Epilepsy in Young People

Awareness and misconceptions about epilepsy

Here young people talk about general (lack of) awareness of epilepsy and describe some of the ways in which they deal with other people's reactions to or misconceptions about epilepsy. They also talk about the ways in which they discuss having epilepsy with other people.

Lack of awareness and misconceptions

Most young people felt that there is a huge lack of awareness about epilepsy. Some pointed out that the general ignorance about epilepsy sometimes explains why people don't know how to behave or react - it's not because they are deliberately mean. One person said that ignorance can cause fear and if people knew more about epilepsy, they could deal with it better.

Helen says people have many misconceptions about epilepsy and don't know about it in the way they...

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Age at interview: 23

Sex: Female

Age at diagnosis: 22

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Epilepsy is a difficult label because there is so much stigma attached to it. There's so much and when you tell people that you've epilepsy they act in a completely different way. They almost expect as though the minute you've said it that you're all of sudden going to fall down and start shaking and foaming at the mouth and things that don't really happen. And in terms of that it's a difficult label to deal with. There is so much ignorance about it. I mean if you say that you've diabetes I mean people know that you can't deal with sugars and if you say you have hay fever, you know you have asthma they know that you have breathing difficulties. If you say you have epilepsy they don't know what that means. They don't understand it. There's no understanding behind what that means or what's gonna happen to you and so it's such a difficult label to deal with.

Gemma says people who don't know much about epilepsy can be harsh but thinks epilepsy is more...

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Age at interview: 17

Sex: Female

Age at diagnosis: 16

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I think it's just with lot of things, you know, if you haven't really got the condition and you haven't experienced it I think people just don't quite understand and people can sometimes be a bit harsh in the way that they say things just because they don't understand. I think not long ago epilepsy was something that people were almost scared of, but I think it's a lot more, there's a lot more information now and people know a lot more about it so I think it's more accepted if you like and people find it to be okay and I think people with epilepsy can get along fine really and but, you know everyone needs to make sure that people around them do understand what it is so you can avoid awkward situations really.

Some felt that, because people generally knew so little about epilepsy, they didn't understand some of the small ways people with epilepsy had to avoid triggers, or lifestyle choices they made.

Maria says it can be difficult for others to understand the subtle ways in which epilepsy can...

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Age at interview: 19

Sex: Female

Age at diagnosis: 18

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It [epilepsy] definitely has changed my life in ways which, it's sort of taken away things which I hadn't appreciated before. I think other people my age who, who know that I'm ill, they sort of find that hard to sort of understand the subtle ways in which it's sort of changed my life. And I suppose unless it's something that you're experiencing, it's a bit like, “Well what's the big deal?” Because I don't have say tonic clonic seizures, my seizures are quite subtle, and since being on my medication I haven't had a proper seizure. So I think unless you really think about it, it's hard to see how it affects your life so much., and so that's one of the reasons why I only told sort of close friends, is because I think, well firstly there is still quite a lot of stigma, and they sort of, I think a lot of people assume that if you have some sort of neurological problem that you must be a bit stupid or something, you know [laughs]. But also because I think it's very hard for young people who don't have epilepsy to really appreciate how the small things can actually be really difficult to deal with.

When telling people about their epilepsy, many found that others had some wrong ideas of what epilepsy is. Some common ones were that people immediately associated epilepsy with photosensitive epilepsy (“it's the flashing flights….”) or with only tonic-clonic seizures. This made some people worried that others might actually do harmful things if they had a seizure, for example sticking fingers or a spoon in their mouth. This could in fact be really dangerous.

A few had also come across some very old-fashioned religious beliefs about epilepsy being caused by the devil or evil spirits. Some said they just laughed at these 'ridiculous' ideas, others found them very hurtful. One woman had been asked if epilepsy is contagious and she had just made a 'sarcastic comment' back to such an 'ignorant question'. Some people had also been accused of being drunk or high on drugs when they were confused and stumbling on their feet after having a seizure in a public place (see 'Experiences of different types of seizures and auras').

Francesca feels that people quickly jump to the wrong conclusions about epilepsy when they know...

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Age at interview: 20

Sex: Female

Age at diagnosis: 18

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Do you come across lots of sort of ignorance or misconceptions people have about epilepsy when you tell them or when you talk to them about it?

Well yeah, and I think the major one is as I say that they don't think that there's are any other types of seizures other than what they sort of perceive a seizure to be. And also for myself it is if I do have a seizure is being called a drunk afterwards, you know most of the times I haven't drunk anything before a seizure and I think people are kind of quick to jump to judgements about how you are or how they think you are, when really you are nothing, you know. You are just a normal person really with just something else going on.

What could they think about the sort of person you might be then?

I am not sure really, but you can kind of sort of see it in people and they, I think they treat you differently as well and I think that is the major thing, and really you just sort of want to be left alone to get on with things, you know, but it is this kind of sort of wrapping you up in cotton wool type thing that people tend to do.

Talking about epilepsy

Many young people wanted to talk about having epilepsy with other people. Some people talked openly about their epilepsy with pretty much everyone, a few had only told a couple of their closest friends but most said they only told people who needed to know. People preferred to talk about epilepsy only with those they trusted to be sensitive and understanding, and with whom they were likely to spend a lot of time, like housemates, who needed to know what to do if they had a seizure. One woman with nocturnal seizures said,

“People don't really get told about [my epilepsy] unless they're close to me or they're going to be seeing me just throughout the night.”

A few people said that they wanted to get to know new people first before telling them about their epilepsy. They didn't want to introduce themselves as, 'Hi - my name is Sam and I have epilepsy' and be known as 'the girl/boy with epilepsy'. For more about young people's experiences of talking about epilepsy with their friends and their friends' reactions, see 'Friends'.

Anna tells most people about her epilepsy. She says getting 'the balance right' is important,...

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Age at interview: 20

Sex: Female

Age at diagnosis: 11

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I've never felt shy about telling other people. I think what I do get worried about is if I kind of make, I'm worried about making too much of a big deal about it in case people think that I'm fixated on it or anything. So I just try and say enough that people understand what I'm doing, the kind of seizures that I'm likely to have and what they should do about it, and then I don't need to talk about it again. But I try and to tell people before otherwise they feel awkward or some people can kind of felt left out if I've not told them. You know, so I just try and tell everyone without inflicting it on everyone and sort of making you know like a huge deal of it.

What do you mean by sometimes being worried that people think you're fixated by it?

I worry sometimes that because it's both a huge part of my life because it means that I can't drive, and it means that I have to be aware of telling people, but at the same time I don't want it to be, apart from the things where it has to be a problem, I don't want it to intrude any more. And I think people have known me for years and haven't noticed, or haven't needed to know and I quite like that. I'd like it to be as kind of as have minimal importance or significance and so I don't want to be the girl with epilepsy. Although I do want people to know how they can support me and just know more about the condition, and how that might change, how they, sort of how we interact and things. Which I think is, I don't know, maybe it's a perception that I'm more conscious of it than other people are. Kind of getting the balance right.

Most people said they were careful about who to tell about having epilepsy. Some worried about other people thinking that they were making a fuss about epilepsy or wanting them to feel sorry for them. Some had become wary because they'd experienced people changing how they behaved towards them after they'd told them about epilepsy. Sometimes it was very subtle; being awkward or gradually distancing themselves. Some said that people can also be scared of seizures when they don't understand what happens and what to do. A couple of people described how others pretty much expected them to fall to the ground in a full seizure the minute they mentioned they had epilepsy.

Dave says it varies how soon he tells people about his epilepsy but he usually prefers to wait a...

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Age at interview: 24

Sex: Male

Age at diagnosis: 12

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I prefer, I will tell 'em eventually, but I'm not too sure about telling them straightaway, 'cos it's like I said, I don't wanna scare people. But at the same time, it's why I put on my profile that I've got the epilepsy because I want people to know, I'd prefer people to know, so they'd know in advance and not get scared talking to me, I mean. People I've talked to have generally been quite good they've said you know, 'Why would it bother them?' but you know. It's just that I want them to know that I've got it you know. Some, some cases I'll tell them, some cases I'll leave it for a little while and then tell them. I mean a lot of people seem to know about my other disability, my left side because of my hand, they can normally tell about my hand that I'm disabled [hemiplegia].

Some had told pretty much everyone that they had epilepsy, including friends, employers and colleagues, and had never had negative responses. One man said he always tells people and, “If it's a problem, it's theirs, not mine”.

One woman pointed out that even if she doesn't tell people she has epilepsy, people around her will find out sooner or later because she'll have a seizure. Another woman said that having a seizure alert dog makes her otherwise invisible epilepsy visible, and open to questions from strangers that would otherwise not get asked.

Last reviewed May 2016.

Last updated May 2010.