Life as a student with an invisible chronic illness is lying in bed at 1am crying over Grey’s Anatomy, knowing that in reality you’re crying over so much more, while you can hear a flat party above you. But it’s also knowing, through all of this, that you’re going to get up tomorrow and try and accomplish so much, and knowing that what you do manage will feel like a greater success than it used to.
I guess I should back track a little so, hi. I’m a second year Psychology student. I’m a blogger. And I have two physical invisible chronic illnesses – Severe Generalised Hyper-mobility Spectrum Disorder, and Fibromyalgia. I also have mental illnesses but this post isn’t about that. Over the last few years at university (I should note that I did a foundation year and this is my second time studying the second year of my degree) I have found my health deteriorating; and, let’s be real, life just isn’t the same when you’re sick.
When you go to university while being ill you have to realise that you’re taking on more than the average student.
First you get your timetable – it’s a lot of hours, especially if you’re used to spending at least 15 hours a day in bed, like me. So you have to make sure the timetable suits you, you have time to eat (because boy is it even more important to make sure you’re fed and hydrated when you’re sick) and you have to make sure you won’t use all your energy up in one day and then crash.
Secondly you have to think about appointments: Maybe you have weekly blood tests or monthly prescription appointments? You might still be in the process of diagnosis and, god, does that take multiple referrals and multiple hospital trips. You might have to fit in counselling because, let’s be real, you need a place to scream about how life isn’t fair sometimes. Then you have to count for flares, will you spend time in hospital? Oh and then of course there’s regular, normal person sick – you can bet it’s just your luck you’ll get fresher’s flu!
What’s next? Socialising. So you come to university, typically with no friends. I count myself lucky that, despite my nearest and dearest being on placements or years abroad this year, I still have a handful of people who I can sit with in lectures or go to coffee with. But whether you’re a fresher or writing your dissertation you need time to socialise. And that of course requires energy. So here you have to go back to that timetable, see if there is say an hour where you can manage to see someone – don’t forget to allow for a nap either side! And then there’s the physical limitations. I look perfectly healthy, some days I don’t even use a mobility aid. But I still can’t go clubbing. I can’t wander around town shopping for hours at a time. So you miss out on those events with your friends meaning it’s even more crucial to find the time when you can.
Just typing this out I’m feeling tired. But there’s more. Extracurricular activities – be it a society group (I help run Harry Potter society) or something to boost your CV (I also volunteer at a peer support group for mental health). These things are just as important as studying, and eating and socialising. So you have to make the time. You may know that on the day you go to your society your energy reserves are going to be totally depleted so the next day you can’t go out. You have to pick and choose the social activities you do that week, and say sweet goodbye to it all when deadlines come around!
And lastly there’s the day-to-day living. The showering, the washing, the cooking, the cleaning. Where on earth do you fit that in too? How do you try to do what a normal person just about manages when you have so much else to think about and your energy levels and mobility are half that of the average person. It’s exhausting. And that’s how you find yourself in my position tonight. Crying because I’ve had a flare this week that’s meant I’ve spend the whole week in bed missing out on lectures and socialising and all the extracurricular stuff I try so desperately hard to do. (I won’t deny I’d probably be crying at Grey’s Anatomy anyway – it was the Chasing Cards, Denny Duquette episode – if you know, you know). But you know that you’ll get up tomorrow and try and do it all again.
Because you know you can – or you hope you can. Because, in my experience, those who suffer are the strongest people I know. Because it is possible. Because once you find that routine and practice it isn’t so bad – you might not have the typical university experience but so be it! Because you will make friends with the kindest souls – there is no denying that everyone can fit in at. Because if you reach out you’ll find there’s support for you. Because you have people cheering you on – be it your friends, or family, or a stranger on the internet (believe me I’m cheering you all on).
And mostly because when you get that degree in your hands, you and only you can know how damn hard you worked for it and I know that is going to be the best feeling in the world.
Disclaimer: This is simply my experience at university. Whether you manage to do as much as me or not is ok. If it wasn’t possible for you to go to university I’m not discrediting that. This is simply my experience with the health I’ve been granted right now. But seriously, whoever you are, whatever you’re doing, we’re in this together.