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Epilepsy

How epliepsy affects your family

The reactions of family members to a diagnosis of epilepsy vary enormously. Many of those interviewed noted that, after the initial worry and concern, family members were usually supportive (see 'Sources of support for people with epilepsy').

Some people explained that family members found it difficult to talk about their epilepsy, even if they were generally helpful. One man reported that, while his family gave him support, they did not tell their friends about his epilepsy because he himself wanted to keep it quiet. He also discussed the support he had from his wife.

 
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Explains that his family were supportive, but they did not tell their friends about his epilepsy.

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Age at interview: 32
Sex: Male
Age at diagnosis: 24
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One of the big things in terms of me then with epilepsy, was the stigma around epilepsy and someone that had it. I work in professional services and I was concerned then that there would be an impact on my career and I basically didn't want to tell the work place at that point in time and didn't tell any friends. My family and I knew and that was it. And it progressively developed so it [the seizures] would happen once every few weeks and then it started to happen more frequently. And I'm now at the stage it will happen, or it has happened six times in a week or twice in a day.

Yes, so just going back to the beginning when you were first diagnosed how did you feel then? 

I was quite upset and slightly scared and just concerned about what, about the implications for me socially and career-wise.

Yes and how did your family feel at that time? 

I think they probably felt likewise, the same as me. You know one of the things is my parents have never told their friends because I adopted the approach early on I'm not telling anybody. And didn't tell people for 2 1/2 to 3 years. As a result they didn't tell their friends and then felt that they couldn't tell their friends 3 or 4 years later.

'Why me?' and 'why this family?' were questions that some people said they and their families initially asked. Others explained that, after early feelings of anxiety, family members were helpful and understanding. People often felt that, although their epilepsy was a subject that was not discussed very much, family members were concerned and eager to help.

One woman, newly diagnosed with epilepsy, explained how stressed and concerned both her family and her husband were. Another woman discussed her concerns about being a burden on her husband.

 
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Explains how her condition affected both her family and her husband.

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Age at interview: 27
Sex: Female
Age at diagnosis: 26
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My mum's always praying that I get well and she's always stressed. Everyone, I think I've affected everyone. When I was in hospital everyone was really stressed out. They gave up eating because you know if someone close to you, like I'm a child to my parents and I'm a sister to my brothers and my sister, and they were like they gave up. My sister, she couldn't eat, she couldn't sleep and the whole family was under stress. And my husband he was really stressed out, and my older son who was six and a half, he was really, I don't know how it affected him. He was like crying all the time. And my younger one he was really attached to me before, but now he's more attached to my sister because she's been looking after him for over a year now. So he's more attached to her and my mother now.  

So how long have you been living here, because last time I phoned you were at home? 

The thing is I come here, I mostly live here because once I have an attack, a major fit, I come back to my mother's place and I stay here probably one month, two months. And then I go back and I probably stay there probably three weeks or two weeks and then I'd have this really bad fit. And then my husband, he'd send me back. And now he says to me 'I want to take you back when you're really well, when you're more in control because I don't want to see you in that kind of condition, in that state, because I can't take it, I just can't take it.' Because he can't go through the day because he keeps on thinking back to what I did when I had a fit and he can't get it out of his mind. 

 

Discusses her concerns about being a burden on her husband.

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Age at interview: 48
Sex: Female
Age at diagnosis: 10
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How about talking to your husband, does that help you? 

Yes, of course that has helped me, but then again one also feels the burden of talking to one's partner. Of unloading on one's partner when its quite hard, I think, for one's partner to be constantly giving out to me because he needs a life of his own as well. So it's quite hard when I think that it's easy if both of you to become depressed and you both need outside help. 

Is your husband often here to help you then or, you mentioned last time that he'd changed his job and he's maybe around a lot more, or did I get that wrong?

No you haven't got that wrong, after thirty-seven years of working in the same job he's left. I don't think that has meant that he's been here more though. And I don't want him to have to feel that he needs to look after me, I think that's a horrible thing for another person to have to feel, even though he might like to feel he doesn't want to leave me alone I think he's got to. I've got to be alone; I've got to live my own life. And I want to live my own life.

Some people, who were diagnosed with epilepsy as children, recalled that their parents were often very protective towards them. Others reported that their parents did not treat them with extra concern. One woman discussed her parents' interests in her well-being and independence.

 

Recalls that her parents tended to be very protective of her.

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Age at interview: 42
Sex: Female
Age at diagnosis: 6
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So there aren't any great problems that stick in my mind from the beginning. It was as I got older that it became a problem because I think independence is the main thing that was, that you are restricted with, if you have got uncontrolled epilepsy, it is that restriction, it's a nuisance. So for example when I was in my teens and after a very caring, over-protective mother not wanting me to go and ride on friends' motorbikes or go to discos or do anything like that, I tended to think well I've got to struggle to show I can do it and I can do it safely, whereas my little sister gets it handed to her on a plate because she's safe. And things like that went through my mind then. And again as I got older it was more difficult to, to give her peace of mind with the idea of me leaving home at all.  She had to be confident that I was put in the polytechnic - as was - housing scheme rather than just go and find a house like a lot of my friends did.

 

Explains her parents' concerns about her independence and well-being.

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Age at interview: 30
Sex: Female
Age at diagnosis: 17
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You said your whole family has been really supportive, what have been their concerns over the years?

I think sort of lack of independence it's perhaps brought me. The, just the sort of discomfort it can bring, a seizure brings you. Or the fact that you have one on a train going into Paddington and people walk over you, you know it takes a nice person to stop, and that's wrong in this sort of world. And I think you know you can put yourself in a situation where you are totally at the you know mercy of other people, and that must be a worry. And just how it, you know affects my day-to-day life, what impact that has on it.

Some of those interviewed explained that their diagnosis affected different family members in different ways. One man noted how upset his grandmother was. He also recalled how his parents did not openly discuss his epilepsy but were supportive.

 

Discusses the reactions of his grandmother and how his parents were supportive but quiet about...

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Age at interview: 52
Sex: Male
Age at diagnosis: 15
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When the second time it came round, when I had the second fit which wasn't very long afterwards, and they decided that 'yeah you've got epilepsy', my grandmother, my grandparents, my grandmother particularly was really distraught, sobbing. And basically my parents were supportive but, they kept the, its like they kept the lid on things. Yeah they didn't want, there was a degree of shame if you like, not, I don't mean that unkindly on them, I think they meant well and they were very supportive to me. But they didn't want to go round saying 'Excuse me but my son's an epileptic,' and they would much rather I suppose naturally talk about success rather than what was certainly perceived as a failure.

One woman, whose husband had epilepsy, discussed her feelings of protectiveness towards him and her children. She also explained some of her own concerns as a carer of someone with poorly-controlled epilepsy.

 

Discusses some of her concerns as a carer.

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Age at interview: 54
Sex: Female
Age at diagnosis: 42
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I've gotta say I kept a lot from him. I never told him what he done. I would say for instance like 'You've had a seizure.' He would say 'Oh what happened?' And I would play it down. I wouldn't tell him all what had happened, fear of embarrassing him for a start, so I kept an awful lot back. 

And how many children have you got?

I've got two sons. 

And have they been you know over the years have they learnt a lot more about epilepsy?

Again I kept a lot from them. It was only, I think last year my eldest son who is now 26, he actually saw [my husband] having a seizure sitting in that chair down there. And he, I could see it happening, so I asked my daughter-in-law to take the grandchildren out and [my son] was sat there and at the end he said 'Mum, I didn't realise it was as bad. How, how on earth have you coped?' You do, you don't go round telling people what you're going through, you do keep a lot, a lot to yourself. And people say to me 'You should tell your children,' but why should you, they've got their lives to lead, they don't really want to know. 

Could you talk about your own feelings with your friend? 

Yes, yes she, like you know she was about the only one I could talk to because nobody else would understand, because if somebody's not seen somebody having a seizure they would think well what are you on about. And living with it even is totally different to someone seeing a seizure, living with the personality change is very hard, I'd say none of its easy. But you have to be strong for them you know.

Like all through, because [my husband] has always had a lot of illness, I've always had to be strong. There's no way I can go down, because he sticks under me if you know what I mean. He totally depends, and he has said this himself, he totally depends on me as his memory, as everything really, because the memory side of things has totally gone, over the years it has done so much damage.       

Last reviewed May 2016.
Last updated March 2014
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