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.
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Forthcoming articles in this series include:
- Part 2 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 In State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control
- Part 3: An Essential, Failed Check on the System: The Dearth of Client Outcome Tracking by For-Profit, Eating Disorder Centers; How it Contrasts with Transparency Provided by Hospital/University-Based Programs as well as Treatment Centers Outside the U.S.; And Efforts Being Made by a Small Coalition of Quality-Committed, Residential Centers to Remedy This
- Part 4 What’s So Wrong With Standard Treatment Practices Used With Adult Clients in Most U.S. Programs Today, and a Deeper Look at the Novel Approaches Being Piloted in Other Countries That are Showing Better Results
- Part 5 Inside Those Doors – My Story and Other Women’s; What Really Goes on Inside a Residential, Eating Disorder Treatment Center – Prepare to be Shocked
- Part 6 Why Do Some Women Go on to Develop Chronic Eating Disorders, and Many Others Don’t? Quick Answer: It’s Different for Everyone, But Research Indicates Some Common, Underlying Issues and Conditions
- More Importantly – Is it Time to Do Away with Eating Disorder Labels Altogether? They Take Away from the Unique Conglomeration of Underlying Causation for Every Client, Placing Treatment Focus Instead on Superficial, Behavioral Manifestations of Inextricably Complicated Problems Which Can Only be Dissected Individual by Individual
- Part 7 Proposed Solutions: The Types of Systemic Change Research and Personal Experience Suggest Needs to Occur, to Help Improve Recovery Rates – and Save the Lives – of Women With Long Term Eating Disorders
[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.