I was diagnosed with photosensitive epilepsy when I was 14, which really got me down for some time. I hated having seizures as they always made me feel awful afterwards, and each time I had one it felt like a giant step backwards. Before my medication properly controlled my epilepsy, I couldn’t do all the things my friends were doing as I was so afraid of waking up feeling groggy and not knowing where I was.
Even though I was having less seizures, this ‘fear of missing out’ greatly increased during Sixth Form where my friends were starting to stay up drinking or go out to clubs. For a long time, I felt like I was never going to be a normal person and was never going to be able to do normal stuff. The future seemed to be hopeless, and I felt so restricted by something that was out of my hands.
I really did think that university would be incredibly difficult for me, as there is so much focus on ‘going out’ and ‘getting drunk’ I was scared I wouldn’t make any friends. Luckily, I met some amazing people who didn’t mind working around me. Even still, I just wanted to go out with them and decided to see if I could get my uni to implement any times where I would be able to go out, for it seemed that every club night was littered with strobes which would trigger my photosensitive epilepsy. The Student Union at Royal Holloway University of London (where I am enrolled) has a feature where students can submit ideas about changes that they would like to make which can be upvoted or downvoted by other students. The upvotes I received where incredible and I was contacted by an ambassador arranging a meeting. After a surprising amount of negotiations and endless meetings and emails, I finally managed to get the Student Union to give me some strobe-free club nights this term.
It took a long time for me to get somewhere with this, but I’m so glad that I’ve been able to do it. I’ve been getting so many lovely comments from people telling me that they are so thankful that they can now bring their photosensitive epileptic friends out with them and alumni who wish it had been implemented when they were studying there.
The support is incredible, and if there is one thing I want people to take from my story it is that you should NEVER let a disability hold you back and you should NEVER give up in what you believe in.