Young people from Epilepsy Scotland have their say about what school is like when you’ve got epilepsy, and the support that helps.

The young folk at Epilepsy Scotland

At school, how does epilepsy affect you?

“I couldn’t go to a dance class on my own, I had to have a teacher with me.  It felt embarrassing.  I feel like I have no independence.  My mum and dad have no time alone for themselves because of my epilepsy.  When I have a seizure at school I can hear people whispering about me when I come round, and it makes me feel so sad and low.”

“Having epilepsy really annoys me at school and I get upset about it a lot.  I worry all the time about having a seizure, people stare at me and think I’m weird.  I am so terrified of having a seizure at school I don’t think I concentrate as much as I could.”

“My epilepsy is well controlled now and I haven’t had a seizure in years, so having epilepsy no longer affects me at school.  Teachers are understanding.  I do think though, that if I still had seizures I would be having a much harder time.”

“Epilepsy mean I miss out on sports class which is my favourite class!  If I have had a seizure, I am not allowed to take part even though I feel fine.  Some people at school don’t care about you and just leave you if you have a seizure in the corridor.”

What kind of support helps you to get the most out of school?

“I get good treatment from teachers, they take me to a room on my own when I have had a seizure, I get to relax and return to normal, let my mind clear, and then return to class again when I am ready.”

“If I feel funny, I get to sit quietly until it passes.  It helps when my classmates ask if I am ok.  It makes me feel safe when my classmates are keeping an eye on me if I feel strange.”

“I get to go to a safe room to have break and lunch, if I need it.”

“My support teacher helps me a lot in class.  She helps me because I have memory problems and am a bit slow at picking things up because of my constant seizures.”

“I get support in class, and it helps.  It sometimes hinders me, because I feel it holds me back from being “normal” and my classmates look at me and judge me.”

“If pupils understood seizures more, and all the different types of seizures, they would understand me better.”

“When Zoe at Epilepsy Scotland came to my school to do an Epilepsy Awareness Workshop, everyone in my class asked me lots of questions and wanted to know more about epilepsy.  It felt wonderful!”

If you’d like Epilepsy Scotland to come to your school to do an awareness workshop, you can get info here.

To get involved in the youth group at Epilepsy Scotland check out their website. Here’s what one young person who goes to the group had to say about it: “Youth group means I get to see my friends, have fun, and be supported away from home.  It also means I get free pizza!!”…

Roll on the free pizza!