It's Time We Acknowledge Eating Disorders in the Disabled Community
I was 18 years old when I was diagnosed with an eating disorder. This was after years of struggling in ways both visible and invisible to others. My story is not unique, but being that I am disabled, it is one that too often goes untold.
I was born with a neuromuscular condition, cerebral palsy, which affects all of my limbs and my speech. Personal care attendants help me complete basic tasks like showering and dressing. I will never be independent in the traditional sense. This has caused me immense shame, but it is also integral to my identity.
A physical therapist encouraged me to adopt a low-carb diet to “control” my weight when I was in second grade. She said if I gained more weight, I would lose mobility, becoming a burden to everyone around me. It was not until I was in seventh grade and struggling with standard adolescent awkwardness and body insecurities that I began to restrict my food intake and exercise to control my body size, but every prior comment from a healthcare provider or another adult contributed to my intense fear of gaining weight and body hatred. Nothing mattered to me more than seeing a lower number on the scale — not friendships, not grades, not my life. My eating disorder became an escape from my disability and the discomfort that came with it. If I focused on restricting food and overworking my body, I could forget that I felt I did not belong anywhere or that the first thing people noticed about me was my speech impairment or my uneven gait.
Two years into my eating disorder, I began bingeing and purging. By the time I started college, I had experienced multiple long bouts of anorexia and bulimia on rotation. I was trapped in a revolving door of symptoms that I could never escape akin to the inaccessibility I faced on a daily basis. The shame I felt towards my bulimic behaviors was far greater than from anorexia, but all of my behaviors served to protect me from a reality I could not face.
It took four years for me to be diagnosed at my college counseling center. This lapse in time between the onset of symptoms and receiving a diagnosis allowed the disorder to firmly take root. I memorized calorie counts of foods I did not even like or intend to eat, I exercised through injury, and I chased away anyone who would interfere. To this day, I still struggle with eating disorder thoughts and behaviors. I see a dietitian and a therapist regularly to manage my symptoms.
Often, I wonder if I would be in a different place with recovery if I were born able-bodied. Given the lack of awareness around eating disorders in the disabled community, my illness likely flew under the radar.
Many campaigns have finally started to acknowledge that eating disorders do not discriminate. These campaigns highlight that eating disorders can affect people of all gender identities, sexual orientations, body types, ages, socioeconomic, racial, and ethnic backgrounds. Given the harmful misconception that eating disorders only affect young, thin white women from upper-to-middle class backgrounds, it is important that we highlight that these illnesses can affect anyone. However, these campaigns fail to name disability.
When awareness campaigns do include disability, they often use words like “chronic illness” or “neurodivergence” instead of disability. Chronic illness and neurodivergence both exist under the umbrella of disability, but neither convey the breadth of disability. There are disabilities that do not fit in either category, which means many people are functionally excluded from these conversations. If we want to help all disabled people struggling with eating disorders, we need to acknowledge that different kinds of disabilities exist and affect people differently.
Some campaigns that include disability reinforce stereotypes. For instance, a campaign that discusses the intersection between autism and eating disorders may only mention ARFID, or a campaign including people with intellectual and developmental disabilities may only talk about pica and binge eating disorder. While these eating disorders may be more prevalent in certain populations, it is important to remember that anyone can develop any eating disorder. Perpetuating these stereotypes can exclude people with other experiences.
Body image is more complicated for disabled people as a result of ableist body standards, needing support for activities of daily living, and the medicalization of disabled bodies.
Beauty standards position able-bodiedness and symmetry as superior to bodies that deviate from the standard. If someone’s body looks different from spastic muscles, curved limbs, or other apparent differences, they are deemed deformed and broken. Those who need support to perform tasks of daily living may feel that their body is not their own. Attendants can make body comments, and needing help with intimate tasks can make someone feel like they have no agency. Not only is there pressure to stay a certain size in order to make the lives of those around us easier, but when we have no autonomy, we may focus on what we can control — food and our bodies.
Similarly, diet culture can look different in the disabled community. It often disguises itself as promoting health and practicality. Instead of framing food restriction as a way to achieve thinness, it is framed as essential for keeping one’s weight down to make transfers and other tasks easier. Rather than exercising to achieve or maintain a certain physique, disabled people are encouraged to “move it or lose it,” meaning if they do not exercise regularly, they will lose mobility. On the surface, this seems practical and even healthy. However, this can lead people to feeling shame around their limitations and drive them toward obsessive behaviors. A study published in Qualitative Research in Sport found that people with multiple sclerosis blamed themselves for relapse, believing they had not moved enough. One participant even framed exercise as a way to exert “control” over their disability, a sentiment consistent with a disordered relationship with movement.
The “move it or lose it” mindset and manipulation of my weight for practical reasons are issues that have never been addressed in my treatment, in part due to lack of awareness and because I have never been able to articulate them to my treatment team without fearing they will be brushed off as excuses to not commit to recovery.
These unique concerns intersect with standard body image issues, co-morbid psychiatric diagnoses, trauma, genetic predispositions, and other risk factors.
I engaged in disordered behaviors both as a way to attain a certain body type and deal with being disabled in a deeply ableist society. I cannot tease my cerebral palsy from my eating disorder and body dysmorphia because they are inherently linked.
Lack of awareness affects more than individuals. It also affects the physical locale of treatment. Many treatment centers still are not accessible both physically and culturally. Some have stairs and narrow doorways, and most are not informed about disability and how it complicates eating disorders. Notably, residential centers are inaccessible to people who require personal care attendants. This needs to change.
Every time I share my story, I find others who can relate. This reminds me why I advocate. I am not alone even if I feel like it, and I do not want anyone else to feel alone.
