I’d like to start off by providing some precise statistics on my illness; the date of my diagnosis, the different medications and advice prescribed — that sort of information. But I can’t do that, because living with a chronic illness can’t be condensed into just facts or figures. Honestly, most of my early teenage years are a blur, more so than they should be for a twenty-year-old; spending ten hours awake per day for a full year will do that to your memories. Having M.E. wasn’t just an aspect of my identity as it mostly is now; it was my life. Combine this with all the usual anxieties of growing up as a young woman, and you have a heavy amount of angst on your hands.

Coinciding with the onset of puberty, my M.E. forced me to deal with two types of sickness. My body morphing before me into something increasingly alien with its new curves and edges, but I also had to contend with the fact that it wasn’t supporting me anymore. It left me exhausted and incoherent when I should have been out in the world. For insecure teenage girls, the concept that you should love your body for how it helps you function is often rolled out to encourage self-love; as someone whose body was seemingly sabotaging itself, this wasn’t something I could take comfort in. My weight, which has always been on the lower side, was also being brought into question far more often by a wider range of people. I felt unable to move from under a spotlight.

But this was only at home — the image-obsessed school I attended complicated everything even more. Uniforms, which suppose to put everyone on an even playing field, only intensified comparisons between people that were inevitably made. How tightly did you skirt fit? Did you ever wear trousers? How thin were you compared to other people in the same outfit? Could you pull off the regulation ponytail as well as girls with better skin, more makeup, more delicate features?

When you’re already singled out as unusual for barely attending school, this kind of scrutiny feels unbearable. I tried my best; rolling up my skirt, obsessing over new hairstyles and how to get my liquid liner just right. In many ways, this made me feel better — even now I find myself putting more effort into my appearance than necessary when I’m feeling low. I’ve learned to self-elevate. But with this primping came a key difference: my body was already tainted. No one ever asked what illness I had; I was branded a rumour, contagious, and to be avoided at all costs. Even talking to me might have infected them, damaging their health and their reputation. One boy who sat next to me moved his chair as far as he could in the opposite direction without attracting the anger of the teacher. I sometimes wonder what the reaction would have been like had I looked on the outside how I felt on the inside; would the ignorance and cruelty directed my way, from both students and even from some teachers, have intensified for the dual crime of feeling and looking bad? Young women are so routinely crucified for their appearance, it wouldn’t have surprised me.

Amongst the faded memories of lying in bed watching endless hours of 60 Minute Makeover when I should have been in a chemistry lesson, one memory stays crystal clear. I was at a doctor’s appointment, sat between my parents with my legs awkwardly dangling from the side of an examination bed, listening to what a specialist in the field of my disease had to say. Noticing my dour face, a face resenting how my years of discovery were being stunted, she turned to me and said this: 

‘I have to look after mothers whose babies are dying in their arms. You should be much happier.’

I can’t imagine that kind of pain, but I also can’t understand why this comparison needed to be made. Does the intensity of one type of pain dull all others so they shouldn’t be felt? Another implication was clear – women are permitted, even encouraged to suffer when it comes to motherhood, but beyond that, they are expected to stay silent. 

Why should I be quiet about the debilitating illness that has taken so many of my young years?Staying quiet on my experience would only serve to force other women into bottling up their feelings to keep others comfortable. Regardless of the severity of your illness, you deserve to express your pain, and pitting women against each other even in terms of health only serves to harm people at their most vulnerable.

Without the expectation of beauty and silence placed on me at an already difficult time in my life, I wonder who I would be now; maybe, in some other world, I’m secure in my appearance and confident in expressing my pain. Women are routinely put through this scrutiny, a bad habit society just can’t seem to shake, and chronic illness places a magnifying glass on this internalised misogyny. The burden always falls mistakenly on women’s shoulders to shift their insecurities, but I’m tired, and the weight of expectation is often too heavy to lift alone.

Words: Zoe Crombie

Illustration: Nina Goodyer