Megan, an LGBTQ-identifying Eating Recovery Center alum who asked to be identified only by her first name, wasn't formally diagnosed with an eating disorder until she was 30, though eating was a regular battle for her years prior.
"My eating disorder ruled my life," she said. "I was obsessed with food, and was so afraid to eat. The fear was paralyzing. It was easier for me to deny my body essential nutrients than to face the overwhelming anxiety the mere thought of food caused." As Megan started having significant medical problems, her doctor hospitalized her because he thought her heart might stop. She thought he was overreacting and kept telling herself she was fine.
"But I wasn't fine," Megan said. "I would have to stop in the middle of the stairwell to catch my breath on my way to my second-floor office. The automatic lights in the bathroom stopped turning on when I walked in. I had become a ghost of a person."
Eating disorders take many forms, from anorexia nervosa (depriving oneself of food), bulimia nervosa (binging and purging) to other unspecified disordered eating, which can be a form of self-harm. Eating disorders can be fatal, with mortality rates of 4.0% for anorexia nervosa, 3.9% for bulimia nervosa and 5.2% for eating disorder not otherwise specified, according to the National Eating Disorders Association, or NEDA.
Across LGBTQ communities, disordered eating has become an epidemic. According to the NEDA, 42% of men who have eating disorders are gay; gay and bisexual men are seven times more likely to binge, and 12 times more likely to purge than heterosexual men.
"The automatic lights in the bathroom stopped turning on when I walked in. I had become a ghost of a person."
A Drexel University study published in September 2015 found that "young women who are attracted to both sexes or who are unsure about who they are attracted to are more likely to develop an eating disorder than those attracted to only one sex." A Washington University study published in May 2015 found that among 289,024 college students from 223 U.S. universities, transgender people had the highest rates of eating disorders.
And these are just a few statistics. LGBTQ individuals of all identities, races and socio-economic statuses are highly susceptible to eating disorders.
Why is this happening?
"There are a number of factors that make the LGBTQ population particularly susceptible to developing eating disorders," Alissa Petee, child and adolescent primary therapist at Washington's Eating Recovery Center, said.
"It can be traumatic to grow up in a homophobic, heterosexist world. Many may grow up feeling confusion and shame about their sexual orientation and/or gender identity, and children and adolescents are especially prone to attempting to change their internal experiences by changing their bodies and controlling aspects of life that are accessible to them, including food intake."
Eating disorders do not disappear into adulthood, and especially for LGBTQ people grappling with, or even passively coming to terms with their identities, eating disorders are more common later in life. A December 2010 study found that the average age for LGB people (trans people were not included in the study) to develop an eating disorder was 19.2 years old, while the median age nationwide is 12 to 13 years old.
"Adults who have come to terms with their sexuality and gender often carry internalized homophobia that can continue to be toxic and painful for them — but it is difficult to recognize that source of pain when one seems to have already gone through the process of coming out," Petee said. "Underlying trauma and grief related to being different, fear of violence and ostracism, etc., can be fertile ground in someone already genetically predisposed to developing an eating disorder."
"Adults who have come to terms with their sexuality and gender often carry internalized homophobia that can continue to be toxic and painful for them — but it is difficult to recognize that source of pain when one seems to have already gone through the process of coming out." — Alissa Petee, child and adolescent primary therapist
Similarly, additional causes of stress and distress in the life of LGBTQ teens and adults can lead to developing an eating disorder.
"There are many stressors LGBTQ people face, which include coming out and unfortunate harassment when attending school or work," said Heather Senior Monroe, a licensed clinician at Newport Academy, a mental health treatment facility for teens. "This can bring on feelings of low self-esteem, loss of control, anxiety, and depression and also cause a person to resort to harmful coping mechanisms which include alcohol and substance abuse.
"LGBTQ people may further internalize negative feelings due to being extra self-conscious of 'how they look' or how they are perceived by others. All of these issues can create an unfortunate snowball effect leading up to dangerous outcomes such as eating disorders."
The epidemic is prevalent across LGBTQ identities.
Eating disorders are about changing one's body, so those experiencing gender dysphoria (the feeling of one's identity not aligning with their body) can be particularly susceptible to the disease as well.
"Eating disorders can stem from trying to alter their bodies through dieting and exercise so it more closely resembles who they are on the inside," Petee said. "People may attempt to delay or reverse impacts of puberty through restriction." For noncisgender people, recovery can be even more challenging, as it "requires learning how to accept their bodies outside the lens of the eating disorder (which may tell them they are overweight, etc.) and from the perspective of feeling fundamentally incongruent with their appearance from a gender standpoint," Petee said.
What causes an eating disorder can be manifold, as the Columbia study found, "gay and bisexual men with eating disorders were more likely to have an anxiety or substance abuse disorder compared than gay and bisexual men without eating disorders, while lesbian and bisexual women with eating disorders were more likely to have a mood disorder compared to lesbian and bisexual women without an eating disorder."
While there's no single cause for eating disorders among the LGBT populations, trends are evident, which is helpful in assessing treatment and recovery methods.
Eating disorder treatment for LGBTQ folks
Eating disorders are often stigmatized as being a white, wealthy woman or girl's disease, for which she is treated at a resort-like recovery center with a tuition rivaling that of an Ivy League school. The treatment and recovery process is unglamorous and challenging, even more so for LGBT patients who must grapple with their identities in order to recover.
"A significant part of recovery from an eating disorder is better understanding one's identity and finding ways to accept all parts of one's self," Petee said. She continued:
"If someone is struggling with their gender or sexuality, eating disorder treatment may be a catalyst for better understanding and coming to terms with that part of themselves. For those who feel uncomfortable in their skin because of gender dysphoria, treatment from an eating disorder will need to pay close attention to the gender aspect of accepting their body. Non cis-gendered people may feel particularly distressed if their body changes in the recovery process and their appearance becomes even more disconnected from their internal experience of themselves."
For this reason, treatment should be sensitive to the trauma and grief experienced by LGBTQ people.
In Megan's case, it took her over three years to recover. "Simply put, it was exhausting," she said. "But treatment saved my life. It wasn't an easy fix. It's not like I could just get a medication to make it all better. It was agonizing at times. I was forced to face my biggest fears again and again."
Though Megan doesn't tie her LGBTQ identity directly to her eating disorder, she can see how aspects of her experiences as an LGBTQ person exacerbated her symptoms. "One instance in particular [was] when my grandmother told me, during a family meal, that I needed to 'stop being gay' in front of my brother because 'it was killing him,'" she said. "Learning at dinner that certain members of your family can't stand to be around you definitely doesn't help make food feel very safe."
Being able to fully accept her genderqueer identity helped Megan with her recovery. "I've learned to stand up for myself and my values," she said. "I've been able to set boundaries with my family and share with them what kinds of conversations are and aren't acceptable. That has helped a lot, because we can go into an interaction — a holiday, for example — and everyone's expectations are known. My family knows that if my brother treats me poorly, I will remove myself from the situation."
Though she's been in recovery for a while, there are some physical effects of Megan's eating disorder that will never ever go away. For instance, Megan recently had he biannual bone density test, which showed that her bones aren't as healthy as they should be for someone her age. Megan also has digestive issues as a result of her disorder.
And even though she is happily recovered, remnants of the disease still persist in her mind. "I still struggle sometimes with thoughts that tell me not to eat, or to eat less, but I'm able to allow those thoughts to be there while still doing what I need to do to keep myself healthy... Recovery from an eating disorder is not easy, but it is absolutely worth it."
For LGBTQ folks with an eating disorder, receiving LGBTQ-affirming treatment is crucial. "It's OK to need help, and it's OK to ask for it," Megan said of the recovery process. "My parents have been supportive of me and my LGBTQ identity from the beginning. I'm very fortunate. Other members of my family have tried to put their opinions on me with everything from 'it's just a phase' to 'you're going to hell.' For the most part, I've been able to shrug that off. It helps that I live in an area with a very active and supportive LGBTQ community."
For LGBTQ people whose families do not support their identities, a strong support system may be unique or even more challenging to find.
"[LGBTQ patients] may need to rely more on extended family or friends, or may need help connecting to others in general," Petee said. "Treatment providers should assume members of the LGBTQ community are wary to make close connections with others until they are more familiar with someone and know that they can be trusted not to hurt or reject them."
When it comes to treatment, treating the disease as soon as possible is, of course, encouraged. "Asking for help is sometimes hard, but eating disorders will only get worse without proper treatment," Monroe said. "The emotional and physical damage can be severe and the sooner one seeks help, the better."
While talking to a friend or loved one is important for support, "immediately seeking professional treatment should be the first step," Monroe said. "The longer an eating disorder goes undiagnosed, the more difficult it becomes for the body and the mind to recover," Monroe said. "A professional can provide an accurate diagnosis, and also screen for medical problems that may be associated with the eating disorder."
A person with an eating disorder may also have additional mental health issues, like depression or anxiety, and medical professionals can assess and help treat all of this. Eating disorder treatments ranges on a case-by-case basis, but can include therapy, residential treatment and nutritional counseling.
How can we fix the prevalence of LGBT eating disorders?
The NEDA reported that "a sense of connectedness to the gay community was related to fewer current eating disorders, which suggests that feeling connected to the gay community may have a protective effect against eating disorders." But for young people without access to accepting LGBT communities, achieving this connectedness can be a challenge. Because of that, it's up to adults, families and teachers to create these spaces.
"LGBTQ youth need better education and support in schools from an early age, ideally helping people recognize, process and accept themselves at a younger age to prevent some of the internal pain and conflict that can perpetuate eating disorders," Petee said. "Studies show that connectedness to the gay community is an important preventative factor in eating disorder development."
Petee recommends schools sponsoring groups like the Gay-Straight Alliance and incorporating material on sexuality and gender minorities into regular curriculums. "Continuing to confront homophobia and transphobia will do a lot to improve the well-being of this community, including from an eating disorder perspective."
While there is no sure way to prevent an eating disorder in any person, there are certainly steps adults and community members can take to help those vulnerable to developing one. "It is vital to start talking to [young kids] about their emotions and how to handle uncomfortable ones and mirroring self-acceptance with your own body," Monroe said. "One can work to prevent eating disorders by educating themselves, practicing self-love and communicating with others.
"It's important to be educated on eating disorders and the dangers behind them. Feelings of lack of control, worthlessness, shame, perfectionism and other self-esteem issues are at the heart of harmful behaviors."
And for those who believe they're at risk of developing an eating disorder, Monroe said it is "detrimental that you address these emotions and have a plethora of healthy behaviors that help to combat them, like yoga and meditation." She also notes it's important to not categorize foods as "bad" foods versus "good" goods. "Eating a balanced, nutritional diet and eating certain foods in moderation is important to keep in mind," Monroe said.
At the very essence of the prevalence of eating disorders are societal expectations and as a society, no matter who we are or where we come from, we can work to create and promote a better world in which self harm is not a go-to for so many.
"Helping to raise awareness and voicing concerns against stereotypes and being an advocate of inclusion and acceptance within the community are simple ways to help fight back against judgmental standards set by society," Monroe said. "Spreading kindness and friendship, especially to anyone who you suspect might need it most, helps to break labels. To promote openness in your home, talk to your kids about accepting people as they are no matter what their race or sexual orientation is as important as other family values."
As an eating disorder survivor, Megan also endorses "encourag[ing] people to be themselves," when it comes to supporting and preventing eating disorders. "It's not easy for anyone to be comfortable in their own skin, but it's particularly challenging for LGBTQ people who are constantly receiving messages that we're not good enough or that we're wrong for existing," she said. "My treatment team and support system empowered me to be who I am, and that has made a huge difference in my recovery process. I don't have to hide anymore."