“I was the program’s first disabled patient (a fact that many therapists and previous program participants loved to tell me) and told stories that, although met with sympathetic smiles and nods, few understood.”
The phrase Eating Disorder (ED) is deeply ingrained in our society. A hot topic in the media, EDs affect 28.8 million Americans and (at least) 9% of the population worldwide. EDs also have a significant economic impact, costing the economy an estimated $64.7 billion annually.
Although the media has surrounded us with thin ideals of what an eating disorder looks like (a white middle-class woman), EDs disproportionally impact marginalized groups, including individuals with physical disabilities. “While there is little research into the co-occurrence of disability and eating disorders, that’s slowly changing. A study published by the U.S. National Library of Medicine and National Institute of Mental Health in 2000 showed that women with physical disabilities were more likely to develop eating disorders.” Despite this information from 22 years ago, I was unable to locate recent relevant studies that offer a fresh perspective.
I have Dwarfism and suffer from an Eating Disorder. I’m 23 and only 3’9″ tall. To some people, I am somewhat of a spectacle, especially, it seems, if they’ve never laid eyes on a little person. Comments, stares, and pointing come courtesy of inquisitive viewers. Close your eyes and try to fathom the stress of this situation. This happens every time I’m out and about, and is all I’ve ever known. You learn to “cope” and mute the outside world.
I believed if I could alter my appearance and become thin and visually palatable to the eyes of non-disabled individuals, I would be left alone. But this is impossible, you can’t run away from a disability that you were born with, and sometimes no matter how hard you try, integration is never 100% achievable.
Suffering a series of digressions, I would hide in my college apartment bedroom to avoid eating. My situation was dire enough that I passed out in the street and had to be carried home by my roommates. Afterward, lying in my bed, I did what any young individual would do; I went on TikTok to find answers. Greeted by my daily feed in the darkness of my room, with the glow from my screen, I began to notice a shift from my usual content to Eating Disorder videos.
I saw a variety of women speaking to me about their experiences with their ED. Showing off meals that they could finally muster the courage to eat, discussing how this disorder has altered their lives, and offering advice on recovery, these emaciated women had found a space to share their experiences. As I lay on my bed, scrolling, I concluded that I was healthy. These women had a Lily-Rose Depp appearance: sunken faces with an oddly glamorous undertone. I felt disconnected. I am a physically disabled woman. No one looked like me, ate like me, or could empathize with my life; therefore, I, unlike them, was healthy.
People with disabilities are often neglected in conversations surrounding representation and mental suffering, while the women I watched were celebrated and given a space to heal. I struggled to understand why these conversations weren’t involving individuals who looked like me.
Soon, my outpatient doctors reached the point where they could no longer help me. I needed more experienced ED professionals, so I entered treatment. In treatment, I centered my experiences around my Dwarfism. Each day in the program, I would sit at home and virtually discuss my feelings with the group for seven arduous hours.
I was the program’s first disabled patient (a fact that many therapists and previous program participants loved to tell me) and told stories that, although met with sympathetic smiles and nods, few understood. I would describe the pressure I faced from the opinions of strangers and how much stress I let that inflict upon me. I opened up about how I wasn’t close with other people with Dwarfism and was always surrounded by average-height people. I thought the only way I could be in control of all this, and be accepted, was by attempting to assimilate through my eating. Honestly, when I explained this, some people were stunned. But hey, these thoughts need to be spoken.
Now I’m doing better. I’m out of treatment but not completely healed. When I open up to friends and peers about my experience, I’m often met with positive reactions and soft smiles, but there are always some shocked individuals. Maybe it’s because I don’t fit the mold of what they expect someone to have an eating disorder to look like, or it’s just a result of them knowing me and being surprised by what I went through.
The fact that I was the first little person at my treatment facility wasn’t a surprise to me. When I researched information on the disabled community and eating disorders, I was astonished by the lack of information available online. An article or two was posted, and a few blogs were written about disabled individuals and eating disorders. Still, most of these were penned by non-disabled writers who wrote from observations and not personal experience. Facing my ED struggle alone has been the real challenge. I do, however, have lovely friends and family who I will be with until the end of time, but I still sometimes wonder, if I was born of average height, would things be easier? If I found other people who physically looked like me, would my experience be different? But you can’t dwell on the unknown, so here I am, a little person sharing my first-hand experience of an eating disorder.
