specifying the protocols used to carry out routine yet critical functions – something which I also think CARF’s ED accreditation standards could use (CARF provided me a copy of the standards).
In another study – a 2007 evaluation of outpatient, substance abuse programs that looked at statistics from the National Survey of Substance Abuse Treatment Services database – positive results from accreditation were also found[xi]. Substance abuse programs in states where accreditation was mandatory had significantly more wrap-around and continuing care services than programs in states which only required licensure to operate. The enhanced serves were associated with better, long-term client outcomes.
While these substance abuse studies provide tentative indication that CARF’s (and JCAHO’s forthcoming), specialized accreditation could ensure better quality control at treatment programs which obtain it, it’s still clearly too early to tell what the impact will be. Some changes Castlewood has implemented since adopting the CARF accreditation do seem to be in line with what is now considered best practices for adults – for example, according to James, Castlewood has shifted its residential treatment protocol to keeping clients at that level of care for as little time as possible, and then transferring them to the center’s day or intensive outpatient programs.
“It’s becoming clear that these long, long lengths-of-stay, in residential treatment, are not appropriate… What works is keeping people connected to their lives,” James said.
CARF’s eating disorder-specific standards, James added, “help ensure we are keeping up with all the latest research” so that such empirically-supported models are followed.
So while I hope that specialized accreditation will improve treatment quality and accountability within the for-profit, eating disorder treatment industry, I remain worried nonetheless – particularly considering the gaps discussed above. There also remains the fact that only six programs currently have the ED accreditation, and that we may have to way until July 2016 until more attempt to get one.
The substance abuse studies on accreditation – while positive – do not necessarily translate to eating disorder treatment, either. While the illnesses certainly have some commonalities, eating disorder and substance abuse treatment are two different animals.
The only reliable way to know whether residential – or any level of private, for-profit, eating disorder care – is actuality helping clients, is by conducting post-discharge outcome studies such as the one recently completed by the Emily Program. That’s why we will turn to examining the striking dearth of outcome research in the field of eating disorder treatment in “Part 3” of this series. While I am well aware of the costliness and complexity of this form of research, the time for excuses is over. Women’s lives are at stake. Demanding that the private treatment industry start implementing this essential check on an unregulated system is urgent; until such reform occurs, we won’t be able to even begin to answer what type or level of treatment can truly help people battling the most lethal mental illness in existence today.
Stay tuned for the rest of the series: Sign up to receive an email when a new article in the series is posted, by using the subscription form at the bottom of this page.
If you find this series, or any other writing here helpful, please also consider donating to keep this site alive, by clicking on the “Donate” icon below. Donations are critical to my continued ability to write about mental health issues in a way that dismantles myths and stigma; improves treatment; sheds light on the truth behind the misinformation spread by the media as well as some advocates and professionals; help reduce inequities and oppression; and help provide those of us labelled “mentally ill” with a true Voice in society.
Forthcoming articles in this series include:
[i] Hay, P. (2013). “New Evidence and Approaches in the Psychological Treatment of Severe and Enduring Anorexia Nervosa,” a paper presented at the 2013 European Forum Alpbach Conference: http://www.netzwerk-essstoerungen.at/download/k13_presentations/teachingday/Hay2_ED13.pdf
[ii] “Fighting the stigma: Rising awareness of eating disorders will boost demand for clinics,” IBISWorld Industry Report 0D5999, Eating Disorder Clinics in the US, August 2013.
[iii] “Congressman press HHS to investigate Universal Health Services behavioral facilities,” by Lisa Schencker, Modern Healthcare, June 23 2015: http://www.modernhealthcare.com/article/20150623/NEWS/150629958/congressmen-press-hhs-to-investigate-universal-health-services
[iv] “Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders,” by Hay, P., Maddden, S., Newton, R et al in the Australian & New Zealand Journal of Psychiatry, Oct. 2014.
[v] American Psychiatric Association (2006). Practice Guideline for the Treatment of patients with eating disorders, Third Ed.: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders.pdf, and Guideline Watch (August 2012): http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders-watch.pdf
[vi] Dold M, Aigner M, Klabunde M, Treasure J, Kasper S. (2015). Second-Generation Antipsychotic Drugs in Anorexia Nervosa: A Meta-Analysis of Randomized Controlled Trials. Psychotherapy and Psychosomatics Journal, 84(2), 110-6.
[vii] Center for Substance Abuse Treatment, Opioid Treatment Program Accreditation Impact Study. Web publication. Rockville, MD: Center for Substance Abuse Treatment, Substance Abuse and Mental Health Services Administration, 2004.
[viia] Programs with CARF’s ED accreditation include The Emily Program, Castlewood Treatment Center, Fairhaven Treatment Center, Canopy Cove, the Houston Eating Disorders Center, and the Center for Balanced Living.
[viii] “Update from The Joint Commission Regarding Eating Disorder Treatment Program Standards,” by Keesha Amezcua and Felicia Kolodner, in the AED Forum Newsletter:
[ix] See above (AED Forum Newsletter).
[x] See endnote vii.
[xi] Chriqui, J., Terry-McElrath, Y., McBride, D., Eidson, S., VanderWaal, C. (2007). Does State Certification or Licensure Influence Outpatient Substance Abuse Treatment Program Practices? Journal of Behavioral Health Services & Research, 34(3), 309-328.
Source URL: http://adisorderedworld.com/2015/07/buyer-beware-behind-the-smoke-and-mirrors-how-residential-treatment-is-being-sold-as-first-line-treatment-for-severe-eating-disorders-despite-research-backing-the-problematic-variation/
by Jeanene Harlick | June 27, 2015 3:25 am
When I first entered the residential treatment system, for anorexia, in 2004, I thought it would clothe me: with nourishment – mental, spiritual, and physical – as well as flesh.
Instead, it stripped me. Bare. It tore from me my dignity, my sanity, my confidence – and, most of all, my hope. Before I admitted myself, at the age of 30, to Remuda Ranch – the first of the slew – I was an over-achieving journalist with a manageable eating disorder that had waxed and waned since high school. Most of my colleagues would have never guessed I was “anorexic.” Most thought I was merely rather thin; but I was also a runner, so it made sense. Prior to Remuda, when I worked several years as a staff reporter for daily newspapers, I was slightly underweight; thin, but not emaciated. I entered “The System” in a proactive attempt to prevent a longtime struggle from spiraling out of control, and derailing my life.
Little did I know that it was the treatment – not the disorder itself – that would end up derailing it.
By 2010 – several treatment centers later – I was emaciated enough to turn heads, struggled to walk up the stairs of my apartment, and had to admit myself to the hospital for the first time. Worse, however, was my daily functionality and quality-of-life: zero.
Now, thanks largely to the eleven years of inappropriate – and often dehumanizing, shaming, and non-evidence-based – treatment I’ve received at the hands of some of the nation’s most lauded residential, for-profit treatment centers, I’ve been reduced to an unemployable, psychiatrically disabled woman subsisting off of SSDI and food stamps. I’ve become a woman whose identity, to the outside world, is now completely defined by the mental health labels I’ve been branded with. And I’ve become someone who prays, almost daily, for death – because those labels (particularly, “ANOREXIC”), and the treatment that’s robotically administered when one’s saddled with it – have taken away my power to make my life mean something.
I drink at night – even though I feel guilty about the calories – so that I can distance myself enough from my thoughts to eat, and so I can have a couple hours’ relief from the daggers of self-recrimination which constantly fly through my head.
Whenever I’ve entered a new residential or day program, I’ve achieved the target weights the centers required of me. I’ve endured the humiliation of having to defecate, urinate and shower with 20-year-old “direct care” staff standing beside me – even though vomiting has never been one of my behaviors. I stayed the months and months the centers wanted. I participated in sometimes-pointless forms of group therapy which did not resonate with me, and imbibed the 5,000-plus calories daily they forced down my throat, producing an abundance of nausea and indescribable, painful bloating, among other things. Food consisting of staples such as tater tots combined with fried chicken strips, candy bars, and milkshakes, to name just a few. All in the name of “challenging me.” Overly-aggressive food regimens and weight targets, in other words, which have been shown to do little to improve the recovery rates of older women with severe, chronic anorexia and often force them to drop out of treatment even though they desperately want to shed their illness.
My last treatment center in Utah – which was, for me, the worst of the lot – put 40 pounds on me in three months and set a weight target that was not only far above what I needed, to be at a healthy BMI, but clearly not realistically maintainable upon discharge. One 36-year-old woman in that center with me had a meal plan which – while still not as high as mine – was so aggressive, for her, she developed a massive intestinal blockage. Writhing in pain, her complaints were dismissed for over a week. Finally one day, the center took her to the emergency room, where alarmed doctors discovered the blockage and had to pump stool out of her through a naso-gastric tube for two days.
At this same center I applied myself methodically to what therapy was provided and pled for homework my clinicians could never find the time to give me; it was my attempt to individualize my treatment because the center failed to live up to its promise it would do so, when I asked them pointedly about this, prior to admission.
Researchers and eating disorder advocacy groups have been increasingly attempting to spread awareness that anorexia and bulimia are not merely superficial disorders which mostly afflict teenagers struggling with dysfunctional families or the pressures that come with adolescence. There is no age limit to eating disorders, as Dr. Cynthia Bulik – director of the University of North Carolina at Chapel Hill’s eating disorders program, and a leading researcher in the field – puts it. Recent studies have shown that women ages 35 and over are being increasingly admitted to treatment programs for long-term battles with eating disorders. A landmark, 2012 study published in the International Journal of Eating Disorders also showed that 13 percent of women 50 and over displayed eating disorder symptoms, more than 70 percent reported they were trying to lose weight, and 62 percent felt their body dissatisfaction was negatively impacting their life[i].
About one-third of women who develop anorexia never achieve full recovery; and once they get past 15 years of struggling with the disorder, the most likely outcome is continuing, severe and chronic anorexia, or death[ii].
The media is starting to pay attention to this issue, at least a bit – such as in a 2012 Oprah Magazine story[iii]. But what nobody is paying attention to is how poorly women my age and older are being treated.
If you look at where the nation’s most prominent, residential programs and nonprofit advocacy groups – the National Eating Disorders Association (NEDA) being one of the biggest players – are directing their lobbying and advertising efforts, what do you find? They’re trying to get various state and federal legislatures to pass laws requiring insurance plans cover residential treatment for all age groups, and they’re waging expensive outreach campaigns proclaiming residential treatment as the gold-standard approach for women of all ages with anorexia. This, despite the fact that, current evidence is showing the treatment occurring at these programs – designed and geared, years ago, for mostly-adolescent populations – simply doesn’t work for older women.What current evidence does say is that outpatient care should be considered the first line of treatment for anorexia in both adolescents and adults, unless a person is acutely medically unstable, at a dangerously low weight, or unable to initiate change in an outpatient setting[iv].
We go to these centers, we relapse following discharge – and yet, we’re told to return again.
The definition of insanity is doing the same thing over and over, and expecting different results – so the saying goes. But that’s exactly what the eating disorder “treatment-industrial-complex” wants us to do.
“You can’t treat a 40-year-old like you treat a 20-year-old, you just can’t,” said Dr. Michael Strober, director of the eating disorders program at UCLA’s Stewart and Lynda Resnick Neuropsychiatric Hospital. “There’s no shortage of very poor care… In some residential centers, what clinicians say to people is just mind-boggling. There are people who say things that are just untrue and that’s a fact. The absence of knowledge is very striking.”
It’s one reason a woman like Rachael Farrokh – the 37-year-old, San Clemente woman who recently garnered media attention for her attempt to raise funds to enter treatment – could starve herself to 40-something pounds despite having attended several treatment programs over the past decade.
Strober, and Bulik – a co-author of the 2012 IJED study – along with a handful of researchers placing increasing focus on what’s starting to be called the “SE-AN” population (individuals battling “Severe and Enduring Anorexia”) are trying to raise awarenesss about the need to develop more age-appropriate interventions which meet the needs of an underserved population. Bulik agreed with me that treatment centers need to be honest about what they can and cannot offer their clients, particularly when it comes to women with a longer and more complicated history of anorexia.
“This is a huge issue. Businesses can basically say anything they want to about themselves: ‘We are the best, the oldest, the largest, we have the best outcomes, etc.’ – and they very rarely have any data to support their claims,” Bulik said via email. “The Web sites and brochures are attractive, calming, reassuring, and promising, and [offer treatment which is] much less threatening than thinking about admitting to a hospital-based program with a much more clinical Web site – but [which is a program that] provides evidence-based care.
“Often we get people in our program whose insurance has been eaten up by these programs – [and these people] often have had prolonged admissions [to multiple centers] with no progress.”
Another problem, while not entirely unique to eating disorder treatment, is the widespread failure of clinical practice to lag behind the most current research on what forms of therapy are empirically supported for eating disorder treatment and what forms are not – known as the so-called “research-practice” gap. One 2012 study found that clinicians at traditional, for-profit eating disorder programs are more likely to utilize and endorse practices which are not empirically supported than university-based researchers/research-clinicians [v]. (This issue will be discussed in more detail later in the series).
It’s little wonder older women are falling victim to these programs. Eating disorder treatment is a $3 billion dollar industry that is rapidly growing due to increased demand, according to IBISWorld[vi], thanks in part to national awareness campaigns. Its profit potential is so high the industry has garnered the interest of the nation’s largest, behavioral health investment firms, including Acadia Healthcare Company which, along with a small handful of additional firms, has bought up nearly the entire market. This treatment field ranges from part-time, outpatient programs to 24/7, hospital-based, inpatient treatment. For-profit treatment makes up the largest segment of the market; nonprofit, university-based, treatment programs strapped for funding – but held to evidence-based practices – are increasingly rare. UCLA Medical Center, for example, stopped treating adult clients a year ago.
For-profit residential centers presumably bring in a hefty bulk of industry profits – there are roughly 65 – 70 of them spread throughout the U.S., and they cost between $1,000 – $1,500 per day to attend. Patient stays can range in length from 30 days to a year – the latter being the amount of time I was forced to remain at my last treatment center.
I am writing this story to shed light on what I believe has become, to steal a term used for a Mother Jones investigation into the largely unregulated, private, addiction treatment industry, a “Rehab Racket” in the field of eating disorders[vii]. The for-profit treatment occurring for anorexia and other eating disorders is a similarly unregulated industry where licensing varies widely by state, and programs are held to little accountability or transparency. Centers are not required to track or report client outcomes to demonstrate whether their programs actually work.
I’m writing this article because centers need to start being honest with older women about the uncertainty surrounding the efficacy of the treatment they’re providing, instead of advertising themselves as “centers of excellence” that will almost certainly cure you.
The irony is, a few years ago, I was also part of the movement working to expand coverage of residential, eating disorder treatment. My landmark case, Harlick v. Blue Shield, changed the law in California and now requires private insurance plans cover this form of treatment for any of the nine disorders listed in the state’s Mental Health Parity Act – which includes anorexia and bulimia. The lawsuit made front-page headlines in local and national newspapers – including the New York Times – and was lauded within the eating disorder community as a game-changer that has already helped set the precedent to bring similar, mandated coverage to other states.
Back in 2011, when my case prevailed, I was happy I won – I was happy more people would get – and continue to get – much-needed treatment. Most of all, I was happy my parents got their money back. But now I question whether my case was such a resounding victory. Now I wonder whether maybe insurance companies have a right to dispute covering an expensive form of treatment that has no evidence to support its efficacy, nor shell out $1,000 daily to centers who don’t provide transparency or use science-based practices. If I could do everything over again, I would sue the treatment centers, not Blue Shield: to get a refund for a product centers never delivered on – and to sanction a system that is not only exacerbating many women’s illness, but destroying our careers and personal lives, brainwashing our families and sometimes, even, killing us.
Anorexia is widely known to be the most lethal of psychiatric illnesses: my population has the highest mortality rate of any mental disorder (20 percent) and a markedly reduced life expectancy. And more than half of deaths from anorexia occur from suicide. Compared to the general public, people who suffer from anorexia are 57 times more likely to die of suicide[viii]. It is my belief that the inappropriate treatment being administered to older adults with long-term anorexia is playing a role in this. Because when you place hope in a system that says its “evidence-based” practice will make you better, but you fail – over, and over, and over again to maintain your recovery, post-discharge – you blame yourself. You think, “These reputable centers, they’ve told me they’re providing me the most current, research-based care; they tell me their prescription for recovery is right, and proven, and that if it didn’t work for me, I’m the problem, not them. I’m the one who hasn’t ‘fully surrendered’ to recovery… So clearly it’s me who’s inherently defective, not them; clearly, I’m a hopeless case and clearly, I should stop fighting for my recovery, because it’s never going to happen.”
And so you kill yourself. You’ve already hated yourself for years; and you now know you’re never going to get better. You’ve been dismissed and by clinicians as “treatment resistant*” You’re burdening your family and friends. You’ve destroyed your career. You’ve forgotten you were ever something besides a tangled knot of pathology, ever somebody who wasn’t completely defined and consumed by anorexia.
In short, you’ve no hope left and you’ve got nothing to live for – so you kill yourself.
But research emerging from pilot programs in Australia, New Zealand, British Columbia, Sweden and Canada, over the past few years, is increasingly showing that U.S. programs’ standard approaches with the SE-AN population may be to blame, after all. Alternative, community-based models of care which encourage recovery targets but focus less directly on full symptom remission and weight restoration, instead emphasizing quality-of-life improvements, are proving far more effective, long term, for women like me[ix]. They prioritize client collaboration in the setting of treatment objectives, and focus on things like achieving personal and career goals unrelated to the eating disorder, symptom minimization, and social activity, all within the context of individuals’ socio-economic and community circumstances. Progress toward recovery, improved weight gain, and far higher, program retention rates all have been markedly improved for SE-AN clients participating in these programs, as compared to standard approaches.
“For people with SE-AN, you need to keep patients at home…. We need an entirely different treatment paradigm,” said Dr. Stephen Touyz, a professor of clinical psychology at the University of Sydney and one of the leading researchers in this field. Residential or inpatient treatment “doesn’t cure anorexia for older woman with. It just gets people to put on weight… Most studies show [older] people won’t stay in current treatment programs – because that treatment isn’t a style they can tolerate… But if you offer a form that is suited to them, they can put on weight, and can go on to have a good life.”
In a paper on one of Touyz’ pilot programs – which included a one-year, follow-up on client outcomes, Touyz wrote, “These findings challenge the established [notion] that individuals with an enduring course of anorexia have little or no motivation to change and are unlikely to respond to conventional psychosocial treatments… Based on our findings, we argue that individuals with SE-AN can make significant strides in .. achieving higher quality of life along with a reduction in eating disorder pathology. By widening the treatment goals, focusing on quality of life and lessening the pressure to achieve weight gain, we were able to engage individuals with SE-AN in treatment, circumvent the ‘customary’ high drop-out rates, and bring about significant progress and achieve meaningful, positive change in their lives.”
Touyz, Strober, Bulik and other SE-AN researchers’ growing evidence about what works for women with chronic anorexia will be discussed in greater detail, later in this series. But I see the success of these alternative approaches similar to the success being found in the person-centered, “precision medicine”-type programs being increasingly used to treat a variety of medical as well as mental health disorders today. The approaches also follow the lead of the success that’s been found using harm reduction and recovery model** approaches to treat severe mental illness and addiction, in the field of social work, mental health services delivery.
Dr. Samuel Ball, executive director of Columbia’s National Center on Addiction and Substance Abuse (CASAColumbia) – whose 2012 report was the primary source for the aforementioned, Mother Jones article – told me the similarities between the eating disorder and addiction rehab industries are alarming.
“I [am] quite struck by the parallel concerns that exist between the for-profit, residential addiction rehab industry” and eating disorder treatment, Ball, a Yale professor of psychiatry, said. “It is so disheartening and potentially tragic to know that people with chronic and deadly disorders are subjected to costly treatments with such limited evidence of effectiveness.”
CASAColumbia’s report found, among other things, that individuals who enter the fragmented, poorly-overseen, residential substance abuse treatment industry rarely receive “anything that approximates evidence-based care,” and that the lack of national standards results in “exemptions from routine governmental oversight” which are considered unacceptable for all other health conditions.
“Patients face a patchwork of treatment programs with vastly different approaches; many offer unproven therapies and little medical supervision,” from centers pushing “posh residential treatment at astronomical prices,” reads the report.
That report’s findings describe an industry which sounds disturbingly similar to eating disorder rehab, to a woman who’s seen the system from the inside for years. CASAColumbia just recently began including disordered eating in its research and policy work, and Ball said a report addressing some of the problems within this industry will be published by an associated institution in the coming month.
A psychologist who studies addiction treatment told Mother Jones that part of the problem stems from a prejudice by which substance abuse is viewed as more of a moral failing than a medical condition. I would argue prejudice surrounding anorexia accounts for the minimal attention to treatment oversight found in this field as well: the disorder is widely viewed among the general public as a superficial obsession with thinness when in reality, it masks underlying psychological conditions which run far deeper. For older women or individuals with long-term anorexia, those underlying issues are even more complex, and become increasingly convoluted, exacerbated and difficult to dissect the longer one suffers.
It seems dishonest for centers serving ages 18 and up to continually advertise themselves as the go-to solution for older women, and proclaim – as they loudly do, on their Web sites – that they provide “evidence-based treatment” when most utilize practices which either lack an evidence base or have only been proven effective for adolescents. The centers establish themselves in scenic settings like beachside Malibu or the mountains of Denver, and incorporate things like yoga and equine therapy – activities which have zero scientific link to facilitating recovery from a severe eating disorder. Prohibited from riding horses due to my osteoporosis, I can’t tell you the number of hours I’ve spent shoveling horse manure, brushing down the sweaty animals, or told to paint chalk drawings on them – all in the name of “recovery.” When I would ask if, perhaps, I could spend my time instead on things like my Dialectical Behavioral Therapy workbook – something, in other words, which might translate to lasting recovery back home – the answer was always “No.” If I refused to participate, I was punished and had coveted, earned privileges – such as the ability to use the restroom in privacy – taken away.
The centers appear reputable as well as nurturing – in other words, a highly appealing godsend to individuals and families worried about loved ones’ lives. But whether the centers are actually helping individuals recover in the long-run – and in particular clients with long-term anorexia – is questionable.
*“Treatment-resistant,” a term often incorrectly applied, by psychiatrists, to my demographic, is psycho-speak for patients viewed as possessing little or no motivation to recover. This is, in actuality, rarely the case, among adults with long-term anorexia. Years of battling a miserable illness renders most of us highly motivated – demonstrated by our repeated treatment admissions – to recover and overcome inclinations we know are irrational.
**The Recovery Model, in contrast to the deficit-focused, biomedical model of mental illness, sees recovery as an ongoing, lifelong process, and emphasizes helping clients overcome obstacles to achieve personal goals, jobs, and self-sufficiency by utilizing wrap-around and integrated, community-based services. The model recognizes that individuals with severe mental illness can still be productive and functioning members of society even if not completely symptom-free. In 2003 the President’s New Freedom Commission on Mental Health recommended all mental health systems shift to a recovery-based and consumer-driven continuum of care – particularly as this approach has been proven more cost-efficient. The model still has yet to gain precedence, however.
“It’s a major problem,” Dr. Blake Woodside, co-director of Toronto General Hospital’s eating disorder programs and, like Touyz, considered one of the international community’s foremost experts on treating women with SE-AN. “In the states you have this vast sea of unregulated, private treatment. And a lot of [the programs] are providing treatment that is frankly not evidence-based: they offer instead what they think patients want… The centers don’t publish [client] outcomes, so there is no evidence as to the efficacy of their programs.”
Woodside, a professor of psychiatry at the University of Toronto who’s been working with women with severe, long-term anorexia for more than 30 years, dreads the day a client of any age is lured to a U.S. treatment center.
“Our government is spending $4-5 million sending people to the states for treatment… The problem is families are desperate. They get online and plug in a search for programs which treat anorexia and see what comes up. I mean, would you rely on that [approach] if you had cancer?” Woodside said. “The disadvantage here [in Canada] is we have waiting lists [due to socialized health care]. But the advantage is we provide evidence-based care… And we report all our outcome data. There is better regulation, and we don’t have to worry about the bottom line, about profit.”
Woodside pointed to one of the nation’s most prominent treatment centers, a Christian mission-based program in the Southwest, as the epitome of what’s wrong with our system. While the center encourages people of all faiths to admit, if you’re not Christian – beware.
“Some patients who are not Christian and go to [this center] are told that, unless they convert, they won’t get better – that the anorexia is a sign of their sin,” Woodside said, referring to Jewish clients of his who attended the program and were told this. “I’m a Christian myself; I attend service weekly, but I still know that (statement) is totally loony. And that’s certainly not evidence-based treatment!”
Woodside also mentioned one of the nation’s most popular and exclusive treatment centers in Malibu as an example of an alluring program offering questionable treatment.
“The weight restoration rate requirement, there, is one-quarter pound per week” he said, with exasperation. “I have a patient who, if she went there, would have to stay for three-and-a-half years, to get better.”
Strober noted the prevalence of improper care for my demographic is not limited to residential programs alone. For the past decade, he has become an outspoken critic of how certain ideas about causation and treatment of anorexia – such as the idea that family-based treatment is the most effective approach, for all age groups – have taken hold in clinical programs, and the need for therapists to ground their practices in the research that’s emerged from fields like neuroscience over the past several years:
“[The] increasingly popular ideas [in clinical settings] present an unbalanced picture of [anorexia], lack believability, and risk having undesirable consequences should therapists predicate interventions on their acceptance as irrefutable truths,” Strober wrote in a 2012 article for the International Journal of Eating Disorders[x]. “…Whatever the origins of anorexia, the processes involved are quire intricate. [And] paradigms that ignore complexity sacrifice real-world applicability… It is little wonder that so many patients and families tell us they feel at a loss, not knowing where to turn to for sound, factual advice.”
Family-based treatment – which has only been proven an effective, evidence-based treatment for adolescents – remains the standard modality at nearly every program, including treatment centers who claim to have addressed the problem of the underserved, SE-AN population by incorporating separate treatment tracks for this demographic.
Bulik, who also holds a position at the Karolinska Institutet in Sweden, has been working with a program there which offers different types of treatment – as well as greater autonomy – for clients who’ve had anorexia for longer periods and possess more complex, underlying conditions.
“I like seeing approaches that maximize quality of life and minimize the impact of illness in a cooperative arrangement with patients,” Bulik said, adding she also likes the idea of scheduled, respite admissions for people with chronic anorexia, so that they receive periodic tune-ups, so to speak, instead of waiting to become seriously ill or medically compromised before seeking intense treatment.
But ironically, added Bulik, “it is difficult [in the U.S.] to get insurance companies to understand that this is a reasonable approach, and one that is not only more acceptable to patients but will probably save money in the long run.”
I had vowed back in 2009, after I left what I thought would be my last treatment center, to never enter one again, but by 2011 the severity of my medical condition, as well as my near-zero functionality, forced me to consider entering The System again – as everyone told me that was the only answer. I obtained a scholarship and was shipped off to that center in Utah in 2012, where I endured eleven months of probably the most degrading, emotionally-abusive treatment of my life.
And so today, my “eating disorder” – a label I feel no longer aptly describes the complicated tangle of psychological issues I struggle with, but which remains the only label I have at my disposal – has been so exacerbated by the treatment I’ve received that I am now a barely-functioning woman inhabiting a wraith-like identity. Ritualistic food behaviors driven by severe, comorbid OCD, paralyzing depression, ever-present suicidality, and a host of other, underlying issues are my primary problems. Not a fixation on “thinness,” as most of the general population think “anorexia” to be. I like to eat; I do get hungry; and I don’t see a “fat” person when I look in the mirror – those common myths propagated by the media and, worse, believed by most eating disorder clinicians themselves.
But I don’t feel I deserve to “indulge” in food as normally and freely as most people do. I’m a 41-year-old, unemployed, single and childless woman who – in my view – brings no value to the world. I don’t exercise – in this fitness crazed society – on top of it, and all these things make me feel very, very guilty when I imbibe anything – although I still do, nonetheless. Combine that with the fact that my OCD makes every activity in my life enormously cumbersome, ritualistic, and prolonged, and you get a person whose relationship with food is inexpressibly complicated. I am slightly underweight, but not severely emaciated – but my “anorexia” is, nonetheless, severe.
For many individuals with severe eating disorders, trauma – often sexual or physical – was their illness’s primary origin. For me, however, it was being labeled “anorexic” and – as noted above, being forced to undergo the standard, adolescent-geared, treatment that comes with it – that was the trauma which turned a minor struggle to fit into this world into a disabling condition that now completely inhabits me. Now, all I am is my illness. I search but I can’t find myself anywhere. My passion is waning. My love for little pleasures is gone. Laughter is almost nonexistent. Self-hate is all encompassing. And I blame myself ceaselessly for my failure at life as well as my inability to summon the courage to take it.
Treatment was my trauma, not my savior. In my eyes, it’s what’s deprived me of the ability to impact this world . And that, for me, makes my existence – my continuing use of space and resources in a world where there are so many others much more deserving of those resources – immoral. I try to advocate for change, but I shout into a void: no one will listen. I apply for jobs or submit articles for publication, but am always passed over. My resume is too pock-marked, I possess no fancy degrees, I have no connections, and anyone who Googles me finds – thanks to that lawsuit – photos portraying me as one of those deranged, midlife “ANOREXICS.” Someone, in other words, that nobody should take seriously.
The FDA requires new psychotropic drugs undergo years of trials proving their efficacy and safety before allowing these meds on the market. Why do we not require an analogous standard for treatment centers – particularly for programs treating people battling the most lethal of all mental illnesses? Individuals with SE-AN also represent a significant socioeconomic burden: Most of us are under- or unemployed, living off government benefits, impose a heavy burden on health and other public services, battle multiple medical and mental conditions, and are a financial and emotional drain on parents or other caregivers. As the Australian and New Zealand College of Psychiatrists put it, in their recently updated, clinical practice guidelines for treating eating disorders, “People with severe and long-standing anorexia have one of the most challenging disorders in mental health care.[xi]”
Tetyana Peker, MSc – creator, writer and editor of the highly-regarded Canadian blog, “Science of Eating Disorders: Making Sense of the Latest Findings in Eating Disorder Research” – said, in an ScofEDsarticle[xii] examining the lack of outcome research on treatment programs: “The price tag is high… but evidence of treatment effectiveness is astonishingly low. And you know what I think? I think [U.S.] treatment centers should be embarrassed. And I think, wow, maybe insurance companies have a point? …Any organization or center that offers treatment (especially at such a high price) has no excuse when it comes to providing information about the effectiveness of their programs.”
I am not saying that some residential eating disorder programs don’t help some of their clients – particularly younger populations. Nor that this industry probably, for the most part, doesn’t care or truly desire to help clients recover. I also understand it is difficult, complicated and costly to conduct outcome research on eating disorder clients, post-discharge. And research funds doled out for eating disorders is paltry, compared to the government’s allocation of such funds for other mental disorders.
It’s also important to give credit to a small coalition of for-profit centers who are making diligent efforts to bring high-quality, uniform standards of treatment, as well as greater transparency and accountability, to the industry. The Residential Eating Disorders Consortium (REDC), formed in 2011 and led by Jillian Lampert, Ph.D., of The Emily Program, teamed up with the Academy of Eating Disorders to develop clinical practice guidelines they want all residential and inpatient treatment providers be required to follow. And, in 2013, REDC achieved a major coup. They got the Commission on Accreditation of Rehabilitation Facilities (CARF), one of the nation’s primary, behavioral health accreditation entities, to adopt the standards as one of its specialized, behavioral health certifications. This type of accreditation is one of the best ways to combat the varying licensing standards which plague the eating disorder industry nationwide.
CARF eating disorder accreditation requires, among other things, that programs provide as much evidence-based care as possible, as well as abide by accepted practices within the field. The criteria recommend, among other things, using, for adults, the forms of therapy proving effective in Touyz and colleagues’ studies; they also require centers employ staff with higher levels of specialty training and experience, and that they pay greater attention to clients’ unique needs and history as well as socio-economic circumstances, career goals and quality of life. The guidelines also call for more cooperative, collaborative treatment plans.
But so far only six programs have obtained the CARF eating disorder accreditation[xiii]. (REDC’s work – which also includes efforts to increase outcome research in the field – will be discussed in more detail later in this series.)
As for the rest of the programs, whether they are committed to disrupting their status quo by implementing empirically-supported treatment and providing greater client-outcome transparency, remains to be seen. These centers are, for all intents and purposes, looking more and more like businesses placing the bottom line over clients’ well-being; and they’re looking like programs which don’t mind capitalizing off our continual failures. “Come back,” the intake coordinators at these programs say. Or, “if you come to our center, instead of that other one you last attended, you’ll get better. We’re different! We individualize our treatment!”
I can tell you one thing for certain: they’re not different, and they don’t “individualize.”
All the programs I’ve attended, at least, differ in only the most minor of ways.
Considering all of the above – in addition to a variety of factors which will be discussed in the forthcoming series of articles – the need to investigate the treatment that’s being provided, whether the industry should be allowed to maintain its status quo, and what clients, families, clinicians and researchers should do until we find better solutions, is urgent. Equally important, is that we demand center directors and clinicians ask whether they are really living up to the founding mission of their programs, and that they critically examine the prejudices they hold toward a demographic they’ve dismissed as “treatment resistant” – when we are anything but.
“Practitioners see [individuals] like you as being ‘treatment-resistant’ rather than seeing that it is their treatment that is inflexible, and that that, therefore, is why the treatment isn’t working,” said Touyz.
For most of the past 11 years, I’ve been one of the many who’s blamed herself for her failure to recover, because all the therapists and clinical directors – those intimidating authority figures with intimidating degrees – told me I was the one doing something wrong: I failed because I never fully “surrendered” to recovery or a program’s rigid rules; because I didn’t work hard enough at the last center or “challenge” my deepest fears; because I would dare, when in treatment, to question whether a particular approach would work, long-term for me. Because I was, as they say in these programs, “noncompliant” for occasionally refusing to participate in activities which had no bearing on my recovery.
And honestly sometimes I’m still not sure, really, who’s to blame – me, or a flawed treatment approach for my demographic. I’ve spent years studying and researching mental illness and eating disorders – some of this in graduate school – and I know a lot, on an intellectual basis. I know a lot of what happened to me was probably wrong. But what I know on that intellectual plane doesn’t translate to my emotional core, following years of being told – and internalizing – that I’m the defective and weak one.
In my heart, I still bear the ultimate blame, for my failure; I’m the lazy coward who is unfixably defective.
So I’m also writing this story in an attempt to try and re-write my own self-narrative.
And I’m writing because there are certain things I won’t accept anymore. I’ve worked very hard to accept the things in my life which I can’t change: childlessness, singleness, destroyed career prospects, poverty, chronic mental illness, an estranged twin sister and friends, among many other things. But what I won’t accept anymore is that, no matter how hard I try – I can’t get anyone to listen to me, and that it’s the system that said it would save me that’s rendered me mute: By systematically instilling me with an internal shame I cannot shake; demolishing my self-confidence and self-worth; and leaving me with a resume that means no employer or publisher will give me the time of day.
And if no one will listen – or at the least even hire me for some, any, kind of job – I can’t live a life with purpose. And that’s unacceptable to me.
I don’t believe in an afterlife; so how I live now – that’s where meaning is, that’s how I make the space I take up in this world worth it. I entered journalism to try and fulfill a lifelong desire to try and make a difference in the world, to attempt to rectify social injustices, in whatever small way possible.
And I entered it to write; because writing is my other form of oxygen.
But the eating disorder treatment system has deprived me of even these small ambitions. And I won’t allow it anymore. The System may have destroyed my life. But I’m not going to let it destroy any others’. I may die trying – but here, right now, I’m going to make my life worth something – by, at the least, preventing the same things which happened to me from happening to any others.
Stay tuned for the rest of the series – this was merely the introduction! Sign up to receive an email when a new article in the series is posted, by using the subscription form at the bottom of this page.
If you find this series, or any other writing here helpful, please also consider donating to keep this site alive, by clicking on the “Donate” icon below. Donations are critical to my continued ability to write about mental health issues in a way that dismantles myths and stigma; improves treatment; sheds light on the truth behind the misinformation spread by the media as well as some advocates and professionals; help reduce inequities and oppression; and help provide those of us labelled “mentally ill” with a true Voice in society.
Forthcoming articles in this series include:
[i] “Eating Disorder Symptoms and Weight and Shape Concerns in a Large Web-based Convenience Sample of Women Ages 50 and Above: Results of the Gender and Body Image (GABI) Study,” by Gagne, D., Von Holle, A., Brownley, K et al in International Journal of Eating Disorders, v. 45, Issue 7, pp. 832-844; 2012.
[ii] Interview with Dr. Blake Woodside, co-director of Toronto General Hospital’s eating disorder programs, and considered one of the international community’s foremost experts on treating women with SE-AN. Woodside is also a professor of psychiatry at the University of Toronto.
[iii] “Why Adult Women Suffer from Eating Disorders,” by Michelle Konstantinovsky in Oprah Magazine, November 2012.
[iv]“Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders,” by Hay, P., Maddden, S., Newton, R et al in the Australian & New Zealand Journal of Psychiatry, Oct. 2014: http://anp.sagepub.com/content/48/11/977; and “New Evidence and Approaches in the Psychological Treatment of Severe and Enduring Anorexia Nervosa,” a paper presented by P. Hay at the 2013 European Forum Alpbach Conference: http://www.netzwerk-essstoerungen.at/download/k13_presentations/teachingday/Hay2_ED13.pdf
[v] “The research-practice gap in Eating Disorder Treatment,” by Tetyana Pekar, for Science of Eating Disorders: Making Sense of the Latest Findings in Eating Disorder Research, June 19, 2012. *Based off of the study by Wallace, L.M. & von Ransom, K.M. (2012). Perceptions and use of empirically-supported psychotherapies among eating disorder professionals. Behavior Research and Therapy, 50(3), 215-22.
[vi] “Fighting the stigma: Rising awareness of eating disorders will boost demand for clinics,” IBISWorld Industry Report 0D5999, Eating Disorder Clinics in the US, August 2013.
[vii]“The Rehab Racket: The Way we Treat Addiction is a Costly, Dangerous Mess,” by John Hill in Mother Jones, May/June 2015 Issue: http://www.motherjones.com/politics/2015/05/ryan-rogers-rehab-alcoholic-drugged
[viii] Eating Disorders Coalition fact sheet: http://www.eatingdisorderscoalition.org/documents/FactsAboutEatingDisorders2014.pdf; and http://www.healthline.com/health-news/why-severe-anorexia-is-so-different-to-treat-060415#8.
[ix] See studies such as: Touyz, S., Le Grange, D., Lacey, H., Hay, P., Maguire, S., et al (2013). Treating severe and enduring anorexia nervosa: A randomized controlled trial. Psychological Medicine, 43, 2501-2511; Williams, K., Dobney, T. ,& Geller, J. (2010). Setting the eating disorder aside: An alternative model of care. European Eating Disorders Review, 18, 90-96.; Bamford, B., Barras, C., Sly, R., Stiles-Shields, C., Touyz, S., et al (2014). Eating disorder symptoms and quality of life: Where should clinicians place their focus in severe and enduring anorexia nervosa? International Journal of Eating Disorders, 48(1).
[x] Strober, M. & Johnson, C. (2012). The need for complex ideas in anorexia nervosa: Why biology, environment, and psyche all matter, why therapists make mistakes, and why clinical benchmarks are needed for managing weight correction. International Journal of Eating Disorders, 45(2), 155-178.
[xi] ANZJP, 2014 (above).
[xii] “Should Insurance Companies Cover Residential Treatment for Eating Disorder?” by Tetyana Pekar, for Science of Eating Disorders: Making Sense of the Latest Findings in Eating Disorder Research, July, 2012: http://www.scienceofeds.org/2012/07/07/residential-treatment-programs.
[xiii] Those programs include The Emily Program, Castlewood Treatment Center, Fairhaven Treatment Center, Canopy Cove, the Houston Eating Disorders Center, and the Center for Balanced Living.
Source URL: http://adisorderedworld.com/2015/06/the-eating-disorder-residential-treatment-industrial-complex-harm-or-help-part-1-of-an-investigative-series/
by Jeanene Harlick | August 30, 2015 12:02 am
Did you know that the mentally ill are no more likely to commit acts of violence than the general public? (3-5 percent of violent acts are associated with people with severe mental illness, to be exact, according to the U.S. Department of Health and Human Services1.
Did you know that, on the contrary, people with severe mental illness are ten times more likely to be victims of violent crime rather than commit them?
No, I bet you didn’t. Due to the entrenched prejudice toward the mentally ill which saturates the Western world, and the media’s failure to ever call people out on it.
Acts of atrocious, tragic public violence have been rampant this past year in particular. And every time such an event occurs, I can literally count the seconds before some news reporter or pundit – or a family member of a victim – starts implicating “mental illness,” and associating it with gun violence and policy.
Sometimes mental illness is a factor; most of the time it isn’t. But the facts don’t really matter to family members, the general public, or the media.
It matters a hell of a lot to me. Because I’ve been labeled “mentally ill,” and its mythical association with violence is a primary reason why I experience prejudice and discrimination on a daily basis; why I can’t get a job to save my life; and why I live in poverty – despite holding college degrees and being a former, experienced journalist.
The on-air killing of Alison Parker Wednesday was a tragedy. And I don’t blame her father for being angry or even, necessarily, for dismissing all the mentally ill as unsound, “crazy people” – because this is a man in the throes of emotional pain, and he’s just an example of the unrecognized, widespread prejudice toward the mentally ill which has been indoctrinated into almost all people living in Western societies for centuries.
But using such language – and particularly in the derisive way Mr. Parker and many others routinely do – in effect lumps all those labeled “mentally ill” together, with the underlying subtext we are all deranged, all prone to violence, all unfit for full participation in American society, and that we should not be afforded the same rights as other citizens. And that is not fair, and not representative of the democratic principles our nation was founded on.
So while I don’t blame Mr. Parker, I do blame the media for failing to qualify or question such language, after this type of footage airs; I protest the media’s persistent refusal to call such language what it is (prejudice), and to remind its viewers, or readers, that terms like “crazy” are pejorative and stigmatizing, and that their use reflects and perpetuates entrenched, negative attitudes toward the mentally ill.
Let me ask you this —
How would you react if the father of a daughter fatally shot by a person of ethnicity, in public, said in the days following the shooting:
“I’m not going to let this issue drop. We’ve got to do something about chi#ks getting guns.”
“It’s senseless that her life… was taken by a nig#er with a gun.”
“He was a sp#c that got a gun, and that’s part two of where we’re going with this.”
I think it’s pretty fair to say the public reaction would be one of outrage.
Replace “ch#nk”, “n#gger,” and “sp#c” with “crazy people,” “crazy person,” and “crazy man,” and you get what Andy Parker, Alison Parker’s father, said to Fox News and CNN this week.
“Outrage” is an apt term for how many of us labeled “mentally ill” feel when we hear ourselves grouped together – when we come in many different shades – and referred to contemptuously as “crazy,” by voices brimming with disgust, in the wake of public acts of violence.
Crazy is a word just as pejorative as the epithets sometimes used to refer to other minorities. Consider the word’s origins. First used routinely in the 16th century, according to the online Oxford English Dictionary, “crazy”’s connotations then included “flawed,” “damaged,” impaired, “unsound,” “diseased,” “infirm,” “demented,” “cracked,” and “deranged2.” Today, its contemporary, dictionary definition still includes the terms “having flaws or cracks” and “deranged.” Those are anything but neutral terms.
The first recorded use of “crazy” appears to be in 1576:
“A. Fleming tr. Cicero in Panoplie Epist. 4 Remove not from the place where you be, sithence you are weake and crasie.3”
In other words: Keep us locked away, and don’t let us out in public. Segregate us. Which is pretty much the general view today – even though these views are disguised by euphemisms.
(There’s probably a lot of fascinating, additional etymology behind the derivation of the word “crazy,” but unfortunately I have neither the time nor space, currently, to dig into it.)
I’m really, really tired of being referred to with slurs, without anybody objecting. I’m really tired of the public at large and the media conflating gun violence with mental illness, when such conflation is not based on facts.
You know what? The “mentally ill” don’t kill people. People kill people. Gun violence is not about our mental health system – although I will be the first to say this system clearly needs improvement. No, I believe the escalating acts of mass, public violence is about the increasing gap between the rich and the poor; it’s about more and more people feeling disenfranchised or less-than, in a nation where consumerism is the state religion and “success” is measured by standards few can achieve; it’s about racism and classism; it’s about how hard it is to simply get by. It’s about the fact we live in a “democracy” that’s a virtual autocracy, a land filled with desperate people.
American violence is about people who feel powerless because we’re living in a nation in spiritual and cultural crisis, where social injustice is the nation’s defining characteristic, values have vanished, prejudice of all sort is rampant, and heritage a foreign concept. A place where a large number of citizens feel powerless to change their circumstances or how people view them; the powerlessness builds, one’s lack of agency becomes brutally apparent, and sometimes a proverbial straw tips a struggling person over the edge – he or she commits violence to be heard, to have some personal justice, to exert some control and agency in a world in which he or she has none.
I don’t condone violence for any of the above reasons. Whether your life is fucked or not – it never justifies killing somebody. But it’s an outright falsehood to, over and over, implicate mental illness each time a public shooting takes place. Mentally ill people don’t kill people. People kill people. Period.
How about this: let’s stop calling people who commit acts of public or mass violence “mentally ill” or “terrorists,” or “Islamist extremists,” or whatever, and just call them what they are: Bad people. Criminals. Immoral. Or, sometimes, struggling or disturbed people who, in a period where they’ve been pushed to the extreme, resort to an evil which is never justified, regardless of the underlying motives, nor the interior or external, socio-economic circumstances they may be victim of.
The irony is us “mentally ill” are far more likely to direct violence toward ourselves than others. Everyone once in a great while these public shootings are committed by someone delusional, someone profoundly, mentally disturbed. But this is the exception, not the rule.
I am all for reforming gun policy. In fact I am extremely anti-second amendment. But I don’t think it’s just the “mentally ill” who should be barred the right of bearing arms, or at the least, severely restricted. I think it’s everyone.
The reason I get so inflamed about how nobody is ever called out about the discourse surrounding the mentally ill, is that this discourse exacerbates the prejudice we already experience as one of the most heavily stigmatized, invisible minority groups in the United States today4. These aren’t just the uninformed rants of someone who happens to be “mentally ill.” I studied issues like this in grad school, and can back up my statements with research.
Social worker Palmer Reg Orovwuje and psychologist A.J.W. Taylor (2006)5, who have conducted some of that research, wrote:
“People suffering from mental disability and mental illness are among the most disadvantaged groups in society. They suffer severe personal distress, and they are stigmatized, discriminated against, marginalized, and often left vulnerable. They are denied civil, political, and social rights, and are treated less than fairly in legal procedures, clinical practice, and institutional management… The yearnings of people with mental illness to be recognized as full citizens able to enjoy the same rights as other citizens has yet to be satisfied.”
People with mental illness experience disproportionate levels of employment and housing discrimination*, among other things. The incorrect belief that most of us are a public danger or menace – “time bombs” ready to explode in violence – plays a large role in the prejudice we experience6. During the past four decades, negative attitudes rooted in these unfounded beliefs have only intensified, resulting in greater social ostracism7. Where once the “mad” were simply viewed as another form of human diversity, we are now routinely – thanks also to the disease discourse used to describe mental illness – viewed as almost subhuman, atavistic beings8.
And research shows it is mainstream media’s coverage of mental illness – including reporters’ tendency to focus on high-profile, extreme, or violent cases – that plays a significant role in the negative stereotypes people have toward us today9. One Canadian study examining media coverage related to mental illness from 2005 – 2010 found, for example, that danger, violence and criminality were direct themes in 40 percent of articles10. Positive themes relating to recovery or rehabilitation were found in only 18 percent of articles, and 83 percent of stories lacked any quotes or perspective from individuals with actual lived experience of mental illness.
This is important not only because the entrenched stigma results in higher levels of unemployment and housing but also because it is internalized, causing low self-esteem, self-prejudice and feelings of worthlessness. Studies have found that the rejection and humiliation experienced by the mentally ill is tantamount to a “second illness” – that the prejudice and other consequences experienced from being labeled “severely mentally ill” has twice as large a negative impact on us than the “mental illness” itself.11 We buy into the “master status” of “mentally ill,” start believing we’re as defective as the general public – and many clinicians – think we are, and start giving up on life in general, as well as ever being viewed as valid or valued human beings.
That, readers, is why I believe, in the rare cases it is a “mentally ill” individual who commits one of these constant acts of public violence – that it’s not because the person is “crazy”(unless they’re experiencing a psychotic break, or delusional state). I believe it is due to the prejudice, stigma, discrimination, and ridicule that person experiences from being referred to by such slurs as “crazy.”
(Keep in mind that, after reviewing the manifestoes WDBJ shooter Vester Flannigan left in his wake this week, criminologists have concluded he acted out of the belief he’d been maligned, ridiculed and discriminated against, on account of his race, throughout his career. While his beliefs appear to lack credibility, they could have stemmed from past experiences of legitimate discrimination; if anything, Flannigan’s motivations point to the underlying current of disempowerment which I believe is the primary source of violence today.)
I tried calling some media outlets Friday, after watching Andy Parker go on TV again and refer to all mentally ill individuals as “crazy” – in his shaming and derisive way – following his visit with the news station and Virginia’s governor. I called a reporter and producer to point out how the media’s unqualified coverage of such inflammatory statements exacerbates the discrimination I and others routinely face.
The New York Times reporter I spoke to countered with something like, “Well, that’s not exactly true; the mentally ill are not allowed to be discriminated against – the American With Disabilities Act (ADA) protects you against that.”
In theory, the ADA does entitle the psychiatrically disabled to the same civil rights protections, equal-opportunity employment, and accommodations of the physically disabled. In practice, however, the ADA does not.
Susan Stefan, a University of Miami law professor, has studied this issue. Among the things she’s found, after reviewing thousands of court cases, is that employers win in more than 95 percent of ADA cases filed by the psychiatrically disabled and heard in federal appellate courts12. According to Stefan, employment discrimination claims filed by the mentally ill are subject to particularly venomous attacks by ADA opponents and given “short shrift” by courts in comparison to physical disability cases.
“When President Bush signed the Americans with Disabilities Act in the Rose Garden among hundreds of people with disabilities, the mood was one of tremendous hope and triumph… Ten years later, it is increasingly clear that these hopes are not being realized for people with [mental] disabilities… [The] belief that Title I of the ADA protects an individual from employment discrimination based on psychiatric disability or perceived psychiatric disability amounts to a delusion of rights… The public is afraid of people with psychiatric disabilities. Families are ashamed of them… Children taunt them… The degree to which people with mental illness are limited in major life activities is largely irrelevant to the uneasiness and fear the conditions engender in others.”
So let me ask you, media, and anybody else who fails to question mental illness discourse – why don’t you express the same level of reprobation – or outrage – when public figures slander the mentally ill as violence-prone “crazies” as you do when people refer to ethnic minorities as “nig#ers,” “chin#s” or “spi#s”?
Will you own up to your double standard? I doubt it. But I won’t stop writing about it, or trying my damndest to change it, until you do.
*While the majority of people with mental illness want – and are able to – work, less than 15 percent are able to obtain employment. People with psychiatric disability exerpeince far greater discrimination than those with physical disabilities; our unemployment rates are 3 – 5 times higher than the general population13.
1“Mental Health Myths and Facts.” U.S. Department of Health and Human Services: http://www.mentalhealth.gov/basics/myths-facts/
2Entry for “Crazy, adj.,” accessed on the online version of the Oxford English Dictionary http://www.oed.com.ezproxy.plsinfo.org:2048/view/Entry/44007?rskey=DNyHqc&result=2#eid
3See footnoe ii.
4Corrigan, P. & Kleinlein, P. (2005). The impact of mental illness stigma. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 11-44). Washington, DC: American Psychological Association; Orovwuje, P.R. & Taylor, A.J.W. (2006). Mental health consumers, social justice and the historical antecedents of oppression. In, A.J.W. Taylor (Ed.), Justice as a basic human need (pp. 95-111). New York: Nova Science Publishers, Inc.
5Orovwuje, P.R. & Taylor, A.J.W. (2006). Mental health consumers, social justice and the historical antecedents of oppression. In, A.J.W. Taylor (Ed.), Justice as a basic human need (pp. 95-111). New York: Nova Science Publishers, Inc.
7 See Corrigan & Kleinlein (2005), above.
8See Foucault, M. (1988). Madness and Civilization. New York: Random House; and Watters, E. (2010). Crazy Like Us: The Globalization of the American Psyche. New York: Free Press.
9Corrigan, P. (2005). Mental illness stigma as social injustice: Yet another dream to be achieved. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 315-320). Washington, DC: American Psychological Association.
10Whitley, R. & Berry, S. (2013). Trends in Newspaper Coverage of Mental Illness in Canada: 2005-2010. Canadian Journal of Psychiatry. Feb2013, Vol. 58 Issue 2, p107-112.
11 Orovwuje & Taylor (2006); and Phelan, J.C., Link, B., Stueve, A., & Pescosolido, B. (2000). Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? Journal of Health and Social Behavior, 41, 188-207.
12Stefan, S. (2000, Fall). Delusions of rights: Americans with psychiatric disabilities, employment discrimination and the Americans with Disabilities Act. Alabama Law Review, 52, 271-318. Stefan also drew on this study in her analysis: Parry, J.W. (2000, May/June). Employment Decisions Under the ADA Title I – Survey Update. Mental & Physical Disability Law Reporter, 24, 348-367.
13See, again, Corrigan & Kleinlein (2005).
O’Brien, G. and Brown, M. (2009). Persons with mental illness and the ADA: Implications for the social work profession. Social Work in Mental Health, 7(5), 442-457.
Mackelprang, R. & Salsgiver, R.O. (1999). Persons with psychiatric disabilities. In, Disability: A diversity model approach in human service practice (pp. 167-171). Pacific Grove, CA: Brooks/Cole Publishing Co.
Martin, J., Pescosolido, B., & Tuch, S. (2000). Of fear and loathing: The role of “disturbing behavior,” labels, and causal attributions in shaping public attitudes toward people with mental illness. Journal of Health and Social Behavior, 41, 208-223.
Source URL: http://adisorderedworld.com/2015/08/dear-mr-parker-please-stop-referring-to-us-as-crazy-and-conflating-mental-illness-with-violence-dear-media-please-stop-letting-everyone-you-interview-get-away/
Copyright ©2017 A Disordered World unless otherwise noted.