As a teenage girl coming of age in the 1980s, Sara* was uncomfortable with her body. She didn’t like her dark hair, so she tried bleaching it blonde with lemon juice. She was a good athlete, but still heavier than most of her classmates. And there was the matter of her breasts, which began growing—painfully and noticeably—before everyone else’s.
But unlike the other girls in her rural Oregon hometown, Sara’s puberty affirmed something she had always known: She was different.
Born in Vietnam, Sara was adopted from an orphanage and raised by white parents in a small, predominantly white town. As far as she knows, she was the only Vietnamese person in the area. Her parents were loving and supportive; they assured her she was no different from anyone around her.
“I was raised white, but in a physical body that I felt nobody saw,” says Sara, now 41.
One day in middle school, Sara turned on the television to an afterschool special about a girl with bulimia, an eating disorder in which people binge, consume excessive amounts of food, and purge it afterwards through methods like self-induced vomiting. The girl looked like all of Sara’s most popular classmates.
“It seemed like an easy idea,” she recalls. “That was obviously not the intent of the program, but I thought, ‘Oh, so this is what people do.’ Suddenly I had an option for fitting in.”
Sara began bingeing and purging in sixth grade. She continued through high school, college, and into adulthood. Throwing up brought her physical comfort and relief.
Sara spent much of her life wondering: “Am I physically real? Where’s the proof? If I can’t feel anything, am I even in here?”
When we think of eating disorders, we tend to picture celebrities like Lady Gaga, Fiona Apple, and Lindsay Lohan, all of whom struggled publicly with bulimia and anorexia. That image of eating disorders as a rich, white woman’s problem persists, even as diagnoses among women of color and other marginalized communities are on the rise. Like many parts of the medical industry, the treatment of eating disorders in America has been historically weighed towards white people’s needs. It’s only in the last decade, since these cultural biases have been exposed, that this has begun to change.
According to the National Eating Disorders Association (NEDA), 20 million women and 10 million men suffer from a clinical eating disorder at some time in their lives. That’s roughly one in 10 people in the United States. These psychological disorders—which include but aren’t limited to anorexia nervosa, bulimia nervosa, and binge eating disorder—carry extreme physical consequences. Most manifest during a person’s teenage years or in young adulthood. And since it’s projected that more than half of the country’s 18- to 33-year-olds will be non-white by 2028, that means more people will have eating disorders, too.
As researchers have begun to look at these populations, we now know that the prevalence of eating disorders among African-Americans, Asians, Latinos, and white people in the United States is relatively equal. But we also know that health care providers struggle to adjust to these shifting demographics and that many people still face significant barriers to recovery—one of which is the simple recognition of how their illness is experienced.
More people die from anorexia nervosa than any other mental illness. Which means our collective blind spot about eating disorders in marginalized communities is a matter of life and death.
Here are some of the things Marcella Raimondo, a clinical psychologist and educator based in Oakland, hears from her eating disorder patients: I didn’t like my eyes. I didn’t like my hair texture. I didn’t like the size of my butt. I didn’t like my nose. My skin color is too dark.
“It may have nothing to do with weight,” she says.
Raimondo’s spent most of the last decade treating people the medical establishment has overlooked. She knows from personal experience how often oppression and eating disorders can go hand in hand. When someone “routinely comes in and says they are unhappy in their daily existence, it means they are unhappy in their body,” she says. “It means that you need to screen for an eating disorder.”
It’s easy to understand how the tumult of puberty may trigger the onset of an eating disorder: The painful awareness of our bodies going through tremendous physical and emotional changes is laid out against the backdrop of our culture’s unreasonable standards of beauty. But for people of color, queer people, and transgender people, eating disorders can be traced to other structural and cultural factors that have been in play—quietly, insidiously, even unconsciously—for most of their lives.
In the face of daily prejudice, young people may retreat to a place where they feel they have little power. The daily limits of poverty, which affect access to essential things like a home, transportation, and safety, may lead them to feel that their body is the only thing they have. Many of these variables go ignored by health care providers.
As Pilar, a biracial woman, explained to me, feeling alienated from the diets and meal plans in health magazines further compounded the anxiety that kept her bingeing and purging through college. She didn’t look like anyone in those magazines, and she didn’t know where to begin shopping for the ingredients the articles said would improve her body and health.
“It wasn’t how I or anyone I know eats,” she says. “It wasn’t real life. It felt so stupid and pointless to mimic those diets.” Pilar binged and purged instead.
One might think the medical industry would do better than the pages of fashion magazines, but that has hardly been the case.
Even the NEDA, the country’s largest non-profit tackling these issues, admits on its website that “due to our historically biased view that eating disorders only affect white women, relatively little research has been conducted utilizing participants from racial and ethnic minority groups.”
One of the most widely available books on the subject, The Eating Disorder Sourcebook: A Comprehensive Guide to the Causes, Treatments, and Prevention of Eating Disorders by Carolyn Costin, first published in 1996 and now in its third edition, dispatches with issues of ethnicity and gender in just eight of its 300 pages.
“Some acknowledge that eating disorders are found in all ethnicities but continue to believe that such cases are rare,” Costin writes. “Many think that African American women are ‘protected’ from getting anorexia and bulimia because their body ideal is heavier and more voluptuous.”
This line of thinking assumes women of color are a monolith, erasing them as individuals with multifaceted lives affected by family dynamics, economics, and popular culture. It’s also a position that quickly crumbles in the face of lived experience: Every community has its own idealized standards around thinness and beauty.
The truth is no one is immune.
Mei Yook, 27, grew up an outgoing and spirited child in a Chinese-American family in Northern California. Gatherings always involved large platters of shu mai and roasted duck, as well as cookies and American fried chicken. When she was a young girl, she recalled her grandmother lovingly touching her round cheeks and stomach.
“In my family, you were good and healthy because you were chubby,” she says.
But everything changed when Mei Yook hit adolescence.
“When I moved into middle school, suddenly I was too fat,” she said. “There was a lot of [my grandmother] pitting me against my other female cousins, pointing out our differences. I wasn’t obese, but I was definitely not a skinny girl. And I didn’t conform to what Chinese women were ‘supposed’ to be like—small and submissive—both in size and personality. I was an American girl.”
But as an “American girl,” Mei Yook also struggled to find her place. Just before middle school, her family moved to a new, mostly white community in Washington State.
“All the shit hit the fan then,” she recalls. “I became so self-aware—of my body, peer groups, fitting in.” She bleached her black hair to blonde and developed elaborate fantasies about elongating her torso.
Mei Yook began bingeing and purging in high school. At family events, she would eat plate after plate of dumplings and rice, under the approving eye of elders. Afterwards, alone in secrecy, she would throw it all up.
“People would tell me, ‘You finally stretched out!,’” she remembered. “I was still under five feet tall.”
People of color, queer people, and trans people often suffer from complex issues of shame; this isn’t about a singular desire to be thin. They describe not only insecurity about their weight, but a larger struggle for recognition. They feel unmoored and alone in a culture where it seems there are few people who look like them, who truly understand their experiences.
Kal, for instance, grew up in Illinois, a biracial child adopted into a white family. He has never met his birth parents, but knows that his mother’s ancestors were Polish immigrants and that his father is African-American. “I’m a person of color,” he says, “but I don’t know where my color comes from.”
Questions have been constant throughout Kal’s life. He was born female and began developing breasts, menstruating, and “developing a body that I wasn’t comfortable with” during puberty. Now, at 23, he identifies as a trans man.
In adolescence, Kal began a series of restrictive diets. At 15, he dropped from 220 to 155 pounds. His severe weight loss did not lead him to be severely underweight, though, which is required for a diagnosis of anorexia nervosa.
“There’s a stereotype of anorexia that you have to be thin,” Kal says. “We don’t realize that there are anorexic people out there who are bigger. No matter how long we’ve been suffering, from that perspective, we don’t exist.”
Diagnostic categories are hugely consequential. They determine whether treatment for people like Kal, who is now in therapy for his eating disorder as well as body dysmorphia, will be covered by health insurance. “Other Specified Feeding or Eating Disorder,” which includes five disorders, was created in 2013. A category for people who don’t meet all the strict criteria for other eating disorders, it replaced a more vague classification called “Eating Disorder Not Otherwise Specified” that made it difficult for people diagnosed, even those with insurance, to receive care.
The passage of the Affordable Care Act in 2010, as well as the Mental Health Parity and Addiction Equity Act in 2008, guaranteed coverage for both mental health and pre-existing conditions. Since then, there’s been a wave of previously disenfranchised people like Kal seeking help for their eating disorders. Now, with the threat of a repeal of the ACA, people are at even greater risk, and Marcella Raimondo, the psychologist is concerned. The unknown ramifications leave the populations she serves “feeling vulnerable, scared, and with the threat of reliving traumas.”
“And this is just the mental health aspect of it,” she says. “Now factor in the possible reality of having no health coverage.”
Most questionnaires clinicians use to evaluate for an eating disorder focus primarily on weight. Raimondo, who also holds clinical trainings in a number of institutional settings, urges health care practitioners to ask their patients concrete, intimate questions. “For people of color and marginalized folks, it needs to be: Tell me more about your daily body experience,” she says.
That means questions like: How are you taking care of yourself? Are you skipping breakfast? Are you skipping lunch? Are you skipping dinner? How small are your meals? Are you bingeing? Are you purging? How much exercise are you doing? What do you do when you stand in front of a mirror? Do you avoid mirrors?
These questions don’t come out of nowhere. Raimondo, now 46, grew up in a Peruvian-Italian household that overflowed with the traditional foods of both countries. While Peruvian food was a part of the fabric of her family’s daily life, another crucial aspect of her mother’s culture—the Spanish language she grew up speaking—was not. Hoping to protect their daughter from some of the confusion and pain her mother experienced while assimilating into American culture, Raimondo’s parents allowed only English to be spoken in the house.
Raimondo thrived until puberty, when she experienced sudden weight gain. At 16, she began dieting, severely restricting her food intake and exercising obsessively, practices that continued into adulthood. Even as it ravaged her mind and body, the extreme rigidity of Raimondo’s anorexia had a consistency that brought her comfort. Her weight plummeted. So did her heart rate.
“I’m surprised that I didn’t die,” she admits.
Even in the deepest throes of anorexia, Raimondo says she always felt an inexplicable pull to do some work related to the illness that had taken over her life. She began therapy and entered recovery. She pursued a doctorate so she could work with others who struggle with eating disorders.
“Race is a part of my eating disorder,” Raimondo says. “But I wasn’t able to relate [it] to me being a person of color until later in life.”
In 1994, the critic Becky W. Thomson published her groundbreaking book, A Hunger So Wide and So Deep, built on in-depth interviews with heterosexual and queer African-American, Latina, and white women about their experiences with eating problems.
“Portraying them as individual ‘disorders,’” she wrote, “rather than as responses to physical and psychological distress is part of a historical tendency to mislabel the results of social injustices as individual pathologies.”
Life with an eating disorder holds as much determination as it does despair—surviving it requires a grim ingenuity for survival. It’s a strategy that oppressed people having been using around the world for centuries.
Like Raimondo, Mei Yook’s racial understanding of her eating disorder came later life, well into her recovery. Towards the end of high school, she sought counseling for her bulimia. Her therapist was a white woman who helped her develop ways to manage her disorder. During their sessions, race was never discussed. It was only after attending a workshop on institutional racism that was part of the training for her job at a non-profit that Mei Yook suddenly found herself making the connection.
“I came home…and I just cried,” she remembers. “I finally had the language to conceptualize all of this trauma that I knew existed within me, but never had the tools to vocalize.”
The health care business is built on the value of expertise. Medical and mental health professionals are viewed as gifted people with the skills to cure people, but they don’t always have the knowledge to help the diverse communities they serve.
“People come to me and say, ‘Please tell us how we can work better. We’re all white, and our folks coming in are not white,’” Raimondo says. “And my first question is: ‘Why are you all white?’”
Just as it took years for Mei Yook and Raimondo to see how race contributed to their anorexia and bulimia, it’s taken a long time for health and medical professionals to recognize the cultural bias in their treatment methods.
Traditionally, eating disorder studies were conducted in hospitals, colleges, and private high schools—institutions where women not in college, women not in treatment, women of color, older women, and poor women are underrepresented.
Over the last two decades, researchers have begun correcting the record. Since then, we have learned that Latina and Asian girls experience higher rates of body dissatisfaction than their white peers. We now know that black women are more likely than white women to diet by fasting and using laxatives and diuretics, and that Native American women, even though they are less likely to seek mental health care, are just as likely as white women to be diagnosed with an eating disorder.
Research has also revealed that race affects not only patients, but health care providers: A 2005 study found that when presented with three separate patients—one white, one African-American, and one Latina—with the exact same behaviors, clinicians were more likely to see the actions as symptomatic of an eating disorder when the patient was white.
It may be slowly getting easier to recognize eating disorders in women of color, but by the time many are diagnosed, their disorders are already deeply ingrained.
And then there is the issue of who patients will be greeted by when they step through the doors of a clinic.
Eating disorders are already isolating illnesses shrouded in shame, and it’s unlikely that a biracial trans man, a Somali girl in a hijab, or a queer Latina woman will find a doctor or therapist who looks like them or is familiar with their culture. It makes it that much harder to establish a trusting, productive relationship.
Eating disorders begin as a way for people to control parts of their life. Eventually, the rest of their life falls under its control. For people of color in recovery, understanding the larger, societal forces that have impacted them can be crucial to reclaiming their agency.
Sara, the transracial adoptee who grew up in Oregon, has a daughter of her own now. The birth of her child was transformative—“the only physical, biological connection I’ve ever known.” It helped her see how race factored into her eating disorder, something she never considered until she was almost 40 years old.
“[My daughter] affirmed that I exist because there is now this life that looks like me and shares the same blood,” Sara says. “Before it wasn’t in my consciousness that my low self-esteem had this whole other layer.”
At the time her eating disorder developed, nobody—including Sara herself—realized that what she longed for more than anything was an acknowledgement of her distinctness, a key to an identity that haunted and eluded her.
The realization changed Sara’s life. Bu it could easily have never come.
“Nobody saw me for who I was—who I am,” she says. “So I had to see me.”
*Some names have been changed to protect privacy.
This feature was originally published on January 18, 2017.
Angela Garbes is a Seattle-based writer specializing in food, bodies, and women’s health. She was a staff writer at newsweekly The Stranger and her book Made of Ourselves, reported essays exploring the scientific mysteries and cultural myths of pregnancy, will be published in 2018.