We spoke with 17-year-old Ailsa about her experiences of epilepsy, school and deciding to continue her studies.
Ailsa just finished high school and is going to university to study music.
When were you diagnosed with epilepsy?
I was diagnosed with epilepsy when I was 11 or 12, in my second year of high school.
At that point in time, it was absence seizures I was having, which for me are just zoning out for a couple of minutes, or a millisecond if my medication is controlling them – so it didn’t really seem like too much of a big deal at the time.
But after about a year I started having tonic-clonic seizures which, despite the fact they are only monthly for me, have affected me a lot more.
Do you feel your epilepsy had an impact on your time in school?
I feel in the earlier years of high school, the medications I took for epilepsy impacted my time at school much more than my epilepsy.
I have switched medications a couple of times now – but of course all medications have side effects.
When I was on one of my earlier medications, I had to stay off school for very long periods of time because of how ill I was feeling.
By the time I was in my final years of school, my medications were more settled down and I had to stay off only for tonic-clonic seizures so the amount of time I missed wasn’t quite so much.
However, it still sometimes impacted me, and I had more to catch up on.
School also impacted my epilepsy, since stress is a big seizure trigger for me. Unfortunately, I’m not the calmest person ever so school stressed me out a lot!
It is terrible to talk about COVID-19 in a positive light, however I think the fact that I went through my fourth and fifth years of high school during the pandemic helped me massively.
Since the estimates for my grades were from throughout the year and I consistently worked hard through the year, I was able to do much better than I would have in a normal year.
Everyone loves to hate online learning – but I was able to do things at my own pace and taking a day off for a seizure didn’t make me fall behind.
Everything always takes me longer than it should do, so it helped my epilepsy have less of an impact on my school time.
Epilepsy has also impacted my social life. I’m very grateful to have close friends who have supported me continuously.
However, I’m still a lot less confident making plans, and leaving my house in general because of it.
Why did you decided to continue your studies and apply university?
I guess I just always assumed that I would try to apply to university before being diagnosed with epilepsy, and I have always liked music.
But I think having to spend so much time off school made me value education more and think of it as more of a privilege to be able to be at school.
Although that wasn’t always my outlook when I was in school – a huge amount of complaining from me still went on!
Do you have any concerns about your epilepsy affecting your time at university?
I am switching medications now so I’m worried that my new medication will affect me badly and I will miss a lot of university because of either that or having more seizures.
I’m also worried – since I’m studying music – that I’ll have an absence during an important performance and end up failing because of it.
I’m staying at home for university, so I have less to worry about with not moving out, but I’m really worried about making friends.
Tiredness is a seizure trigger for me so I wouldn’t want to stay out too late at night, and I think alcohol would be too.
So, I feel it might be harder to make friends and if I do, to not be left out of everything.
What advice do you have for other people with epilepsy thinking about applying for college or university?
I don’t really have any advice specific to epilepsy so here is some more general advice.
The most important thing is that if you are struggling with something you reach out for help rather than staying silent.
No matter the problem, there will always be someone you can talk to, and staying silent will only make the problem bigger.
I think that if you’d like to apply for university or college, you should.
Even if you aren’t sure you’ll get in or want to go, you should still apply. It’s not like if you apply you are suddenly going, and if you get into the university/college, you can always reject their offer.
Talk to your careers advisor if you have one at your school as they will be able to help you a lot through the application process.
Also, check your application date – because if you are an early applicant, you can very easily miss it.
If you get in, you shouldn’t let your epilepsy stop you from going – you just have to accept you may face a few more hurdles when you get there than other people.