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It took decades before Anissa Gray was willing to call her eating disorder an eating disorder. 

She started doing what she thought of as “dieting” when she first went to college: binging, purging, using laxatives and compulsively exercising to manage her weight. Gray, a journalist and the author of the 2020 novel “The Care and Feeding of Ravenously Hungry Girl,” said that during her childhood in a predominantly White, working class neighborhood in West Michigan, thinking about dieting was normal. Thinking that dieting might be another name for eating disorders was not. Now, at 54, she understands the formation of her eating disorder came long before the behaviors that defined it. 

“My family was Black, but my friends were White,” Gray told The 19th. “I have always been in a lot of White spaces, and I absorbed a lot of the body consciousness that came from those spaces. I was always more curvaceous than my White friends and it was one other area of difference on top of race. It was another thing that reminded me of difference when I just wanted to fit in, and I was in an environment where the overall message was, ‘You should be thinner and you should want to be thinner.’”

She eventually sought out treatment in her 40s after being confronted by her wife, who heard her purging in the bathroom one day. Gray, who was already hesitant to attend treatment, immediately noticed that she was not only the only Black woman patient, but the oldest woman in the group therapy setting. As someone who had long been “the only” in a room, she wasn’t surprised to find herself in that situation once again. But she wondered how she might feel if that weren’t the case. 

“If you have someone who is not used to being in a lot of White spaces all the time, how comfortable can they feel in that room? I don’t know,” Gray said. “One of the most important things, especially in a group setting in treatment, is the ability to relax and be honest and speak your truth — and you can only do that if you feel comfortable and feel a connection with the others you are in that room with.”

Experts in the field of eating disorder treatment are quick to talk about the “SWAG” stereotype as it pertains to diagnosis and treatment: skinny, White, affluent girl. These long-held assumptions about who experiences disordered eating have kept treatment rooms, like Gray experienced, overwhelmingly White. Now, Black women in the field are working to disrupt a vicious cycle that prevents people of color from getting diagnoses and treatment. 

“We have to think more broadly about who develops eating disorders,” Gray said. “In everyone’s minds, the picture is of an affluent White girl. When a doctor has that perspective — they just might not see it in a young Black girl who comes before them because she doesn’t fit the picture. We have to make it clear that eating disorders aren’t a young White girl problem.”

Looking back on her own life and experiences, Gray thinks about how these stereotypes have impacted her and her health, recognizing the urgency needed for change. 

“It’s a matter of life and death,” Gray said. “This is a disorder that can and has killed people. That’s what’s at stake if we fail to broaden the picture in everyone’s minds.”

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Paula Edwards-Gayfield, a clinical adviser for the National Eating Disorders Association, said that when it comes to Black people especially, “there is still this stigma about who gets an eating disorder and what it looks like.” The SWAG stereotype, she said, is so powerful that not only has it restricted the popular idea of who experiences disordered eating, but of what eating disorders even are. 

“People think young adult, middle- and upper-middle class White female with anorexia,” Edwards-Gayfield said. “But if you look at anorexia versus bulimia versus other eating disorders, anorexia is actually the smallest subset of any diagnosis. But in our minds we always go to anorexia because of our image of who that is. That’s the picture of an eating disorder — so all these other marginalized groups get left out. It’s historical.”

In 2006, a group of researchers looked at how race impacted a person’s ability to receive a diagnosis for an eating disorder. They found that even when patients presented with identical symptoms, their odds of receiving a diagnosis varied heavily depending on their race. Controlling for how a patient presented, a White woman would receive a diagnosis 44 percent of the time and a Hispanic woman would 41 percent of the time. But for Black women with identical symptoms as their peers of other races, their odds of receiving a diagnosis was only 11 percent.  

Many medical providers are well trained in spotting signs of anorexia in young White girls, but might not know as much about the many other signs in different groups of people, said Whitney Trotter, a registered dietitian who also consults on how to make eating disorder treatment anti-racist.

“When an eating disorder doesn’t look like anorexia in that population, how are our biases keeping us from being able to diagnose anorexia in others? From being able to diagnose bulimia? Binge eating?”

This lack of training, knowledge and access can be deadly for those from marginalized groups who are experiencing disordered eating, Trotter said. “Eating disorders are our second deadliest mental health disorder and it is important to think about who is disproportionately impacted by them.” Though eating disorders impact about 9 percent of the population nationwide, people of color are half as likely to be diagnosed with an eating disorder and receive treatment. 

Edwards-Gayfield said that in addition to racial bias, research has shown that eating disorder providers often hold bias about eating disorder patients themselves, feeling that their patients are “responsible” for their own behavior. “This is what they do to themselves,” is a commonly held sentiment, she said. This kind of bias, then layered on top of the bias that Black people already face in the health care system, can be dangerous. The situation can be compounded for Black women if they are at a higher weight, with providers frequently immediately turning their focus to obesity and weight loss measures and not actually opting to assess their behaviors in regards to food itself. 

“There’s this belief that Black women don’t even struggle with eating disorders,” Edwards-Gayfield said. “So it’s not even about how they are treated differently as a subset of patients, but that they aren’t even seen as a possible patient.” 

This is why she said that a critical step is increased outreach by eating disorder experts who work with marginalized communities to providers in a wide range of fields to educate them on what eating disorders look like beyond the SWAG stereotype. Through her work as a regional vice president at the Renfrew Center, a network of eating disorder treatment centers, Edwards-Gayfield said she has focused on reaching out to providers who historically have said they do not treat eating disorders. Helping this demographic understand that a person who may be presenting with anxiety, depression or substance misuse and seeking treatment for those kinds of diagnoses may also have an eating disorder can make for a crucial first step in making sure that everyone has a foot in the door to receiving the diagnosis, and care, they need.  

She said that for those she treats, she tries to phrase things in an open-ended way, asking what things a person may do when they are feeling anxious or overwhelmed to feel better — and if their food intake changes when they feel that way, or if any of their behaviors when experiencing those feelings are food-related. 

“Someone may be presenting, but if you’re not asking the right questions, they won’t tell you,” Edwards-Gayfield said.  

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The problems extend to treatment, too. Jessica Wilson, a dietitian who specializes in eating disorder treatment in women of color, says that sometimes Black women use disordered eating as an “assimilation strategy.” 

“Safety and survival can only come when we shrink ourselves before people tell us we’re too much,” Wilson said. “We have to make ourselves literally and figuratively smaller in a room when we’re already hyper visible, in situations where we are already deemed to be a threat.” 

But many of the people who work within the eating disorder care system — a large percentage of whom, Wilson said, are thin White women who have histories with disordered eating themselves — are unable to understand that “gaining weight means that their safety and survival tools might disappear,” Wilson said.

The predominantly White field of disordered eating treatment has been harmful for people of color, Wilson said. Much of the language in current eating disorder treatment centers around “body assumptions,” Wilson said — things that people think are true about their appearance versus things that are not, in fact, empirically true. For White women, this might mean trying to unlearn the belief that their appearance has dictated the circumstances of their lives. But for Black women, this can mean acknowledging and openly discussing the exact ways that their physical appearance has impacted the way that others see and treat them, and what it means for them to be safe. For a Black woman, Wilson said, that is a necessary first conversation to have to then begin assessing how their behaviors around food might be impacting their health.

“As clinicians and Black dietitians, the conversation is always, ‘Do we take on negotiating the racial harm you may potentially experience here?’” Wilson said of helping Black patients understand treatment given the realities of how society views Black women’s bodies.  

This also involves recognizing the ways in which talking about weight is inherently steeped in what Edwards-Gayfield says is a “White male and white supremacist mentality” that reinforces the idea of weight stigma itself, starting with the development and continued utilization of the body mass index (BMI) as an indicator for health. Originally modeled off of and created by a White male European academic in the 1800s, BMI as a metric of health is inherently rooted in the idea that there is an ideal body: that of a thin White man. In America, Edwards-Gayfield said, this idea of using weight as a tool for justifying racism is inherently tied to enslaved people. Weight stigma, she explained, is about not only an aversion to fatness but a preference for thinness that sets up fatness as a stand-in for “excess and savagery” that posits fat bodies as “gluttonous” and “lazy” — and in the case of enslaved people in America, bodies that “need to be controlled.”

This then created an American mentality that made fat bodies — and especially fat, Black bodies — “synonymous with sinful and lazy individuals.” It continues on today, Edwards-Gayfield said, in the eating disorder treatment field through the continued usage of BMI by the medical establishment without acknowledgement that it is a metric “created for discrimination” that is also used to “maintain a race and gender hierarchy present in America.”

Wilson said that it is because of this fraught history baked into how the medical establishment thinks about different kinds of bodies that for many patients, the idea of treatment itself can be dangerous. It’s a reality, she said, that eating disorder treatment providers need to actively reckon with when counseling patients about treatment as a tool for health within the context of their race and gender: 

“Do you need medical stability and will we sacrifice your mental wellbeing for you to enter this historically and consistently harmful environment that is steeped in white supremacy? It’s a terrible decision for all dietitians to make.”

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Given the many barriers that marginalized communities are up against when it comes to living safely in their bodies, incorporating a holistic view of a person’s heritage and community can be essential in evaluating what eating disorder treatment may look like for a given individual. Some people, like Trotter, are working to bring this perspective into their own work and research. 

“Until recently, historical trauma was just not mentioned,” she said. “We talk a lot about  historical trauma a lot as a society now, but I would love it if we could talk about it in all communities when it comes to eating disorders.”

In her own practice, Trotter has regularly worked with a great number of Jewish clients, and said that the ways that historical trauma has impacted that population have been eye-opening to her and her work; cultural and historical factors have been critical to name and recognize in moving someone towards treatment and health. It is something she has factored into her own work with Jewish patients, for whom fasting can be both a part of religious practice and a trigger. It is also something she wishes she saw more often from other practitioners, especially when it comes to the descendents of enslaved people.

Trotter is currently working towards earning her PhD to become a psychiatric nurse practitioner. From her work and research, she said that those who face the greatest barriers to diagnoses are immigrants, refugees and asylum seekers. After those groups, she said, the next most impacted are people of color. 

For all of these demographics, stigma prevents people from being able to access not only treatment, but diagnoses. “There is a fear and scarcity of options of how to access mental health resources,” Trotter says of these communities specifically. “There is a lot of stigma around mental health in those communities — and when there is already stigma associated with it, how forthcoming are you going to be in meeting with a provider?”

The situation is further complicated by current metrics of diagnosis and what they mean for insurance coverage,and the way that socioeconomics add another layer onto the difficulty of accessing treatment.

Edwards-Gayfield stressed that cost-related barriers are critical in examining how marginalized communities are shut out of care around disordered eating. 

“Even if you can get a diagnosis and even if you can get referred to treatment and even if you can afford it — it then becomes a question of if you have resources. Not just financial resources, but the resource of time,” Edwards-Gayfield said. 

Treatment, she said, could include outpatient services, meeting with a therapist, a dietitian and a psychiatrist. It could involve a partial hospitalization or day treatment facility. 

“Do you have the resources to pay for treatment based on the kind of insurance coverage you have and can get, but also the resources to take time away from your job or school or life to get the treatment you need?” she asked.

For women of color, these questions can be even more fraught, Edwards-Gayfield said, because of the income wage gap. In 2021, Black women earned 63.1 cents for every $1 earned by White men — a much wider gap than the 79.6 cents White women earned. Edwards-Gayfield says that the reality of this income disparity creates a hard-hitting reality for Black women who have less discretionary income to begin with, for whom finding the money to pay for treatment for themselves may not even be an option. 

Should someone manage to overcome the barriers of diagnosis and cost, the roadblocks to facing comprehensive healing do not suddenly disappear. It’s why Edwards-Gayfield says more clinicians need training on historical, intergenerational trauma and the larger cultural messages people of color receive from society that they may bring in with them to the treatment room. 

“We have so much work to do,” she said.

The change happens, Edwards-Gayfield said, in acknowledging this critical need for change in the face of a history of gender and race-based bias in the eating disorder field. “People need to be seen and heard. So even if you don’t get my experience as a marginalized person, as a Black woman — you can still have the sense of, ‘Oh, this person is bringing in some things to this clinical space.’”

She spoke of the risk people already feel in seeking treatment. “We’ve already asked them to lean in and take a risk and be uncomfortable and be vulnerable. So as a Black woman, if I walk into a space and it’s a homogenous picture of Whiteness, do I then choose to take a risk and lean in?” 

For Gray, being the oldest person in the room and the only person of color was difficult. Especially as a Black woman in her 40s, Gray said that treatment itself — and the demographics she was surrounded by — “drove home this sense of shame. Like I was this older person who doesn’t have their shit together, who can’t find a way to deal with this by now.” Eventually, she came to develop “maternal feelings” for a lot of the younger girls she found herself in treatment with, and found being able to find security in that relational dynamic to be “helpful and healing for me in that space.”

The question then becomes, Wilson said, how to find new, already existing systems of support, connection and community so that marginalized people can have those people and tools to turn to once they begin the work of healing. “I will oftentimes have people fully understand what I’m saying, and then say, ‘I’m not ready right now.’ And that’s fine. I get it. So I leave my door open.”

Looking back on her experiences with disordered eating today, Gray said she thinks about the way she was constantly moving back and forth between “two different worlds that had different perceptions of body image” and the way that “so few Black women are out there speaking about eating disorders. Black people, we have so many experiences of bias in doctors’ offices all the time, for various reasons and various kinds of conditions and this is yet another one to add to the list.” Experiencing disordered eating was yet another way she felt a further sense of otherness, no matter what space she existed in — and with dangerous results. 

When it comes to racial bias in eating disorder diagnosis and treatment, Gray said that it can be summarized very simply: When it comes to those in charge of diagnosing and treating, “they simply don’t see it. [Women of color] don’t fit the picture many of us have when they think of the illness. It surprises them. But broadening the perspective and letting people see themselves reflected in people like me? It can save a life.”