Going through education with epilepsy is definitely a unique experience. Depending on whether you are in class, on the playground or sat in the medical room, the way you’re perceived by everyone around is different and for me, evolved over the years.
My seizures flared up when I was in middle school (Years 5-8) and whilst doctors sorted out my medication, I went through quite a rocky experience from what I remember. At this time I lost my memory frequently during a seizure so I don’t think I’ll ever know if my brain is over reacting when it recalls what happened at this time, but what I do have are the memories of being hauled from class for causing too much of a ruckus. Before my seizures were more controlled, I used to have more manic symptoms that I have no memory of now.
The only thing proving to me that this must have been more extreme is the memories of speed running to the medical room with a TA who I didn’t know very well - not always a good combo when you’re emotions are all over the place! Looking back, I know she meant well but this was proof that there should be more education in how to deal with seizures for school staff.
I don’t know how things will progress in the future, but it is still very apparent that medical training needs to progress so it is more widely known that epileptic seizures aren’t just photosensitive, falling to the floor and shaking. Some of us do act mindlessly or zone out into absences for a while and that is ok. Stigma should be replaced with realisation that it cannot be helped, and nobody means any harm.
However, whilst there seemed to be a matter of worry among staff, pupils were surprisingly chilled out. It’s apparent that across the country having episodes can lead to bullying so I consider myself very lucky that the worst it got were people laughing and even that my brain has blocked out, most likely as another symptom of my seizures.
High school I would consider calmer despite GCSEs leading to a large influx of seizures. At least in this time they were all more or less the same; I experienced mainly absences and complex partial seizures, now known as focal onset impaired awareness seizures. With them mainly happening on the evenings I could deal with them on schedule and people seemed a lot more mature about the situation if they happened in school.
If I could have adjusted anything it would be how hard it was to cope with around exam time.
I suppose the fact I was in denial about my epilepsy when I was younger didn’t help me. Despite being given a card to show to an invigilator if I had a seizure during an exam (which everyone is entitled to so look into this if you don’t have one!) I still struggled with concentration in exams out of fear and because after a seizure, carrying on with a two-hour exam is very tricky.
If there was ever a way to improve exams for people with epilepsy these would be my suggestions:
- Finding smaller venues to reduce fear and embarrassment if you have a seizure
- Make invigilators aware you have epilepsy, so they know when they see the card in the air, the kind of help you will need
- Sitting you at the back of the exam hall to make leaving easier. It took me having a seizure in an exam hall before anyone wanted to do this for me.
Despite the hardships, education should still be made the most of. I know sometimes the school day is easy to dread, but I promise it will eventually be worth it! If anything, it’s another battle that you’ve won.
