Experiencing eating disorders: ‘This is not the life I want to live’

Life changes after an eating disorder diagnosis. Four millennials talk recovery and moving on.

Illustration by Sydney Ling. "In my experience, the weight was this metaphor of 'I need to be smaller, I want to take up less space in the world," said Jessie Kahnweiler, who turned her eating disorder into a darkly comic web series.

Illustration by Sydney Ling. “In my experience, the weight was this metaphor of ‘I need to be smaller, I want to take up less space in the world,” said Jessie Kahnweiler, who turned her eating disorder into a darkly comic web series.

By Marissa Lorusso/Matters of the Mind

Jessie Kahnweiler turned her eating disorder into a darkly comic web series. Leo Rubiano went in and out of treatment for years before he decided he would no longer allow bulimia to control his life. Jamie Fisher-Hertz had to face down her eating disorder and her university’s administration all at once. And Hannah Schott rebelled against the anorexia that ruled her life for too long.

Millennials face a time when social stigma around mental health, including eating disorders, is widespread. Even with more public figures opening up about eating disorders, millennials with eating disorders also face new challenges, including changes in health insurance and in campus counseling centers.

Anorexia nervosa, bulimia nervosa, and binge eating disorder are the three major types of eating disorders, according to the American Psychological Association. The APA lists these three — along with the category “Other Specified Feeding or Eating Disorder” — in the fifth and most recent edition of the Diagnostic and Statistical Manual, which outlines the common criteria for diagnosing mental illnesses.

These are the personal stories of millennials with eating disorders. These millennials have chosen to share their personal stories with Matters of the Mind in order raise awareness about, and reduce stigma around, these disorders. “If any good can come from having an eating disorder,” said Hannah Schott, “it’s educating people more on the topic in order to push back against some of the cultural forces that cultivate these illnesses.”

Jessie Kahnweiler

Jessie Kahnweiler, 30, never saw herself as the kind of person who’d have an eating disorder.

“It didn’t make sense for me to have an eating disorder when I was also a feminist… When I was also neither underweight nor overweight,” she said.

Now in recovery from bulimia, Kahnweiler is changing stereotypes around eating disorders through a web series that depicts a fictionalized version of her experience.

Kahnweiler, a filmmaker and actress from California, says developed bulimia at 16.

“I wasn’t a ballerina or anything,” she explained. Rather, it was friends — and things she saw on television, she said — that encouraged the disordered eating habits.

She said her bulimia manifested in many different ways: binging and purging, mostly. But there would be days she would eat “nothing but breath mints.” When she moved to New York City for college, she turned to diet pills.

Kahnweiler struggled with the disorder, on and off, for about 10 years before starting to recover at the age of 27, she said. She said she didn’t engage always in these behaviors during those years. “It would go in remission,” she said, when things were going well. But it would always come back.

While her specific behaviors changed, Kahnweiler said the most consistent effect of her eating disorder was the “mental obsession” that accompanied it. From her first thought waking up to her last thought before falling asleep, she said, an overwhelming amount of her mental energy was dedicated to thinking about food and her body.

“In my experience, the weight was this metaphor of ‘I need to be smaller, I want to take up less space in the world,’” she said.

Kahnweiler said she feels like she wasted a lot of time full of self-hatred. But recovery has been “about letting go,” and has been “the opposite of an eating disorder.” Kahnweiler says that recovery came in part from talking with a therapist, and from “reprogramming [her] brain” to think differently about her body and her weight.

‘In my experience, the weight was this metaphor of ‘I need to be smaller, I want to take up less space in the world.’

Now, Kahnweiler has been pouring her energy into representing her eating disorder in a new light: a comedic one.

Kahnweiler is developing a web series called “The Skinny.” The series tells the (semi-autobiographical) story of “a feminist comedian in Los Angeles trying to live, love, and get over her bulimia,” according to its Kickstarter page.

Kahnweiler is no stranger to filmmaking that tackles tough topics. In 2013, she released a short film called “Meet My Rapist,” a semi-autobiographical piece that details the lasting impact that rape has had on her life.

While acknowledging the severity of eating disorders, Kahnweiler also wants to bring comedy into the conversation as well. And it seems to be working: “The Skinny” has started to garner media attention from websites like People, Bitch Magazine, New York Magazine, and ELLE, and Kahnweiler ran a fully-funded Kickstarter campaign for the series, too.

While Kahnweiler wants to challenge stereotypes about eating disorders, she was quick to point out that she is not telling the only story of being a millennial with an eating disorder. “I’m not trying to speak for an entire generation,” she said, “This is just my story.” But, she said, she hopes it will contribute to a culture “where people can tell their truth” about eating disorders “in whatever form it takes.”

She said that if “The Skinny” opens up the conversation around eating disorders so that other people feel comfortable talking about their experiences, that would be “the dream.” She doesn’t know if that will happen, but she’s okay with not having control over that. Instead, she said, “I’m really just making the most honest thing that I can make.”

Leo Rubiano

Leo Rubiano was often the only man in eating disorder treatment programs. He said that growing up, he was never really fazed by expectations around masculinity. However, being the only man in the female-dominated space of treatment could be a bit uncomfortable. He said that he often worried in group sessions if his presence might impact his fellow female patients’ “ability to share, to be open about themselves.”

Leo Rubiano was often the only man in eating disorder support groups. Courtesy of Leo Rubiano.

Leo Rubiano was often the only man in eating disorder support groups. Courtesy of Leo Rubiano.

Rubiano is also Hispanic. He said that while he was able to access help, it’s “pretty clear” to him that “minorities often get overlooked when it comes to mental health issues,” especially in terms of access to treatment.

Non-Hispanic Whites, Hispanics, African-Americans, and Asians all have similar rates of eating disorders, according to the National Eating Disorder Association. This contradicts the widespread idea that only white women are affected. Women and girls do, however, have rates of eating disorders about twice as high as men and boys, according to the National Institute of Mental Health.

Rubiano, 24, now works at an inbound marketing company in Cambridge. He said he struggled with issues of weight and body image since the age of 9. When he was 15, he started forcing himself to throw up.

This is relatively early, according to the literature; a 1997 study by Daniel J. Carlat published in the The American Journal of Psychiatry found the mean age of onset for bulimia symptoms in men to be about 19 years old.

Rubiano said this behavior only lasted a few months, then went away. During the spring semester of his freshman year at Vassar College, however, he became uncomfortable with having gained some weight. He started running to try to slim down. One afternoon the following summer, he felt uncomfortable — really uncomfortable — with how much he had eaten. So he started throwing up, he said. The cycle continued.

For a while at school, the bingeing and purging — and running — was a “cemented habit,” he said. Rubiano also began to go to a support group for eating disorders at his college, but it was only marginally helpful, he said. He also began to deal with depression.

At the beginning of the spring semester of his junior year, Rubiano began to talk to a counselor. After a few visits, the counselor suggested that Rubiano take some time off. He had even looked up eating disorder clinics that might be a good fit for Rubiano. The suggestion was “devastating,” Rubiano said, but he eventually agreed to go.

Rubiano left college, and went through several treatment programs for both his eating disorder and for depression. He said he has “lots of thoughts on treatment and what actually helps” when it comes to eating disorders. Rubiano sees eating disorders as far more complicated than just issues of self-esteem, although they are a common focus in many eating disorder programs.

“At the end of the day,” he said, “the problem with bulimia isn’t that I have low self-esteem. It’s that I’m bingeing and purging.” He points out that many people have low self-esteem without engaging in disordered eating behaviors, and that anyway, he does not believe “you need to be a 100 percent nirvana person to get rid of your eating disorder.”

While treatment mostly motivated Rubiano to work towards recovery, he said that he did sometimes struggle with being sure that he wanted to recover. This is a common situation common for those with eating disorders, according to Dr. Colleen C. Schreyer, an instructor in the department of Psychiatry and Behavioral Sciences at Johns Hopkins University who works in the JHU Eating Disorders Program. “Ambivalence about getting better is a core phenomenon of many eating disorders,” she said.

After returning to college, he said he was still engaging in his disordered eating behaviors. But eventually, Rubiano said, he “flipped a switch.” He decided he had to stop.

“Alright, I’m done.” He told himself one day. “This is not the life I want to live.” He said that it started with him allowing himself to feel full after eating and deciding not to purge; after that, he took it day by day. “And now,” he said, “I’m at the point where I don’t think about it. It’s just food.”

Jamie Fisher-Hertz

Jamie Fisher-Hertz feels it important to start the conversation about her eating disorder by saying that she “fully considers” that she doesn’t have an eating disorder anymore. “I identify with having had one,” she said, “but I’m proud to say that I am 100 percent healthy in my life right now.”

Of course, it took a little work to get to there. And before she could, Fisher-Hertz had to deal with the difficulty of managing an eating disorder while attending college — a challenge that almost derailed her attempts to recover.

Jamie Fisher-Hertz, 22, said her experience with an eating disorder was about much more than just thinness. Courtesy of Jamie Fisher-Hertz

Jamie Fisher-Hertz, 22, said her experience with an eating disorder was about more than thinness. Courtesy of Jamie Fisher-Hertz

Fisher-Hertz, 22, now lives and works in Chicago, after graduating from George Washington University. She was 15 years old when she attended a summer girls’ leadership workshop where peers taught her how to engage in disordered eating behaviors, including making herself throw up. She said she came away from the experience with a “developing eating disorder,” while noting the “interesting contrast” in having this occur at an event meant to empower her as a young female leader.

After the workshop, Fisher-Hertz began restricting her eating and making herself throw up. This prompted her her mother to take her to a therapist. She said she continued to struggle in high school, but the eating disorder was “on the back burner a little bit.”

However, the behaviors became more serious during a stressful semester in college at George Washington University. She was struggling with eating and with throwing up, but didn’t want to tell her parents at the time. A friend suggested she go to a therapist, and since her university offered five free visits at the counseling center, Fisher-Hertz went.

While the visits started off well — the counselor even specialized in eating disorders — Fisher-Hetz recalled one specific session that ended with her counselor saying Fisher-Hertz had to be taken to the hospital, she said.

At first, Fisher-Hertz refused to go, as she thought it was unnecessary. “I was at a normal body weight. It’s not like I was passing out or anything!” she said.

Fisher-Hertz said that the counselor told her that if she refused to go, they would have a police officer escort her to the hospital. She could also face other consequences, she said she was told. She could be shut out of student housing, and her professors could be told she was not allowed to be in class, she said. “I don’t know how much they really would have done,” Fisher-Hertz said, “But it scared me.” She agreed to go.

By this point, the counseling center had already called for the university ambulance services, which is staffed by students, she said. Some of these students were Fisher-Hertz’s classmates, which made her very uncomfortable, she said.

Once at the hospital, the emergency room staff took her vitals, decided she was healthy, and (ironically) suggested she go to counseling to help with the disordered eating behaviors, she explained.

Fisher-Hertz said the incident with the hospital was “the worst thing that could have happened with [her] eating disorder.” She returned to her university, but said she was “very afraid” to go back to the school counseling services. She ended up contacting her parents, who helped her find off-campus mental health care.

Fisher-Hertz said that due to her initial reluctance to go to the hospital, she also was required to meet with a member of the board of the university counseling services, to make a case for why she should be allowed to continue attending the university.

A George Washington University Mental Health Services spokesman said due to privacy laws, the school does not comment on individual cases. “The Colonial Health Center follows established medical and university guidelines in providing treatment to patients,” said Kurtis Hiatt, GWU associate director of media relations in an email.

The email added that the Colonial Health Center is committed to the highest quality experience “and we welcome feedback so we may continue to improve our services.”

Fisher-Hertz said her experience with an eating disorder — and those of others — was about much more than just thinness. “In society we talk about women and body image and objectification,” she said, but we don’t always talk about the “sense of control and power” that people with eating disorders often feel when engaging in these behaviors.

Now in recovery, however, she said she now gains that sense of power from choosing to “focus [her] energy on being healthy,” and on seeing her body as “something I want to be strong, that I want to be working well for me.”

Hannah Schott

After years of dealing with anorexia, Hannah Schott, 21, said she faced “a situation where I would have died, or I had to go to treatment.”

This is not uncommon. Anorexia nervosa is the most deadly mental illness, according to a 2011 study by Jon Arcelus in the Archives of General Psychiatry.

Hannah Schott, 21, restricted her calories until she "felt like a zombie." She was later diagnosed with osteoporosis.

Hannah Schott, 21, restricted her calories until she “felt like a zombie.” She was later diagnosed with osteoporosis.

After years of facing this risk, Schott said, she is finally in recovery. She is now living Maryland and finishing up her undergraduate degree at the University of Maryland, Baltimore County.

Schott said she experienced feelings of shame about her body since childhood, due in part to pressure from family and peers. Schott said that growing up,  she felt that she constantly received messages that “the most important thing about you was the size of your body… The most important thing was being thin.”

She said she internalized this idea; and, when she struggled to make friends at school, she “started relying on food as a friend.” But as she gained weight, she encountered more bullying. She felt ostracized. So she tried to lose weight.

She started restricting her caloric intake, which led to bingeing. And purging. Which, in turn, led to her anorexia nervosa diagnosis at age 14.

Throughout that year, Schott kept losing weight. This led her parents enter her into an inpatient program, where doctors helped her gain weight.

‘Girls would tell me that they thought I had the perfect body … And here I was, developing osteoporosis.’

Having gained weight made Schott feel “terrified” to return to school, she said. So after leaving the program, she started restricting again. From this point on, she maintained a kind of “functional anorexia,” she said, getting good grades and even getting into college. She felt “like a zombie,” she said, but liked the way people treated her.

Hannah preferred not to mention specifically how low her weight dropped due to her anorexia, but acknowledged that it led to a variety of health problems, including problems with her heart and bones.

“Girls would tell me that they thought I had the perfect body,” she said about classmates. “And here I was, developing osteoporosis at an … age when no one should have osteoporosis.”

After graduating, she started attending college. She said that without the “safety blanket” of home, her behaviors got worse:  She fainted in class and was sent to the emergency room. After this, she left her university to enter a residential treatment program.

After leaving the program, she started at a new university. Again, her behaviors led her back into treatment. This time, it was at the Johns Hopkins Eating Disorders Program.

Schreyer notes that weight restoration — a key component of Schott’s program — is “one of the best predictors of a successful outcome” for patients with anorexia. However, these treatments can often take a long time (Schott stayed in inpatient for three months) which can pose problems for patients with certain kinds of insurance.

Schreyer explains that HMOs have limited access to care by shortening the length of stay that they will reimburse for inpatient treatments. However, there has been increasing advocacy among millennials in recent years, according to Maggie Bertram, associate director of training and education at Active Minds, a nonprofit that works with college students to open up conversations around mental health. Bertram hopes will help increase awareness among legislators and insurance companies “about how complex and persistent these disorders are, and how the treatment model needs to be better reflected in [insurance] coverage.”

After three months in inpatient care, Schott was able to move to an outpatient program. She credits her eventual recovery to the strictness of this program, which did not allow her to fall back into behaviors associated with her anorexia.

She also said that in recovery, she was better able to understand the “sociological and cultural forces” that lead to eating disorders. This has led her to see her recovery as a means of “rebelling against the tremendous power of the diet industry.”

She said another key part of her recovery has been being able to focus her energy on things that feel more important, including being able to travel.

“You can’t really successfully explore a place if you’re constantly exhausted from malnutrition,” she said. “You can’t appreciate flavors that they have to offer, because you spend your entire time worrying about what the next meal is going to be.”

Last June, feeling healthier, she backpacked in New Zealand. She said that being in recovery meant she was able to appreciate the experience more fully. Now that she’s graduating from college, she is planning to move there.

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