My Experience of School and Epilepsy

 Hello again wonderful people! Today, with it being the beginning of September and schools going back, I thought I’d share some of my experience of epilepsy at school. I tended to be quite a quiet and awkward child at school, but that was just my personality. I was only loud and a little bit crazy with people I was completely comfortable around. That tended to mean I had fewer but closer friends at school. I was a bit of a nerd. I loved books. I was always reading and genuinely loved learning (if geography wasn’t involved!). I was also unashamedly a teacher’s pet. However, I was also not very good at standing up for myself, which ended up with me being bullied a bit.

The group of friends that I did have made being bullied so much easier. I didn’t really care if at lunch I could go and hang out in our tiny corner of the school. I also had a motto that got me through any kind of bullying whether related to my epilepsy or not. I think it was my mum who first said to me that no one’s opinion matters but God's. Eventually, eternally His is the only opinion that mattered so I didn’t need to pay attention to what others were saying about me, and let it affect me. This was true whether it was about that seizure they saw last week, a discussion in RS about my faith, or just because I wasn’t cool enough. Clinging to the promise, that God’s opinion is the only one that matters got me through that bullying, especially relating to my seizures. There wasn’t much in fairness to the kids at my school. Mostly, there were just strange or confused looks once I got to secondary school. Kids at my primary school were just so used to my seizures that they just got on with it. I only once accidentally overheard people insult me behind my back. Hearing people talk about “that girl who went weird in RS last week”, knowing it’s you, and listening to them insult you not knowing you’re there. That was painful and the most hurtful thing that ever happened to me regarding my epilepsy at school, and I struggled to deal with it at the time.

However, after that very heavy start, I want to say that my school experience was much better than I have just made it seem. I really enjoyed school for the most part. I had a good circle of friends both in primary and in secondary school. My friends at primary school were far more familiar with my seizures because they happened far more regularly. I had my best friend with me at school who by the age of 3 was far more qualified to manage my seizures than any of the adults at my school given the amount of experience she already had! One of the reasons I felt safe all the way through primary school was knowing she would be around to help me. The first time I had a seizure when we were both in nursery, teachers removed the entire class while I was seizing, but she really put up a fight for me, because she wanted to look after me-the teachers didn’t remove her when I had a seizure after that! (After a while they stopped removing anyone and everyone just got used to it. While my friends at secondary school didn’t have quite that level of experience, they were happy to learn and ask questions which made school more manageable, because I really struggled with my teachers not really knowing what to do as I changed teachers frequently.

During primary school, my epilepsy was relatively poorly controlled, and I was trying to manage in a mainstream environment. My nursery, infant and junior schools were all joined, which was beneficial as it meant that there was communication and the transition between all of them was much easier. My primary school adjusted to me quite quickly. I can remember in nursery having beanbags that I could sit on if I was recovering from a seizure. We also had a class cuddly toy monkey instead of a class pet, that I was given to cuddle while I was recovering. I think my earliest memory is sitting on a beanbag in nursery cuddling this toy monkey as I was recovering from a seizure watching the rest of the class learning to count. I had lots of time off throughout my time at school, but management like this meant that I didn’t always have to miss school.

One of the best things about my primary school was that they were good at communicating with me and my family. To help with this, in infant school, before I was able to be trusted to communicate effectively with my mum about how I had been in terms of seizure activity, I had a logbook. This was a little book I carried around with me and gave to whichever teacher was responsible for me. They could then write down if I had any seizures and how I’d been that day. I could then take this home and my mum would know how I’d been at school. This was effective and kept my mum informed as to how I was at school.

I’m grateful that my primary school normalised my seizures and kids just got used to it. It was very common that every two to four weeks I would be taken home seizing. But kids didn’t freak out. They carried on with their lives and if they were sent to the school office for my rescue medication then they were the unlucky child to get a bit more exercise that day! I never felt like I was missing out on my education because they managed things so well. I can remember once during a heatwave being in assembly and starting to overheat which was one of my triggers. I just let my teacher know and she helped me walk out of assembly and sat me at her desk with her desk fan blowing at me. Without sending me to a water fountain, the only drink she had was a bottle of peach flavoured water, so I spent the rest of the assembly sat at my teacher’s desk using her fan drinking her peach flavoured water! I feel so blessed to have memories like that. School was an environment I felt safe in.

And then I got to secondary school and that was a whole different world. Suddenly instead of knowing all the staff and trusting them because they’d known me for years, everything was new. I didn’t know anyone, and they didn’t know me. Which meant that they didn’t know what to do if something went wrong. I was totally reliant on my friends, the school nurse and my tutor who was the only teacher in communication with my parents. I suddenly felt very vulnerable. I think that’s a normal feeling when starting a new school, but this was extreme. There was a system put in place for if I started feeling unwell, I could put a card on my desk to let a teacher know there was the potential for a seizure to occur. However, a miscommunication meant when I started not all my teachers had been informed of this. That was really tricky until it was sorted, and then again all my teachers changed the next year so I chose to give up with the system because I was too shy to explain to all my teachers what it was. (It’s weird remembering back to the time when I was too scared to talk!)

After a couple of years, the lovely school nurse who I’d gotten to know, who I could give a heads up to if I felt twitchy, left. She was one of the only people who I felt like she didn’t start quaking in her boots at the thought of a seizure. She was fantastic and I knew I could trust her. After she left I stopped going to see the nurse to talk to her about how twitchy I was, for fear that they would unnecessarily pull one of my parents out of work to send me home when I was fine to be in school. They really didn’t want me to seize at school, so they sent me home at the slightest hint of seizure activity. So, I stopped talking to the people I should. The people who could help me because I wanted to stay at school and I knew if it came to it, my friends could handle it. I felt like the adults at my school feared me and my epilepsy, and that made me feel more like an outcast than I probably would have done.

Having said that, I still enjoyed learning. I still enjoyed my lessons (if it wasn’t geography!) and I got on with my teachers. They all, always had the same thing to say about me at parents’ evenings. “Bright, but daydreams too much.” Every single time! I, mostly, managed to avoid teenage drama and enjoyed hiding out with the other nerds in the library, making friends with the librarians. And as I got to know the school, and the school got to know me, I was more confident being there. My best years were sixth form. I really loved what I was studying, and my seizures were getting better under control. As I got older I was taking more responsibility for my epilepsy which meant I was happy to be the person communicating with the school if needed and gradually the number of times I was having to ring my mum to bring me my tablets because I’d forgotten them in the morning was decreasing. Things may not have always been simple, and there are definitely things I would do differently, but school and the way it was managed both at primary school and at secondary school helped shape me and helped prepare me for what I needed going into the workplace.