Anyone can have an unhealthy relationship with food, but some groups are at increased risk of developing an eating disorder, or ED. LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, asexual) people face risk factors like stigma, bullying, and negative beliefs about gender identity and sexuality. Plus, many people in this community face barriers to ED treatment, especially those with unique gender experiences.
Public Good News spoke to two members of Fighting Eating Disorders in Underrepresented Populations, a trans and intersex collective, about their experiences with EDs. Here’s what they said.
[Editor’s note: The contents of these interviews have been edited for length and clarity, and to protect identity when requested. Language about gender and intersex experiences varies. We use each speaker’s own words to honor their perspective.]
“Em” [Em is using a pseudonym to protect her identity]
Age: 32
My ED, anorexia, started when I was 12. I was first hospitalized for my ED when I was 13, and then between the ages of 13 and 20 years old, I was struggling severely with it and was often hospitalized.
I’m an intersex woman. People who are intersex are born with sex traits—such as reproductive organs, hormones, gonads—which fall outside of binary expectations of what sex is.
For me, I think [my ED] was, at least in part, a way to cope with medical trauma related to being intersex and feeling confused about my identity. Also, I took the anxieties I had faced in childhood and coped with it by overexercising and restricting [food], and I struggled with some purging behaviors, like using laxatives. [My ED] became my identity for many years, and it was the one thing I felt I did well, or sometimes it was a punishment. I also saw my body differently than what it really looked like.
When it first started, I didn’t know what an ED was. My parents were concerned because I looked unwell and was very much controlled by the ED, so they took me to the pediatrician who said, “You have what’s called anorexia.”
For a long time, I lived five hours away from the closest hospital with ED expertise. After I would be in the hospital for two to five months, I would go home, where there was very little expertise in EDs. And my insurance only covered a few places, often not to the extent that I needed.
From the beginning of my ED, I did treatment in a hospital. Then I did a partial [hospitalization] program. Eventually, I got more stable with my ED and had different insurance, and I was able to do intensive outpatient treatment [Intensive outpatient treatment is for those who need more support than weekly therapy sessions but don’t need 24/7 supervision or medical care].
Now, my symptoms and behaviors are stabilized, and I just struggle with a chronic dissatisfaction with aspects of my body. But I’m able to tolerate uncomfortable feelings and thoughts way better than I did [before]. I’m in recovery, but I wouldn’t say I’m recovered, because the ED is still a scar that I have. It’s not an all-consuming physical danger, but it’s there. It used to be like a storm—really, really loud. And now I think of it like a little bit of background noise.
“It used to be like a storm—really, really loud. And now I think of it like a little bit of background noise.”
“Em”
[I want people with EDs to know] you’re not alone. There’s very little research into the experiences of intersex people with EDs, [but] you’re not hopeless, and there’s always hope for recovering.
“Alex” [Alex is using a pseudonym to protect their identity]
Age: Early 30s
I have experienced atypical anorexia and ARFID, which is avoidant, restrictive food intake disorder. It’s hard to say exactly when it started, but probably when I was a teenager. And then it got increasingly bad throughout my twenties.
It took a while for me to feel like I really had a problem, because some of the thoughts and behaviors I was experiencing were either things that were normalized or things that were praised.
I felt like I needed to exercise as much as possible and that all the decisions I made around food had to be perfect, especially in terms of the amount of food and the kinds of food that I was eating. I was a competitive athlete in high school and college, and I felt like I not only needed to give my maximum effort in practice, but I also had to do additional exercise outside of practice. I spent a lot of time thinking about what I would and wouldn’t eat with the goal of trying to entirely eliminate foods that I didn’t think were healthy.
When I was over-exercising, I got a stress fracture in my leg, and I had a lot of problems with my rotator cuffs. I developed other symptoms when my ED was more severe, including impacts on my immune system, which were fortunately reversible, and ongoing digestive problems.
I think that some of my experiences as a queer and trans person and somebody who also has some intersex traits definitely impacted my ED, but it’s hard to separate that from other factors. When I think back to the time when [my ED] started, I had a lot of challenges with feeling alienated from other people and feeling alienated from my body. When I was older, I had a really destabilizing breakup with a long-term partner that was impacted by their inability to accept that I was trans, and that breakup was a big trigger for my ED getting worse.
I was seeing a therapist and also went to see a psychiatrist. I told them I thought I had orthorexia [Orthorexia describes a fixation with healthy eating that leads to the elimination of many food groups], which I did and still do think was the most accurate description of my symptoms at the time. But they both said that’s not in [the Diagnostic and Statistical Manual of Mental Disorders] and that’s not a “real” ED. That made me feel like if I wanted to get support for something that was really distressing to me, I was going to have to do it in a different or more legible way, which is not a message I would ever want anyone with an ED to get.
When I was in my mid- to late 20s, I was honest and a little more persistent with the therapist I was seeing at the time, who referred me to a different therapist who specialized in treating EDs. That therapist referred me to a dietician. After a lot of work, I was able to find a doctor who had some experience with treating EDs, and then I moved and had to find a different doctor who had that specialty.
I’ve had outpatient care for the past couple of years, which has varied in how helpful it’s been at different times. I have been adamant when I’ve been looking for providers [because] I only want to work with people who are trans-affirming, and sometimes that’s made it harder to find providers.
“…there’s not just a one-size-fits-all approach [to treatment]. A lot of people are only presented with the option to go into the higher-level care system, which can be expensive and inaccessible and not able to adequately meet the needs of queer and trans people.”
“alex”
Now I’m living with an ED and engaging in a management and harm reduction approach to that. For me, what harm reduction looks like right now is that I’m not attempting to be abstinent from my ED behaviors. [I’m] trying to mitigate the negative impacts and have both a formal and informal network of support.
So many more people struggle with EDs and don’t get diagnosed, get access to care, or have the language for what they’re struggling with. Everybody deserves care and support that is appropriate and affirming and doesn’t force them to experience discrimination or show up as only a part of themselves.
Also, there’s not just a one-size-fits-all approach [to treatment]. A lot of people are only presented with the option to go into the higher-level care system, which can be expensive and inaccessible and not able to adequately meet the needs of queer and trans people. So, using peer support and harm reduction are options that can be life-affirming.
If you think you might have an ED, learn about the warning signs and where to find care.
FEDUP maintains a list of gender-affirming ED treatment providers and hosts free, virtual, peer-led support groups for trans, nonbinary, and intersex people with EDs.
For more information, talk to your health care provider.