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.