An Obama-Era Bill Finally Gives Hope for Treating Eating Disorders Like Mine
Bulimia, like all eating disorders, is usually described by a compendium of facts, on informational websites and “About” pages for clinics that are, more often than not, for-profit. They talk about the cold mechanics of it—you binge, you purge, you live, you learn—and the generally accepted root cause, which is, as the National Eating Disorders Association (NEDA) calls it, “self-esteem overly related to body image,” a generalized website diagnosis that could be applied to most eating disorders, if not all, in one way or another.
But bulimia, as any good ED specialist will tell you, is not at all like any other eating disorder, even within a comorbidity (the pleasant way of referring to a patient having two or more psychological disorders in tandem); anorexics tend to have very different needs from bulimics, who have different needs from those with binge eating disorder, and bulimarexics have other complex needs altogether. Put them in a room together, as another therapist told me from the beginning, and sometimes a thing like a turf war will transpire.
Viscerally, I think that’s because the need—the hunger you cannot fill, the disgust that comes when you try—creates a mindset that manifests as greedy territorialism. I can’t speak for anyone with anorexia, but from a bulimic’s standpoint, there’s the idea that a person with the ability to not eat for days is somehow stronger, in possession of more willpower, more control. And control is the currency of the bulimic, the thing we’re always hoping to exert—even as we’re spiraling downward.
For some, and for me, it wasn’t about eating so much as the compulsive desire to cease feeling, and to regulate my reaction to painful situations, as though the binge-purge cycle was my emotional thermostat. The binging was the imbibing of my shame, which I carried close through the years, the self-blame of sexual abuse and assault. The purging was the catharsis, it created a high. A physical high—not just the rush of unloading the food, immediately tamped down by tears and swollen lymph nodes and a frantic reach for the toothpaste and mouthwash to feebly cover it up—but the rush of knowing I’d conquered something. And maybe that’s where the mechanical description of the disease converges with the visceral reality of it. Bulimia, for me, was a tool to not deal with things I didn’t know how to deal with. I had something inside of me. And then I let it go.
How serotonin factors in the brains of bulimics varies and is still under dispute. For me it was fairly obvious, in part because, during treatment, my bulimic urges were reduced within the first month of being prescribed even a low dose of Escitalopram (also known as Lexapro), an SSRI used to treat depression, anxiety, and other issues. The feeling I’d had my whole life—of living beneath the surface of a murky lake—gradually cleared. After years of individual and group therapy and targeted medical care, I was able to work through the issues at their core, and kick.
Last December, President Obama signed the 21st Century Cures Act into law, a bill which contained broad provisions for health research and the expansion of technology. Within that bill included official language about eating disorder research and awareness. It’s the first time in history that the government has acknowledged eating disorders, and the allotment of health insurance for the treatment of them. The main provision is that it mandates that insurance companies must include residential treatment for eating disorders under their mental health coverage, which is lifesaving: anorexics have the highest rate of death among all those suffering from mental health issues, far higher even than schizophrenia, the second deadliest. That sufferers of a disorder that is so massively common yet still marginalized—even culturally celebrated, in some corners of US media—now have a foundation for treatment is monumental.
This advancement was 17 years in the making; 21st Century Cures incorporates language from the Anna Westin Act of 2015, named for Anna Westin, a 22-year-old native of Chaska, Minnesota, who died by suicide as a direct result of her anorexia nervosa in the year 2000. Pushed by her mother, Kitty, and initially taken to Congress by then-Senator Paul Wellstone, it was finally via the efforts of Senator Amy Klobuchar (D-MN) that any protection for those with eating disorders finally passed. Klobuchar picked up the mantle from her predecessors in part because Anna Westin’s story was so resonant—a vibrant young woman with a caring family who badly needed treatment for her eating disorder. Westin’s plea was rejected by her insurance company as “not medically necessary,” and she struggled for two years, until she could no longer bear it.
But even now, as this hard-won provision in the 21st Century Cures Act kicks in, Sen. Klobuchar is still personally coping with the toll of the disease. Just before Jezebel spoke with the senator over the phone, she said, she had left the house of some friends whose daughter, Clare Humphrey, had also died by suicide after a long struggle with an eating disorder—something her parents made a point of mentioning in her obituary. “She interned with my office two summers ago and everyone just adored her,” Sen. Klobuchar told me. “It’s just happening all the time. When you have something like this with such a high rate of death, we should really be doing more.”
Practically, that was ensuring not only that insurance companies would be required to cover eating disorder treatment, but also that education and awareness would be integral to the program, and making sure best practices are communicated from state to state as infrastructure just begins dealing with this issue. “My focus was on getting Republican support from the beginning, because I wanted to make it bipartisan so we could pass it. Kitty [Westin] was so good at making the case and there’s nothing better than having an advocate in someone who’s lived through it,” Sen. Klobuchar told Jezebel. “We also needed a vehicle to hook it on, because it’s really hard to pass those by themselves. And so the Cures Act was perfect, the crowning moment of Joe Biden’s career; that we were able to hook it onto there made a real difference.”
Minnesota’s very first residential eating disorders treatment center was the Anna Westin House, which opened in 2002. Despite these advances, some states still don’t have targeted inpatient care, and only one in 10 Americans with eating disorders receive treatment at all, according to the Eating Disorders Coalition. The gains made through 21st Century Cures mainly affect those who are covered by health insurance; the uninsured still struggle to find affordable treatment if at all (though everyone will benefit, eventually, from the heightened awareness and education it provides). Even still, in January, the Chaska Herald ran a piece about the passage of the Anna Westin Act, noting that Anna had finally been “honored 17 years later.”
“It’s helped us all heal,” Kitty Westin told the Herald.
My primary therapist, who I initially discovered through a sliding-scale nonprofit and who I’ve now seen for nearly 13 years, felt that my eating disorder was outside her expertise. (After I’d felt comfortable enough to tell her about it, of course, which took several months.) And so in the process of first treating me, she recommended I also try a number of clinics which specialized in EDs, so that I could receive proper and immediate care—the first time since a concerned sixth grade teacher pulled me aside at recess that anyone seemed to know what to do to help me.
I remember vividly the day I phoned the first of these clinics, which unbeknownst to my therapist was then one of America’s many for-profit eating disorder institutions. As I spoke to them on my little blue flip phone on my lunch hour outside of Grand Central Station, the institution gave me an intake fee and, based on a cursory conversation, all but assured me I needed to come in for inpatient treatment. All of this, per their initial estimate, amounted to thousands of dollars. At the time, I had a day job I hated with a just-livable New York salary, and no health insurance. The Obama presidency was still four years away; the Affordable Care Act, six. I hung up certain I would be in the grips of this disorder forever, and hopeless.
I was fortunate in that my devoted and diligent therapist was shocked by this development, and helped me find a psychiatrist who specialized in EDs who was willing to cut me a break here and there. I was fortunate in that, after years of tumbling hopeless within a bulimic cycle, I was able to break out of it through outpatient psychiatry, a small amount of medical monitoring and group therapy and, most importantly, facing and coping with my eating disorder’s underlying causes. (I still spent tens of thousands of dollars out of pocket, but over the course of several years rather than days.) The maintenance of this health has been an occasional struggle; at various points in my early recovery I swapped binging and purging with obsessive exercise with drinking with binging again. But I am no longer in its grip.
I am fortunate in that I found the means, and eventually that the conversation has opened up. Janet Jackson, Demi Lovato, Sophie Grégoire Trudeau, Kesha, Brandy, Lady Gaga, Paula Abdul and Nicole Scherzinger are just some of the more famous women who’ve come forward with their own struggles and raised awareness about the way this disorder affects so many women and men in the U.S.—and, most importantly, that it’s nothing to feel ashamed of, even though shame can be an eating disorder’s most pervasive foundation. Somehow among all this, recognition has translated to a path to healing.
If you or someone you know needs help with an eating disorder, please contact the nonprofit National Eating Disorders Association hotline through phone at (800) 931-2237, through helpline chat or via text. If you have an emergency, text NEDA to 741741.