When I last spoke to Young Epilepsy in 2023, I was preparing to start university and feeling a mixture of excitement and nerves. I'd just finished my A-levels and was about to move from London to York to study Politics and International Relations.
Now, three years later, I've graduated with a first-class degree and am preparing to start a master's degree at King's College London. Looking back, university was one of the best experiences I've had, but it wasn't always easy. There were challenges, particularly around living with epilepsy, and there are definitely things I wish I'd known before I started.
Moving away felt exciting and scary
One of the things I was most excited about was living independently.
For a long time, epilepsy had affected my confidence and independence. There were periods when my seizures, medication side effects and mental health struggles made everyday life difficult. My family naturally became very protective, so the idea of moving away and looking after myself felt like a huge step.
At the same time, I was worried.
Like a lot of young people heading to university, I wondered whether I would fit in. I worried about meeting new people and whether I should tell anyone about my epilepsy. I also worried that university life would revolve around drinking, clubbing and staying out late, which didn't really fit with what I knew was best for my health.
I was nervous about telling people I had epilepsy
One of my biggest concerns was whether to tell other people about my epilepsy.
I'd had experiences in the past where people treated me differently after finding out, so I was anxious about how new friends and housemates might react.
When I arrived at university, I decided to tell a couple of people I lived with. I kept it simple. I explained that I had epilepsy, what to do if I had a seizure and who to contact if I ever needed help.
The reaction was much better than I expected.
The people around me were supportive and accepting. Over time, I became more confident talking about my epilepsy and realised that most people genuinely wanted to understand and help.
If I could give one tip, it would be that you don't have to tell everyone straight away, but it can really help to tell at least one trusted person.
Freshers' Week wasn't what I expected
I think there is often a stereotype that university is all about nights out, drinking and clubbing.
For me, that wasn't the reality.
Some of my seizure triggers include lack of sleep, alcohol and flashing lights, so I knew clubbing wasn't going to be a good option for me. In fact, I never went clubbing during my three years at university.
There were moments when I felt left out, especially during Freshers' Week when lots of people seemed to be going out every night. But I quickly realised there were plenty of students who weren't interested in that lifestyle either.
My university organised alcohol-free and sober events, and that's actually where I met one of my closest friends.
One thing I learned very quickly is that Freshers' Week isn't an accurate picture of university life. After those first few weeks, people settle into routines, join societies, focus on their studies and find their own groups of friends.
The biggest challenges weren't always visible
Although I was fortunate not to have any seizures while I was at university, epilepsy still affected my daily life.
One of the biggest challenges was dealing with the less visible side of epilepsy. I experience memory difficulties and processing issues, which can make studying more difficult and time-consuming.
There were times when it felt like other people could complete assignments much more quickly than I could. I often needed longer to read, process information and organise my work. Sometimes that was frustrating because it felt like I was working twice as hard just to keep up.
I also experienced periods of anxiety, panic attacks and low mood during university. While it's difficult to separate exactly what was caused by epilepsy and what was caused by other factors, I learned that looking after my mental wellbeing was just as important as managing my physical health.
Support made a huge difference
One thing I wish I'd known earlier was how much support was available.
Before university, my neurologist encouraged me to apply for Disabled Students' Allowance (DSA). Through this, I received one-to-one study support, which made a real difference.
I also had a student support plan in place and lecturers who were understanding when I needed adjustments. My university even discussed emergency plans with me and helped make sure support was available if I ever needed it.
One tip would be to look into support early.
There are lots of different forms of help available, but it can take time to put everything in place. Starting those conversations before you arrive can make the transition much smoother.
Learning to manage epilepsy independently
One of the biggest changes during university was learning to manage my epilepsy independently.
Before I moved away, my family often helped me remember things like taking medication or attending appointments. Living on my own meant taking more responsibility for those things myself.
At first, that felt daunting.
But over time I became more confident. I learned how to balance my studies, social life and health. I became better at recognising when I needed rest and understanding my own limits.
University helped me realise that epilepsy is part of my life, but it doesn't have to define it.
My tips for anyone starting university with epilepsy
If you're preparing to start university this year, I'd say this:
- Try not to put too much pressure on yourself.
- Be open with at least one trusted person.
- Look into support as early as possible.
- Take care of your body and don't ignore the things that help keep you well.
Most importantly, remember that university isn't about trying to be exactly like everyone else. It's about finding what works for you and finding the people who accept you for who you are.
For me, university was challenging at times, but it was also fun, rewarding and full of opportunities. Looking back, I'm so glad I took that step. I made friends, developed confidence, gained independence and achieved things I never thought I'd be able to do.
