“But you Don’t Look Like you Have an Eating Disorder!”

When you first hear the phrase “eating disorder,” what comes to mind? For most people, this would be anorexia – a disorder in which one starves themselves over a prolonged period of time. Now, who comes to mind? In media, people with eating disorders are usually portrayed as thin, White, cishet women – perpetuating a bias that those who do not fit this description are not affected by eating disorders. Every eating disorder deserves recognition and respect, as does every person who has one. A lack of representation can significantly hinder recovery, and it necessitates discussion.  

To begin, it is important to understand the different known diagnoses of eating disorders. With today’s research, we typically refer to the following:

Anorexia Nervosa: a condition in which one chronically deprives themselves of food.

While those who suffer from anorexia tend to be medically underweight, not all who have it are. That does not make their condition or symptoms less significant or dangerous. Rapid/significant weight loss can prove deadly at any weight or body type. 

When somebody who is not medically underweight is diagnosed with anorexia, it is often referred to as “atypical anorexia” and classified as OSFED (Other Specified Feeding and Eating Disorders). I believe this can sometimes connote the disorder being “invalid” or not as serious, but be aware that it is just as dangerous and deserving of treatment. 

Bulimia Nervosa: a condition in which one is compelled to consume a large volume of food in a short amount of time – binge – and then purge the food from their body in some form. This is typically through self-induced vomiting or rigorous exercise but is also performed through other methods (I would prefer not to list many of these here). Simply be aware that if the intention is to negate the effects of consuming food, it is a purging behavior. 

Variations of this, often referred to as Purging Disorder or “atypical bulimia” and classified under OSFED, can involve purging without bingeing. Bingeing without purging is typically classified under Binge Eating Disorder, or BED. 

Binge Eating Disorder (BED): a condition in which one is compelled to consume an excessive amount of food in a short amount of time, usually without purging. 

ARFID (Avoidant/Restrictive Food Intake Disorder): a condition in which one heavily restricts the amount or type of food they eat, leading to severe malnourishment.

This typically is not the result of body image issues, as many eating disorders are. This can be caused by a variety of factors, such as phobias or sensory issues. It is typically developed early in childhood and persists into adulthood. 

Rumination Disorder: a condition in which one regurgitates, re-chews, and swallows food repeatedly. 

OSFED (Other Specified Feeding or Eating Disorder): an umbrella team that characterizes a variety of conditions that do not strictly fit the criteria for any one diagnosis, but are still health-threatening and deserve treatment. Formerly known as EDNOS (Eating Disorder Not Otherwise Specified). 

Disorders such as anorexia and bulimia, while deserving respect, are disproportionately represented and even sensationalized. You can see this for yourself with a quick Google Search – compare the results you get for “Movies/books/shows/stories about anorexia/bulimia” with the results you get for “Movies/books/shows/stories about ARFID/BED/OSFED”. Which query has an abundance of results, and which is nearly void? According to the National Eating Disorders Association (NEDA), people diagnosed with OSFED have been denied medical insurance coverage because of the disorder being seen as “less serious”. However, a third of eating disorder-related deaths have been attributed to OSFED. According to Healthline, BED is more common than breast cancer, and it affects three times as many people as bulimia or anorexia. But how often do you hear it come up in discussions of disordered eating? For me, at least, not frequently. 

Another issue that appears to be prevalent is a lack of representation among people. Anybody, regardless of body type, can suffer from an eating disorder. You do not have to be thin or medically underweight to have an eating disorder. Genetics, body composition, and the nature of disordered eating can all affect how somebody can lose or gain weight. To say that somebody must be skinny to have a valid experience with disordered eating is an egregious generalization that perpetuates stigma and discrimination. A person with an eating disorder may gain weight, rapidly fluctuate between weights, or not have any noticeable change at all. When I was in the throes of my eating disorder, for example, I would lose and gain roughly the same ten pounds. You could not tell, just by looking at me, that I had an eating disorder (nor should you try to determine that about someone based on appearance, but I digress). I never received a formal diagnosis. That does not mean that I did not have one and that I did not deserve help. 

In addition, when eating disorders are portrayed in popular media, the person suffering from the disorder often fits a specific description: a young, White, cishet, middle-upper-class female. Take another look at that Google search from earlier, and sift through some of the main characters. There appears to be a prevalent bias, both in media and in the healthcare industry, that BIPOC, LGBTQ+ people, and men are less affected by eating disorders and less deserving of treatment. This is blatantly false; according to Within, a virtual eating disorder care program, Black and Hispanic adolescents are much more likely to suffer from bulimia than White adolescents, BIPOC experience higher rates of BED, and Asian American college students report higher rates of caloric restriction. However, statistics from the National Association of Anorexia Nervosa and Associated Disorders (ANAD) show that BIPOC people are half as likely to be diagnosed with eating disorders than white people, and they are less likely to receive adequate care. 

Marginalized groups often face significant financial and social barriers that prevent them from receiving necessary medical care as a result of systemic discrimination. According to ANAD, LGBTQ+ youth are about three times as likely to suffer from an eating disorder than heterosexual youth, and 32% of transgender people report engaging in disordered eating to alleviate gender dysphoria (such as by altering the shape or functions of their bodies). Much of this can be attributed to a lack of accessibility to gender-affirming care and experiences of prejudice from healthcare providers. According to the NEDA, a 2022 survey found that 1 in 5 LGBTQ+ adults had avoided medical care due to discrimination, and 1 in 3 had experienced mistreatment by healthcare providers. In that same year, LGBTQ+ youth diagnosed with eating disorders were about four times as likely to commit suicide. Recent executive orders, such as Order 14168, have also increased the difficulty of acquiring care for LGBTQ+ individuals, especially those in the transgender community. 

Also worth noting is that due to eating disorders being considered a “girl problem,” men who struggle with them often cannot get the help they need, or even admit that they need it. According to the NEDA, men represent about a third of people with eating disorders. Despite this, according to ANAD, women are five times more likely to be diagnosed. Due to mental health struggles being stigmatized as “weak” or “effeminate”, men often do not seek the care that they need until their condition becomes dangerous. Eating disorders being regarded as a “girl problem” is also harmful to women, in that it patronizes both us and the illness; it connotes the disorder as trivial and women as hysterical. The assumption that men are not affected by eating disorders is detrimental to all involved. 

What cannot be expressed with the voice will fester in the body and mind, until the body and mind speaks for us. And when it speaks, it screams. It screams the life out of us. 

According to the Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED), 9% of the U.S. population (28 million people) will have an eating disorder in their lifetime, and 10,200 deaths per year are attributed to eating disorders. Why is it that we cannot set aside our preconceived notions of people, even when it is to save their lives? Why is it that we cannot simply respect and understand such illnesses, rather than sensationalize or ignore them? Why is it that we cannot simply respect and understand each other?

I was not aware that I had an eating disorder until I’d begun my first attempt at recovery. I did not know that OSFED existed, or that if you did not fit strictly into bulimic or anorexic, you could still have an eating disorder. I’d also internalized the message that eating disorders are “for girls” and that, since I was genderqueer (I didn’t know it at the time, but distinctly felt “different” and presented masculinely), I could not be suffering to the same degree that other women could. The nature of my disorder resulted in me losing and gaining the same amount of weight repeatedly, which both frustrated me and further removed me from the idea that my experience was “valid”. This culminated into me fighting the entirety of it by myself, never telling anyone until well after the worst of it was over, and cursing myself with a legacy of urges and fears that will haunt me for a very long time. Seeing yourself, and understanding that your pain is valid, that you deserve help, is necessary for recovery. Had I been more educated and better represented, I believe a lot of what I went through could have been avoided. I could have sought out help without feeling like some freak or circus animal, a creature playing dress-up. 

I am left to wonder just how many people are suffering in silence, staggering slowly toward an early grave, because somebody somewhere told them: “But you don’t look like you’d have an eating disorder!”