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/
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