Eating Disorders Don’t Discriminate — But Treatment Does

Cam Herrera was 14 years old when her eating disorder (ED) started. At her predominantly white middle school in Plainview, Long Island, she was the only Latina in her grade. Her body was developing; to fit in with her peers, she tried stopping the curves that Colombian-American girls are expected to have from forming. Her family was torn apart after her parents divorced. Her life was changing and there was nothing she could do about it, but food became one thing she could control. 

She rarely ate her mother’s South American dishes, and she calculated calories before consuming anything. Then, one summer, while out with her family, she fainted. “That was the moment my mother realized I was very sick,” Herrera, now 28, tells Refinery29 Somos. “I was so malnourished and was eating next to nothing.” 

After being rushed to the hospital, her heart rate was so low that Herrera, grappling with anorexia nervosa, was immediately admitted to an ED treatment center. She describes her six-plus months in inpatient and outpatient care as carceral. “We were punished for eating, and we were punished for not eating. We were threatened to be taken to psychiatric hospitals,” she says. While her time in the residential center helped her recover from anorexia, she says it didn’t heal her relationship with food. Instead, she believes it actually temporarily kindled new disordered eating behaviors, like feeling obligated to complete meals even when she was full. There were also social and cultural strains. One of the providers at the all-white treatment center exhibited triggering microaggressive behavior, like asking if she was “that one chubby Latina.” It was difficult for her to relate to her peers in group therapy, and it was impossible for her mother to understand what the meetings were about. Still, Herrera counts herself as lucky — and in some ways, she really is. 

At least 30 million people in the U.S. will have an ED in their lifetime. Of them, 80% never receive treatment. Experts believe these numbers are actually much higher given that many people living with EDs — particularly low-income immigrants and communities of color — are never diagnosed. Black and Latinx people have EDs and body image concerns at rates comparable to or greater than non-Latinx whites, but they are less likely to obtain treatment. Most non-white people living with EDs do not receive treatment because they lack access to care, are misdiagnosed and miseducated, experience cultural stigma and misconceptions, and face language barriers.

On average, residential programs charge $30,000 per month. Considering that many patients require three or more months of treatment, the price tag for care could easily run more than $100,000 — and this price point doesn’t include the costs of travel, loss of wages, and the home, car, and utility bills that don’t pause for illness. Medicaid and Medicare don’t cover the vast majority of ED treatment, leaving many low-income and disabled individuals ineligible. But even those fortunate enough to have health insurance aren’t guaranteed residential care. While most insurance providers will cover short-term medical treatment related to EDs, like unstable heart rates, there remains a recovery treatment gap. 

For health insurance companies to cover residential treatment, patients are required to be “clinically underweight” based on their BMI, an arbitrary, subjective label that disregards most physical and mental health consequences of EDs, overlooks the reality that Black and Brown women tend to have more muscle and bone density than white women, and falsely presumes EDs have a look. This prerequisite can also trigger people to fall deeper into the disorder; for Black and Latinx sufferers, who are more likely to struggle with binge eating disorder (BED) and bulimia nervosa than non-Latinx whites and more commonly subscribe to an hourglass ideal than an ultra-thin one, it could totally disqualify them from residential care. Last year, Janet Santibañez was diagnosed with BED. Her doctor recommended that she speak with a nutritionist who, after sending her a general meal plan, encouraged the 27-year-old Mexican-American to call a treatment center for care. When she did, Santibañez was told that the facility was only taking patients with anorexia nervosa and told her to call back in two months. She did, and the response was the same. “I feel like no one gave a shit, not the nutritionist and not the center,” Santibañez, who still hasn’t received any treatment, tells Somos. “It’s not fair to dismiss BED. It causes a lot of issues, too.” She’s right. Health risks associated with BED include high blood pressure, high cholesterol, heart disease, type II diabetes mellitus, and emotional and mental distress. 

Herrera, whose insurance was able to cover her treatment, has heard too many stories like this. Hoping to increase access to treatment, she is now a volunteer with Project HEAL, a nonprofit providing free treatment placement, insurance navigation support, virtual clinical assessment, and cash assistance for people living with EDs. There, she leads content creation, producing, curating, and sharing resources on social media that is educational, culturally humble, inclusive, and available in English and Spanish. With a mission to create equity in ED treatment, Project HEAL prioritizes people experiencing systemic barriers, like queer, trans, disabled, immigrant, and non-white sufferers. In 2021, the nonprofit supported 181 people in their recovery journey; of them, 33 were people of color. 

But the nonprofit also wants to transform the ED recovery system that is failing so many. "There's a lot of implicit biases," Rebecca Eyre, CEO of Project HEAL, tells Somos. "No center will explicitly say, 'no people of color welcome,' but they do operate as if it's one-size-fits-all, and we know that's not true." ED research has historically focused on young, white, cis girls with anorexia. As a result, the care provided in ED treatment, including outpatient and inpatient care as well as most ED therapists and dietitians, follow modalities that weren’t created with non-white people in mind. Consequently, care for people of marginalized identities can be offensive and/or ineffective. Most residential centers, for instance, don’t have Black or Latinx staff who look like their patients or understand their experiences. Even more, centers often require family involvement, which is a tremendous barrier for people whose families are not English-dominant, are undocumented, or are separated due to deportation, incarceration, or abuse-related estrangement — traumas that often contribute to disordered eating. “These are supposed to be places of healing, but with this level of otherness, there’s a whole retraumatization process,” Eyre says. 

Simply put, residential treatment is nearly impossible to access for most individuals — leaving many low-income people of color to struggle alone or seek alternative care. Digital health startups like Equip, which offers evidence-based virtual care, are trying to make recovery more accessible. Launched in February 2021, Equip assigns patients and their families a five-person dedicated care team that includes a medical physician, a therapist, a dietician, and peer and family mentors. The cost for a year’s worth of treatment is equivalent to one month in a residential center, but Equip offers sliding scales, accepts most health insurance plans, and is working to secure contracts with Medicaid. Treatment plans are customized to fit each patient’s schedule, and teams reflect the patients being served. In fact, 32% of the staff is non-white, 34% identify as LGBTQ+, and 63% have lived experience with an ED. 

“Most of the families I work with are Latinx," Rosemarie "Chita" Gastelum, the lead family mentor at Equip, tells Somos. "This cultural understanding makes a huge difference in the way I'm able to support them and the skills I'm able to teach them." In addition to family-based therapy, dialectical behavior therapy, and cognitive-behavioral therapy, Chita, who has recovered from an ED and helped her daughter to as well, incorporates holistic Indigenous healing practices she grew up with when working with families with shared backgrounds or who are open to alternative healing. 

Similarly, dietitians like Isabel Vasquez design meal plans for families that incorporate their cultural foods. Most residential centers do not serve dishes that are common in Latinx and Black homes and do not work with dietitians of color (in fact, there are only 25 Black dietitians treating EDs in the U.S.). Consequently, patients return home with continued or new fear around their staple foods. “My goal is to make sure they restore weight if they need to and work foods back in that have become scary to eat,” the Puerto Rican-Dominican registered dietitian says.

While virtual care is widening access to recovery treatment, it’s still more common for non-white people to build their own ED support communities. In Philadelphia, Giva Wilkerson recovered from atypical anorexia nervosa, which occurs when someone has all the symptoms of anorexia except being “clinically underweight,” after years of working with a licensed therapist and moving in with her aunt who provided support. In New York, Jasmine Paulino has been working through her BED with support from an ED anonymous group. In Florida, my recovery from bulimia has incorporated therapy, ED support groups, and returning home for family support. According to Naomi Tapia, an associate marriage and family therapist who primarily works with women and nonbinary people struggling with EDs, disordered eating, and body image, this DIY approach to care is common for Black and Latinx folks largely because it’s more affordable (out of pocket, therapy can cost about $500 a month), more likely to be covered through health insurance, and more realistic for people who can’t take time away from work or have relatives that depend on them for care. Tapia says not a single one of her non-white clients in Tustin, California, have received outpatient or inpatient ED treatment, though some of her white clients have.

Another reason Black and Latinx people are more likely to customize their care through therapy, ED coaches, and/or online and in-person healing spaces: It’s easier to find a professional who looks like them and will consider the historical violence and social inequities that contribute to their illness. Our identities, and what we experience because of our intersections, play a role in our EDs and should be acknowledged during our recovery. “If ED therapists don't have that lived experience or understand your culture, recovery will be limited. Sure, they might help get you to a healthy weight when you’re released from treatment, and yes that’s important, but you’re not taught coping skills for specific cultural moments,” Tapia says. For instance, it’s common for elders in both Black and Latinx homes to tell young people they need to lose weight and then pack their plates with food and expect them to finish it. What does coping with this specific chasm look like?

Similarly, when Wilkerson, the now New York-based certified ED coach, works one-on-one with clients, she holds space for people of color to open up about their struggles and their grievances with ED care. “Going into a treatment center or support group and not seeing anyone who looks like you is hard. You’re talking about something extremely personal, something most people carry a lot of shame and guilt around. Sharing this is painful, especially if you feel unsafe,” she tells Somos. In addition to helping individuals develop coping strategies and accompanying them for meal, shopping, and social gathering support, she facilitates support groups. In her BIPOC group, they discuss the isms that are often rooted in our negative body image and the anti-Black origins of fatphobia. “We talk about African-American beauty standards, the impossibility of wanting small waists and big butts and boobs, waist trainers, people not understanding your hair, controlling your body, and how this impacts career opportunities. It’s all so nuanced,” she adds. 

Understanding the complexity of ED and recovery for non-white people, Gloria Lucas, founder of ED awareness and body liberation organization Nalgona Positivity Pride (NPP), focuses on long-term radical care. “It’s unfair to expect racialized people in this country to not relapse ever again. Why do eating disorders happen to begin with? For many of us, it’s a way of surviving the system,” Lucas, who refers to her time in an ED treatment center as “cruel,” tells Somos. Through public talks, educational memes, and its free Sage and Spoon support group, NPP explores how race, colonialism, and socioeconomic oppression contribute to EDs and negative body image and offers resources and support rooted in harm reduction. Similarly, Black and Latinx dietician-led Instagram accounts like The Nutrition Tea and Your Latina Nutrition are healing our communities' relationship with cultural foods. “Most of the people we see are struggling with some form of disordered eating, or have struggled with it in the past, and are ready to let go of their fears around food, unlearn food rules, and quit diet culture,” Vasquez, the ED dietician with Equip who is also a lead dietician with Your Latina Nutrition, says. Through intuitive eating coaching, online courses, and educational blogs, Vasquez and founder Dalina Soto help Latinxs reclaim the joy and pleasure of a diet-free life.

These online communities, support groups, and advocacy organizations are helpful because they allow Black and Latinx people living with EDs and disordered eating to recognize that our relationship with food and our bodies are physically and mentally unhealthy. Growing up, I watched white, cis, teen girls in films and sitcoms struggle with eating disorders; however, I never saw myself in their plight, even while grappling with bulimia and other disordered behaviors. It took more than a decade for a therapist to name that for me. Had I had access to this information earlier, and had my family and I seen images of girls who look like me living with this illness, my recovery journey may have started sooner. These spaces allow us to see ourselves when both our EDs and society compels us to erase ourselves, and they force treatment centers and medical professionals to see us, too. 

Without the often free labor of Black and Latinx ED educators and body liberation activists, themselves often survivors who are regularly triggered by their own crusade, many of us would continue to suffer in silence and confusion. Without therapists, coaches, dietitians, and mentors who share our identities and experiences, we may never externalize this illness or recognize how historical and cultural traumas contribute to it. But without access to treatment, both traditional and emerging care that require riches and leisure that many of us don’t have, recovery will continue to only be available to the most privileged and powerful.