Coming out as transgender was fairly straightforward for Kevin. They received support from their family and gender-affirming medical treatment in adolescence. But after beginning hormone therapy and having chest surgery, new body image issues arose.
First, Kevin — a white, queer, disabled, neurodivergent person who uses they/them pronouns and asked to be identified by their first name only in this article — had to lose weight to meet body mass index requirements for chest surgery. After surgery, a fear of food textures and smells, which they had experienced since childhood, segued into more destructive patterns of "obsessive focus on perceived flaws," a hallmark of body dysmorphia.
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Body dysmorphic disorder, or body dysmorphia, is an obsessive focus on a body part, to the degree that it affects someone's daily life, according to Johns Hopkins Medicine. Unlike gender dysphoria, which is most successfully treated with gender-affirming medical treatments like hormones and surgery, body dysmorphia is rarely alleviated with medical intervention. Dysmorphia commonly occurs with an eating disorder.
Kevin is far from alone in this experience. Ten percent of trans men and 8 percent of trans women report being diagnosed with an eating disorder in their lifetimes, according to an April 2020 article in Eating Behaviors and a November 2020 article in Current Opinion in Psychiatry.
That's compared to 3.8 percent of cisgender adolescent girls and 1.5 percent of boys, according to the National Institute of Mental Health (NIMH). And in a survey of 289,024 college students in the April 2015 Journal of Adolescent Health, transgender students reported being diagnosed with an eating disorder in the past year at 10 times the average rate.
There is evidence these numbers are increasing. Worldwide, the rates of eating disorders appear to be on the rise again, according to a May 2019 article in The American Journal of Clinical Nutrition. The global prevalence of eating disorders has more than doubled since 2006, from 3.4 percent to 7.8 percent.
"Eating disorders have historically waxed and waned with social norms," Jason Rose-Langston, LICSW, a psychotherapist with 20 years of experience, tells LIVESTRONG.com. "As conservative and traditional values and ideals become more powerful or prevalent in the United States, eating disorders tend to rise because social norms get more restrictive."
Stereotypes Contribute to the Risk
The typical person with an eating disorder doesn't fit society's image of the thin, affluent, white, cisgender woman. Statistically, she is an outlier.
Unfortunately, the same biases that affect the average person also affect mental health professionals. It's widely acknowledged that the archetypal patient described here is the eating disorder (ED) treatment industry's intended market, for whom treatment is tailored. Consequently, those who don't benefit from a program tailored to women with anorexia or bulimia — including trans people — aren't diagnosed or treated effectively.
Anorexia nervosa is the least common eating disorder diagnosis, according to the NIMH. The most common is called Other Specified Feeding or Eating Disorder or OSFED, formerly called Eating Disorder, Not Otherwise Specified or EDNOS. OSFED includes some of the symptoms and behaviors of anorexia or bulimia but doesn't fully fit either diagnosis.
Contrary to the stereotype, eating disorders are more common among higher-weight individuals, according to May 2015 research in the Journal of the American Academy of Child and Adolescent Psychiatry and May 2017 research in European Eating Disorders Review. One in three people with a diagnosed eating disorder are men.
"The same desire to shrink away and disappear that can underlie the behaviors of anorexia or bulimia can occur in response to the belief that one's existence as a person with gender issues is intolerable, or that trans people should not exist."
Minority stress may also contribute to the risk for developing an eating disorder. Marginalized people, including gay men, Black teens and Asian American college students, have eating disorder symptoms at higher rates than their straight or white peers, according to the National Association of Anorexia Nervosa and Associated Disorders. Like other marginalized populations, transgender and non-binary people experience high levels of discrimination, which compounds issues of access to appropriate care and culturally competent treatment for eating disorders.
When they came out, Kevin found a trans community online, but who they saw represented, and who was notably absent, made an impression. "I didn't see fat or disabled trans people," Kevin says of their online peers. "No one was telling me that gender can look like anything." Kevin didn't see role models who looked like them, which contributed to their sense of isolation.
In the eyes of many mental health professionals, a commonality among people with eating disorders and transgender people is the relationship with and perception of one's own body as a source of distress. Many who write about the phenomenon theorize that the cause of eating disorders in transgender and non-binary people is a desire to change the body to better conform to their gender. "Body dissatisfaction plays a pivotal role in the development of disordered eating," according to an April 2020 Eating Behaviors article.
Kevin agrees: "I think my eating disorder and gender dysphoria work together in a way. They've always done a tango. I had to lose weight to have surgery. Once I could be shirtless, I wanted to be all the time, but I was comparing myself to everyone."
But only about a third of 84 trans people with eating disorders who were surveyed for the May 2016 Journal of LGBT Issues in Counseling felt there was a direct relationship between their gender dysphoria — the disconnect between their felt sense of gender and their body's appearance — and their eating disorder. Body dysmorphia is not the genesis of all eating disorders in trans people.
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A Lack of Competent Care Compounds the Issue
Rose-Langston has noticed gender dysphoria is less often the precipitating factor in eating disorders among his transgender clients today than 10 years ago. Access to information about gender is growing, and consequently, fewer people come to his office without the language to describe their experiences.
"I haven't seen a case like that in quite a long time," he says. "Nowadays what I see more often are eating disorders becoming almost a secondary symptom of trying to gain control over the body."
The classic examples are of the transgender woman who uses her eating disorder to be as thin as possible, in order to conform to female beauty norms, and the transgender man who develops anorexia while building up his body to create a muscular, "cut" ideal. But there are other causes of eating disorders in trans people that he sees in his practice.
"So many in the trans community have been victims of trauma. I see an incredibly high rate [of] post-traumatic distress," Rose-Langston says. "We knew trauma was correlated with eating disorders. It made sense that a community with a higher rate of trauma would see a higher rate of eating disorders. It becomes a chicken and the egg question" to understand the chain of causation that brings a patient to his office, he says.
In other people, Rose-Langston sees eating disorder behaviors as a very literal assault against the body, one that may be driven by internalized transphobia. The same desire to shrink away and disappear that can underlie the behaviors of anorexia or bulimia can occur in response to the belief that one's existence as a person with gender issues is intolerable, or that trans people should not exist.
The Dangers of Untreated Eating Disorders
Eating disorders are almost always accompanied by other mental health problems, including a high risk of self-harm and suicidal ideation. This comes on top of the already high rates of attempted suicide reported by transgender people.
In a 2015 survey conducted by the National Center for Transgender Equality, 40 percent of respondents had attempted suicide in their lifetimes, almost nine times the U.S. average. And transgender and gender-questioning youth are more than twice as likely to have made a suicide attempt requiring treatment in the past year than their cisgender counterparts, even after adjusting for other known suicide risks, according to an April-June 2021 Archives of Suicide Research study.
When trans people have an eating disorder, their risks of self-harm and mortality skyrocket. The same survey of 289,024 college students mentioned above, analyzed by a different research team in the April 2019 Journal of Adolescent Health, found 75 percent of transgender respondents with an eating disorder had attempted suicide in the past year.
But trans people's disordered eating behaviors are going undetected, according to studies in the December 2019 issue of the Journal of Adolescent Health and the April 2020 issue of Eating Behaviors. "Very often these problems don't show up right away at the initial assessment, so you have to be ready to work with whatever comes up in the course of treatment," Rose-Langston says.
Physically, eating disorders lead to malnutrition, which can have permanent effects on health, according to Penn Medicine. Starvation can further degrade mental health. And although earlier studies have focused on the mortality rates for anorexia, other eating disorders have comparable rates of morbidity, according to an August 2012 Current Psychiatry Reports study.
How to Make ED Treatment More Inclusive and Effective
Despite the recognized dangers to the trans community, the mental health profession has only just begun to develop best practices for the management of eating disorders in this underserved population. Specialists like Rose-Langston, who has treated eating disorders his entire career and is also a trained gender specialist with 18 years of experience, are still relatively rare.
More and more nationwide treatment programs say they treat all genders; as recently as 2018, according to a thesis published at DePaul University, very few did. But there is still a need for continued progress. Here are four steps that may help.
1. Address Long-Standing Stigma
Rose-Langston believes there is a reluctance among his peers to care for patients who do harm to themselves. "Eating disorders have a huge stigma. Patients have been badly treated by the therapeutic community, probably forever, because of taboo."
"When I started, if you got someone in your caseload with an eating disorder you sent them to an eating disorder clinic, and that's all," Rose-Langston says. Consider what this does to a patient's trust, if disclosing an eating disorder ends a therapeutic relationship. Yet separate eating disorder treatment centers remain the dominant model of care.
A significant danger in specialized eating disorder treatment programs is missing the underlying cause of disordered eating, Rose-Langston says. The main form of psychotherapy offered in ED programs is CBT, or cognitive behavioral therapy, which focuses on changing behaviors, not their root causes. "Eating disorders are almost always linked to another primary driving factor causing the behavior. As a provider, you have to do more detective work."
2. Expand ED Treatment's Understanding of Gender
Kevin's first experience in an eating disorder treatment center was "unhelpful," they say. "They wrongly diagnosed me, so I was treated for three months for something I didn't have."
Plus, the center had limited understanding of their gender-specific concerns. "I was misgendered every day. Queer group was on weekends only. They saw trans stuff as a separate elective."
The program used a common therapeutic approach designed to foster unconditional acceptance for one's body. Yet transgender people with eating disorders, and experts on their care, agree this is inappropriate for patients with gender dysphoria. Participants in the Journal of LGBT Issues in Counseling study described the "positive body image" approach as invalidating and ineffective.
Instead of promoting acceptance of gendered body attributes that cause dysphoria, an article in the November 2020 issue of Current Opinion in Psychiatry suggests incorporating gender-affirming medical treatment into eating disorder programs to increase body satisfaction. In an April 2017 study in Health Psychology including 154 transfeminine spectrum and 288 transmasculine spectrum individuals, those who received gender-affirming treatments, including hormone therapy and chest surgery, showed fewer eating disorder symptoms.
In an open letter published in 2020, the FEDUP Collective, a transgender and intersex collective that fights eating disorders in underrepresented populations, called for an end to the practice of having separate eating disorder treatment programs for men and women. The causes, symptoms and behaviors are similar in adolescent boys and girls, they write, and ED treatment centers can be the first safe spaces for people to discover or disclose their transgender status.
The good news is that intersectionality is replacing specialization as the new standard in mental health care. "Everyone shows up with their own story and genesis of their problems and needs the same level of individual respect and care as anyone else deserves," Rose-Langston says. ED treatment centers need to be ready for who shows up, instead of unconsciously preparing for a model patient who is statistically rare.
3. Screen Young People Sooner
Problematic eating behaviors and beliefs that can escalate to a diagnosed disorder usually start in adolescence or young adulthood. Eating disorders are the third most prevalent chronic disease among adolescents, according to The Emily Program, an organization focused on eating disorder recovery.
In January 2021, the American Academy of Pediatrics updated its guidance to recommend routine screening for eating disorders at annual physicals for preteens and adolescents.
Young people need earlier, age-appropriate information on health and identity. In a qualitative study of subjective experience published on the website of a gender-affirming care practice, GenderGP, in October 2021, three young trans men reported their eating disorder behaviors and symptoms began when they entered puberty, but they lacked knowledge at the time that would have guided them to healthier choices. They would have used puberty blockers instead of disordered eating behaviors, they reported, if that had been an option they were aware of.
All children, and particularly children at high risk of self-harm, deserve accurate, trans-affirming, comprehensive sexual health education, not silence and evasion, from people they trust. Treating children with dignity and transparency could mitigate significant risk factors for serious mental health problems, including self-harm, substance abuse and eating disorders.
4. Prioritize Community Care
Community care includes peer support and follow-up services. Upon release from the eating disorder program they attended, Kevin did not receive promised follow-up care, such as a dietitian referral. They found a trans-competent dietitian through FEDUP and Health At Every Size (HAES), a public health approach that aims to reduce weight stigma.
Treatment would ideally extend to the community: repairing cultural beliefs about gender norms and beauty standards, intolerance for bullying and bigotry and diagnosis and care for the host of traumas that an unjust society has dealt, in unequal measure, on those with the fewest resources.
After seeking treatment for their eating disorder three years ago, Kevin found a healthier group of trans people to follow online. Today, Kevin is active with FEDUP, and a more conscious advocate and role model.
For trans people who lack safe spaces, family support, self-knowledge and competent care, "your eating disorder is your friend," they explain, and a promise of achieving gender congruity and acceptance no one else will extend.
People compensate for the pain and stress in our lives in the ways we can access. Caring for people with eating disorders requires compassion and understanding. Self-destructive behaviors can be a tool of last resort for marginalized people. We owe it to trans youth to replace lies and judgment with information, competent and affirming health care and the embrace of a community that makes room for all of us.
Related Reading
- Scientific Reports: "Muscle dysmorphia and its associated psychological features in three groups of recreational athletes."
- Journal of LGBT Issues in Counseling: "Transgender clients’ experiences of eating disorder treatment."
- The American Journal of Clinical Nutrition: "Prevalence of eating disorders over the 2000–2018 period: a systematic literature review."
- GenderGP: "Gender incongruence and anorexia nervosa: an AFAB perspective"
- Archives of Suicide Research: "Suicidality among gender minority youth: analysis of 2017 youth risk behavior survey data."
- National Center for Transgender Equality: "The Report of the 2015 U.S. Transgender Survey."
- Current Opinion in Psychiatry: "Emerging trends in eating disorders among sexual and gender minorities."
- Eating Behaviors: "Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among transgender men and women."
- Current Psychiatry Reports: "Epidemiology of eating disorders: Incidence, prevalence and mortality rates."
- Health Psychology: "Gender confirming medical interventions and eating disorder symptoms among transgender individuals"
- International Journal of Eating Disorders: "Disordered eating behaviors among transgender youth: probability profiles from risk and protective factors."
- Johns Hopkins Medicine: "Body Dysmorphic Disorder"
- NIMH: "Eating Disorders"
- Penn Medicine: "Eating disorders do not discriminate: trans teens face greater risk"
- The Emily Program: "Identifying eating disorders in children and teens"
- National Association of Anorexia Nervosa and Associated Disorders: "Eating Disorder Statistics"
- AAP: "Identification and Management of Eating Disorders in Children and Adolescents"
- Journal of Adolescent Health: "Prevalence of Self-Injurious Thoughts and Behaviors in Transgender Individuals With Eating Disorders: A National Study"
- Journal of Adolescent Health: "Gender Identity, Sexual Orientation, and Eating-Related Pathology in a National Sample of College Students"
- European Eating Disorders Review: "The Prevalence of Past 12-Month and Lifetime DSM-IV Eating Disorders by BMI Category in US Men and Women"
- Journal of the American Academy of Child and Adolescent Psychiatry: "Weight Status and DSM-5 Diagnoses of Eating Disorders in Adolescents From the Community"
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