What happens to those suffering from eating disorders and disabilities? And why don’t we hear more about this topic?
I received my diagnosis of Cerebral Palsy (CP) at the age of 2. Since then, my life’s been punctuated by hospital appointments, medical treatments and surgeries. All aimed at improving my range of movement and reducing pain.
You see, I was born with a mild form of CP. A physical disability that affects roughly 1 in every 400 people in the UK. As a condition, it can manifest very differently from person to person in regard to symptoms experienced and the degree of suffering. For me personally, CP affects my lower limbs and the right hand side of my body. It causes muscle spasms, stiffness and tension, problems with balance, flexibility and general movement.
At almost every appointment, medical professionals used correctional language to describe my situation. Words like “fixing”, “correcting”, walking or moving “properly” and being “normal”. Or “just like everybody else”. Over time, this took a toll. The older I got, the more I came to understand that my body – and the way it moved – was somehow ‘wrong.’ I’d always known I was different from the people around me. But as years went by, I began to internalize this sense of difference. And to interpret it as something bad. Something that needed to be changed and rectified.
Instead of feeling gratitude towards my body for the pain it suffered, and all the things it still allowed me to do, I grew to resent it. Rather than a gift or a blessing, I saw it as a hindrance. Something that had – and continued to – let me down for not moving or looking the way the world told me it should.
Whose body is this?
Anyone whose ever had a lot of medical appointments knows that after a while, you begin to feel as though you’re living under constant scrutiny. Forever being prodded, poked, analysed and tested. This took a toll, too. Although I understood that the only real goal was to improve my quality of life, I started to become quite detached from my body. Subject to regular procedures, analysis and measurement, it seemed to belong more to the medical professionals than it did to me. Or at least that was how it felt. Mine, but at the same time not really mine at all. It came to be a source of great anxiety and stress. And something I felt I didn’t have a lot of control over.
Eating Disorders and Disabilities
This, I think, is where – and why – my eating disorder first began to take hold. Through restriction, I could go some way towards controlling my body. I could take ownership of it. Claim it back as mine by changing the way it looked. The way it moved through the world. And perhaps most significantly, the space it took up.
At university, during my late teens and early twenties, I leant on restriction more and more. As a way of coping with my body and everything around me. Gradually, it became the way I made sense of things. Of my experience living in a world that felt increasingly chaotic. And in which, most of the time, I didn’t really feel I belonged.
Inevitably, with restriction came weight loss. At first this had nothing but positive consequences. In myself, I felt lighter, less anxious, and more at ease. It wasn’t long before people began complimenting me. Rather than a point of difference, or something that needed “fixing” and “correcting, my body had taken on a whole new identity. It had become desirable. Enviable even. Allowing me access to areas of life that had previously been off limits.
The struggle is real
I’ve suffered with Anorexia Nervosa for almost 12 years now. And in this time, my presentation has shifted slightly. But I’ve always struggled with OCD-ED behaviors in one form or another. Including low level movement compulsions and exercise.
Physiotherapy has been part of my daily routine for as long as I can remember. But in the grips of Anorexia, this took a bit of a deadly turn. By the end of my last relapse, movement and compulsive exercise had completely taken over my life. Every moment of my day was consumed by step counts, rituals and workouts.
At the start of 2021, I reached a crisis point and went into inpatient treatment for my eating disorder. The nature of an inpatient unit meant that I was forced to cut exercise out of my routine completely. No workouts, no walks, no physiotherapy for over five months.
Eating Disorders and Disabilities -everyone is NOT the same
I imagine that for many people, this can be effective. Particularly in terms of breaking habits, addressing old patterns and rewiring neural pathways. But as someone with a physical disability, I’ve experienced first-hand that this not the right approach. It will never be as simple as stopping exercise altogether, even if only for a matter of months.
After a day or two without physio, my muscles start to become increasingly stiff and tense. I also suffer from spasms which can be very painful. Whenever I’m tired, anxious or stressed, this gets worse. Making it difficult to move around and go about my day. Although I do take medication to help, there comes a point where even that doesn’t quite cut it.
In this sense, it all becomes a bit of a vicious cycle. The worse things get, the more anxious and tense I feel. Then the more I resent my body for letting me down, and the more I find myself being drawn back to my eating disorder. And all of its demands.
One size does not fit all
In my experience to date, both inpatient and outpatient eating disorder treatment are based on a one-size-fits-all model. I understand in many ways, this may have to be the case. (If only because it’s simply not practical or feasible to tailor things specifically to the needs of each and every patient). But I also know how beneficial a more holistic, person-centered approach can be. Especially in the sense of long term, long-lasting recovery.
Even though I gave details about my disability before my admission, the treatment I received felt – on the whole – quite generic. Some adjustments and provisions were made here and there, after multiple requests.
Overall, I was left feeling as though I was a problem that no one knew how to solve. And in terms of a person’s well being and recovery, that’s a pretty uncomfortable position to be in.
Eating Disorders and Disabilities
Throughout my treatment, I’ve taken it upon myself to do some research into the relationship between eating disorders and disabilities. I’ve been surprised to find there’s really not very much out there. If I can, this is something I would very much like to change. I’m aware there’s no easy solution to any of this. But I also know that communication and conversations are so important.
It’s only by speaking up, and giving people the opportunity to come together through shared experience, that things will start to change for the better.
When it comes to the future, I am hopeful.
During my recent inpatient admission, I started a blog about my recovery journey. I’ve been truly heartened by the impact this has had on some people within the recovery community.
If I could offer advice to anyone in a similar situation to myself – indeed, to anyone who may be struggling – it would be this:
- Don’t be afraid to ask for help.
- If you reach out for support and it’s not forthcoming, don’t be afraid to ask again. And again.
- Stand up for yourself, for your needs, your rights and your own recovery. Being proactive and self-supportive is one of the bravest and most powerful things you can do.
- Make lists. Write down what you struggle with, and all of the things you need to make your life better and easier, in terms of eating disorder recovery. This will be invaluable, not only for yourself, but for anyone else involved in your care.
- Remember that no matter how dark and hopeless it may feel at times, you are never alone. There is always, always hope.