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I was diagnosed with epilepsy in my first year of uni.
In 2016, I began having seizures as a result of encephalitis. I kept having weird turns and passing out, which I just put down to tiredness. But one month into uni, I was in Truro hospital getting an epilepsy diagnosis. It came out of nowhere.
I was a long way from home, studying music in Cornwall at Falmouth uni. My parents were devastated and I just felt so bad for them. They came down a lot to see me in those early months. My mum has given me the most amazing support.
I was a bit down for a while just adjusting to my diagnosis. I was worried epilepsy would jeopardise my degree and my results. But I’m a positive person and I just thought I had to get on with it.
To be honest, my main challenge at uni was dealing with other people’s reactions. Epilepsy can be pretty scary for those around you, so I was coping with their fears more than my own. But once I explained what it was all about, what to do when I had a seizure, they were fine. My flatmates got me to hospital loads of times, they were great.
My tutors were brilliant, too. When I was in hospital for 2 weeks, they told me not to feel any pressure or rush back to lectures. I could catch up when I was well enough. They were really supportive when I struggled to finish my course, and I was able to retake some modules. I had such a good experience at Falmouth, they couldn’t do enough for me.
Of course, there’s the social side of uni and I wanted to be part of that. But you have to know your limits with epilepsy. If I ever tried to overdo it, that didn’t end well for me. I just had to adapt, and I always had my music. That kept me healthy – music is so good for the brain! Heat and lack of sleep tend to be my triggers, as well as stress. Once I was playing bass at a gig and had a tonic clonic seizure on stage. I dropped to the floor and broke the guitar! Very rock n roll…
I now work in the music industry at a record label, which I love. I’m also really keen to work with young people who have epilepsy, helping them during their education, especially in creative ways. I still have absences every day, focal seizures occasionally and the worst are tonic clonic seizures, about once a month. I have sleep seizures, too.
If you are off to uni soon, try not to worry. It’s such an exciting time of your life, and epilepsy is just an extra consideration. The beauty of it is you’re in charge. I really believe that. If you are open and comfortable talking about it, your friends will be too. When everyone is aware they’ll be understanding, and they’ll look out for you. But watch your triggers and don’t overdo it. Always put your health first.