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.”

For a larger person with healthier habits, he notes, the opposite is true.

Fitzsimmons-Craft calls the mélange of contributing factors “bio-psychosocial.” “As the saying goes, biology loads the gun for an eating disorder, but it’s psychosocial factors that will pull the trigger,” she says.

*  *  *

For Shira, it was an episode of The Biggest Loser. She remembers watching the show’s finale with her parents in 8th grade and watching their reaction as dozens of slender bodies jogged onto the stage, free from the cocoons of fat they’d just starved and exercised away in reality television’s most popular boot camp.

The very next week, a scale appeared in the house. As soon as Shira stepped onto it and read the number, something clicked inside of her.

“I was like, ‘Holy crap, I’m huge,’” she said. “I always knew I was overweight, but [when] I weighed myself… I thought, ‘something’s gotta change.’”

Shira slipped into a cycle of self-starvation, borrowing diet “rules” from books and websites to accelerate the process. What she began gradually in 8th grade became a full-blown illness over the next three years, reinforced by her parents’ approval, her self-engineered trips to weight loss camps, and social isolation. She wavered between seriously disordered and more ordinary eating behavior until she traveled to Israel during the spring semester of her junior year of high school. It was then she began to go for days without eating, eat “a couple bites of something,” and then go several more days again. She also started restricting her water intake, at one point going four days without a single sip.

Shira’s program’s managers found out eventually, assigning her to a dietician and calling her parents. But she still found it easy to maintain her disordered behavior—all she had to do was lie. She lied to her dietician, who bumped up her meal plan. One late night phone call, she lied to her parents, assuring them that nothing was wrong. “I said, ‘Hey Mom and Dad, I know they called you, but I just want to tell you…I just wanted to lose some weight [and] I just went a little overboard,” she remembers. “And they said, ‘oh, that’s fine.’”

Shira finished out the semester, but her malnourished body and mind rendered her incapable of remembering it fondly. Constantly freezing, exhausted, and “barely functioning,” she recalls her semester abroad as when things “spun totally out of control.”

That she was exhibiting behaviors characteristic of a patient with full-blown anorexia, however, never occurred to her, because dieticians and program administrators never mentioned the possibility.

“They never mentioned [that word] to me,” she says. “The word anorexic was never used.”

She refused to believe she had an eating disorder until two years later, when she went on medical leave from college.

At age 16, Shira’s normal weight put her 85 percent above a minimum healthy weight, the formal diagnostic standard for anorexia. That her other symptoms were dismissed indicates a misdirected focus on external indicators of eating disorders, one which may lead to dismissal of a serious disorder even as the sufferer manifests other serious physical symptoms like unregulated body temperature, lanugo (a fine downy coating that grows on the skin in response to fat loss), or even organ failure. National news outlets have reported several episodes of hospital negligence in this vein—in one case, a bulimic woman named Leslie George died of a ruptured stomach because she didn’t get timely treatment in the emergency room.

For overweight patients, misinformation can lead to negative behaviors, especially when similarly misinformed peers and institutions reinforce those behaviors with praise. TV shows like The Biggest Loser emphasize quantity of weight loss over quality, even when studies show that such extreme forms of dieting are ineffective over the long term. Dieting itself is a form of self-imposed starvation, and as such it can lead to the same sorts of health conditions as anorexia and other associated eating disorders – in some cases, dieting has even induced anorexic behavior in otherwise-healthy individuals. Yet the U.S. weight loss market is worth $60.9 billion.

*  *  *

When Shira was accepted into her dream school—Carleton College, a small private university in Minnesota—she was in a partial hospitalization program, and her dieticians strongly advised against her attendance. She had to make a massive push to prove to her parents she could go.

And for the first five weeks, it worked. She engaged in no restrictive behavior, keeping a nutritionist regularly updated on her progress. Then the behaviors started again. Eventually she was hospitalized for orthostatic hypotension, a dramatic drop in blood pressure caused by dehydration and malnutrition. Now, as she weaves together the states, universities, and rehab programs of her college years, a pattern emerges. Relapse, treatment, recovery. Relapse. She stops abruptly.

“Sorry,” she says. “It’s a lot of relapses.”

Now Shira attends outpatient therapy in Evanston. She wants to attend classes at Northwestern University’s School of Continuing Studies to get a nursing degree. She still isn’t well enough to attend college full-time.

Moreover, her organs could fail if she continues to restrict food and water. But she can’t stop. “It sucks,” she says. “Those rules still haunt me. My behaviors still haunt me.” The water rule is especially painful and “stupid,” she says. It doesn’t even help her lose weight.

To complicate matters, she says, sometimes she thinks her eating disorder is the best thing that ever happened to her. “You get on a kind of high,” she says. “And at times, you think it’s the worst.”

Which one is right? I ask her. She pauses. Neither, she decides. “It’s not something that happened to me. It’s something I’ve gone through, something I’ve struggled with.”

What do you like about yourself? I ask her. She lets out one shaky chuckle. “I mean, I hate that question,” she says. “Because I honestly can’t say anything. At this point, there’s nothing.”

She breathes in and tries again.

“Someday,” she says. “Maybe someday there’ll be something.”