“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.