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Epilepsy

How epilepsy affects education

Some of the people we interviewed had been diagnosed with epilepsy as young children. Here they discuss their experiences of school and education.

Partial seizures occur when only a part of the brain is affected, and consciousness is not lost but may be impaired or altered. For a teacher, this type of seizure may be the most difficult to recognise and identify. A change in consciousness may lead a young person to behave in a manner that may simply be thought of as silly or disruptive, such as fiddling with clothes, lip smacking and acting as if drunk.

Generalised seizures occur when the whole of the brain is affected and consciousness is lost. Absence seizures are perhaps the hardest generalised seizures to detect as they involve a brief interruption of consciousness, the only sign of which may be a fluttering of the eyelids. It may look as if the young person is daydreaming or lacks concentration.

Several people had a difficult time at school for a number of reasons. If they were mocked or teased by other children and teachers did not know about their epilepsy, their self-confidence was often affected. Some also felt that anti-epileptic drugs affected their memory and ability to concentrate.

 

Describes the effects of medication on his schooling.

Describes the effects of medication on his schooling.

Age at interview: 31
Sex: Male
Age at diagnosis: 12
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And from then on really for a few years at school it was a bit of a hard time you know. The first time I had one at school it was all like hilarious and obviously I was only on minor medication then. And that was, that was quite hard for sort of somebody who was like 12. 

And it got better but I mean there's, sort of there was, you know you still got some really negative remarks and sort of like Mickey-taking. And then, as it got, I mean sometimes some of the teachers hadn't been informed which was very poor, although the head teacher had been informed. And so I mean that was hard. Plus the fact that at the time I was on enough medication to really you know, to sort of knock out a bull elephant that I used to... Well, there's no documented evidence but it you know dramatically it's affected my schoolwork. Because it is quite noticeable how it went down hill from then on.  Medication you know, sort of like basically nodding off all the time, well not all the time but you know, but it was like I don't have any trouble sleeping.

One woman, like several other people we interviewed, explained how she would be told off in class for having seizures when she and the teacher were unaware of her epilepsy. Several people recalled the lack of information on epilepsy at schools. One woman explained how she rebelled at school, and described her feelings now towards her teachers.

 

Describes being told off in class when her teachers were unaware of her epilepsy.

Describes being told off in class when her teachers were unaware of her epilepsy.

Age at interview: 49
Sex: Female
Age at diagnosis: 14
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Anyway time went by, until in the end, and I was probably about 8, 9 or even 10, when I could be in class at school and the teacher would say "I want you all to do your English and what you don't finish in class today I want you to do it at home and then you bring it into school tomorrow." Well I had obviously had a seizure but I wasn't aware of it, the teacher wasn't aware of it, my parents weren't aware of it because I can remember her saying "Do your English and what you don't finish today," but the rest was completely, like I just didn't hear it, it was as if I'd gone deaf you know, I just didn't hear it at all.

So I would get told off for something in school for something I didn't even know I'd done wrong. And then by about the age of I'd say 12 and 13, I started to probably have worse seizures because I started to push things away that were in front of me. So if I'm at school and we're doing a really boring history lesson or something I would have a seizure, not knowing I was having it. I had no lead up to it at all, apart from this funny smell of seaweed, but after all my sisters told me I was daft so therefore I had to ignore it. And I would push everything off the desk in front of me you know the pens, the paper, the books. And I was told that I used to say "Yeah I know, I know," but I didn't know I'd said that and I didn't know I'd pushed the books off the desk. And it was probably only a couple of minutes would pass and I would be sitting there in class, the teacher would be standing next to me giving me a good telling off for messing the class up, and I would be thinking who's pushed all those books off the desk. So that to me was a very, very weird sensation. 

 

Discusses rebelling at school and her feelings towards her teachers now.

Discusses rebelling at school and her feelings towards her teachers now.

Age at interview: 48
Sex: Female
Age at diagnosis: 10
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I rebelled quite a lot at school. I found that the only way to, for me to survive was by pretending that nothing really got to me, that I was as good as the next person, if not better. And so instead of being able to be my own personality I had to be this rather hard person who joined up with a group of girls who seemed to be really quite sophisticated, doing things that I would never want to do. But I just pretended I was also doing them, and getting into trouble with the teachers. I passed a few 'O' Levels, I think I got my two English 'O' Levels and cookery and the rest of the exams I failed. Exams used to cause me to have seizures, the tension and the fright, the fright of them. 

...With my schooling, I feel very, very angry about my schooling, I would love to be able to contact a couple of the teachers. One, to ask one of them have they ever considered how discouraging and how damning they were being to me. And to the other one to apologise for not being able to take up the offer which this lady made to me, that she said she would be happy for me to, I wasn't allowed to go in the swimming pool with the others, but she did say that she would be happy for me to go in afterwards by myself and she would watch me. Well as a 14 year old girl I didn't want to go into a swimming pool after everybody else had got out, and be watched by the teacher, but it was a very kind offer when I think back to that and I'd like to tell her that it was very kind. But I've got an immense amount of anger in me, which would be good to, and I am trying to get, to deal with it. I'm accepting that its there and I am trying to deal with it. 

People also discussed the challenges they faced at school because they had epilepsy. One woman said that her teachers were helpful and understanding, but that the stress of exams would bring on seizures.

 

Discusses some of the restrictions at school because of her epilepsy.

Discusses some of the restrictions at school because of her epilepsy.

Age at interview: 30
Sex: Female
Age at diagnosis: 9
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In school I sort of had an awful lot of taunts from other children, I was called spastic etc. I had to work very hard at school due to the fact of a poor memory, which is associated with epilepsy. And stress, especially when it came to senior school around exams times my seizures  really increased. I was restricted from a certain amount of activities during school. I wasn't allowed to go to Truro because of the dangers of pot-holing etc. Certain PE activities I wasn't allowed to do.

 

Recalls that her teachers were understanding but that stress brought on seizures.

Recalls that her teachers were understanding but that stress brought on seizures.

Age at interview: 42
Sex: Female
Age at diagnosis: 6
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School was always very useful, very helpful and then again, so it's not something that's stuck in my personal memory as being a problem when I was younger. Looking back I know that it was because it means I missed a lot of my primary school years. And certain things I wasn't allowed to do like going swimming with the class. You know the worst thing I can remember about school was having to do hockey twice instead of having to have that once a week. 

'I suppose education was, the big restriction was round about exam times, because most of those I got quite literally carried out of. And by the time it came to doing things like 'O' Levels and 'A' Levels the school had been kind enough to work out a system whereby I was taken out of the alphabetical order of people, put at the door that was nearest the back of the class, nearest to the door and the three male teachers who existed in the school were always just outside the gym room door ready to come in, grab me and drag me out again as soon as the seizures started you know. 

Which meant that you know I had to repeat quite a few exams. I missed quite a lot of them. Even the ones I repeated I had seizures during and so my qualifications I feel could have been better but for that. And I always used to have a strong feeling about, in the same way continual assessment would have been a better idea for many people like myself, I still think it would be.

One person told us that she attended a school for people with epilepsy. Two other people discussed the experiences of their children who had learning difficulties. One of these women described how the teachers reacted to her daughter's seizures.

 

Tells how teachers reacted to her daughter's seizures.

Tells how teachers reacted to her daughter's seizures.

Age at interview: 15
Sex: Female
Age at diagnosis: 7
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I didn't rally know what to think. School weren't awfully good with her. One morning they rang me up from school, they'd found her on the floor in the toilet, with her head between the toilet and the wall. And the teacher had rung me up and said 'Me and my colleague have been discussing it and we think she's doing it for attention.'! (laughs). Which I was really amazed at because if she'd been doing it for attention she would have done it where she could have been seen - not!

What was happening at school?  What had the teachers been telling you was happening at school?

They weren't really telling me a lot, they were again making me feel over-protective. I don't think they understood why I was making such a fuss. But it was like, in assembly one morning, because, I suppose because she has a younger sister that I knew what was going on. If it had just been her she wouldn't have been able to tell me because she couldn't remember. Her sister would say to me 'She had quite a bad fit in assembly and they just left her.' They just left her, because everybody was like on the floor cross legged, she'd be standing up and spinning round and they'd just leave her. They wouldn't do anything with her at all and then afterwards she'd be very, very tired and they didn't understand why.

Young people with epilepsy might achieve as much as any other young person without the condition. Several of those interviewed recalled being determined to take and pass exams. A few people also discussed working hard and going to university.

For more information on how epilepsy effects education see our section on young people with epilepsy.

Last reviewed May 2016.
Last updated May 2016.

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