Anorexia, cerebral palsy and me: eating disorders and physical disabilities
I’ve written this blog with the intention of shining a light on what it’s like living with an eating disorder and a physical disability. From my own research, I know that very little has been written on this subject, and this, I think, is something that needs to change. In sharing my experience, my main hope is that others like me will realise that they are not alone in their struggles, and perhaps most importantly, that they are just as deserving of treatment as anyone else - specifically, a treatment that is tailored to meet their individual needs, rather than that which is based on a one-size-fits-all model.
I was diagnosed with cerebral palsy at the age of two, a congenital physical disability that affects roughly one in every 400 people in the UK, and results in problems with movement, coordination, balance, muscle strength, flexibility and tone.
The severity and symptoms vary greatly from person to person, but for me, the condition affects my lower limbs and the right-hand side of my body, causing muscle tension, weakness, spasms and impacting my balance, coordination, muscle tension and overall mobility.
As a child and early teen, I had countless hospital appointments and surgeries, all intended to reduce my muscle stiffness and tension and to improve my quality of life. Although each of these were necessary and helpful in their own way, they had one huge downfall; something that still has an effect on me to this day. With every hospital appointment and procedure, I gradually came to understand that my body was somehow ‘wrong’ and needed to be fixed and corrected. Language played a huge part in this, as there were ongoing conversations about walking ‘properly’, being, and doing things ‘just like everyone else’, and over time, all of this began to have a huge impact on my self-worth. I felt as though I, and my body, were failing at life.
As you might imagine, school was a difficult time for me. I desperately wanted to be like my peers, but as the years went by, it became ever clearer to me that my body was letting me down, and stopping me from doing the things I wanted to do. As a child, I didn’t understand why I was different, I just grew frustrated with my situation, and resented my body more and more. It was not a gift, and not perhaps a curse, but certainly a hindrance; something that got in the way.
Having cerebral palsy has meant that I’ve always had a difficult relationship with my body, but it wasn’t until my late teens that this started to have an impact on what I ate. I couldn’t control my body. In many ways, it didn’t even feel like my own, since I was forever being prodded and poked, analysed and tested. But I could control my food, and in doing so, I could influence how much - or how little - space I took up in the world. Slowly but surely, restriction and starvation became the way I made sense of things and took charge of my place in a world where I didn’t ever really feel like I belonged.
At first, losing weight was an overwhelmingly positive experience. People were commenting and complimenting me on my smaller body, and all of a sudden, I was met with acceptance and admiration instead of questioning, disdain, or dismay. No longer a problem or a point of difference, my body had become something that other people wanted. It was a whole new experience for me, and in the early days, I thrived off it.
But it wasn’t long before my weight loss began to get out of control. Spurred on by the desire for acceptance, I took things too far, and eventually, realised I couldn’t stop. The sense of control I had felt when anorexia first took hold was suddenly gone, but I was powerless. I needed help, and I needed it fast.
Throughout my 13-year history of anorexia, I’ve always struggled with compulsive exercise, and if you’ve experienced this, you’ll know just how difficult it can be to navigate. Daily physiotherapy has been a part of my life since the age of two, but in the throes of anorexia, I pushed my exercise regime - and my body - to the absolute limit. By the time I was admitted to hospital, I barely had the energy to walk more than a few steps, but even then, my exercise compulsions were as strong as ever.
Going into inpatient treatment for my eating disorder was one of the hardest experiences of my life, made all the more difficult by the fact that most treatment facilities in the UK seem to be based on a one-size-fits-all model. While in hospital, I was forced to go cold turkey and cut exercise out of my routine completely. For many people, this approach may well be effective, particularly in terms of breaking habits and rewiring neural pathways, but for me, all it did was make things worse.
Rationally, I knew I had to cut down my exercise, but as someone with cerebral palsy, it’s simply not practical or healthy for me to go without physiotherapy altogether. After spending more than one day completely sedentary, my muscles become so stiff and tense that eventually, I struggle to move around at all, and before I know it, I find myself caught in a vicious cycle. The harder movement becomes, the more I resent my body, and the more I resent my body, the louder the anorexic voice becomes, and the more difficult I find it to eat.
I know there’s no ‘quick fix’ solution to any of this, but what I have learned is the importance of communication. During my second hospital admission for anorexia, I felt much more able to speak up about my needs, and thankfully, was allowed to incorporate some gentle physiotherapy into my daily routine on the ward. As well as keeping me more mobile, this did wonders for my relationship with my body, and gradually, I began to see it as something that deserved not punishment, but care, attention, and ultimately, compassion.
If I could offer one piece of advice to anyone out there who may be in a similar situation, it would be this: don’t be afraid to speak up about your needs. Just because they may be different, or ‘more’ than those of other people, this doesn’t mean they can’t be met. You are just as deserving of help and support as anyone else.
Sophia is a copywriter and author based in Sussex. You can follow her recovery journey on Instagram @pinksparklybeads. Her new book, ‘The Weapon of Choice: Despatches from the front line of an adult eating disorder unit’ is due to be released on 8th December 2022 and will be available from all good booksellers. You can pre-order it here.