Eating Disorders and Disability:
My Experience

Sophia Purcell

I’ve suffered with anorexia nervosa since my late teens, but wasn’t officially diagnosed until the summer of 2017, more than a decade into my eating disorder. I also have a mild form of Cerebral Palsy (CP), a congenital condition that affects movement, coordination, balance and muscle strength, flexibility and tone. 

 

At present, there’s not much research into the relationship between eating disorders and disabilities. As someone with first-hand experience of both, I want to do whatever I can to raise awareness, encourage others to seek support, and hopefully make treatment more inclusive and accessible.

Cerebral Palsy affects about 1 in every 400 people in the UK, and the severity and symptoms can vary greatly from person to person. For me, the condition impacts my lower limbs and right-hand side of my body, causing muscle tension, weakness, stiffness, spasms and problems with balance, posture and general movement.

My disability meant that I stood out from my peers, when all I really wanted was to fit in.

Since being diagnosed at the age of 2, hospital appointments, medical assessments and surgeries have been a regular part of my life. I’ve had a number of operations to lengthen the muscles in my legs, as well as things like hydrotherapy and physiotherapy, aimed at strengthening my muscles, improving flexibility and reducing pain. 

Growing up, my disability meant that I stood out from my peers, when all I really wanted was to fit in. As you might imagine, school was a challenging time. I desperately wanted to be like everyone else, but as the years passed, I  became more and more frustrated with myself and with my body. I didn’t understand why I was different. I just knew that, a lot of the time, my body stopped me from doing the things I wanted to do. It got in the way.

With every hospital appointment, physiotherapy session and procedure, I came to understand that my body was somehow ‘wrong’; that it failed to meet some universal standard; that it needed to be fixed and corrected. There were conversations about walking ‘properly’, being ‘the same as everyone else’, and over time, things took a toll.

I’ve had a difficult relationship with my body for almost as long as I can remember, but it wasn’t until my teens that this began to impact on food. I couldn’t control my body - in many ways, it didn’t even feel like it was my own - but I could control what I ate, and in doing so, I could also influence its shape, and how much - or how little - space it took up. Slowly but surely, restriction became the way I made sense of things in a world that felt increasingly chaotic, and in which I didn’t really feel like I belonged. 

In the early stages, losing weight was a positive experience. I felt lighter, more in control, and soon, people were complimenting me on my changed physical state. No longer a point of difference, or something that needed to be corrected or explained away, my body was suddenly enviable, desirable even. It became a form of currency, granting me entry into realms of life I’d never previously been allowed.

Throughout my illness, my presentation and behaviours have fluctuated slightly, but I have always struggled with OCD-ED compulsions, including both lower level movement and exercise. 

Physiotherapy has been a part of my routine for as long as I can remember, but in the depths of my eating disorder, my days revolved around workouts, step counts and rituals, until eventually, exercise and movement had completely taken over my life. Before being admitted to hospital for inpatient treatment, I had pushed my body to breaking point, and hardly had the energy to walk more than a few steps, but even then, the compulsion to exercise persisted.

In an inpatient unit, you are forced to go cold turkey; exercise in any form is totally forbidden. This includes walking, pacing, standing, fidgeting and even stretching. You could expect to be told off if you were found on your feet for anything longer than 20 seconds without good reason. 

Restriction became the way I made sense of things in a world that felt increasingly chaotic, and in which I didn’t really feel like I belonged.

For many people, this approach is probably effective. After all, the best way to break a habit is to cut it out of your life altogether. But for me, it was never that simple. Having Cerebral Palsy means that it is simply not practical - or healthy - to stop exercising completely. After a day or two without physio, my muscles tighten and become very tense and stiff, and I also suffer from painful spasms which make it harder for me to move around and get on with everyday activities. I take regular medication to help with the spasms, but when I am anxious, tired or stressed, my physical symptoms worsen, becoming much harder to manage. The worse things get, the more I resent my body for letting me down and the more impossible eating becomes; before I know it, I find myself caught in a bit of a vicious cycle. 

Despite disclosing my disability prior to my admission, I have often been left feeling like a problem that people don't know how to solve.

In my experience, both inpatient and outpatient eating disorder treatment is based on a one-size-fits-all model. Some allowances and modifications may be made here and there, but in general, things are pretty generic - especially when it comes to inpatient units. Despite disclosing my disability prior to my admission, and speaking up during my weekly ward round, I have often been left feeling like I’m a problem that people don’t know how to solve. And mental illness or no mental illness, that’s not a pleasant feeling to have. 

Although I know there’s no quick solution to any of this, what I do know is that communication is vital. At the start of my inpatient admission, I started a blog about my recovery journey, and recently wrote a post on the things I wish I’d known before starting treatment. Going into hospital for my eating disorder was one of the hardest experiences of my life, made all the more painful  - in both a physical and an emotional sense - due to a lack of education, insight and understanding.

If there are other people like me struggling with an eating disorder and a disability, I’d urge them to reach out for support sooner rather than later, and, as hard as it may be, try not to be discouraged by the pitfalls of a one-size-fits-all, over-stretched, under-funded system. If you’re struggling, you deserve treatment that’s suited to your needs, not the other way around. 

Sophia is a copywriter and journalist based in Brighton on the south coast of England. She has a mild form of cerebral palsy (CP) and has suffered with anorexia nervosa for almost 12 years. You can read more about her recovery journey on her blog

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