As you can expect, dealing with a chronic illness in your day-to-day life and maintaining a positive exterior takes quite a lot of energy (which sometimes you don’t really have). I have Ehlers-Danlos Syndrome, which comes with a constant pain that you can sometimes just about tune out of until you twist or stretch in a way that your body doesn’t agree with, and get rewarded with the sharp pain of a joint popping out of place. I also have seizures when I get too hot, stressed, anxious or excited and, as you can expect, seizing results with at least four or five dislocations to deal with when I come round (although I still hold a personal best of sixteen dislocations post-seizure – it was a particularly violent one).
Between being diagnosed at the age of fifteen until now, at seventeen, I’ve grown used to the brain fog, the pain and putting my joints back and I’ve been able to keep positive, using methods of distraction such as learning to knit and sew my own clothes. Recently though, something happened that I wasn’t quite expecting – but I’m proud to say that, after the initial shock and upset, I’ve actually come out of the situation with a much better attitude.
Being in my final year of school, it came to the time where we needed to start applying to universities – cue en masse panic and stress from the entire year group. Having dealt with my disability for so long, I knew what I needed to be looking for; a university with good student support and nearby accommodation that suited my personal needs. Then the perfect place revealed itself – the course was amazing (I was looking to study philosophy), and on the open day the faculty were so encouraging, telling me that they’d be able to let me attend the lectures through video conferencing if I wasn’t able to make it in. The accommodation was a three-minute wheel from the building (I don’t even have a particularly speedy wheelchair) and I was told that if I applied early, I’d be guaranteed a ground-floor room with wide doors to that I could wheel on through, and that the bathroom could even be modified to have grab rails where I needed them.
Of course, I was so in love with the uni that I sent off my direct application as soon as I returned from the open day, and got a speedy reply from one of the admissions team saying that they loved my personal statement and asked if I could send in a writing sample and contact details for a referee. A few days later, I got a phone call from the same lady saying that while my application looked really good, I wasn’t going to be invited to interview on the basis that I was physically disabled. As you can imagine, I wasn’t best pleased – especially since all they knew about my condition was that some days I used a wheelchair. I asked about everything the staff on the open day had assured me could be arranged, and the answer I got was that they simply wouldn’t be able to do that for me.
I’d never dealt with discrimination like this before but, as with everything, I was determined to put a positive spin on it. I decided to completely change the subject I was going for and take the risk of applying for a foundation course in textiles, despite never having officially studied it before, only by practicing in my spare time at home. Sewing and knitting have been things I’ve learnt to do as a result of my illness on days where I’ve been housebound. Their ability to distract me from my pain meant that they became a big part of my life, and in the past year I’ve started an Instagram account and blog about my making. But before this rejection I would never have considered applying to do it as further education, thinking that my lack of actual education in it would put me at a big disadvantage. However, after being told I couldn’t study something that I had been throughout my whole academic career and (not to blow my own trumpet but) excelled at in comparison to my other subjects, it gave me the confidence to throw together a portfolio and apply. And, to the shock of everyone, I got accepted.
So really, being turned away from what seemed to be the dream university made me take the plunge and apply for a course that I never even thought I’d be considered for. Now, I get to study something that I have a genuine passion for, and it means that I could even go further and have a career in the textile industry after graduating.
Whilst being rejected because of my disability was a bit heartbreaking, it reminded me to keep in mind that it really wasn’t the end of the world and to find some way to turn it into something positive. Of course, I allowed myself to be sad, but it’s made me even more determined to not allow someone telling me I can’t do something stop me from proving them wrong.