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...

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Age at interview: 18

Sex: Male

Age at diagnosis: 16

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Teachers were aware, posters were up in staff room for teachers with a photograph of myself saying that I've epilepsy and cards, teachers were given cards of what to do in a first aid situation. Because we only had a couple of main first aiders who were in the school, but teachers were informed and told what to do in case of a seizure was to happen in class. And they understood that if I ever wanted to leave class I could do it at any time. And the teachers were very helpful. And some of my good friends at school, they were as well. But otherwise it was okay at school. And I would say thank you to them again.

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...

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Age at interview: 16

Sex: Male

Age at diagnosis: 10

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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.

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Age at interview: 16

Sex: Female

Age at diagnosis: 15

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When I was younger and at primary school I went to a private school and they dealt with everything really well. But I remember having some difficulties, being unable to understand the questions and you don't really want to ask for help all the time as well so you just sit there not knowing what to do half the time. And then when I got to my first secondary school it got a lot more difficult. Because the teachers would complain and say I was just acting up and being difficult, and they couldn't really deal with the epilepsy or the ADHD and it just got out of hand so, I had to change schools. And in the next school they were a lot more supportive. They explained everything and they were able to cope with my seizures and you know deal with it and you know they used to send the work back and explain everything and I managed to pass all my exams while I was there.

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...

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Martyn feels lucky because everyone at school was understanding. Others sometimes found his...

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Age at interview: 22

Sex: Male

Age at diagnosis: 12

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School they were great too, the students were great I think I was really lucky to be at that school, but everyone was understanding and fine with it. I mean when I was in the Year Seven it was a funny thing and again when a guy just has his hand up to answer a question and gets picked to, you know, and doesn't answer for three seconds and then it's like, what's going on? It's funny you know, people are bound to laugh at that but not because it's epilepsy, because it's just a bizarre situation. I think, if they'd known at that time there'd been no laughs. People always say kids are really, kids can be really cruel and hurtful but, I've never been picked on, I've never had problems with anyone.

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...

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Age at interview: 20

Sex: Female

Age at diagnosis: 11

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My school weren't very useful, chiefly because I don't think the teachers often realised when I was having a seizure, which didn't really get better at all when I was at school they were just not very good. Which I think is difficult on them because it is difficult to recognise when I'm having a seizure if it's only for a split second, but it meant that they weren't very good at working out when I was seizuring and how that might make things difficult for me. So really until the 6th form when I kind of had extra times on exams, I kind of had to explain them quite, not firmly sounds like too aggressive, but really articulate in detail what I needed and how things were more difficult. And once they understood they were really helpful and wanted to do, there was never hostility, but it was just more because its not a tonic clonic seizure in the way that you can isolate it and understand, it was more subtle. So I think it makes it difficult for people to get their heads around it. Which makes it difficult if you're kind of a young sufferer. It was easier when I was older, from being eleven, twelve, thirteen, it was quite difficult.

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...

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School was very difficult for Donna. Because of her medication, she often felt tired, couldn't...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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School was always very difficult, I always found school very difficult because of the tablets. Most of the time I was tired and drowsy, my concentration was terrible. As I got into High School, I just couldn't concentrate I really, really struggled. I mean at one point I used to lose the control of my bladder which wasn't very nice. Especially when you're fourteen, fifteen, at school, that was awful. Things were taken away from me like swimming, they wouldn't allow me to swim, at school because of my epilepsy and that. I loved swimming so that was quite difficult, 'cos I'm not a very competitive sporting person, I like to do things on my own like running, swimming, so I found that quite hard. Couldn't do trampolining and I really wanted to have a go, so I weren't very happy about that, watching all my friends jump up and down, so anyway I plodded along.

Ben's dad says that school was very difficult for Ben. He was very active, and found it difficult...

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Age at interview: 22

Sex: Male

Age at diagnosis: 14

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Dad' There was a lot of negative stuff coming out from his schooling, other members of the family, so it made life very difficult. Ben didn't seem to help that by being very, as I say, very active, very mischievous, very difficult to control. I mean in classes he was getting in all sorts of bad reports from school over Ben's inability to sit still in class, he had this butterfly brain, couldn't concentrate. Obviously we know now that it could well have been linked with the condition which later developed at the age of fourteen. But of course at the time it was, you know Ben wasn't fitting into this system which required a certain perfect child to be able to sit still in a class and follow the lessons through, calmly and quietly. We were having the same sort of thing at home and it kind of came to a bit of a head about the age of sixteen.

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...

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Age at interview: 20

Sex: Female

Age at diagnosis: 18

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I found school incredibly hard. It was the fact that people didn't understand what on earth was going on. I eventually had to leave school early due to it when I was about, well when I had about six months to go, in year 11. I was quite a popular person and well as people know, the popular people are incredibly fickle, and once I'd got epilepsy there was a lot of sort of peer pressure on me sort of drinking and stuff like that, and I couldn't due to certain, well due to the epilepsy. And there were some certain incidents where I did drink and I'd go into a seizure and my friends found it incredibly stressful, they didn't understand at all about it, and I did lose all my friends due to it apart from a couple.

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...

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Age at interview: 22

Sex: Female

Age at diagnosis: 16

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I returned to England, it was a great relief, the thought to start my new term at my A' levels. Again I don't really remember much of the circumstances but I know it was a very difficult term. In the way that I was working, I felt that I wasn't' the same student that I had been. That I wasn't able to work the way that I had been, it seemed to me. And I question to this day how much of that was more of the balance between the psychological blow of finding I'm an epileptic, disabled, as it's only until recently that I've come to terms with these as terms that are applied to me. For many years I was in denial, I'm like every other human being, it's not an issue, it's something you lock in the closet, you put it under the table, you sweep it under the rug, it's not relevant, it's not here. But if something had obviously changed yes I wasn't able to cope with my studies anymore which was the most terrifying blow of all. And because of that I had to have a period out, which back then I suppose it did feel like a failure.

Morven had wanted to do History and Art at university but, because of problems with her memory,...

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Age at interview: 21

Sex: Female

Age at diagnosis: 8

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I did get a bit of an extension on my exams when, when I was going through that because of how hard I found it to remember all the information that I needed to remember. And that did seem to help me. I mean I still got a good amount of the qualifications I was looking for. I didn't really be, end up quite as clever as I was when I was at primary school, and expected to be when I was older. 'Cos I mean when I was leaving primary school and starting high school, I was expecting to be able to go to university and stuff, 'cos I was practically as high as you could go for like all the, not exactly wonderful subjects but ones that were you know good enough to get you into university. But as I got higher into like 3rd, 4th and 5th year, that's when things just didn't actually work out very well 'cos I couldn't remember enough of the subjects to get the qualifications.

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...

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Age at interview: 24

Sex: Male

Age at diagnosis: 14

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I have to say I did [feel different]. Certainly in terms of the sporting aspect, I did feel different, because I was willing. Quite a few people just dodged doing sports, or you know, were just complete outside this. And then obviously just dodged it. But I was one of those people who was barred, by a condition, it's like an invisible, screen that I couldn't quite get across, certainly in my fourth year. It was all rosy when I got to my fifth form years so I was, beating people up, you know, in the scrum or whatever so [laughs] yeah. But I did feel different, certainly that those first three or four months when I was back at school with the condition, you know.

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.

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Age at interview: 17

Sex: Male

Age at diagnosis: 6

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College, it's okay. I prefer it a lot more then I did at school. School I went to was special needs, the work was too easy for me in a way. I just thought this work is too crap. I just can't stand it. I just wanted to leave this school but, 'You can't 'cos your behaviour and all that'. I was like, 'Yes, I just wanna go, because I have had enough doing it, having work that is like nurseries.' I just couldn't cope, being at school.

Bullying

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...

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Age at interview: 20

Sex: Male

Age at diagnosis: 7

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Harry' It [bullying] did upset me, I think it made me angry and I have a lot of hatred towards people. It did actually change me really I think.

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...

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Age at interview: 20

Sex: Female

Age at diagnosis: 13

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I started school not knowing I had epilepsy and then pretty soon into the high school I learnt I had it, and I had a seizure in one of my classes and my teacher, wasn't that really aware, didn't know about epilepsy, I don't think he knew I had it and it became an issue and obviously bullying sort of resulted from that. It was quite difficult.

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...

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Bex's local epilepsy support group had organised a nurse who would go to schools or youth clubs...

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Age at interview: 20

Sex: Female

Age at diagnosis: 13

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My local epilepsy group were quite supportive. They always offer a service and your nurse will come and teach your teachers or if you have got a youth club, you can have leaders there and learn about epilepsy and things. So the teachers were quite open to learn about things like that and I think they did their own course, you know, because we were going to bring in the people, but they went on a course. And they often had, there was another boy in my year that had epilepsy and he had it quite bad as well, so they sort of knew about us both and they would have meetings about us, which was kind of weird actually but it was nice to know that they wanted to do something and were prepared to help. There was that one teacher in particular that really wanted, you know he did go out the way to help, especially after having the seizure he realised that he didn't know a lot and it was important to know a lot about it, because it is so common you know. I think that is something that has improved you know. More a lot more people know about epilepsy now then they did, you know, quite a few years ago now so'

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...

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Age at interview: 17

Sex: Female

Age at diagnosis: 16

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The last one I had at school was at the end of break time and we have quite a large common room. And on one wall there are lockers which the friendship group I'm in sit probably inconveniently in front of them. And everyone was going off to their next lesson and thankfully I was sitting down, but I had quite a major seizure into headfirst the lockers, and I was totally out of it so I don't remember much of it but, apparently the firstaider came up and they took me down to reception and just phoned to say that I was going home. At one point I thought I was going insane when I first sort of came around afterwards 'cos there was a vibrating by my head, which turned out to be my friend's phone 'cos I had also landed on her bag. But people were really supportive, there were people that sort of didn't know me that were, you know, saying, 'You okay?' And had apparently said to my friends that they'd go to reception for, and that sort of thing. So it was really nice to know that even people that I don't necessarily know were being supportive so that was really good.

Cyberbullying

“Cyber bullying is when a person, or a group of people, uses the internet, mobile phones or other digital technologies to threaten, tease or abuse someone.” - Childline

Cyber bullying can happen 24 hours a day, seven days a week if you use the internet or a mobile phone and can leave you feeling scared and unsafe even when you are at home.

For links to more information and support on bullying and cyberbullying, see our Mental health and wellbeing resources on our resources page.

Last reviewed May 2016.
Last updated March 2012.