(ANJA SILBAR FOR THE 19TH)
Standard eating disorder treatment programs — often designed around White women — don’t make room for gender variance, contributing to the problem rather than the solution.
By Jennifer Gerson
Originally published by The 19th
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When Jamie “OJ” Bushell entered an in-patient treatment facility in North Carolina for an eating disorder in 2017, they began thinking about their gender identity. Then 27, they had been struggling with their mental health since 2015 and were hospitalized for suicidal ideation, an experience that only made their eating disorder “a lot worse.”
Bushell hoped that this time, treatment would mean a dedicated time and place to finally be “my whole, true self.” Taking the time to meaningfully consider their gender identity in respect to their mental health and eating disorder felt critical to them, and treatment seemed like an opportune time for this conversation. But then one of the counselors at the treatment center told them that exploring their gender identity was “a distraction” from treatment.
“You go to groups and they tell you, ‘Authenticity, authenticity, authenticity,’” Bushell said. “When you go to these spaces and then you can’t be authentic, it’s hard. It’s confusing.”
Bushell was disheartened that engaging in treatment meant having to hide themself. But ultimately, the Boston resident found that being themselves had to be a part of their recovery, regardless of what they were hearing: They ultimately came out as nonbinary while completing their treatment. Still, the experience at the center made a lasting impact, making Bushell “question my identity, but not in a good way,” they said.
“That deterred me from exploring my gender identity more,” Bushell said. “It made me feel that [treatment] wasn’t a safe space to be my whole, true self.”
Nonbinary and transgender people are at an elevated risk for developing some sort of disordered eating. A 2018 study published in the journal Transgender Health found that transgender and nonbinary people who were assigned female at birth experience a heightened lifetime risk of developing an eating disorder. A 2020 study published in Current Opinions in Psychiatry found that 10.5 percent of transgender men and 8.1 percent of transgender women will self-report having experienced disordered eating in their lifetime. And yet, the assumptions doctors have about who develops eating disorders — which impacts everything from diagnosis to treatment — don’t make room for gender variance. Many people go undiagnosed and untreated as a result. Or, in cases like Bushell’s, standard treatment programs could easily contribute to the problem rather than the solution.
“There is an inherent power dynamic in any therapy relationship and when a trusted person says, ‘Who you are doesn’t feel right here,’ it makes you question yourself,” they said.
Ninety percent of nonbinary and transgender youth express being dissatisfied with their bodies, something often related to internalized stigma around LGBTQ+ identities and the bullying people experience as a result of their gender identity and sexual orientation. Research published in the June 2022 Annals of Epidemiology found that genderqueer and nonbinary college students reported the highest prevalence of elevated eating disorder risk relative to cisgender women. Research in the August 2015 Journal of Adolescent Health also found that, relative to cisgender heterosexual women, transgender students had greater odds of receiving an eating disorder diagnosis.
A 2022 report done by the Trevor Project found that while nine percent of LGBTQ youth ages 13 to 24 stated that they have been diagnosed with an eating disorder, an additional 29 percent said that they haven’t been diagnosed but suspect that they might have an eating disorder. Cisgender queer boys and men reported the lowest rates of both being diagnosed with or suspecting they have an eating disorder, while transgender boys and men and nonbinary youth assigned female at birth had the highest rates of both being diagnosed with or suspecting they have an eating disorder. Cisgender girls and women, transgender girls and women, and nonbinary youth assigned male at birth had similar rates of being diagnosed with or suspecting they have an eating disorder.
Yet, the stereotype experts in the field refer to as “SWAG” — skinny, White, affluent girl — pervades the world of eating disorder diagnosis and treatment, putting those who may already have a history of traumatization by medical institutions in yet another situation where seeking care might be bad for their health..
During group therapy sessions in treatment, Bushell said they felt isolated: The peers in their treatment group were largely White, cisgender and heterosexual women. They said they were told things like “people with womanly bodies need to enjoy that and inhabit that and accept that.” The message felt like an attack on what they knew to be true of themselves. They said that they would explain to the therapists saying these things that comments like this were not only hard to hear, but inaccurate for them.
“This kind of language of body acceptance is really perpetuated in treatment, and when I tried to resist that notion and say, ‘Well, that doesn’t really work with gender dysphoria,’ I was met with resistance,” Bushell said.
Their marginalization while in treatment intensified their need to continue the very behaviors Bushell was trying to heal, turning to their eating disorder for “relief and comfort.”
“It made me resistant and angry towards treatment. It made me feel like I could not trust myself. I was already struggling with that and then it only exacerbated that,” Bushell said.
Jessica Wilson, a dietitian who specializes in eating disorder treatment in communities of color, said she regularly sees this dynamic at play for the Black, queer and trans patients she serves — for these people, trying to shrink themselves through disordered eating is often a mechanism used for protection, to make themselves appear smaller in a world where inhabiting their bodies is often unsafe.
“I can’t tell them that if they were to restore their weight, things will be better for them. Oftentimes societally, it will be worse,” Wilson said. “It is really hard to talk about what they would need to give up in order to recover from an eating disorder, but I have to be upfront about that. We need to talk about how much better they’ve been treated after they’ve been restricting calories for long periods of time and the reality that that will be taken away from them.”
Jaclyn Siegel is a postdoctoral research scholar at San Diego State University who also serves as the project director for the PRIDE Body Project, a federally funded clinical trial of an eating disorders prevention program for gay and bisexual men. Her research often focuses on transgender and nonbinary people experiencing disordered eating. From her research, Siegel said that many trans people report being misgendered and facing institutional trauma from the medical establishment in the past has led to a situation where many people fail to seek help for eating disorders, even when they know they need it. This issue is only exacerbated by the fact that — if they do seek treatment — trans people often don’t find the standard treatment useful or gender affirming.
“If people can even get in the door to begin with, they often have such negative experiences in treatment that they don’t want to go back,” Siegel said. “It can feel like it’s hopeless to care about getting better — people face so much stigma, are constantly misgendered. They just don’t want to have a traumatic experience yet again, but they also may have no access to any other treatment options.”
Siegel explained that the minority stress model — an established model of evaluating the health concerns and outcomes of those who hold marginalized identities — has shown that people who identify as being part of a sexual or gender minority are already at a higher risk for experiencing mental health stress. This can explain why many of the problems currently faced by trans people experiencing disordered eating, and how efforts to get treatment can lead to further complications.
“We need to get better at identifying trans-specific stressors” in health care, Siegel said — especially in the form of eating disorder treatment. “They don’t call it the revolving door of treatment for no reason. People who go through programs just don’t get the help they need.”
“We have a lot of issues currently in the way we treat eating disorders for trans individuals,” she said.
Siegel said it is critical that clinicians not make assumptions about their patients and what might motivate their disordered eating behaviors — which means thinking beyond the framework of assuming every patient thinks and feels the same way as a thin, White cisgender and heterosexual woman. “To comprehensively help people, we have to understand that their lived experiences are different.”
At the PRIDE Body Project that Siegel oversees, the focus is on adaptation, focusing on the cultural pressures that are specific to sexual minority men. Using over a decade of research built from first-hand accounts, the program is an intervention model developed to be effective for gay and bisexual men specifically, who also disproportionately struggle with eating disorders.The program also works in tandem with community partnerships to get feedback from those participating in it, to continually refine its ability to effectively help treat.
“We need to stop assuming we have all the answers. We don’t. And we’re doing more harm than help by not including lived experiences in the conversation about treatment.”
Bringing a narrow scope to who gets eating disorders into the treatment room can not only harm the people already in the room, but keep so many people out of it to begin with. For example, Siegel pointed to the way that amenorrhea, or the absence of a menstrual period, was originally part of the diagnostic criteria for anorexia.
Bushell said that they wish that more people would understand that eating disorders are a mental health issue, one where many symptoms manifest around food and how a person treats their own body but is still at heart, “a disorder of the mind.” Once a person can understand this, Bushell added, it becomes easier to also understand that eating disorders also “don’t look a certain way.” That’s why they say that it is so critical “to recognize that discrimination and oppression lead to increased isolation and decreased self-worth, which makes it more difficult to seek help. And that is how eating disorders thrive.”
That sense of isolation, Bushell said, brought on a sense of shame and made treatment less effective. “When I was told my gender identity was a distraction from my healing, I could only assume, ‘Ok no one will ever believe me.’”
Today, Bushell feels “fortunate” to be working with a treatment team through an outpatient treatment facility in the Boston-area “who let me talk about everything — about being queer and being nonbinary and having an eating disorder.” Being able to access treatment that accounts for their queerness and gender identity is “incredibly affirming,” Bushell said. “The relief and comfort to find that in a therapeutic relationship rather than in an eating disorder has been a game changer. To feel understood — it’s hard to find words for such a feeling. It makes you feel worthy. It makes you feel worthy of being a person in a way that an eating disorder does not make you feel.”
