The Girl Who Wouldn't Drink Water

Eating Disorder Not Otherwise Specified is a catch-all category for disordered eating that doesn't fit under the umbrellas of anorexia, bulimia, or binge eating. It's often left undiagnosed and can be extremely dangerous.
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Shira Gusfield doesn't like anything about herself. Most of all, she explains, fidgeting and biting her lip, she hates her body.

“It kills me. It kills me,” she says, shaking her head as she explains how hard it is to have gained so much weight; the 70 pounds that she lost over a four-year period, and then some. “I hate it.” The 21-year-old is sharp and matter-of-fact. She has no illusions about the miracle of therapy, and believes she’s never known what normal eating looks like.

Right now, she is in “partial recovery.” And things are indeed a bit better than they were three years ago, though she was thinner then (never thin, though, certainly never too thin). She speaks as though years of therapy have rewired her somewhat, remembering her childhood self fondly. As a quiet and dreamy 7-year-old, Shira remembers, she’d scooter around her cul-de-sac for hours, babbling made-up languages as she pretended to embody little girls from faraway lands.

Still, there's doom even in this happy memory, a foreshadowing of sorts.

“I guess I see it now as a sort of coping mechanism for the craziness that was going on around me,” she says. “An escape.”

And who could blame her for wanting one? Two years before, when she was five, there was the ballet class that marked the pivot point to her relationship with her body. Then her sister’s comments, her mom’s hints, her days in solitude amidst a crowd of other seventh-graders. Nearly 10 years later, Shira feels so alone in her symptoms she’s not sure what she can tell me. Halfway through her biography, she stumbles; her sentences, already padded with circuitous “likes” and “you knows,” falter and fail.

“Look,” she says at one point. “I’ll tell you this, but I’m not sure I want you to write it. I hesitate to… to…”

“Basically,” she continues, “at one point I decided I was going to see—and this was more for curiosity’s sake—I wanted to see how long I could go without drinking water.”

*  *  *

This practice of not drinking water (among other factors) places Shira into a little-known, rarely-understood, and infrequently-treated category of eating disorder—EDNOS, or “eating disorder not otherwise specified.” Forty to sixty percent of eating disordered patients fall into the EDNOS category, which has been shown to have the highest death rates of any eating disorder. But because most sufferers maintain a relatively normal body weight, doctors and others consider them “safer” than anorexia, bulimia, or binge-eating disorder.

Once patients with unspecified eating disorders do recognize their symptoms and seek treatment, widespread misunderstanding can prevent them from getting proper diagnoses, insurance coverage, and care. In Shira’s case, her disorder went undiagnosed until the second semester of her senior year in high school—and until she was forced to leave college for medical reasons, she didn’t accept the diagnosis herself. She’s still too sick to attend a full-time university, and has to pay for much of her treatment out of pocket. 

I admit, when I waited for my source at the Barnes and Noble café, I’d brought some assumptions to the table about eating disorders. I envisioned talking to a skinny girl with a shaky grip on reality, and I’d expected to come away with a sad but predicable tale of shedding pounds and hair. Instead, I left with a mess.

I realize now that the issue was not with the mess; it was with my expectations.

*  *  *

No single factor can predict an eating disorder, but an assortment, taken together, can help us guess.

Recent studies indicate certain genetic variations may leave patients at greater risk, and a recent study of twins in the International Journal of Eating Disorders found that genetically similar people idolize celebrity bodies to similar degrees, suggesting tendencies toward perfectionism and a focus on body image may be rooted in our DNA.

Next are psychological factors, which often blur into the realm of biology because of their hereditary and chemical components. Mood disorders like anxiety and depression play such a huge role in the development of eating disorders that Pam, an eating disorder therapist at a clinic in Evanston, Illinois, says an eating disorder is “always a dual diagnosis.” Other risk factors include high IQ (especially for anorexia), distorted perceptions of distance and body size, and some measurable degree of autism.

Social factors include media, peers, and family, all of which can exert positive or negative influences. One youth treatment program saw record levels of success once it began involving patients’ families, but the “family factor” works both ways; studies show parents with eating disorders are more likely to pass behaviors onto their kids, and parents’ emotional neglect and diet-related comments have been linked to increases in eating disordered behavior, especially among young girls.

But we still can’t predict who will develop an eating disorder just by observing these traits.

“You could say hindsight is 20/20,” says Ellen Fitzsimmons-Craft, an intern at the University of Chicago’s eating disorders clinic. She adds that the media’s relationship with eating disorders glamorizes them over other mental illnesses. “We wouldn’t see someone suffering from OCD or depression on the cover of a magazine,” she says. This relationship is almost certainly harmful. In the U.K., more children under 10 were hospitalized in 2013 for eating disorders than any other year on record and studies suggest the growing ubiquity of media—particularly social media—is to blame.

But cultural triggers do not exist in the media alone. Recently, certain fitness programs in American schools designed to combat obesity have come under fire after mandatory body mass index (BMI) report cards implemented in some school districts spurred eating disorder-like behaviors in some students. One problem may be the BMI measure itself, which was originally designed to analyze vast swathes of humanity, not individuals.

And personal fitness is far more complicated than scale makers, elliptical designers or diet planners would have us believe. “Americans have this [wrong] idea that fitness is a body type,’ says Matt Wetsel, an eating disorder activist and recovered anorexic. “I’ve seen lots of skinny kids who are super unhealthy, eat like shit, and nobody calls them out on it.”

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Susie Neilson is writer based in Evanston, Illinois. Her work has appeared in Popular Science and SF Weekly.

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