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.