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Epilepsy

How epilepsy affects others

The reactions of other people to someone with epilepsy can have a profound effect on how they feel about themselves and their condition. How others might react can also affect whether they tell people about their condition or choose not to.

Many of the people we interviewed mentioned the lack of understanding and knowledge of epilepsy among the general public. Concerns about stigma and ignorance were also often discussed. Being open about epilepsy and raising public awareness of the condition were seen as important steps to correcting misconceptions and myths.

 

Discusses her concerns about the stigma and ignorance around epilepsy.

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Age at interview: 42
Sex: Female
Age at diagnosis: 6
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And yes so the stigma does hang over, you've got to persuade people that there isn't a reason to be frightened, there's nothing to be scared of. And of course when you see somebody having a major seizure the instinct is to go forward and do something, its very hard for people to understand they've just got to let it go with the flow and there's nothing they can do.  So that confuses people as well about the nature of what a seizure is. 

And this stigma, there are still too many silly myths that are connected not necessarily in people's conscious awareness but in the background of their minds, this idea of witchcraft etc., is still there floating around in the atmosphere, in the air you know. The idea that because it is something affected by the central nervous system, affected by something in the brain, therefore there's a connection with mental illness.  

And this is happening even now, time after time, I'm coming across either cultural taboos or social attitudes which put pressure on people that just don't need to be there. You don't need to be a medical specialist to understand the basic social rights and values which are just not allowed, and as I say that surprises me still.

 

Emphasises the importance of raising awareness of epilepsy.

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Age at interview: 39
Sex: Female
Age at diagnosis: 25
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I think a lot of people, I said earlier that I think people think that epilepsy, because its the brain and because it does sometimes go with cerebral palsy and Downs Syndrome and other neurological things, people think, they don't expect somebody who looks, well whatever 'normal' is to have epilepsy. And I think, and there's a lot of famous people with 

epilepsy, past and present. I mean Charles Dickens had epilepsy, Edward Lear, Byron, Joan of Arc, you know, Einstein, Julius Caesar. Its supposed to be a sign of great intelligence, I'm not quite sure where I fit into that, but you know if people with epilepsy could make, Rick Mayall for example, could stand up and say, so that people, youngsters could see that famous people, pop stars, actors have epilepsy as well. If there was just more awareness in that direction. You know, even if it was just talked about more and I know a lot of people with epilepsy won't talk about it. I don't think Rick Mayall really wants a lot of people to know about his epilepsy, um. Max Clifford also has epilepsy and notice I say has epilepsy, I never say is epileptic because I think that's a bit of a label as well, you know. Get more public awareness, talk about it more you know, bring it out in the open, in shows like Casualty and Peak Practice.

And maybe documentaries?

Yes, definitely, yeah 

Speak to, never ever hide your epilepsy. Always talk to people, because by talking to people, just getting the word epilepsy mentioned is great in itself you know. Just never cover it up, hold your head up and just be proud to be, you know, there'll be people who don't understand but they're not worth knowing and if that's the way they want to be, then its best you don't have anything to do with them. You know just don't ever be ashamed of it I think. 

Many felt that, although people were generally more aware of epilepsy now than in the past, more information was needed to promote better understanding. People often talked about the lack of understanding among the general public as well as friends. Several people explained how friendships had been affected. One man discussed losing some friends but becoming closer to more loyal people.

 

Explains how her epilepsy affected friendships.

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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Did it effect your friendships?

Yes it did because a lot of people didn't understand what was going on. It began affecting my friendships before I was diagnosed because my behaviour was getting a bit erratic if you like. Not that I noticed but they apparently did, so I wasn't considered socially reliable if you like or reliable to behave, you know, appropriately. Well I didn't do anything drastically wrong. I just said the wrong things and didn't follow the conversations and I always seemed about three or four steps behind or whatever. So it did have a serious effect on my friendships because no one knew what was going on and I retreated, they retreated, you know, that's about it really. 

 

Talks about losing some friends but becoming closer to others.

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Age at interview: 28
Sex: Male
Age at diagnosis: 15
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I've had this way of going around by just telling, well its like everything else, at first it was very hard for me to come out and state to friends, close friends, that I was an epileptic, a person who had seizures. And this was a tough time for me. But I had, I've got some really close friends in my life now that have, that are actually with me and support me through it. They say 'We're not worried about it, we'll help you with you, with it at the point you need help,' and stuff like that. But I've lost some friends through it, I must admit. But I've gained more, more friends, more loyal friends and I cherish them, I really do, I really do.

Intimate relationships were also a concern for some people. One man recounted how different girlfriends had reacted to his epilepsy. Another discussed how the reactions of others and his lack of confidence had affected relationships.

 
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Contrasts the reactions of two different girlfriends to his epilepsy.

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Age at interview: 32
Sex: Male
Age at diagnosis: 24
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When it first started I was 24, I was single at that point in  time but then went out with a girl a year later and that was, she was very good about it.  And that was very helpful to me, she was the first person outside of the family that knew about it and that, it took me quite a long time before I told her (laughs). I would have to avoid it and for a while, I tried to remember situations where it happened, it generally happens first thing in the morning or late at night and it will happen, it will often happen when I'm shaving. Anyway so I was saying, I went out with this girl and she then had to cover for me when it was happening in front -  because I hadn't told any of my friends - so she would make some excuse for me. And it wasn't until I was almost 27 that I actually started telling some friends, that was the key people, and since then I've taken the approach of being quite open about it. 

Then the next girl I went out with when I was about 27, for her it was an issue. She came with me to the hospital and she was very uncomfortable sitting in the waiting room. There was a video playing at the time showing epilepsy and it was, she didn't like what she was seeing and that became an issue for us. And when we actually split up it was quoted as one of the reasons why we were splitting up. 

 

Reflects on how the reactions of others and his lack of confidence in making relationships.

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Age at interview: 31
Sex: Male
Age at diagnosis: 12
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To be honest, like I say, I'm not a loner and I do get frustrated when you get to, if you, I mean I've tried dating agencies and stuff and they have, you know you go to somebody and they actually, you meet up with these people and you go on these dates and you know, I'm not afraid to tell anybody that I've got epilepsy because if they don't like it they 

can lump it. 

Like I say every time you meet someone, as soon as they find out you've got epilepsy its sort of, the national sort of lack of understanding of it um, really sort of, its sort of you know they tend to run a mile. And if I don't tell them - and they say yes, plus of course you don't drive, you know I'm so immobile. 

But I think sort of relationships are difficult. I've never really been able to sort of form friendships when you've got those like sort of one-on-one. My brother's got you know like his best friend, he's like as close to him as he is to sort of you know to me and the rest of my family. And I've never really been able to forge that sort of friendship. And you know it may well be that may be purely down to me but I'd uh, more of me thinks that because the crisis of confidence because of the epilepsy, I think that's where my lack of confidence really comes from.

Some people described the negative attitudes they had encountered in the street or at work. One man said that his church group had been unsupportive. People felt that a lack of understanding made epilepsy frightening for other people, especially if they did not know what to do if someone was having a seizure.

 

Finds that epilepsy can be frightening to people when they know little about it.

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Age at interview: 30
Sex: Female
Age at diagnosis: 9
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I must admit I told my close friends and I did actually lose friends. The first time they saw me in a seizure, they didn't want to know me any more. And I thought they were friends. So childhood was lonely, and to a certain degree adulthood as well, because of the stigma. 

Did you tell many people or you know how have you dealt with that side of things? 

Most people do know. If I feel that they're not gonna cope with it I don't say, but obviously if they are quite close friends they need to know. I don't try and hide it, there's no point. The more people that know, the less stigma there will be attached. 

And you said your family were really supportive, during that time. Have you found support in other ways, you've mentioned the family and the support group, have there been other people or other things that have been good for you? 

Friends support me. And my neighbour, she supports me tremendously. But outsiders I'd actually say no, because they would rather walk past you in the street than help. There are a few that do help but not that many because they don't know; they're frightened. Nine times out of ten they think you're drunk. 

Some explained how they told others about their epilepsy. One woman, who had poorly-controlled epilepsy and a Vagus Nerve Stimulator (VNS), told her local shopkeepers what to do if she had a seizure in their presence.

 

Recalls how she told some colleagues about her epilepsy.

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Age at interview: 30
Sex: Female
Age at diagnosis: 17
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When I joined the firm I joined I went on a, after a few years, I went on a training course and we had to tell the group something at the beginning of the course. We had to tell the group something about ourselves and one guy said 'I turned down premiership football to work for this company, age 17, and now I work for this company'. And everyone had different things like 'I can't roll my tongue or whatever.' And I said 'I've got epilepsy and by the end of this week you'll all know what to do when someone has a fit.' And this girl came up, who was in the room next door to me, came to me that night and she said 'You are so brave.' And I said 'Why?' And she said 'Because I've never told anybody that I have epilepsy.' And to me you're putting yourself in danger. What happens if you have a fit you know in the middle of a store, you know people would be so frightened. I don't want to go to hospital every time I have a fit. I don't need to go to hospital, it's a waste of money and I don't wanna be there. And if she had a fit then who knows what would happen.

So do you carry anything?

Yeah I carry a card which says 'I have epilepsy,' I don't have a bracelet or anything, but there's a card in my wallet. And in my diary it says 'I have epilepsy'. 

Have you found people generally to be quite helpful or? 

I've never met anyone who has taken a disliking or a, offence isn't the right word, but taken issue with the fact that I have epilepsy. If anything they're fascinated by it.

Many of those interviewed felt that being open about their epilepsy helped them and might also help dispel ignorance about the condition. Several people stressed the importance of distributing information on epilepsy in schools, in the workplace and in the media.

Some people said that they had not come across any discrimination or negative reactions because of their epilepsy. Others explained that, although they did not keep their epilepsy secret, they generally only told those people who really needed to know. Several people pointed out that they did not want people's pity, and rejected the stereotyped images people can have of someone with epilepsy.

 

Explains that his epilepsy has not led to any discrimination.

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Age at interview: 45
Sex: Male
Age at diagnosis: 26
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I haven't yet come across anybody showing any discrimination against me. My wife said an interesting point to me a while ago' 'I wonder what people's attitude would be like if they actually saw you having a seizure?' Which was quite an interesting point, but no I haven't had any problems with people at all. Maybe its because I'm quite open about it and relaxed, then that certainly helps when you bring the subject up, and its quite interesting dropping the subject into a conversation to watch people's reactions, its very interesting.

Because of the stigma subject, the first thing I did actually when I was diagnosed was I actually went round everybody at work and actually told them about it. I wanted them to know what to do if I had another seizure. I certainly wasn't frightened of telling people because at the end of the day it was in my interest, its one of those things where you want people to know what to do. The people who I work with are professional people, they are not people who would, who I would think would be critical of people just because of a certain type of health. They were very supportive, very supportive indeed.

 

Explains that she does not want pity, and dislikes stereotyping of people with epilepsy.

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Age at interview: 46
Sex: Female
Age at diagnosis: 18
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And of course word gets round and I think my husband said 'Oh she suffers from epilepsy.' 'Oh you poor thing,' that, please that's one thing I don't like you know, because before you know it you'd be a right disabled, they'd have you put down in sort of categories, well you're in a wheelchair and oh my goodness. Or you'll get someone say 'Oh you don't look like an epileptic.'  And I'll say 'Well what does an epileptic look like for God's sake?' Thank you very much! (laughs). And I must be honest you know, when you go to sort of these places sort of thing, I know you are, people are, they are sort of branded with things, I suppose because they don't sort of see you and then when they hear about it, but in time.  I just say 'Oh well its just one of them things sort of thing.' But I haven't tried to hide it if they ask me I'll.... 

One man explained that he had only recently started telling people about his epilepsy. Like many others, he wanted epilepsy to be perceived and treated like any other condition.

 

Explains that he has recently been telling people about his epilepsy and says epilepsy should be...

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Age at interview: 52
Sex: Male
Age at diagnosis: 15
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As soon as I retired, then I didn't care telling, who I told because it didn't matter any more. My career was over and that was the only thing that was, you know I had a pension so I could live OK. So it didn't matter and then I could, I was able to stand up. It was pretty cowardly, but that was when I was able to stand up and say 'OK is there anyone I can help' 

...I haven't totally come out, I haven't told everybody. You know the people next door don't know. The guy this side does, its not easy, its not easy to say and I don't want to be going around saying 'I have epilepsy' with a big badge. It's got to be done in the right sort of way. But when people now talk about their child has epilepsy, I can actually say, 'I do understand what you're talking about because I've had epilepsy for most of my life'. And its amazing how many times people look back at me and say 'No, you, really but you were a headmaster,' and you know this amazement that I'm sort of relatively normal, I haven't got two heads! (laughs). 

And I would also like epilepsy to be on a par with diabetes and asthma and all the other things that we talk about so openly and people say 'oh I've you've got' blah, blah, blah, you know I'd like that to happen. And that starts partly in the school, partly in the media and obviously partly in the home.

Last reviewed May 2016.
Last updated March 2014
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