Epilepsy in Young People

Dating, relationships and sex for people with epilepsy

Here young people talk about their experiences of dating, relationships and sex, and how having epilepsy affected these areas of life.

Dating

Young people's experiences of dating and relationships were very positive on the whole. Most we spoke with said that having epilepsy hadn't had a negative impact on their experiences of dating or going out with people.

Epilepsy has never been an issue in Finlay's relationships though an ex-girlfriend worried about...

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Age at interview: 21

Sex: Male

Age at diagnosis: 11

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Most of the girls I've been out with have been, they've okay with it. They've been understanding, they've been like yeah now that's fine. The mistake that I have made, is sometimes I've told them too soon, and they've maybe thought, 'He's telling me this because he thinks we're gonna go out, and we're not going out yet' that kind of thing. So that can be something that's like they think is an indicator that I want to go out with them, and in actual fact I'm just trying to be safe. So that's been a bit, it's never been like a deal breaker, they've never been said oh this is too weird it's too much and then walked away from it. Sometimes they can be interested but they've never, no it's never really been an issue. Epilepsy has never really influenced my relationships in any way. I have to remember to take my medication with me and that kind of thing. And if I'm sick in the morning from alcohol it's not nice if you're with your girlfriend or whatever, but everyone's been pretty you know okay about it and people understand.

Has it been easy to talk with them about it, or have you talked about it?

Yeah, I think if I do have relationships I'd like people, to choose people who have like good communication skills. I don't like to go out with people who would be awkward talking about it, because I'm not awkward talking about it. I think that comes across so it's fine. I have had people who like last one was a little bit kind of she wasn't that approving of like the drinking and that kind of thing, of what I was doing, and missing half the medication like if I have really kind of a live night. She was like, 'I think you're doing the wrong thing,' and we'd have an argument about it, but not to any great extent. They have pamphlets on relationships I think from epilepsy people, I've never had to use any of their advice and I think I can deal with that part pretty much on my own.

Quite a few people said that, since their diagnosis, they had become more cautious or careful about who they ask out or develop a relationship with. Many preferred to get to know people as friends first, before getting involved more seriously. This way, people didn't need to feel awkward about when and how to tell a new boyfriend or girlfriend about epilepsy because they were already aware of it.

Rachael's boyfriend found out about her epilepsy after she'd had a severe seizure and ended up in...

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Age at interview: 25

Sex: Female

Age at diagnosis: 21

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I phoned my new boyfriend as soon as I got in [back home from A&E]. I was like you know there's something I haven't really told you 'cos I didn't see there was any point of saying anything. And he was like, 'Oh, what, why?' It'd been a month so I just sort of thought you know, he needs to know, as it seemed to be sort of heading that way into seriousness, eek. I just sort of said you know, I wasn't, I wasn't in A&E because I'd had too much to drink, you know me I don't drink that much. He said yeah, he says, 'You're quite controlled in that way aren't you'? I said yeah, I said, 'There's a reason why that is,' and he was just like, 'Oh why, what's the matter.' And I said, 'I've actually got epilepsy.' And he was like, 'Oh right, okay.' It was like I said, 'Oh you know, I said I'm sorry for not telling you sooner.' And he was just like; 'Rach just don't worry about it, it's fine.' He says, you know, he says, 'I know friends who've got it as well,' he says, 'Don't worry about it, it's absolutely fine. I just had to see you were alright with it.' You know and he says, 'Yes of course I am it's fine, you know, why wouldn't I be, he says, I'm not shallow.' And he said, 'But are you okay?' And I said, 'Yeah I'm fine,' he says, 'Oh, he says, do you want me to come round you know, you know is there anything that I can do?' Bless him. No, you know, you know, I don't want you to see me I was looking I was looking like rubbish. So there are days when I don't really want you to see my like this and you know he was just like, 'Oh okay, okay then, are you sure?' And he says, 'Okay I'll give you a call later anyway.'

He called later on and checked up and I said, 'Yeah I've had a sleep feeling a bit better,' he says, 'Have you eaten?' I said, 'No'. He said, 'Right I'm coming round and make you lunch,' and he bought me a bottle of 'feel good juice'. "I've brought you a bottle of Feel Good Juice to make you feel good." I was like bless. So yeah he's been really good with it. I feel like it was mistake to sort of burden an ex-boyfriend with it, I've tried to sort of be good with it and everything and plus what with it being controlled and he was just like. He's actually seen me have a fit now and he says he was absolutely fine, he says, 'Don't worry about it, he says you know, you knew it was coming on, you told me, I got you in a safe place, and you're fine.'

A few people said they felt less confident about dating now than before their diagnosis. Some also talked about how, because of frequent seizures and lack of social networks, it was difficult to meet new people. One woman said epilepsy had knocked her confidence so much she didn't want to ask anyone out because she feared being rejected.

Helen says it's hard to know when to tell people about her epilepsy. She's 'afraid' of getting...

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Age at interview: 23

Sex: Female

Age at diagnosis: 22

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At the minute I feel like I'd rather go out with someone that I know very well, or that I know, at least know quite well because then the epilepsy for a start won't be more of a problem, they know more about me. I'd feel horrid about going out with someone, like on a first date, if I didn't know them very well. When do you bring it up? When do you tell them? What point do you tell someone that I have epilepsy? And by doing so, by actually sitting down and telling them are you make too much of a big deal about it? And I think in that way it's made me very afraid. It's made me very afraid of getting involved in a relationship because you bring up a whole great heapful of things that you don't necessarily want to tell someone that you're not very involved with yet. And yes, it has made me kind of afraid, but what can you do? It's just the way life is.

So getting the balance right, when to tell and if you do tell, is it gonna scare them when you don't yourself know them maybe?

I think it's changed the way that I think about relationships with people and I think the reason that I'd rather be friends with someone now before going out with them, is that I've kind of tested them, because you know at a certain point in my friendship with people it does come out. It just comes out, why don't I drive? Why don't I drink? I tell them and if I've known for a while then they have kind of passed the test, so I then I don't mind going out with them. I've got much less to lose. So it has changed the way that I get involved in relationships a great deal and probably for the better. I think. You know it means that I'm lot more picky. But it is good.

Many people felt that, if their boyfriend or girlfriend couldn't cope with their epilepsy, then they wouldn't be the right person for them anyway. One man said that epilepsy was a part of his life so any girlfriend would just have to 'take it or leave it'. One woman said'

“At the end of the day, if there is a problem when I tell that person [about my epilepsy], then obviously they're not the right person.”

Ben describes an incident where he had a seizure while chatting up girls in the pub.

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Age at interview: 22

Sex: Male

Age at diagnosis: 14

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It is difficult when it comes to relationships but at the same time, I suppose in a way it's a risk you gotta take really. It is a bit of a pain as well when, a couple of times I've done this, you know the whole talking to a couple of a girls and the whole charm, really putting the effort in, giving it my all, and then, bang [clicks fingers] I go down and you think, 'ah God it was all wasted for nothing,' [laughs]. In certain cases they've come back to me and said, 'It's broken the ice a bit more.'

A couple of people who hadn't yet dated much, said they were a bit worried how epilepsy might affect their future relationships or finding a partner.

Relationships

Young people who were in a relationship talked about their partners being the most important source of emotional and practical support for them. Several described how their partners had been their 'rock' and a source of 'unwavering support', especially when they were diagnosed.

Emotional support from partners was extremely important to young people and a few said that they'd rather talk about epilepsy and their feelings with their partners than with parents or family.

Kirsty says her boyfriend has been amazing and, without him, she'd still be sitting in her room...

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Age at interview: 20

Sex: Female

Age at diagnosis: 19

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He's [boyfriend] really good. Without him I wouldn't have, I'd just be sat in this room still, upset, on my own, wouldn't go out, but he's amazing. He's helped me through it.

How has he helped you so much?

Like he's the one, like basically I can't go out without him, because if I have a seizure, he's the one, he knows what to do. He trained in what to do just for that. I'd only been with him a month when I was diagnosed and I thought oh no, he's gonna run away, I've got this thing, and he totally understood about it. He talks to me about it with everything, he asks me like how I'm feeling. And if I'm gonna have a fit he'll like take me somewhere out of the way so that no one can see me. But he's good.

What training did he have?

He basically learnt like to put me in the recovery position, all stuff like that, and if like, you know and if the fit is more than five minutes, he knows what to do, just in case something goes wrong.

How do you feel about that?

Very safe, that's why I won't really go anywhere without him, or without anyone that knows what they are doing, just in case. But I'm really happy that like he's taught, like he learnt all the stuff like that, just for me.

I think it's definitely brought us closer together. I mean we were really close anyway, we talk about anything, he does everything for me, I do anything for him. I think it's a good relationship anyway but because of that it brings us closer together. We can talk about things, like before I wasn't really good talking about stuff, but since I've had this I've had no choice otherwise it'd all be locked in my mind and it would drive me crazy if I didn't talk. So now we can just talk about anything, talk about epilepsy, talk about what not. He understands that like it drives me crazy in that I can't drive, and he'll try and get someone to take me out somewhere or he'll take me out for a meal, take me out to the cinema just to take my mind off things. He's really good [laughs].

James met his girlfriend at the youth club of the residential college they both went to.

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Age at interview: 20

Sex: Male

Age at diagnosis: 3

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I want to go home and see my girlfriend again, I've got a girlfriend.

Where does she live?

She's moved into a different college place now.

So she's not here?

She's not here now. And she's [her name].

Did she used to live here?

She used to be here yeah and I took her to the disco and I danced with her.

Yeah. How did you meet your girlfriend?

How did I meet her? I met her here. I met her here at the college, at youth club.

Okay. Yes. So if she's in a different college now. How do you see each other? Do you travel there?

What I do now is sometimes, if when it's like the end of the week and you're going home for quite a long time, then I sometimes go to her's and then mine, I travel there, so I can see her for a bit and play with her.

A few people also said that it was especially with their partners that they could have a laugh and joke about their epilepsy. We also spoke with a couple of young people whose partners had epilepsy too; they said it was interesting for them to compare their different seizure types.

People also felt it was really important that they could rely on their partner for help if they had a seizure. A couple of people's partners had learnt first aid so that they would be confident and knowledgeable about what to do during a seizure.

Becky can totally rely on her partner. He often comes home from work if she has a seizure on her...

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Age at interview: 23

Sex: Female

Age at diagnosis: 15

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Because of the way we met like over the over the internet, 'cos we talked a lot. We talked on the phone for about nine months before we met, obviously he knew I was epileptic before we met, so it wasn't something that like I sprung on him or anything like that. It's kind of a weird way to start a relationship but we kind of knew each other inside and out before we met, so I kind of just felt completely comfortable talking about it, and everything and it was never really an issue then when we met and when we got together. I suppose again because I wasn't having them every day it's not, you can't, you kind of really, you kind of forget that I've got it in a way, it isn't an everyday occurrence. But obviously it's incredibly important that I know that if I do have a seizure that I can rely on him to sort of look after me and make sure that everything you know that he's here. I mean it's got him in, not into trouble I suppose, but he's on certain stages at work because he's had to come home a couple of times and not because he's needed to, I could've managed, I could've put myself to bed. But because I do get so upset, like when we lived in [city name], like the first thing I always think to do because I'm so upset when I come round. I remember managing to get to the phone sort of and cause I'm so upset you know the first thing you want to do is you want a cuddle or something, the first thing you think to do is like to ring like the person that you wanna be with, so I sort of ring work and sort of say, 'Oh, I think I've had a seizure.' So he'd be like, 'Right, I'll come home.' So he'd be on like certain stages at work and get like compassionate leave or he'd get told off, or, cause he'd sort of say, 'Right, Becky's ill, I have to go', which is always good to know. Because, you know there might be some people who'd be like you know I can't come home because I'm gonna get into trouble at work, but he doesn't do like that.

If you're in a relationship with someone who'd be like, for example as I was talking about in a meeting before about people who we have at the epilepsy meetings before, people who would see me as a burden or someone who would be like, 'Oh, well we were gonna go out, but, Becky had a seizure so we couldn't make it and'' and stuff like that, that would be a nightmare. Or someone who, 'Ah, well I'm in trouble at work again now because I had to come home because Becky was ill.' And it's never like that, and it's never been like that and it's never been a factor. He always stays, if I'm ill he always stays with me and he'll bring, because we've got bed chairs, you see, little bed chairs, so obviously if I've had a seizure I'm always usually on the floor, so he'll bring in the bed chair and put me on the bed chair on the floor. And then just sit by me on the floor and he won't leave you know, so it's really good. It's always nice to know that.

A couple of people said they felt uncomfortable and didn't want to talk about their epilepsy at all with a partner. One woman said she preferred not to talk about epilepsy with her boyfriend because she felt guilty about the impact it had on their lives, for example, in terms of contraception (see 'Contraception, fertility and pregnancy').

A few people described how their epilepsy had started to dominate their relationships too much, especially if they were having frequent seizures or spent a lot of time in hospital. Some people had eventually decided to end these relationships. A few women said that, although their boyfriends had been great about their epilepsy, and very supportive of them through difficult times, they had become too dependent on their partners and this had put a strain on the relationship.

When Donna's epilepsy was really bad, she became dependent on her husband. Their relationship ...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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It [brain surgery and being seizure-free] affected my relationship with my husband, very very dramatically.

In what way?

Because he was my carer, and he'd done that for sort of six, seven years, I'd have this done and he thought that I no longer needed him. I was trying to come to terms with my emotions, and obviously he was trying to come to terms with his. It's been a rocky sort of year for us both. At one point we nearly just gave up. And, again that's really all through how he's dealt with it. Again that's something else that people don't seem to understand. It's the ones around you; they've got to deal with it with you. And if you've got no support, and no back up you know, you're a little bit on your own aren't you? And again, this is something else that I'd been told by specialist that it does happen, and this certain person said, 'I feel that we should be doing something more for the families,' she said, 'Because again so many times we get this come back, you know we get this sort of, oh my husband hasn't coped with it, or my parents haven't coped with it.'

The way I see it now, if I don't know how to deal with it, how could I expect him to know how to deal with it. If I couldn't get it right in my head, how could he get it right. Hopefully we'll be stronger for it. You know we've only been married two years and again, we've been through a lot. Most things that me and my husband have been through in two years a lot of people don't go through in twenty years. And it's been difficult you know a lot of the times. We've both just thought about chucking the towel in and thinking oh well just let's start again. But then it would be for the wrong reasons at the wrong time. Because like say I'm not a different person, I'm still me but I am a different person 'cos everything about me is different. I'm so much sharper you know I'm so much more independent. I think he feels just a little bit, well like I said he feels like he's not needed anymore. He was needed so much before and I'm very independent. I've always been independent but I'm doing things off my own back more.

Holly split up with her boyfriend because she felt too dependent on him and their relationship...

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Holly split up with her boyfriend because she felt too dependent on him and their relationship...

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Age at interview: 26

Sex: Female

Age at diagnosis: 18

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I went home and waited out the year pretty much, broke up with the boyfriend, the wonderful boyfriend, pretty much traded him in for somebody else, despicable behaviour. He was kind of a, like a real reminder of like a really bad time you know. And I don't know, I think because he had been so great, and I had been so dependent on him, and you know everything had been really intense, kind of really difficult to change that and he didn't want me to not be. I don't mean to make him sound like some kind of nutter who gets off on people being unwell or it's not like Munchausen's, whatever, it's nothing like that. I don't know, I just needed a new start and that involved a new boyfriend [laughs]. Just whole new, everything really, yes so, but we're still really good friends. I think when you have that, sometimes bonds can be forged in fire, but even now he's still a bad weather friend, so it's only really when I'm miserable or something's gone really wrong or I'm just I don't know, he's always the person I want to talk to.

One woman said her ex-boyfriends tended to be overprotective and another pointed out epilepsy can become a burden on a partner. She also said that carers have very little support and are forgotten.

A couple of men had experienced medication side effects which caused problems in their relationships because they had become quite aggressive, obsessive or paranoid towards their girlfriends (see 'Medication side effects').

One man said that, although it was great to have support and to share things in a relationship, he preferred being single. He felt that the girlfriends he'd had so far had not coped with his epilepsy and he had decided to end these relationships.

Ben prefers being single. He feels women are more sensitive about his epilepsy and that it's not...

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Age at interview: 22

Sex: Male

Age at diagnosis: 14

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Ben' I think I prefer to live the single life. It's nice to have the support but at the same time over time having a girlfriend you can see how much pressure it's putting on them as well. And it does get to me at the same time, even though they won't say anything about it, they won't put it across. They just on the outside appear to accept it, but I can tell. In certain cases I've ended it because I can't see it like that, I can't see them like that. A couple of occasions I've ended it with a discussion about it and said, 'Look, you know, at the end of the day'' and they've denied the fact that they're affected by it but they're going to. At the end of the day I can see that it is affecting them. I think with male friends, not a problem as such because with the lads they can catch me if I'm gonna go down, I've known them for longer so they're more used to the signs before I go, a lot more helpful. It does affect them but we have a laugh about it, with your mates and they deal with it. I deal with it just having a laugh about it.

But I've found with women, relationships it's more, they're a bit more sensitive about it you can't really have the same laugh as you would with your mates. I prefer in a way to keep the single life and just not mention it. Unless they are previously aware of it, let's say if they've seen me about in town or something like that and I've gone down or they'll say to me, 'How did you get that scratch across your face? How did you get that cut on your hand? How, what's happened to you? What's happened to your neck?' all this sort of thing. On certain occasions I'll make up something, you know. Something sort of hardcore, 'Yeah I was out and about and this situation happened and, but I only got a scratch, you should have seen them.'

Dad' Got jumped on by twelve people.

Ben' Yeah. Yeah I would still take them all on. But the people who know me they know what it is, they know that I'm not that type of person but they know where the cuts and scratches come from. They'll simply look at me and say, 'Oh you had another one then?' And that's my friends, 'cos they know.

Sex

It's possible to have a seizure during sex but this is not any more likely to happen than at other times. A few young people we spoke with had had a seizure when having sex. Some said that, when it had happened, they'd made a joke and had a laugh about it with their partners. One woman with absence seizures said it could be funny having absences during sex.

Ben has had a seizure twice when having sex. He says the best thing to do is to make a joke about...

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Age at interview: 22

Sex: Male

Age at diagnosis: 14

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I have done twice [had a seizure during sex], at the end of the day I've had to make a joke of it. Because obviously when you have a seizure, all your muscles tense and at the time with the girl, it got to the point where I went into the seizure and she couldn't get up 'cos I was on top. And eventually when she did manage to get out the way, we were in the bed at the time, so it was okay she could put me down and relax. She was fine with it, but as I said all the muscles tense up, so in a way the only thing I can do is make a joke of it and say, 'Well, don't worry about it, I'm shaking, all my muscles are tensed up, hop on and wait till the end.' But it's the only thing you can do really, make a joke of it, have a laugh, yeah it's happened twice now. Once with one girlfriend and once with another and but they were pre-warned, at the end of the day, they all knew the issue. But as I said, they could make most of it [laughs].

A couple of people said it had been a difficult situation for them and their partners when they'd had a seizure during sex. One woman said that, although she hadn't been bothered about her having a seizure, it had been difficult for her boyfriend.

Maria had a seizure during sex before she was diagnosed. She said it was upsetting for them both,...

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Age at interview: 19

Sex: Female

Age at diagnosis: 18

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I did actually once have a seizure while we were having sex. It was before I was diagnosed, so then again I didn't know what it was. It was really unpleasant and he found that really upsetting because he thought that he'd caused it or something. But aside from that it hasn't. Aside from you know when I was really upset and when I get upset about it I'm not really in the mood. But he's really responsive to that, and it's just not a big deal to him, which is really good. I'm definitely fortunate.

How did that incident, how did you react to that, you said that he was really upset, what about you?

I was just upset that it had happened rather than it had happened while we were having sex. He was upset because he thought he'd caused it somehow. For me it was more like, “Oh, this again, what the hell is this, and why is it happening now?”

Do you want to say more about what happened then, did you go into a full seizure?

Yeah, yeah, it was. It was definitely a full seizure and it was one of the longer ones, it maybe lasted about 2 ½ minutes, 3 minutes or something. Yeah.

Did you manage to talk about it then afterwards or?

I don't remember to be honest 'cos it was quite a while ago.

And this didn't make you sort of wary of having sex, it didn't put you off?

No, no, because it was the only time it had happened. I sort of I didn't make a link between the two. So no, it didn't put sort of put me off having sex or sort of make me think if I have sex I'll have one of these things, which I didn't know were seizures.

One woman who had seizures only early in the morning, said she avoids having sex at that time and one man said that, because his main triggers are anxiety and stress, seizures were unlikely to happen when having sex.

Finlay is not likely to have a seizure during sex because his main trigger is stress.

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Age at interview: 21

Sex: Male

Age at diagnosis: 11

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I think that like in general I have seizures the more panicky and under pressure I feel, the more seizures I have. So if I'm panicking then the likelihood goes up. I tend not to be panicking during sex so it's fine and that's the kind of general indicator. If I have to do something that's like 'whooo' and hard, then that's when I begin to worry but unless, if I'm not doing that then I don't worry at all. It's in the back of my mind really.

Do the girls worry about sex?

I don't think so, 'cos I generally, they don't know as much as I do, and they don't know that people have seizures and during sex sometimes. I don't feel any need to kind of to deliberately worry them, so I don't mention it. I think they assume it can happen at any point, so they must know that it could happen during sex, if it can happen at any time, including sleep. But no one's ever expressed a worry about it and because I think they rely on me for information they go, 'Are you feeling okay' and they rely on me to tell them if I'm not feeling okay. I don't have issues so it's kind of a one way information flow in that I tell them about it, what I'm feeling, what to look out for and that kind of thing, and I hear their worries but, mainly if I don't tell them that it's an issue they're not going to assume it is an issue. And that's the way it's always been really, and that's been fine.

Most people said that they weren't particularly concerned about the possibility of having a seizure during sex because their partners were very understanding and would know what was happening. As one woman summed up; “If I have a fit when having sex, I have a fit, I've got epilepsy.” A couple of people said they would find it embarrassing it if happened to them and that this was even more of a reason for them to talk about epilepsy early on with their girlfriend or boyfriend.

It is important to take epilepsy into account when choosing a contraceptive method. Some epilepsy medications, for example, interfere with the pill and some other methods of contraception, so a condom is needed as well (see 'Contraception, fertility and pregnancy'). For more information about sexual health see our young people and sexual health site.

Last reviewed May 2016.

Last updated May 2010.