Epilepsy in Young People
Epilepsy - school, studying and bullying
Many of the young people we spoke with had been diagnosed with epilepsy before they went to school or while still at school. Here, they talk about how having epilepsy affected their schooling. Experiences ranged from very positive to those who felt that their seizures had had a major negative effect on their studies and schooling. It was especially difficult for those who had been bullied at school.
Positive experiences at school
Going to school had been a positive experience for many and they had felt well supported by their schools and teachers.
Alistair's teachers were helpful and knew what to do if he had a seizure at school. They also...
You said you experienced some seizures in class? What would happen?
When I was at school mainly the main seizures I were having were just normal blackouts. I tend to be in a world of my own. The teacher would notice this straight away as they would say that I was a main student in class. The teacher always noticed that I were doing good work. So they would notice it if I was going downhill. So the teacher did actually realise that I was having seizures. I was always sat with friends during class. And none of my blackouts were falling onto table, falling forward. Luckily I wasn't have seizures where jerking of the body was happening. That was lucky. In some subjects I were told just to take it easy. Like science. If I'm holding chemicals in me hand, you know, just to be careful. So I had a member of staff with me most times in science and lessons like that.
Archie had a few seizures in school, mainly when he was doing sport. He says his teachers knew...
I find it generally good, I haven't really had many seizures at school, but the only times that I did have seizures at school were in sports and I find that quite interesting, I dunno if it's because it's active, and maybe if I get tired or something you know, exhausted, I might have a seizure or an aura. But generally, subjects are very good and my friends are quite supportive. And I haven't had a seizure before or after exams so, that's quite good. And I hope I won't have any for the summer. But otherwise, otherwise I'll have to re-take the exams in the 6th form, which wouldn't be very good.
Yeah. Do all the teachers know about your epilepsy?
Well the subject teachers that I have do, but the teachers that haven't taught me before probably don't know about it. Definitely the ones that have been teaching with me for the five years know, but maybe even some of them that have only been teaching me for like one year, they might not know. But, I think our head of year has told all our teachers who's got which illnesses.
Yeah. And have they been supportive?
Yes, they've been very supportive, and the secretary she's always looked after me, whenever when I've had a seizure or something. Yeah she's been very helpful.
A few people explained how the school had been flexible in accommodating their needs. For example, a couple of people said that they were allowed to take some time off school if feeling unwell after a seizure. A few also had special arrangements for taking exams, including having more time to do the exam or getting an extension for handing in school work. One young woman had struggled in her first school but, after she changed schools, felt much more accepted and supported.
Rania got much more support and passed all her exams after she changed secondary schools.
Many people warmly recalled one special person from school who had been particularly understanding and helpful, be it the school nurse, secretary or the head teacher.
Martyn feels lucky because everyone at school was understanding. Others sometimes found his...
Challenges at school
For many people, however, school had been a difficult time because of seizures, the side effects of the medication or because of the way other people had treated them.
Several felt that there had been a considerable lack of awareness of epilepsy in school and that this had affected their schooling. Some, who had absence seizures, said that teachers knew very little about any other seizure types than tonic-clonic seizures and often didn't realise that these young people were in fact having absence seizures in class.
Anna's teachers didn't realise when she was having absence seizures and how absences made some...
Another woman, who also had attention deficit hyperactivity disorder (ADHD), said her teachers complained that she was just 'acting up' in class.
Having frequent seizures of any type in school was very disruptive and affected people's school work. One woman's school years were hard as she was 'forever fitting' at that time of her life.
School was very difficult for Donna. Because of her medication, she often felt tired, couldn't...
Ben's dad says that school was very difficult for Ben. He was very active, and found it difficult...
The side effects of epilepsy medication caused a lot of problems for many and affected their school work. Problems with memory and constant tiredness made it difficult to follow lessons and do exams. One young man said:
“The main problem I had with school in terms of my epilepsy was that the medication made me so tired that I did fall asleep through the class sometimes… that wasn't too good, sleeping through the class”.
Many people's seizures were triggered by stress, which made exam times especially hard. A few had actually had a seizure during important exams, like their GCSEs or A-levels. A lot of people also had memory problems as a side effect from medication, which made both revising for, and taking exams, very challenging. Some who had absence seizures noticed when revising that they had missed out bits of lessons because of their seizures and hadn't been aware of this at the time. A few people's marks had gradually gone down after they were diagnosed with epilepsy.
Carole found school incredibly difficult because of her epilepsy. She left school early because...
I found school incredibly difficult so I did leave, and it was also the memory loss. Because I had a complete blank memory due to it, I forgot like about a year of my life, I just can't remember it, it never happened in my eyes. People would sort of bully you about it and stuff like that so, it was in my best interest to leave, and then I just came back for exams. I actually, I put in a lot of effort to try and get exams but I did fail and I would put it down to my epilepsy because everything just completely changed. As a young person you don't really know what it is, I was having a lot of tests, like the brain scans and consultations and people going, 'Well is it her or is it something going on?' and it led me to have a lot of behavioural problems 'cos, before an absence I'd tend to argue, for no reason, and I don't even know that I'm in the wrong even though I would be. I would have a lot of mood swings and behavioural problems and just my confidence went downhill completely 'cos obviously sort of when you're, when things are happening to you that you don't know what on earth, the hell is happening [laughs] then it's very difficult.
Some people felt that they hadn't fulfilled their full potential and hadn't been able to achieve the goals they had set for themselves when they were younger.
After being diagnosed with epilepsy, Zoe found studying harder. She says for a while she was in...
Morven had wanted to do History and Art at university but, because of problems with her memory,...
I was really quite interested in history and arts when I was doing my standard grades and at that point I thought about maybe being an archaeologist. 'cos I was always really quite interested in that sort of thing, but then when it came to the end of my standard grades when I looked up to the next year I could see that history wouldn't be the best one for me 'cos I'd have far too many like different dates to remember and things like that so that's why I couldn't actually do a higher in history, so I had to just give up on that one. So I went onto just doing higher art thinking that I might be able to be a person who does the decoration of windows in our shop or something, 'cos I quite like just doing the design section of art design, but then when it came to that it was, I just couldn't get high enough in the arts, 'cos when you want to do that you have to actually get into the College of Art, and I wasn't good enough with the actual painting section of it, I was really just more for design, so I couldn't get high enough grade in the higher to move into that sort of thing.
Some people felt they couldn't achieve their best and found this extremely frustrating. They often had to make new plans to do a different college course or other type of work (see 'College & university' and 'Work and (un)employment'). A couple of people found that, in time, their new plans suited them really well. They gradually started feeling better about what they had achieved under very difficult circumstances.
A major aspect which had made school very difficult for many was the attitudes and reactions of other people, usually other pupils. Some said they felt different from others.
Will felt different from other boys in school. It was difficult for him when the teacher told...
I didn't feel assimilated, socially it was a bit difficult, because obviously everyone was sort of told, they said to me, my Housemaster said to me, 'Right well I'm gonna brief the guys, I'm gonna brief the House.' And it was kind of like, he wasn't addressing me in a bad way but, it was kind of like me standing there kind of and my Housemaster was talking to everyone, so there's fifty-odd lads, you know, of all ages, you know, thirteen year olds to eighteen year olds, just sort of saying, 'Right, you know, well this is William [his last name], you know, and this is the problem he has.' And I was sort of like stood there, he wasn't exactly telling me off but it was more or less, I just felt I would not, I do not want to be in this place right now. He actually asked me did I not want to be present at this, and this gathering, but I just said, 'Yes let's just be grown-up about this and we've got to, you know, take it on the chin and this is the way it is so' ,but it was yeah, I actually blushed it was [laughs] very difficult for me, for him to talk about me in this way in front of, let's just say forty-nine lads so
What was the response from people afterwards?
Well they were actually very interested. So obviously this photosensitive malarkey came a lot into it because, that's immediately what people associate epilepsy with is the strobe lighting sort of thing, but I wasn't one of those.
Robert says he couldn't 'cope with being at school' and the special needs classes were too easy for him.
Being teased and bullied in school was something many young people we spoke with had experienced. They talked about being 'called names', 'having the mickey taken out of' them or their seizures being imitated, which was very hurtful. One woman said she didn't really have any friends in school and felt miserable because she was being teased so much. She said she often had to sit 'as a loner' during the lunch breaks.
People talked about the impact bullying had on them, including knocking their confidence and feeling upset and withdrawn. One man who suffered from bad acne caused by his epilepsy medication was called names and teased about his seizures. He said, “It affected my self-confidence so I was just like really shy, so that affected me a lot”.
Bullying changed Harry. It knocked his confidence, 'took the laughter out' of him and made him...
Mum' It was hard to deal with wasn't it?
Harry'Yeah and it changed me.
In what way do you think?
Harry' Just towards those kind of people. I've got a lot of hatred towards them. And I'm not a nasty person or anything, but'
Mum' I think it took a lot of your confidence away didn't it, as well?
Harry' Yeah it did take a bit, well, at that time it did, but I've got my confidence back.
Mum' It took a lot of the laughter out of you. The fun out of you didn't it? Knocked it out of you 'cos you were so upset.
Harry' Yeah I didn't like' because I went to schools before that and no one had ever bullied me over my epilepsy or anything before, but just the fact that they did, really, and I'd never experienced it before, got to me.
Mum' Cruel wasn't it?
Harry' Yeah, and also I don't think the teachers understood when I would lash out at them, for them saying, they'd say like, 'You can't hit someone for you know just calling you a name or something.' And I'd get in trouble. And I don't think they understood you know.
Mum' They didn't see what they were doing really half the time.
Harry' No they didn't see really what they're doing like and how hurtful it could be, to say things like that.
A couple of people said they got so angry after being teased that they would lash out at the bullies and end up being blamed for being aggressive.
Having a seizure in school was a particularly difficult experience because other pupils would make jokes or tease them even more afterwards. One man with absence epilepsy said he kept his epilepsy a secret for years because he didn't want to be known as 'the boy with epilepsy' in school.
Many people felt that their teachers hadn't handled the bullying and other people's negative reactions very well and, in some cases, hadn't responded at all. Young people had found help by talking to their parents about bullying and deciding to make changes in their lives.
Bex's teachers did little about bullying so she decided to change things herself. She joined a...
That was very, it was difficult quite lot at the time and I thought, you know I wanted to do something about it and I couldn't really. And the school weren't really responding, because I was at the time friends with this bully and they just thought it was like a cat fight type of thing and a lot of the time they didn't really respond so it was very difficult.
I just wanted to do something about my life so I joined, I joined a local church that I knew about and they had a good youth club and I got talking to one of the guys there and he surfed and I always liked surfers so I thought hmm, I might give it go. So he invited me along to one of the surf group things that they had, and I joined that and just really got into surfing and really enjoyed just doing things for myself and just you know doing something I enjoyed and I suddenly realised that I was becoming different because of what I did, not because of what I had.
A couple of people said they had received great support and help from epilepsy organisations who offered both practical help and counselling.
Bex's local epilepsy support group had organised a nurse who would go to schools or youth clubs...
Despite many negative experiences, some people said their class mates and other pupils at school had been very understanding and, more than anything, worried for them. Many also said that they had a circle of close friends whom they could trust.
Gemma had a seizure in the common room in school. Pupils she didn't even know came up to her...
For links to more information and support on bullying and cyberbullying, see our Mental health and wellbeing resources.
Last reviewed May 2016.
Last updated March 2012.