Living arrangements and safety with epilepsy

Some of the young people we spoke with lived at home with their parent(s), many had moved away and lived in shared houses, on their own, or in a residential college. Here people talk about their different living arrangements and thoughts on safety.

Living in a shared house or halls of residence

Many people we spoke with were studying at college or university and had moved away from home. Most lived in shared student houses or halls of residence. We also spoke to a few people who lived at a residential college for young people with complex epilepsies and learning difficulties.

Most people in shared houses had told their housemates about their epilepsy so that the housemates knew what to do if they had a seizure. Many said that this made them feel safer because they knew that their housemates would 'keep an eye' on them. One woman shared a house with trainee nurses and said she felt really safe with them around. 

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One woman hadn't told the people she was living with about her epilepsy because she was worried about being labelled.

A couple of people said that their housemates hadn't been very understanding about their epilepsy or them needing to go to bed early, for example. One woman tells of an incident which made her to fall out with her housemates:

“They [housemates] got a bit funny with me once. I had a seizure in the shower. I'd knocked the shower head out and all the water started running down through the electrics, and they blamed me for that and tried to make me pay for having the electrics rewired. And I was like, well it will be covered by the insurance, but yeah; that was 'my fault' as well.”

A few people felt they were a burden on their housemates and didn't think it was right for others to feel responsible for them. 

Those who lived in a residential college, said living there had helped them become more independent and learn a lot of important life skills: cooking, cleaning, being in charge of their own money, planning a budget, and making appointments by themselves. 

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Many who lived in a university hall of residence said they got a lot of help from the university's disability office, which had made sure their rooms and living environment were as safe as possible. A couple of people had been able to choose their halls because it was important for them to live as close to the university as possible, in case they felt ill or tired. (For more about other forms of support young people had at college and university see 'College and university').

Living alone

A few people we spoke with lived alone or with a partner. In particular, those living alone had to think about their safety and make adjustments so that their homes were safer for them (see 'Risks, injuries and SUDEP').

One man said that, even though having seizures on his own at home has risks, he can't 'live in a bubble' for the rest of his life. He has a safe-link alarm installed in the house. A couple of people said it hadn't occurred to them to think of safety aspects when deciding where to live or when moving out to live on their own.

Quite a few people said that they wanted to move away from home and live independently but were concerned about safety. One woman said that her epilepsy wouldn't stop her living on her own but that she would just be more aware of risks and address the issues involved.

A couple of people felt that there was a danger of becoming too dependent on their parents and not having the skills to live on their own. Some said that they would never want to live completely alone but would prefer to share with a partner or friends. 

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In addition to concerns about safety and epilepsy, some people pointed out that they just couldn't live alone because it was so expensive that they couldn't afford to.

Last reviewed May 2016.

Last updated March 2012.


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