A Body That's Not My Own


I still remember the day I first became ill. Comparable only to a morbid anniversary I’d much rather forget; I was eleven years old, just begun Secondary School, and by all accounts, I’d had a perfectly normal day. My only complaint was the large bruise I’d acquired having clumsily tripped over in one of my classes. I was infatuated with Ballet and had countless dreams of growing up to become a dancer. I was perfectly fit and healthy and had never before suffered so much as a broken bone, or even a spot of hay fever.

Over the course of that day, my life changed completely. I began feeling unwell, and by the time my bedtime story was over, I had developed a high temperature and a sore throat. The next day, I opened my eyes, and though not yet known to me, I had a body that wasn't my own. I had begun a life of being permanently, chronically ill. It would be over a year before I was diagnosed with a controversial and untreatable condition: Myalgic Encephalomyelitis (M.E.)
       A typical young child growing up in the noughties, I’d kept a journal; daily thoughts locked away with a padlock which provided about as much privacy as The Emperor’s New Clothes. I found it years later, and remember discovering with film-worthy poignancy that after that day, I'd simply stopped writing. As for my dreams of becoming a ballerina: those pretty pink shoes haven’t adorned my feet in twelve years.

"We don’t talk about little girls and boys that grow up hating the bodies that betrayed them... unfortunately, chronic illness can be just that: a betrayal."


When we talk about chronic illness (that is, if we talk about it at all) we talk about facts and figures, symptoms, and crackpot ‘cures.’ What we don’t talk about is the inherent guilt, the discrimination, and depression. We don’t talk about crying on the bathroom floor, losing people close to us, or being ridiculed by health professionals. We certainly don’t talk about little girls and boys that grow up hating the bodies that betrayed them. Because unfortunately, chronic illness can be just that: a betrayal. It really can be as simple as waking up one day and being coerced into a life you didn’t choose. It can, and often does, mean giving up everything you enjoyed, and surrendering to the will of a body that used to be your friend.

I was brought up on fairytales. Magical worlds made up of princesses and frogs, heroes and villains, the good guys and the bad guys. It is a simple but definite categorisation, and one that transcends the whimsical tales in storybooks. We learn the evil, inexcusable nature of villains, and the familiar characters they embody. Within these carefully crafted, microcosmic worlds, we discover that the most efficient way to defeat villainy is with a bit of hard work and a few talking mice, maybe even a Prince for good measure. But what if the antagonist isn’t who, or what, we expect? I had found myself trapped in an impenetrable tower, slowly buckling beneath a painful spell. It signalled a cruel and unwarranted new page in my very own story, and one for which only a villain of Machiavellian proportions could be responsible. I expected a fiendish witch, a sorcerer, or a dragon. But the heart-wrenching reality of my fairytale is that the hero and the villain are one and the same. Hard work is futile, and the appearance of Prince Charming is even less likely than the talking mice. The villain is the body I inhabit. How could I possibly love something that acted like such a monster?

"I grew up feeling uncomfortable - as if I didn’t belong in the framework of flesh and bones that I had been given [...] In simple terms, it didn’t function in the way I believed it should."


With the diagnosis of a chronic illness, I had gained a list of unscrupulous symptoms, and lost autonomy over my own body. Strangely, I don’t recall the latter being on the leaflet. As a result, I grew up feeling uncomfortable - as if I didn’t belong in the framework of flesh and bones that I had been given. If my body were a favourite jumper, it had shrunk in the wash, the labels scratching incessantly at the nape of my neck. In simple terms, it didn’t function in the way I believed it should. It didn’t allow me to go to school, didn’t allow me to spend time with my friends, and it didn’t allow me to dance. How could it possibly be mine? As time passed, and my limitations began to feel permanent, the little girl who felt wholly uncomfortable in her body grew into a woman who hated it. When I needed to stay an extra year at college, I blamed my body and all of its illogical failings. When a relapse led me to suspend my studies at University, I blamed it again. It became the easiest way to endure the helpless injustice of my situation.

As is often the case, blame was followed by punishment, and with both, an overwhelming guilt. It is these emotions that are so rarely discussed: the fine print of chronic illness. I had talked endlessly with professionals about the symptoms that would make up my debilitation, but never the psychological impact they would carry. Aside from the emotional exertion caused by this dissociation from my body, I learnt to self-destruct. In learning to fight against villainy, I had learnt to fight against myself. My body was cruel to me, and I was cruel back. Even now, I battle with an innate discomfort with self-care. Prescriptions are ‘forgotten,’ rest is taboo and food is the enemy. But, finally, I am beginning to learn. I am slowly, deliberately learning to look after my body. Amidst a world screaming “love yourself!” I am no longer petulantly asking why

"None of what I have suffered is okay. But I am realising that to fight against the very thing that continues to keep me alive is fruitless. "


I still live with my villain. It is the silent guest I wake up to every morning, the elephant in every room. But it is not exactly who I thought it was. While my body is at fault for my failings, it is also responsible for my fight against them. While it causes me daily pain, it also helps me through it. I will never be grateful for my illness. My life is not one that I would have chosen, and the decisions I make will always lack the freedom I desire. None of what I have suffered is okay. But I am realising that to fight against the very thing that continues to keep me alive is fruitless. For all my relapses, there were also recoveries. Unrelenting setbacks paved the way for new perspectives, and the girl denied is a woman determined. The only villain I face is my condition; the adversity it creates, and the stigma surrounding it. My body has been the hero all along.

Follow Steph on Twitter: @StephHebdon