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…
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.
Rachaels boyfriend found out about her epilepsy after she’d had a severe seizure and ended up in…
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…
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…
James met his girlfriend at the youth club of the residential college they both went to.
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…
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…
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…
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,…
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.
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.