NEDA Inclusive? Think Again

In January the National Eating Disorders Association – much to my surprise – reached out and encouraged me to submit a proposal to speak at their annual, fall conference – something I would have normally never considered attempting, figuring I’d have no chance at being accepted.

But the conference coordinator, Caitlin Graham, said NEDA had run across an interview I’d done, where I’d expressed frustration at the lack of client perspectives at NEDA conferences. She said NEDA was striving to make this year’s conference, which takes place in San Diego in October, more inclusive and relevant to people personally affected by eating disorders. Her e-mail seemed to indicate that, finally my voice was going to be heard:

“Your concerns go directly to the heart of the conference’s focus,” Graham wrote. “Given your insurance fight and the fact that many of our attendees will be from California, your story is very likely to resonate with the audience… We want to make the conference work for you and all other attendees, so feel free to be brutally honest!”

Well, I was indeed “brutally honest,” and submitted a proposal challenging the types of cookie-cutter treatment – particularly in residential and inpatient programs – adults with long-term anorexia often receive and the need to modify such treatment to meet the very different needs of my demographic. This need is starting to be backed up by evidence from pilot programs – being led primarily by researchers in Australia, Toronto and British Columbia – which are using different, recovery-model based approaches for adults with chronic anorexia. My proposal was moderate, balanced, and purposely non-attacking, in an effort to invite productive discussion of this issue and suggest ways to improve treatment outcomes for women like me. All the psychiatrists and researchers in the field I showed the proposal to, for review, said it was well-done, well-researched, and representative of a much-needed, unheard perspective; they were almost certain my proposal would be accepted.

It wasn’t. I received my official rejection email – an automated email blast sent by some lower-level staff member – a few weeks ago.

Considering that NEDA’s Platinum and Gold sustaining sponsors – i.e. their primary funding source – are residential treatment programs, I guess I shouldn’t have been too surprised.

But I was devastated, nonetheless.

NEDA, in case you don’t know, is probably the most influential nonprofit eating disorder advocacy group in this nation. Its annual conference draws the biggest names in the field every year to present workshops and keynote speeches on urgent and important issues surrounding improving outcomes for individuals battling eating disorders.

I had placed my last hopes at resurrecting a career or meaningful life of some sort, in being accepted to speak at that NEDA conference. While clearly I gave NEDA’s acceptance too much weight, I saw having a platform there as my last shot at anything – however distorted that perception may have been.

I won’t get into the details of my state of mind the two days following the rejection: but let’s just say that returned suicidality is an understatement.

Somehow – I really don’t know where it came from – I eventually summoned the last milligram of hope remaining inside. I attempted to turn my despair into determination to get my story and my views heard, once and for all. I started writing an investigative, in-depth story based, in part, on the ideas included in my NEDA proposal. I am working on it now, and hope to post it on this site within the next two weeks.

For now, however, here is the proposal NEDA rejected (formatted according to the submission guidelines they provided us; also please keep in mind some of the ideas, research, and suggestions included below have changed some, based on the many interviews I’ve conducted and scholarly articles I’ve read over the past few months). What do you think? Should it – or at least some client-authored proposal – have been accepted? If you think so, I encourage you to contact NEDA to demand that the voices of people who’ve actually experienced the ravages of long-term eating disorders be included at influential venues like theirs.

NEDALogo2

MY NEDA PROPOSAL

Can you hear me now? Why Residential Treatment for Older Adults with Anorexia is Hurting More Than Helping; What the Treatment Community Simply Doesn’t Get; and Why we Must be Included at the Table as Legitimate Voices in Designing Efficacious Treatment Models

Presenter information

Jeanene Harlick; lead plaintiff in the landmark lawsuit, Harlick v. Blue Shield of California

San Mateo, CA 94402

Bio sketch:

I brought coverage of residential treatment for eating disorders to California with my pioneering 2011 lawsuitAt 41, I am long-time veteran of the ED residential treatment system. Prior to 2004 and my first treatment program, I was a successful journalist; I went on to nearly complete an MSW degree until a severe relapse forced me to re-enter the system. As a client, writer, and former graduate student, I straddle multiple worlds & bring unique perspective to designing effective treatment for older adults.

(resume attached)

Detailed Description

From a woman you’d least expect to hear it comes a critique of residential treatment centers (RTCs), as well as a discussion of how clinicians display a fundamental misunderstanding of what perpetuates chronic anorexia (AN) in older adults. In the introduction, I call on the “treatment industrial complex” – a $2.7 billion industry in 2013, according to IBISWorld – to stop making excuses for its failure to systematically and scientifically track client outcomes long-term. Early research into those with “Severe and Enduring Anorexia” (SE-AN) is already showing that alternative forms of treatment are proving more effective than residential. I point out the urgent need to understand and treat these population differently – and separately – from the much-younger clients they are routinely grouped with.

Following this introduction, I start the discussion with a look at some of the unique factors which sustain AN in older adults. I stress how it is essential to understand the continually-evolving etiology of chronic AN – its biological, sociocultural and psychological fuels – as well as how these factors play out in unique behavioral ways. Sustaining factors are irreducibly unique and different for every woman, inextricably complex, and rarely have anything to do with social pressure to be “thin.”

I next challenge the ED field to jettison its entire conceptualization of “eating disorders” for older women. Much like NIMH’s RDoC initiative, there is a need to focus less on symptoms and more on the underlying disorders, social/environmental influences, and neurodevelopmental processes which stoke EDs’ fires. I discuss how the ED community needs to catch up to some other fields’ more progressive conceptualization of mental illness, briefly touching on perspectives such as neurodiversity, social constructivism, labeling theory, disability theory, the human variation model of mental illness, & existentialist and transpersonal psychology approaches which embrace the range of human psychology and gifts this range offers. These perspectives are associated with an urgent need for significantly-increased collaboration between psychiatry & social work, researchers & clinicians, treatment programs & academia, hospitals and community-based services, and it must occur in conjunction with bringing clients to the table. I also touch on the need to look to alternative service models such as the Consumer Movement and Recovery Model, and how their frameworks can be translated to AN treatment.

Based on the above points, I then explain why prevailing treatment models in residential centers are ineffective for a large segment of older women, painting a portrait – for the uninitiated – of what older women routinely experience in such centers. I detail standard practices and conditions which – while they may work for younger women, particularly women with strong social support, careers, significant others, and financial stability to return to – simply fail to translate to older women, much less produce a motivating, nurturing environment conducive to lasting healing. This part of the presentation will include role plays – with audience participation – contrasting what non-treatment professionals and family members think occurs in RTCs compared to the type of interactions which actually occur between staff and clients in RTCs.

I close with a proposal of tentative solutions, including – assuming medical stability – whether community-based treatment should be shifted to the first line of treatment for older adults, as well as a passionate call for the ED community to heed voices like mine. The failure of ED treatment professionals to take into account the unique background and needs of older adults, look outside the box, and critically examine their practices and beliefs is not only endangering our lives, but appears to reflect an unconscious prejudice they hold against the very women I know they truly desire to help.

Brief summary

From the woman whose landmark lawsuit brought residential treatment coverage to California comes a constructive critique of the system, as well as a discussion of how clinicians display a fundamental misunderstanding of what perpetuates chronic anorexia (AN) in older adults. Contrary to popular belief in the academic and treatment communities, the majority of older women with severe and chronic AN possess high motivation to change, are not “treatment resistant” and – after years of the deep introspection, therapy, and proactive research that comes with trying to overcome a miserable, disabling condition – possess deep insight into the causes and possible cures for their ED. Recent, controlled studies on women with long-term AN is already showing that alternative forms of community-based treatment which prioritize quality of life, individual life goals, and harm reduction over conventional markers of recovery is proving more effective than standard protocols. Yet, invariably, older adults are still most-often shipped off to residential centers, where they are treated alongside 18-year-old clients with completely different issues and administered the same, rote treatment models that fail to take into account these mature women’s needs. In this presentation I discuss the unique, highly-individualistic and complex factors which fuel chronic eating disorders; challenge professionals to re-conceptualize “eating disorders” and foster greater cross-discipline collaboration; give the audience a look inside RTCs to understand why centers’ models fail to resonate with older adults; and offer tentative solutions for modifying and transforming standard treatment approaches for this most lethal mental illness.

Three measureable learning objectives

  1. Help treatment professionals understand the unique factors and evolving etiology which sustain AN in older women: These includes circumstances such as inability to find work post-discharge, due to large resume gaps and stigma, producing not only severe financial stress but feelings of purposeless, worthlessness, shame, and powerlessness; the social isolation resulting from joblessness as well as an often-single status; existential issues which naturally gain import – particularly for the sensitive and introspective, anorectic population – as one ages; internalized shame over repeated treatment failures, for which the client is nearly-always told she is to blame; unique, ingrained, physiological body issues; and a host of other factors.
  1. From a client perspective, targeting what residential treatment centers get wrong when it comes to treating older women: This includes practices such as failure to screen for underlying conditions like severe OCD; degrading and infantilizing treatment by the college-age, direct care staff who spend the majority of time with clients; an inherent inability to provide true “exposure-response therapy” in an artificial environment that is removed from home and where one has no choice in whether to eat or not, or whether to maintain weight or not; a hierarchical, reward-punishment based system which includes no true collaboration between upper-level staff and client; automatic branding of older adults who question treatment approaches as “resistant” and “failing to fully surrender”; setting unrealistic weight targets which are unsustainable for a long-term anorexic following discharge; failing to question whether returning to yet another treatment center following relapse is the answer, when the cycling in-and-out of them has been proven not to work, and impacts an adult woman’s chances of securing employment the longer she stays within the system; failing to consider, as well, how the individual’s shame over repeated inpatient stays ironically ends up contributing to the perpetuation of the illness. In short, I propose that perhaps, in the end, all these centers truly teach older women is “learned helplessness.”
  1. Proposed solutions for modifying/transforming standard treatment approaches for older women with AN: As noted above, I first suggest that novel forms of intensive community-based treatment be the first line of treatment for SE-AN women, pointing to recent studies indicating their effectiveness. For residential centers, I suggest forms of modification such as separate centers for older adults; creating foundational models which take into account this population’s aforementioned, unique needs: such as requiring higher age and education requirements for direct care staff, increased flexibility and open time for clients who have already repeatedly experienced the typical 7am – 8pm, daily group/therapy/meal schedule of previous centers, and truly individualistic and collaborative treatment relationships between client and therapist. Other proposed solutions include consideration of emerging treatment methods from neurosciece which are gaining a solid evidence base, such as: transcranial magnetic stimulation, deep brain stimulation, psilocybin & ketamine, among other interventions; greater use of narrative therapy/re-storying and transcendentalist therapeutic approaches in programs for older adults; creating “sober living communities” where AN individuals can live, permanently, post-discharge and be not only surrounded by peers with whom they can truly connect but also work together with to maintain recovery and provide accountability. Finally, there is a general need for treatment providers to place much greater focus on ensuring the ability of older clients to obtain work, financial stability and friends within their community, post-discharge.

Handouts

In addition to a printable version of the Powerpoint presentation, I will include 2-3 fact sheets on topics such as “Most common myths about anorexia in older women,” and “Top ten proposed solutions for transforming treatment for older adults so we stop dying.”

Proposed Track

Clinical Tools

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6 comments

  1. Kat E Grin says:

    Just because NEDA is the most well-known organization, doesn’t mean they are the only one. Many others would welcome your perspective. Keep going, the ED world needs your voice.

  2. Lisa Guimont says:

    Jeanene, it’s very unfortunate your proposal for NEDA was regected. Your voice and those of other ‘older’ adults is crucial in driving change in treatment modalities to allow success for all. I am a member of International Eating Disorder Action and feel your voice there will be warmly and activley received. Several members of IEDA will be attending the NEDA conference in October and I have a feeling that with your permission, they will work to help have your voice be heard. I hope you consider joining us at International Eating Disorder Action. I will be sharing this blog post there today as we have many who will add to your voice.

    • Jeanene Harlick says:

      Dear Lisa – thank you so much for yours and IEDA’s support. I would love to join your advocacy group and will look at your Web site. Thank you so much for validating my voice and the issues I am trying to bring awareness to. To feel like I am helping people – and hopefully spurring change, and preventing other lives from being harmed – is as I’ve stated, the most important thing to me.

  3. Faith Yesner says:

    Hi Jeanene,
    I too am so disappointed that NEDA did not accept your proposal. I know Caitlyn, I am presenting this year on the family panel about advocacy, and I will certainly reach out to her about my disappointment…I have a daughter who is 24 and has been suffering for 7 years now. Your info about how se-an is treated needs to be heard and addressed. Other doors will open, keep pursuing them!! You have an important message and it will be heard! Hope we meet in Oct!!

  4. Hello Jeanene, Please don’t worry about NEDA, look who funds them. The ED Corporate Baloney Psychiatric-backed etcetera. We know the insurance corporate greed ties in as well. I was thinking up a You-Tube that would explain to those outside the System how it all ties in together (just the very basics). We need to work outside the System. Know what happened to me at the 2014 NEDA walk when I went up to one of their people and stated that I wanted to start a treatment center of my own that didn’t lock people up and was based on caring and compassion? She gave me a blank stare, like I was “delusional.” Like she was thinking “Yeah, sure, she can’t do that. She’s looks like a welfare case.” I have a master’s degree, too. I know what you mean about being treated like a child. I sure got tired of the Teddie bears and first grade insulting handouts. I tried to keep an open mind but then started to speak out. I was told to shut up, that I was “triggering” to other patients.” By talking about human rights? Yep. Prisons for kids should be torn down. We need to start fresh. I told myself i n 2012 that I would change the world for people with ED. We can do this. Against force, pro-caring, pro-community. I’m glad we met. My blog is invisible right now for privacy reasons but will reappear shortly. I can be contacted at julie@juliegreene.net.

  5. Anonymous says:

    Jeanene, this well-written article was a breath of fresh air. Your piece is insightful and resonates with my experiences in “eating disorder treatment” as well. Your points are valid not only for older women but for all eating strugglers, the centers do ingrain the learned helplessness and devalue the individual voice in favor of imposing “evidence based treatments” no matter what the age. I commend your bravery and feel immense relief that someone finally came out and said it about this topic!!! And, your ability to be diplomatic and speak from experience is so valuable. It truly was their loss to not have you. I do not think that you were rejected based on your writing or yourself but rather because they essentially want human props (poster children for treatment) to speak and proclaim that inpatient treatment “saved” them from their ‘disorder’. Unfortunately, NEDA seems to in a way be the NAMI of eating disorders. This piece is spot on, and I am grateful for your publishing it.

    In solidarity,
    ‘Anonymous’.
    (living battling anorexia for 13 years, the past 8 in effort to find recovery)

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