Many people with epilepsy have fulfilling relationships with a partner. Seizures are a physical symptom, but having epilepsy can mean far more than the physical impact of seizures, for the person with epilepsy, and their partner. Many people manage seizures well, but seizures can be unpredictable, frightening or shocking, both for the person having seizures and for those who see them. It may be hard to deal with the memory of a seizure, what the person with epilepsy looked like, how you both felt, or with the fear that it might happen again. Some people may not want to be alone with their partner in case they have a seizure, or fear being in the same place where it happened before. If this was in a private place such as in bed or during time alone together, this can put strain on a relationship.
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. 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'. 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.
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.
Relationships and sex
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. 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]. 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. 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. 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.
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.
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.Dating and Epilepsy - Telling Someone You Like That You Have Epilepsy
Or someone who, 'Ah, well I'm in trouble at work again now because I had to come home because Becky was ill. 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.
It [brain surgery and being seizure-free] affected my relationship with my husband, very very dramatically. 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.
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. 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 ' 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? 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. 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? Sex It's possible to have a seizure during sex but this is not any more likely to happen than at other times. It may be hard to deal with the memory of a seizure, what the person with epilepsy looked like, how you both felt, or with the fear that it might happen again. Some people may not want to be alone with their partner in case they have a seizure, or fear being in the same place where it happened before.
If this was in a private place such as in bed or during time alone together, this can put strain on a relationship. It may be hard to face this or talk about it, as you may worry that how you feel might upset your partner. Talking it through with someone you trust may help. Everyone is different, and there may be many ways to help deal with issues around epilepsy.
Many people with epilepsy do not need a carer , but some may need care and support sometimes, particularly when they have a seizure. Supporting someone with epilepsy may include giving them lifts, prompting them to take medication, or sharing activities to help them keep safe.
Supporting someone in this way can bring you closer together, but some people with epilepsy may feel this affects their independence. It may help to think that everyone needs support with something, whether they have a long-term condition or not.
It can also be important to make time to focus on your relationship separately from giving and receiving support. A new relationship can be both exciting and daunting for anyone. If you have epilepsy, you may wonder how to tell a new partner about epilepsy and how they might react. The way other people have reacted in the past might also affect how you tell new people. Seizures can disrupt plans and activities, and for some people, having epilepsy affects their confidence.
However, some people find new relationships or interests through changes they make to their lifestyle because of epilepsy. New experiences could also strengthen an existing relationship through gaining confidence, sharing new things, and discovering what is important to you and to your partner. Some people find that talking about epilepsy brings them closer to their partners. But sometimes one person in a relationship wants to talk about epilepsy and the other does not.
Dating a girl with epilepsy
For some people, epilepsy may feel like an unwanted intruder that has changed how things used to be. Being honest about your feelings may take courage, but your partner may be relieved to be able to share how they feel too.
Some people use humour to help to deal with, or avoid, difficult feelings. Others may want to keep a balance between talking about epilepsy and other important things as well.
Our confidential helpline is for anyone who wants to talk about epilepsy. Some couples may chose to seek professional support for their relationship in the form of couples counselling. Whether or not you are sexually active, sexual issues can be important at any time of life. Many people with epilepsy do not have specific issues with sex that are caused by their epilepsy. For some people however, epilepsy may have an effect on their sex life. There are many possible reasons why sexual desire or arousal are reduced at times, and this is common in both men and women.
Viewing problems with sex as a personal failing or weakness may put more pressure on you, and stop you seeking help for the problem. The most commonly reported problems for men are a reduced interest in sex, and getting and keeping an erection. Women with epilepsy report a low interest in sex, difficulties in being able to orgasm, or painful sex due to vaginal dryness or vaginal spasms.
These problems can all have more than one cause, but physical causes may include the following:.