Epilepsy

How epilepsy affects parents and family

Here young people talk about their relationships with parents, siblings and the wider family.

Most people we spoke with felt that their parents worried a lot about them. Many said their parents were more worried and upset about their epilepsy than they were themselves. People said their parents had been particularly upset when they were first diagnosed. One woman said her family members 'fell to pieces' because her diagnosis came as such a shock but that, in time, they've learned to cope with it. A few people had only recently found out how much the initial diagnosis had upset their parents.

A few said their parents' worries for them had been made worse by them knowing someone who had died related to an epileptic seizure at a young age. One woman's uncle had died of SUDEP and she said she understands why her mum worries a lot for her.

Those who had younger sisters, brothers or cousins said that they were quite scared of seeing them having a seizure. One woman said her young sister had been embarrassed to have friends round to their house in case she had a seizure. A few people also said that, while one parent was generally 'cool' with their epilepsy, the other one might be more worried or protective or more easily upset.

Because of their parents' and families' worries and concerns, some young people wanted to protect them. For example, if they lived away from home, they didn't always tell their parents that they'd had a seizure because it would upset them. One woman said her mum got so upset in the clinics with her that she started taking a friend with her instead.

Several people also felt that their parents put too many restrictions on their lives and were overprotective. Many parents found it difficult to let them go and do things on their own, and wanted to know where they were and what they were doing. If young people lived away, parents wanted them to 'register' daily on the phone. One man said he felt 'claustrophobic' when his dad kept checking up every day whether he'd taken his medication and wanting to know about his comings and goings. 

For some, tensions with their parents had led to arguments and falling out, and one woman had to move out from home to get more space.

A few people said they felt a burden on their parents and family, and 'guilty' that their epilepsy had affected their families in a negative way. For example, people felt their epilepsy restricted family holidays or evenings out or that epilepsy had put their parents' life 'on hold'. One man said, ”I feel sometimes that I've ruined their lives.” People also felt that their seizures put a huge responsibility on their parents, but particularly on younger siblings who might not be able to cope.

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Most people said that, if they wanted to talk about epilepsy, their parents were there for them. However, many didn't feel the need to talk about their feelings with family but preferred talking with friends or their girl/boyfriend. A couple of people also said they didn't want to talk about epilepsy because it was too upsetting and one woman said it was scary to talk about it.

Parents and friends were the main sources of support for young people, both emotionally and practically (see 'Friends'). Some people's parents had been especially active in searching for information about epilepsy or had joined an epilepsy charity or local support group. One woman said the support group had been more useful for her parents than for herself. A couple of people also said their parents were equipped with 'an army of questions' for their doctors at clinics. A couple of people said that epilepsy had brought the whole family closer together and one man said that the family had to learn 'to work together'.

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Last reviewed March 2014.

Last updated May 2010.

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