Written by Zee Zelinski (They/Them)
Chances are, you know what a stereotypical disabled person looks like. You also know what a stereotypical person with an eating disorder looks like. I bet you didn’t know what a disabled person with an eating disorder looks like.
It’s okay. Neither did any of my doctors.
It’s easy to miss.
If you ever see me in public, at first glance, you might only notice my wheelchair. Or my brightly coloured hair. Maybe you see my mask. You might notice the way I use my right arm to assist my left to push my glasses back into place on my face. Chances are, you’ll see my disability before you see anything else.
I had a team of seasoned doctors scrutinizing me, and all they could point out was a severely underweight female-presenting person who refused to comply with treatment.
I was 11 when I first started to struggle with my eating disorder. It was loud and quiet, disguising itself as healthy eating and exercise. The doctors at my neuromuscular clinic praised my dietary choices and chalked up my low weight to a fast metabolism. They focused on my physical health and ignored my mental health. As a result, my eating disorder went undetected for years. It was overlooked and incorrectly treated as malnourishment, contingent on my muscular dystrophy, despite “underweight” not being listed as a symptom. Concern finally bloomed around my 17th birthday when one of my doctors noticed my weight had hardly budged. They set me up with a dietician and nutritionist twice a month for six months to try and remedy the issue. It didn’t work. I got worse. And yet, my doctors still insisted everything was fine.
They told me I didn’t have an eating disorder; I just had low muscle mass because of the muscular dystrophy. They told me I didn’t have an eating disorder and I believed them until I couldn’t.
At my lowest, I knew I was sick. I knew my behaviours, exacerbated by the bimonthly nutritionist visits and the “exercises” I was tasked with, weren’t healthy. I knew healthy brains didn’t obsess over food intake and numbers. I wanted to scream at my doctors to help me, to see how quickly I was disappearing before them. The problem was they couldn’t tell me where one sickness ended and the other began. I had a team of seasoned doctors scrutinizing me, and all they could point out was a severely underweight female-presenting person who refused to comply with treatment.
If anything, my disability contributed to my eating disorder and I wish it had been recognized earlier. Society taught me my body was undesirable.
It wasn’t until I started working with a psychiatrist outside of my care network years later that I was able to name my eating disorder and receive a diagnosis: anorexia nervosa, restricting type. I still have the insurance claim from that session. I needed proof it was real. It took that provider one session to reconcile years of mistreatment.
The doctors at the neuromuscular clinic I attended weren’t trained to recognize signs of disordered eating in the kids they were treating. They didn’t ask. I didn’t tell. As far as anyone was concerned, people like me didn’t get sick like that. They made me believe disabled people didn’t get eating disorders.
But we do. If anything, my disability contributed to my eating disorder and I wish it had been recognized earlier. Society taught me my body was undesirable. My doctors refused to see what was right in front of their faces. I’d have had so much more compassion for myself back then if I had known how I was hurting. Compassion did eventually come, as did healing. I’m in a better spot now but my body will always remember what it endured. How could it not?
Disabled people get – have – and recover from – eating disorders.