“Well Done for Getting Out of Bed!” - University and Chronic Illness

“It’s only five minutes, just walk over.”, “The waitlist is one year”, “We can’t help you.” “Fill out this form.” Only a few of the many things I have been told countlessly over the past three years. The funniest thing about chronic illness is that when you tell people, at first they don’t really believe you until you collapse on the floor and they mutter, “I didn’t realise it was that bad”. But, illness had already determined the entirety of my life for three whole years, I wasn’t going to let it take something as important as University from me. So here I offer a diary, advice and perhaps even a place for people like me to share their stories.

I remember my first year like loneliness, in a big disabled room, staring at white ceilings and sighing at fire alarms. Too tired to go anywhere, barely able to put a pizza in the oven and on late night calls to people I loved until love became all I was. Like a zombie, walking around until legs caved in. At first, classes were boring, how did the one thing I loved to do become boring? I didn’t write much in those first few months and I remember feeling a hole where something should’ve been, words never written, thoughts tossed away and forgotten. I awoke one night at three in the morning to four boys smoking cigarettes and blasting music and as annoyed as I felt, perhaps part of me wished I could have been them.

The second term proved better than the first. For some reason I had finally found words to say, if it was my many hospital visits which resulted in nothing or maybe I had found a pattern on the blank walls which particularly piqued my interest. I’m unsure but the mundane became poetic in a way. And maybe I was proud of myself, as I felt I was allowed to be. While chronic illness isn’t always an outward struggle it doesn’t discern itself from being a struggle, just because people can’t see how tired you are, or how much pain you’re experiencing, doesn’t mean that pain doesn’t exist. And weirdly, I became okay with how different my days were to others because they were days of success despite struggle. And unfortunately that struggle is only going to continue, the University suspending my use of an e-bike to traverse campus and restricting me to wheelchair use for my second year. And despite the demotivation I feel because of this, I remain determined not to let this define how my next year goes which I suppose is a small magic in itself.

Regardless, I am definitely not going to have the “regular” University experience but I refuse to put the pressure on myself to uphold the activities of an able person when I am in fact not able, despite what everyone seems to think. All this loneliness I had fabricated felt like a way to make myself feel guilty for not being able to partake in the things that everyone else did when really what did I have to feel guilty for? What I’m saying is, there is a fear amongst the chronically ill of not being able to do what other people can do. But why should we have to when doing all of those things is twenty times harder for us?

Do I want to say “Well done getting out of bed!” every morning? No not really but, should I congratulate myself for submitting work that I am proud of and that I genuinely love? I think probably so. Chronic illness is so dismissed by the world that celebrating small things feels cheap but I think sometimes I forget that I must celebrate what all those small things amount to. So what? I didn’t go out later than 9PM and yeah, I slept basically thirteen hours a day but I still did it. Regardless of everyone trying to tell me that I can’t. I did it. Not only that, I’d go as far as to say that I did it well. So here is my piece to tell people like me that it's not embarrassing to achieve if you didn’t do it like everyone else. We are not everyone else.

If you connected with this piece in any way please share your stories too, we’d love to hear them!

By Karishma Mistry