Living with an eating disorder as America unravels means navigating dual identity crises

An estimated 30 million Americans will experience an eating disorder—defined by the National Eating Disorders Association (NEDA) as a “serious but treatable mental and physical illness”—in their lifetime. And while eating disorders are often associated with adolescent white women, this illness can affect people of any race, background, age, weight, gender, or sexuality. Two 2014 studies found that 25 percent of people living with anorexia are men and the National Association of Anorexia Nervosa and Associated Disorders reports that 13 percent of women over the age of 50 engage in disordered eating behaviors. Samantha Zylstra, a therapist with a private practice who treats sufferers, confirmed: Eating disorders “hit everyone, it doesn’t discriminate.” 

But just as the pandemic’s impact hasn’t been equally distributed—killing Black and Latinx people at nearly double the rate it kills white people (and infecting them at three times the rate) while wreaking havoc on poor communities in cities, especially—members of other marginalized groups, like the LGBTQ community and women of color, face unique risk factors for developing eating disorders and barriers to entering recovery. Similarly, Native American women are just as likely as white women to be diagnosed with an eating disorder, according to a 2011 study. And, as of June 25, the CDC reported that Native Americans with Covid are being hospitalized at five times the rate of white people. (While men aren’t the specific focus of this story, it is worth noting that they die more frequently from Covid-19 than women. And while they represent about 25 percent of anorexia sufferers, according to a 2014 study, they are more likely to die from anorexia partly due to late-stage diagnoses.) 

According to NEDA, because women of color can be exposed to “multiple traumas,” both personal and societal, during the course of their lives—for example, abuse, racism, and poverty—they can also be more vulnerable to developing disordered eating patterns in order to cope. (While researching this article, I spoke to dozens of people of various races and genders about their struggles with disordered eating during the pandemic. Some opted not to share a photo and many decided against talking on the record. They were not quoted.)

In a 2019 editorial, the Mayo Clinic’s Dr. Leslie Sim discussed the largest population-based study of eating disorders to date, which found that, depending on the disorder, 20-26 percent of those affected were people of color—a near “proportionate representation for the U.S. society as a whole,” wrote Sim. However, while eating disorders afflict people of all races at similar rates, people of color—especially Black people—receive far less help to recover from them. That may be in part because men and people of color are “significantly less likely to seek help” than women and caucasians, Sim wrote. There’s a “great deal of stigma associated with eating disorders in general,” she said. When combined with the stereotype that only white women are affected by them, the “stigma for those not represented by this stereotype is magnified,” Sim concluded. 

 An earlier study from 2003 identified similar findings: Even people of color who have “self-acknowledged eating and weight concerns were significantly less likely” to be asked by a doctor about eating disorder symptoms than white people were. 

Sim is unaware of any research currently being conducted on whether people of color with disordered eating are struggling more intensely than other populations during this time. In late May, Zylstra told me her clients of color were not experiencing their eating disorder symptoms differently than anyone else. Instead, she worried about the financial impact of the pandemic on extremely low-income renters, who are also disproportionately Black, Latinx, and Native American, and were already “unable to seek or afford treatment.” Similarly, Sim added, “in the context of this pandemic, it is more difficult to access” eating disorder care in general. For those who don’t already have established support, the “current limited access represents another barrier to seeking help.” 

Considering the reality that eating disorders can be deadly—after opioid addiction, they have the second highest mortality rate of all mental health-related conditions and roughly one in five anorexics will die from the disease—diminished access to professional help for people of color and men means “…the symptoms can escalate in severity,” said Sim, “particularly in the context of the acute stressors that this time of social distancing and isolation introduce.” 

For some, recently loosened restrictions have meant a full (albeit risky) return to pre-Covid activities. But for the people I spoke with over the past several months, they’ve required making yet another big mental shift. Kelsey Smith, who is 28, was hopeful when we first spoke in early May. Though her restrictive tendencies had resurfaced after five years in anorexia recovery, she considered the shutdown just a “pause to normality” in her hometown of Austin, Texas, and said she hoped she’d bounce back from her relapse when the restrictions were lifted. 

Now, the city is a coronavirus hotspot: After having lifted many restrictions in advance of  Memorial Day, Texas rolled back its plans to fully re-open by the fourth of July due to rising infection levels. During that brief re-opening, Smith, a bisexual, white woman, returned to her gym class, only to feel alien and uncomfortable. She told me in June, “It didn’t feel right. I really thought it would get better [when the city re-opened]… now I’m asking myself, ‘when will be the right time?’”

At the height of her eating disorder, Smith “thought about food all day”; a dietician once called her a “liability” because she was too thin. But over the last five years in recovery, Smith said, she didn’t think about food much at all. By June that had changed. Feeling the stress of Austin’s shutdown, missing workouts at the gym and her passion project, acting, and without her work as a school counselor (she’s been working from home since March, and is now on summer break), Smith found herself once again skipping meals and almost subconsciously checking the size of her waist. 

Smith said the current limbo is “the most emotionally unstable place to be. There are days where I can’t shut off my spiraling.”

If sustained recovery is reliant on the strength of routine, every new upheaval in the world presents a tricky realignment of your guardrails—and sometimes, total demolition. Several doctors, including Zylstra, told me they’ve been hearing from patients whose symptoms had abated prior to the lockdown. “The way we treat mental illness is to create structure and consistency—we call it self-care,” said Zylstra. “Covid took that away.” 

The first time we spoke in early May, Heidi, who requested that her last name be withheld because of professional concerns, told me that food has always been her distraction from “past trauma and depressive thoughts.” Now 24 years old, Heidi has been hospitalized three times for her eating disorder. So it almost seemed inevitable: When the country plunged into the coronavirus crisis in March, Heidi—who said she had been “ambivalent about recovery,” but improving since being hospitalized for her eating disorder in February of 2019—turned back to “the only thing I knew that could support and distract me: bulimia.” 

Heidi cycles between binge, purge, and restrictive behaviors. In June, she gave me the list of foods she feels comfortable eating without purging: water with lemon juice, coffee with half a cup of soy milk and stevia, and “some vegetables.” However, she said she usually eats vegetables with other food, “prompting purging.”

For the last year, Heidi, who is bisexual and Asian, lived with her parents in southwest Ohio, where a typical week included bingeing and purging four to five times, purging without bingeing once or twice, and spending an additional $200 to $300 on food—a routine she described as “significantly better than how I’d been before.” In February, she moved in with her fiancé and began to thrive. They sketched out daily meal plans for lunch, dinner, and a large snack. She also kept pantry staples on hand: bread, protein powder and bars, peanut butter, pretzels, chips, as well as canned and dried goods. 

“I didn’t have any bingeing or purging behaviors at all for the first five weeks,” she said. Then, toward the end of March, Heidi’s job transitioned its employees to working from home in accordance with Ohio’s stay-at-home orders. That week, she purged. 

“Covid and the state shutdown took away my access to comforts and support I need,” she said. “When things get too difficult for me out there in the real world, I retreat to my shelter made of french fries and vomit.” Though her household food budget is $500 a month, Heidi said she spent over $3,500 on food between mid-March and early May, which is “almost two months’ worth of income.” Eating—and purging—kills time and “kills the cravings,” said Heidi, detailing her routine: one hour to cook, another hour to eat, “and then, because I can, I purge.” 

Even after Ohio had re-opened salons, retail stores, indoor dining, and bars, Heidi’s eating remained an issue: “I am constantly thinking about food,” she said. And she’s bingeing harder. Though she’s still following the same meal structure, Heidi has added in more frequent and larger snacks, as well as a high-calorie breakfast, which she also purges. “Basically, I spend every minute of the day eating or wishing I could eat,” she said. 

Reverting to previous coping strategies is normal in times of great stress, said NEDA’s CEO Claire Mysko. Zylstra agreed: her clients have similarly reported that their “eating disorder gives them a sense of order in a very chaotic experience.” The numbers prove it. In April, compared to the same time last year, NEDA saw an 83 percent increase in chat volume from people seeking support. Call volume, said Mysko, was even higher in March, when most state shutdowns went into effect. Mysko continued: “This change in routine can heighten anxiety and be difficult to navigate without the same access to in-person resources and support.”

Finding, and seeking, support from loved ones hasn’t been easy for Braca, Tanya, or Heidi. To varying degrees, all three women have struggled to discuss their disorders with friends, family, and partners. Now, as the persistent suffering and grief of racism break American hearts and bodies open and apart, they’re even harder pressed to find a person who isn’t too engulfed in their own anxious—or angry, or mournful—reality to spare the emotional resources. 

Heidi, noting that she and her fiancé share a small apartment, said they don’t talk about her disorder, but she believes he knows. “Sometimes, when I come out of the bathroom, he’ll come find me and just hug me for a bit, but that is the extent of his acknowledgment of the issue,” she told me in May. Tanya is also engaged and said her fiancé knows about her history, but it continues to be a sore subject. Braca, too, admitted she doesn’t talk to the people in her life about her illness. “I don’t really want to stress them out. There are so many other things to worry about, I feel selfish for bringing it up.” Smith is the exception; she credits her fiancé with helping her enter recovery five years ago and avoid total relapse today. 

While Braca and Tanya have continued to work with their therapists through the months of upheaval, Heidi hasn’t been able to see hers since mid-February. As of mid-July, her therapist was still out on a leave of absence and Heidi said the practice refused to connect her with another. She also tried reaching out to other practices, but said she wasn’t able to get an appointment.

Ella Hofer, a 26-year-old factory worker from Fort Wayne, Indiana, had a different problem. She neither felt able to connect—nor had any interest in connecting—with her therapist via video sessions. Hofer told me in May, and again in June, that “money has become very tight with everything going on. I’d much rather talk to someone in person than online if I’m going to be paying so much to do so.”

Since she was two years of age, Hofer has lived with the recently-named avoidant restrictive food intake disorder (ARFID), defined as extreme avoidance or phobia of certain types of food that the body often forcibly rejects. Hofer said she can eat, and keep down, a handful of foods: certain candies—Reese’s Peanut Butter Cups, Twizzlers, and Skittles are her favorites—as well as ice cream, yogurt, and chips. Only recently has Hofer been able to eat fruit in smoothie form. 

When I asked why candy was “safe,” she told me: “I have no idea.” Hofer has been eating like this for as long as she can remember. And it has never been easy. ARFID, she told me, “impacts absolutely everything in everyday life.” At work, Hofer sits in the break room with a meal replacement shake while her co-workers eat their lunches. Dates at restaurants are especially uncomfortable. “I just kind of awkwardly watch and wait for them to be done,” she said.

When we first spoke in May, Hofer told me she had been actively working to overcome her eating disorder before the Covid crisis. Then the stress of the shutdown—and picked-over grocery store shelves—sent her back to eating predominantly junk food. In May, she was disheartened. But while she said the pandemic “made it extremely difficult, mentally and emotionally, to handle trying to make such a huge change to my diet and my life,” Hofer now represents a sliver of the population with disordered eating for whom the recent re-openings have offered a fragile new hope. 

When we spoke again by phone in mid-June, Hofer, who has recently come out as a transgender woman and describes herself as a “huge gamer,” said she was feeling exponentially better. When Fort Wayne lifted its restrictions, Hofer and her friends were able to play in person again, which helped ease the isolation she felt from sheltering in place. During the first wave of the pandemic, Hofer was coming to terms with her transition; the time alone also provided the space to work through her fears and begin accepting herself. “I was in a really bad place,” she told me. “But, since then, I’ve become such a happier person.” The newfound freedoms also helped Hofer get a better handle on her diet. In June, she told me she was “at the very least, less stressed out” over food now. 

Providers have witnessed the full extent of the need. In May, Zylstra, the private-practice therapist, who works just outside of Chicago (and has a virtual practice based in San Francisco), told me the pandemic had her working more than ever. She typically sees 100 patients each week; as of early May she’d seen one to 14 patients every day over video. She described the work as triage. “I’m just making myself available to keep people out of the hospital.” 

Eating disorder clinics and nonprofits have rolled out new, virtual services to support patients, too. As Mysko explained, “a key factor to eating disorder recovery is community, and the ability to make connections and find common identities.” This is why NEDA’s phone and text helpline are now completely virtual, with representatives available late into the evening Monday through Friday. To combat feelings of isolation, NEDA posts daily 10-20 minute video check-ins from community leaders providing resources and activities and offers nearly two dozen virtual support groups throughout the week, ranging in cost from free to $50. The organization has also launched an online forum. 

The Eating Recovery Center also offers virtual service. Though its locations across the U.S. are still open and following CDC guidelines for patients who require in-person care, it now offers “intensive, cohesive treatment over the internet,” said the center’s Dr. Harry Brandt. This includes intensive out-patient services and partial hospitalization for qualifying patients. More than 200 ERC clinicians, who’ve been trained in tele-behavioral health delivery, make up the virtual care team.

But virtual support means nothing if people don’t seek treatment in the first place. Brandt said he anticipates a “surge of eating disorder morbidity and mortality” as a result of the coronavirus and fears people will use the pandemic as an excuse to avoid getting the treatment they need. “Seeking help during a time like this, for a person with an eating disorder, is really important,” he said. “Nobody’s got to go it alone.”