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.
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...
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...
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...
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.
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.
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...
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.
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...
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 ...
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...
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...
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.
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...
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,...
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.
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 sexual health section.
Last reviewed May 2016.
Last updated May 2010.