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Epilepsy in Young People

Friends and epilepsy

Here young people talk about friends and if, or how, having epilepsy affected their friendships. They explain how their friends had been there for emotional and practical support, to share experiences and just to have fun with! 

Sharing, support and having a laugh

For many young people we spoke with, friends were the most important source of support, sharing and encouragement, and many said they couldn't have got through their experiences without close friends. People felt the most comfortable talking to friends about their feelings on living with epilepsy, seizures and difficult times. 

 

Kirsty can 'have a little chat' with her friends whenever she wants. Not all her friends know...

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Kirsty can 'have a little chat' with her friends whenever she wants. Not all her friends know...

Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I've told some people, yeah, but not everyone, because I don't want them to think oh she's telling me, she wants me, she wants them to feel sorry for me. I just, I just act normal with them, I don't, I've told some people, only my closest friends, but I don't tell everyone cos I don't want them to feel sorry for me, I don't want them to act differently towards me and be wary around me, so I just keep it to myself mostly around some people.

So, the friends that you did tell, your best friends, what were their reactions, or how are they about it now?

They're fine with it. People don't really act that much to it, because it's quite common now anyway. They didn't really act, they just said oh you know if you want to talk I'm here, if you need anything. And they all give me lifts in their cars and stuff cos I'm not allowed to drive, so I can use them for that, but, they're fine with it. Absolutely fine.

And they're, are they quite sort of supportive as well.

Yeah. Definitely. 

Emotionally? 

Yeah. If I want to talk to them they'll say oh come on over have a little chat about it and then I just chat with them.

A couple of people said that they didn't want to talk to their friends about epilepsy because they worried about being seen as a burden on others or looking for pity, or because they wanted to talk only about fun stuff.

 

Simon has a lot of friends both at home and college. Together they go out for a meal, to the...

Simon has a lot of friends both at home and college. Together they go out for a meal, to the...

Age at interview: 21
Sex: Male
Age at diagnosis: 17
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When I was at school I had friends which I still go and see and, and I've been in contact with them for, since I first, I left school really. And I still go and you know see them at times and yeah and they stay in contact with me. And, and if they have anything on they sort of, we go and see each other and they don't live, shop very far away from, in my home. So I can, like either ask my mum and dad to like drop me off there and then spend time with them and come, and then come back later or something. So I have friends round my area where I live and that I go and sort of see now and again and it's quite good thing to do really.

Yeah, what do you do together with your friends?

Like we go sometimes we go out to the cinema, we would go out for a meal together, we… we would do, we go bowling together sometimes. We would go, I go to their house and basically have a meal over there or something and, and we'd play a few sort of games over there and to just like socialise over there really. Catch up on sort of things that they've done and I tell them things that I'd done and so that we, we'd just catch up on like news and that. Cos I like sort of hearing what they've done and, and I like hearing what I'd done.

People described how their friends had made them feel better about having epilepsy, taught them how to appreciate the positive aspects of life and not to feel embarrassed about discussing their epilepsy.

Friends were also those with whom people could tell jokes and have a laugh with, about their epilepsy. Many felt this was really important (see 'Humour and jokes about epilepsy').

 

Nick's friends know how to deal with his epilepsy. They are not too serious about it and the only...

Nick's friends know how to deal with his epilepsy. They are not too serious about it and the only...

Age at interview: 21
Sex: Male
Age at diagnosis: 15
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The lad who lived exactly opposite me he was, he actually, I remember actually, I actually collapsed, he picked me up and actually carried me okay, this lad is like 14 stone, then although I'm a bit lighter now actually I have to say, I was like 18, 19 stone of man, and he dragged me back to my bed. That is a man you've got to love okay? Dragged me back to my bed, called my parents, got me ice, got everything cooled down, and you know, I've just gone like that. And lots of people knew I had it, people knew cos they'd seen it happen or they'd said, 'Are you coming out?' 'Well I can't come out just yet because Nick is just getting better.' And stuff like that you know.

Yeah you said earlier that your friends had been really good with you.

Yes, they have. First my High School friends, I was told that I would drift away from them, 'Oh don't worry about that you'll find new friends at university, and you'll drift away with them.' I never have, 'cos they were there when I first found out about it, and we were just always remain friends. I suppose it's probably a separate issue but we've just always been friends about it, and they've always knew how to deal with it, and they are the only people I'll let me tease about it. They're the only, there's only certain people, you have to be a very good friend before I'll let you have a go. And I'll have a go straight back at them, but they're the only, it's only like, I think he once had a go at us, and I was like, I was really upset to begin with, I was like, 'How do you do that man, that's really harsh, that's harsh.' But I had a go in the end, and we just sort of, it made it a bit more, giving it a bit of levity made it a lot easier to deal with I suppose. So I suppose not taking it too seriously is probably the best thing to do with your friends. I mean your parents, well my parents take it so seriously, it's good they're so concerned about me, but with your friends who are also concerned about you, deal with it in a different way. They deal with it by not being serious about it.
 

Many people emphasised how important it was for friends to know what to do if they had a seizure so that they wouldn't panic or freak out. Many had been in situations where their friends had to call for help or an ambulance, when they had a seizure. Most people felt reassured knowing that their friends would be calm and responsible if anything did happen. 

 

Harry never felt different from his friends. He says they were never bothered about his epilepsy...

Harry never felt different from his friends. He says they were never bothered about his epilepsy...

Age at interview: 20
Sex: Male
Age at diagnosis: 7
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I didn't really know I'd had fits or seizures, whatever you like to call them, and I guess, when I was 12 I started to understand that what it was, but I never really considered myself different from anyone else. My friends, like when I was younger they, no it didn't seem to bother them, seems like most people were interested more than scared and really I think there was never any problems when I was younger.

My friends have been good and they have helped me when I've been ill. And they've called, called like call, you know call people to help me. And they've never left me or anything. But it also emphasises the fact that you, I think that you should, can't, shouldn't really be on your own if you've got epilepsy, in case you did have a seizure. When I have been on my own a couple of times, one of my first big fits I was on my own, at a bus stop and put me in hospital for a few days because I had a big fit and I broke all, I broke my nose and smashed all my face up, and I just woke up in hospital, and I didn't have anyone to help me and the problem is people thought I was actually a drug addict someone and they didn't know at all.

 

Paddy's friends have always been really good and they know what to do when he has a seizure.

Paddy's friends have always been really good and they know what to do when he has a seizure.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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My friends are always really good, the first time, the first time in the car we were really young then. It was my friend out of everyone, mum, dad, sister, it was my friend that helped me He'd learnt the recovery position from Scouts, so he, he knew what to do., then there was one in exam, in an exam, which and everyone was really good in that, because that was a difficult situation 'cos there was people around me trying to like, it was a very important exams, it was for deciding whether you get into university or not, but everyone was good and, then my girlfriend came and found me after the exam and, like sat with me. I didn't need to go the hospital then but then the two times at Uni, like I said there was these two people I'd never met, one of whom I'm really good friends with now. He was, he's a lifeguard, so he just moved everyone out and just got a cushion, made sure I didn't hurt myself, then another, another guy off my course, I'm not as good friends with him now, but at the time he was really good. Took me, went to hospital with me twice, and with, a lecturer as well.

A few people mentioned that their friends had learnt basic first aid and how to put them in a recovery position after a seizure. Some said they felt safer and more confident to go out with their friends rather than on their own, knowing that 'friends will keep an eye on me'. One woman said it was funny how her friends were sometimes even overprotective, constantly making sure she was okay and looking after her.

For many, friends were also there for practical help, if needed. A few people took a friend with them to the epilepsy clinic appointments, both for emotional support but also to help them remember to ask questions and recall what had been discussed. Other practical help from friends included having lifts if they couldn't drive, though some people pointed out that they didn't want to depend on others for getting around.

Feeling isolated

For some young people, making friends hadn't been easy. Those who had been diagnosed or were struggling with severe seizures in their teenage years or in the first year of university, said it had been difficult to make friends. For a few, making friends had been really difficult because their lives were taken up by hospital appointments, treatments and seizures.

 

Clair found it difficult to make friends when she was diagnosed in her first year at Uni. She...

Clair found it difficult to make friends when she was diagnosed in her first year at Uni. She...

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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What about thinking of the start of the Uni? What about the sort of the social life and the whole student life that you must have been really looking forward to?

Yeah, it was difficult because obviously one of the things is, a sleep you shouldn't stay out late and I found it quite difficult anyway because of my medication makes me sleepy in the evening so I tended not to go out in the evenings so I'd rather go out in the daytime and do things but obviously that's not really the student culture it tends to be sort of go out late and stay out late, so I did find that quite difficult. But my boyfriend actually is he's actually the same as me he likes to go out and do things in the daytime rather than go out late 'cos he works as well as Uni so he's, kind of on the same timeframe [laughs] as me I guess. So we do quite a lot of things and just go out in the daytime and my housemate she's actually, likes to [laughs] sleep as well, so we can, well I mean I think I've, the friends I have made are quite useful 'cos they, they are all sort of the same people as me and they don't like to go out late and stay out late and so we do do other things so. I think it meant that I'm probably made better friends because they'll support me more and they're not just gonna sort of leave me out. But it was hard because I was looking forward to going out and that sort of life but I thing is made me more sensible. And that I don't drink whereas a lot of people do so and I'm glad that I don't because I can see all the stupid things that other people do and so, yeah I think it's, I think it's actually been good in that respect.
 

Some people talked about how their friends had disappeared after they had been diagnosed because they couldn't go out, drink and have the same lifestyle as before. Many said their friends had found it really stressful to see them have seizures and gradually stopped asking them out. These experiences were hurtful and made people feel isolated.

 

When Holly was diagnosed with epilepsy she lost her new friends from Uni because she 'wasn't good...

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When Holly was diagnosed with epilepsy she lost her new friends from Uni because she 'wasn't good...

Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Just life was really good, and then all of a sudden I can't remain conscious for a week, and keep yeah., I get thrown out of my course, I have all the physical effects of loads of seizures, new drugs, all the side effects of that and all the people who I'd met at university and I thought were gonna be my new life long friends, they didn't really wanna know. You know now I wasn't really good fun anymore, now I wasn't going out clubbing, you know planning a night out then having the debrief the morning after over a cup of coffee to plan the next night, once my life had changed like that they just, they didn't wanna know., they didn't wanna be helping me, you know they didn't wanna be associated with somebody who wet themselves in public, when I was having a seizure not just generally [laughs], you know they didn't want that, they didn't want to, one of them said you know, they didn't come to university to be a carer. And quite right they didn't, you know that's fair enough I think in a way, but I still think that they're bitches, oh god I shouldn't have have said that [laughs].

 

When Becky was at Uni it was sometimes difficult to keep up with others. There was something...

When Becky was at Uni it was sometimes difficult to keep up with others. There was something...

Age at interview: 23
Sex: Female
Age at diagnosis: 15
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I'm at a time in my life where I've got a partner now where we like sort of stay in quite a lot now, and a lot of my friends are at that age where you know they've got boyfriends so we stay in and watch films or our social life involves like going out for meals or going to the cinema, so we're not, you know out drinking and you know, out till like 4 or 5 o'clock in the morning, but when I was like 16, 17, and at Uni especially, that was quite difficult because we were, you know, out all the time and I mean university like every night is a night out, like Monday you've got something, Tuesday you've got something going on, Wednesday, every single night of the week, there was something going on so you were out every single night of the week you know. I hope my mum doesn't see this because obviously we did do work [laughs], well there was work to be done. But yeah there was always something going on, so that was difficult, but, one of the girls that I lived with was diabetic so she had obviously it's not, it's not the same as epilepsy but there were similar risks so we sort of like, we, there was someone else who I lived with for the same, for three years, who had similar risks, risk factors as me so, excuse me, we had, it was it was good to have someone there who you know, we, she wasn't allowed to drink too much cause you know she, too much sugar and she didn't stay up too late, and so it was good to have, I had someone there who you know we sort kicked each other into touch and things.

Some people were concerned about being a burden on their friends and one man felt his epilepsy put 'a strain' on them. A couple of people said they felt 'guilty' for 'ruining' a night out for others if they'd had a seizure.

 

Donna couldn't go out or drink when she was younger because her seizures were really bad. She...

Donna couldn't go out or drink when she was younger because her seizures were really bad. She...

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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The epilepsy has always been like my main, it's been the main thing in my life. It's ruled everything. You know, I never had a social life as I was growing up really, you know I never had sort of, from sort of 15 to 19 where my friends was all going out drinking and clubbing, I never did any of that, 'cos for one, it wasn't really a good idea to drink when you're on medication, it don't really go, and for two, I didn't want to be going out and having a fit when all my friends were out enjoying, enjoying themselves, I didn't want to be a burden on them. You know, I had good friends, but I just didn't want, you know I didn't want to be out in, and see again the flashing lights and the heat, I couldn't cope with any of it. Cause of it, cause of my epilepsy. Not that it particularly the flashing lights set it off, but I just didn't want to be in that enclosed environment. I was frightened of having a fit.

One woman said that, after her diagnosis, she saw her friends in a different light because some of them became more distant towards her. 

 

Maria has some supportive friends but others find it difficult to appreciate how epilepsy affects...

Maria has some supportive friends but others find it difficult to appreciate how epilepsy affects...

Age at interview: 19
Sex: Female
Age at diagnosis: 18
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I definitely think that my social life has been affected a lot, and that's, that's been one of the hardest things, is that I do feel like I'm missing out a lot and it's just not very nice.

Yeah. What, what about your closest friends, closer friends how have they reacted?

Well even there I think a lot of them don't really understand, because they take those things for granted, and, I think it's very easy to say well, “Big deal, you can't go out very often.” So, so? “At least you, you can walk? At least… could be worse?” And yeah it's true it could be worse, but, it's still not great, so, I'd say there's only probably one or two of my friends who've really, really sort of grasped it, and the rest are like, really not very well. But then also I think young people are generally sort of very involved in their own lives, and while you can sort of feel sorry for one of your friends if they're going through a difficult time, you also are thinking, “Well, I want to go out, so I am gonna go out, even if my friend can't.” That sort of thing, so, so yeah I think a lot of my friends probably haven't reacted in an ideal way and that's been difficult as well.

And certainly one or two of my friends have just always been really, really supportive, and very understanding, and sort of asking a lot of questions because they want to know and they want to understand. But then I think beyond that it's such a bizarre thing and something that's so alien to people because it's, if someone looks at me they can't tell that I'm ill, it's not, you know I'm not missing any limbs, I'm not in a wheelchair. So it's very hard for someone else to relate to, and so, yeah, you're right, yeah I probably has lost friends, or, I'm certainly not as close to one or two people as I was a year ago.

Yeah. How does, how do you feel about that?

Oh, it's just sad. It's, and it is upsetting… but then it also makes me appreciate those people who have been supportive, so it's, on one hand it's really horrible, but on the other hand it's, it's made me closer to one or two people and that's nice.

Another woman's close friendship had broken down after her diagnosis. She felt that it was partly because her 'expectations were too high' of him. They were both quite young and her friend was also dealing with issues in his own life. Generally, people felt it was easier to make friends when they were a bit older and people a bit more 'mature'.

A couple of people had decided not to tell most of their friends about epilepsy, at least for a while after being diagnosed. One woman said she kept her epilepsy 'a secret' from most friends and had to make excuses why she couldn't drink alcohol.

Friends for life

On the whole, the young people we spoke with said that having epilepsy had really shown them who their real friends were. Many said they'd gained 'friends for life' - friends who they knew would always stick by them.

Last reviewed May 2016.

Last updated March 2011.

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