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.

Bex’s parents and grandparents have been very upset about her epilepsy. Her parents haven’t put…

Age at interview 20

Gender Female

Age at diagnosis 13

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Could you tell me a bit more about the effect it had on your family over the years?

I think it had it had you know an effect on my grandparents. And obviously my mother and father and my sister got quite upset, you know, she’d get upset every time I had a seizure but my family sort of cope now with humour and we just laugh about it. And, you know, I know when I was diagnosed it was kind of weird. You know my friends found it very strange, you know my family could cope with, you know how they could be humorous about it, but it is really the only way we can cope because you know you’ve got to live your life and it is something that is quite nasty sometimes, but it’s it is something you have to come terms with at the end of the day and they you know they get on with it good now and they understand I am living that a life you know again more. It is not about the epilepsy anymore, it is about my life and epilepsy is only a small part of it. So they are quite happy to see me go off and travel and things. So, they do worry sometimes you know, because may be, me I want to go off on my own [laughs] and they are uhh, but they do let me. They don’t tend to have a rein on me which is I really respect it because they really a lot of parents naturally would want to protect their child and it was very difficult but from about the age of 15 onwards they sort of let go of the reins and said you know it’s a strong bond I have between my parents because of that and yes a lot of respect there. You know they, it was it was hard for them to let go and I was obviously I was really quiet. I was a quiet child as well so to see me going off doing things now I think they are quite happy that I that they made that choice, because there was a lot of people they’d spoken to and people with epilepsy that, you know, they didn’t do a lot and I had chosen to do other things, so that’s good.

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Francesca says that being diagnosed with epilepsy was more difficult for her family than for her…

Age at interview 20

Gender Female

Age at diagnosis 18

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I think it was more difficult for my family then it was for me, they had to sort put up with the seizures and being ill and I think as well they were sort of like, oh don’t let her go anywhere on her own and sort of you know trying to look after me all the time. Which became a burden for them as much as it was for me as well. So, especially my sister, you know, as well, I think she sort of felt it the most.

In what way?

Well, we are sort of very similar in age and I think she was at actually at one point, I think she was quite embarrassed to bring people sort of round just in case in case anything happened you know and she sort of had to be there, so I think that was probably the most’

And did it affect your relationship with her and how sort of close you were or anything like that?

No I think if anything it has actually brought us closer together. But I think it is more a case now that she sort of feels responsible, you know, and feels like she has to look after me and stuff despite her being her the younger sister. But other than that really not a lot has changed and that is a good thing.

Do you ever feel overprotected by people?

Yes. I feel overprotected all the time. My family like sort of don’t want me to go anywhere on my own, so I have to go somewhere’ wherever I go someone has to go with me, so that is a bit irritating, especially when it comes to things like buying birthday presents and stuff you know and they are all with you [laughs].

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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.

Omar’s dad has a more ‘scientific’ approach and his mum a more religious outlook on life and his…

Age at interview 28

Gender Male

Age at diagnosis 15

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Yeah, it [epilepsy] did [affect my family]. It matured my father a lot more, my father I think comes more from a sort of scientist, scientific kind of just a, a basic kind of view of life I think he takes it as it comes and he, he’s quite, you know, proud of his roots. But my mum was more kinda spiritual and in the religion, in Islam they talk about things like djinns and, spirits and devils etc all exist and there’s the whole sort of myth about that they’re there and they exist all the time and you don’t know and that they can take human form etc or they can enter a person’s body and, you know, exorcism etc.

My mum would just pray a lot and she just, in fact she still, she still like, the most of the day she spends like sitting on her mat and praying like in the house like, a lot of the day.

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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.

Harry had a lot of restrictions on his life when he was younger, which made him feel he was…

Age at interview 20

Gender Male

Age at diagnosis 7

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Harry’ I was restricted from doing certain things like riding, maybe riding a bike or just you know like I’m sure there are things you can imagine, but I didn’t really know I was missing out until I got a bit older, and when I was about, say about 16, that’s when I started to miss things and realise that I was missing out on some things. I wasn’t really allowed to go out anywhere on my own, always had to have someone with me, I’d, I didn’t really understand that, I thought I only really realised that don’t know what the word is really.

Mum’ Restricted?

Harry’ Yeah I was restricted but I thought I was just over.

Mum’ Overprotective parents?

Harry’ Overprotective parents really. But you know I took, it took really until I was about say 19 probably to realise that they were just doing it for my own good really. And to understand, understand them. Because when I was 18 I started having much bigger fits, much worse fits and I did end up hurting myself a few times, and that really woke me up to how the epilepsy is actually dangerous, it can be a dangerous thing to have. And certain restrictions are right, rightfully imposed upon people.

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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.

Ben’s relationship with his parents was difficult after his diagnosis and he argued a lot with…

Age at interview 22

Gender Male

Age at diagnosis 14

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Relationship with my parents over the years was, it was difficult to start with once the diagnosis all came clear. You know, the way me and my dad was very bad, we didn’t get on at all. And I was close, very close to my mum, and with my Dad it was, it was constant arguments, physically aggressive to each other, but there was, it was always like that. Things died down a bit over time as I became older, I think I got to the age of about nineteen, was it nineteen’ And once I’d sort of accepted the fact that, you know, me and my parents, my sister and me, had accepted the fact that it was, I had epilepsy it was the case what are we gonna do about it. We have to work together.

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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.

Rachael explains why she felt a burden on her boyfriend and parents.

Age at interview 25

Gender Female

Age at diagnosis 21

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What do you mean when you said a burden?

I just felt like I was putting on him a lot. We’re talking about, we’re talking about my ex-boyfriend, like, you know, you’re putting on your family because when you’re zonked out on the floor you don’t know what’s going on. But they’re like seeing what is happening and you know I’ve seen someone have a fit now and it is if you’ve not seen it before it’s very very scary, it’s very weird the first time I saw someone have a fit, it was, ‘Oh my God I do that’, [laughs]. But I knew what to do because I’d be telling people what to do for a while, but yeah I just felt like I was, I just felt like I was putting on them a lot, because they, and also as well because I was feeling quite low in moods and, you know I just felt like they were having to be quite supportive and also as well putting on my mum because of my uncle as well like how, I just felt bad for sort of like having this condition.

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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.

Harry doesn’t want to talk about epilepsy because he says talking about it won’t change anything.

Age at interview 20

Gender Male

Age at diagnosis 7

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Harry’ I don’t talk about it that much. My brother, I never talk about it to him. My parents really I don’t really talk about it to them, because well I choose not to, and I’m sure they don’t really want to hear about it, ‘cos it’s just as upsetting to them as it is to me. Even more so really I should think. ‘Cos I’m sure my mum when she or my dad when they’ve come into my room and they’ve seen me having a seizure, God knows what they think really.

So is that why you prefer not to talk about it an awful lot. Is that if you find it upsetting?

Harry’ Well I get carried away and talk a lot about it, and I think about it.

Mum’ It doesn’t make it any different.

Harry’ Yes it’s what I’m saying, it doesn’t make any difference it, like it won’t stop anything.

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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’.

Maria’s family has been the biggest support for her.

Age at interview 19

Gender Female

Age at diagnosis 18

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Probably just my family [has been the biggest support] because they’re just so non-judgemental and because my brother, one of my brothers and my dad come from a medical background, and my mum comes from a therapeutic background, and she used to be a nurse, so they, they’ve kind of got an understanding that having a medical problem doesn’t have to be a big deal in terms of it doesn’t change you, and, what’s the other thing I was gonna say? And that you can talk about it openly. And I think that’s easier because they come from a bit of a medical background. So I think probably my family that they’ve just been supportive.

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