How Cerebral Palsy Plays a Role in My Battle With an Eating Disorder

A few years ago, I developed an eating disorder after years and years of poor body image and frustration due to my cerebral palsy (CP). Yesterday, in an attempt to build trust with my therapist as we really started to dig deep into discussing my body image, I asked him if he’s treated other clients with eating disorders. I wasn’t surprised when he said “Yes.” But when I asked if he’s treated other clients with eating disorders that have disabilities, I wasn’t all that surprised either when he said, “No.”

My therapist said that’s what makes my case so complex because so much of my eating disorder can be traced back to my CP. He also mentioned he’s learned there’s not very much research out there about people with disabilities who also develop an eating disorder. I think that needs to change now.

My CP plays a huge role in my eating disorder and keeping me stuck. It feels like fighting for recovery means I have to accept and be OK with my CP and I’m not there yet. My eating disorder gave me control over a body I didn’t always feel in control of. It allowed me to influence what my body looked like when, as my mom pointed out years ago, my legs looked like they came from two different people. I thought maybe if I lost enough weight, I’d be able to get them to “match.” Spoiler alert: It didn’t work. I felt restricting was a way to punish my body for not working right, but that only made things worse.

Growing up with CP, all the doctor visits and medical procedures almost made me feel like a lab rat. Doctors and interns would do their exams assessing range of motion in my legs, but my eating disorder allowed me to reclaim my body as my own. I think one of the most detrimental comments I had from a doctor was, “Whatever you do, don’t get fat.” Since they’re the doctor, sometimes what they say feels like the word of God. That tape plays over and over in my head every day.

My eating disorder changed my experience of pain. Instead of pain from all the spasticity, I felt pain elsewhere when my body wasn’t given enough fuel to repair itself and started to break down.

It’s hard for me to learn to love and accept this body the way it is when my whole life I’ve been told it isn’t good enough. Little kids don’t understand why all the medical procedures have to happen. So often, the message kids get boils down to, “My body isn’t good enough, so I’m not good enough.” If my body were good enough as a kid, why would it need to be “fixed?” Of course now as an adult, I can see why I’ve had all the surgeries, casts and physical therapy. But inside of me, there is still a 5 year old who doesn’t know how to accept this as good enough.

When everyone else taught me that part or all of my body was unacceptable and needed to be fixed, how am I supposed to learn to accept or tolerate this body? Maybe it would be different and easier to accept and move past the eating disorder if my legs looked the same, or if I didn’t have all the medical interventions to “fix” me. Maybe it would be different if I didn’t limp every time I walk, even when I think I’m walking fine. It’s hard to look confident when you’re constantly scared you’re going to trip and make a fool of yourself.

I don’t know how to tolerate this body because for so many years, we were trying to change it and make it “better.” It’s not “better” enough, yet we’ve stopped trying any medical procedures because now, there is no “better.” It’s hard to get out of the “bettering” mindset. It’s why I still want to work out all the time. When I work out (and restrict), I feel like I am “bettering” my body the way society taught me. When I work out, I feel more comfortable in my body and I don’t think I’m ever going to be able to stop trying to “better” my body until the CP goes away (which it won’t).

It’s like the more I listen to the eating disorder, the “less” CP I have — or at least it feels like it affects me less when I work out all the time. I’d rather work out more and feel the effects of CP less. I guess you could say the eating disorder is a last chance to try to treat the CP and that’s so hard to try to give up. That’s something 5 year old me (and me now) doesn’t want to have to deal with — that this is it.

I hope one day I’ll get to the point where I can accept my body for what it is, or at least tolerate it without feeling the need to change it by engaging in eating disorder behaviors. For now, I know I need to stick to my meal plan, work hard and keep moving forward one baby step, one meal or snack, at a time.