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Epilepsy

Sources of support for people with epilepsy

Coming to terms with a diagnosis of epilepsy can be difficult, whether the epilepsy is quickly controlled or not. Living with poorly-controlled epilepsy can also be hard, and support is very important. Many of the people we interviewed discussed getting support from various sources. Family and friends were often crucial to helping the person with epilepsy deal with their feelings. Some people explained how calm and understanding their partners were. Others had had support from their children and one woman recalled how her grandmother had been particularly understanding.

 

Discusses how family and friends support him.

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Discusses how family and friends support him.

Age at interview: 26
Sex: Male
Age at diagnosis: 18
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They're [family] really keen to help me in any way they can, they're just extremely supportive and I am just so grateful. And I just hope that any other people in a similar situation have the same support that I do. It's just so important they actually have someone to turn to, whether it's friends or other sufferers or specialists. 

You mentioned that your family have been interested in finding out more about epilepsy and they've always been quite supportive. Have you found friends to be supportive as well or has it varied? 

I have yes, the majority of them are compassionate. But, like I said before, you do need a sense of humour. It could be they mock particular things but both of you know it's a serious issue and they're aware. The effect it has actually had or does actually have. They're aware that in a social sense you find the attacks embarrassing. So, you know, they are certainly compassionate. Some people are interested as well in finding out about the experience, exactly what happens to you, but I've found yeah the majority of people to be very compassionate, which has helped a great deal.

 

Explains how calm and supportive her husband is.

Explains how calm and supportive her husband is.

Age at interview: 30
Sex: Female
Age at diagnosis: 17
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But my husband is fantastic about it. His mother doesn't quite understand as much - perhaps we'll edit that bit! (laughs). But he is very good and you know, when I started seeing him, went and bought books on epilepsy. And found out about it. And I'm very lucky, all the people around me have always accepted it. 

And you said that your husband's been a really good support over the years. In what way has be been a really good support?

He's very calm about it and I think, when you come round from a fit you don't want to know that all hell has let loose. He's very calm and he'll put me to bed and he'll, you know, put me into my pyjamas. And put on a little night light so it's not bright and he'll just be, not sitting there like, I don't wake up to this worried face, he's just listening out for me waking up. And because there's that time with me, there's that time between the end of a seizure and me coming round, in that time he'll have made preparations for tomorrow or made sure someone could be with me. Or just, and it doesn't faze him as far as he's concerned, you know, its just anything, it could be anything. 

Some of those interviewed discussed the support they'd had from outside the family. Sometimes they did not want to burden family members or wanted to talk to someone outside the family. Counselling was very helpful for some, and many people praised the help they'd had from counsellors. Others discussed talking to epilepsy nurses, both for emotional support and advice on medications.

 

Praises the support she received from counsellors.

Praises the support she received from counsellors.

Age at interview: 33
Sex: Female
Age at diagnosis: 21
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How did the counsellors help?

It was nice to be able to bring out all your problems with somebody out of your house. You know you can talk to a limit with your parents, who don't really know about it. The counsellors are different people again. I think I'm lucky with the Support Group Leader that we go to, she's a counsellor but she doesn't specialise in this medical condition, but she knows how to talk to people, she makes you feel welcome.

 

Talks about the support she had from an epilepsy nurse.

Talks about the support she had from an epilepsy nurse.

Age at interview: 28
Sex: Female
Age at diagnosis: 19
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I think that's an excellent service, I was so impressed with that. Because you've got somebody you can ring, she'll [epilepsy nurse] find out your answers and they'll ring back to you, which is the thing that I've been most impressed with the level of care by the specialists.

...So when I sent that fax, when I was having problems with the Keppra (levetiracetam) she then rang me back and said 'You know you can ring me up don't you?' 'Oh no I didn't.' And they just said 'OK I understand what's going on, so in the meantime this is what I think you should do.' Which is what I was doing, I just changed the dose because I was starting with the dose in the morning and I just changed it to the night so I didn't have to take it before I went to work. But I slept like the dead. And she said 'OK well just do that and then next week just play with it, see if you can introduce it in the day.' And so I tried that again and I was just this space cadet at work, I just couldn't, I couldn't work, and I just rang up and said 'I can't, I can't do it.'  And she said 'All right.' 

Many people also mentioned epilepsy organisations and several people discussed the information they'd been given. Others explained how they had talked to people on telephone helplines about their concerns. Advice, information and support from epilepsy organisations were valued by many people. One man described how an epilepsy organisation had supported him in a case against his employers.

 

Explains how an epilepsy organisation supported him.

Explains how an epilepsy organisation supported him.

Age at interview: 43
Sex: Male
Age at diagnosis: 27
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At what stage did you contact them [epilepsy organisation]?

More or less immediately, as soon as I came out of hospital, having been told that I'd got epilepsy I thought, well I've got to find out as much as I can about this, so I contacted them. They as I say were very good, I joined the association, been a member of the association ever since. I even wrote an article at one stage in their magazine just to sort of talk through my experiences and the fact that, having lost my job originally, I'd won it back, which

Did they help you during the case at all?

Yes, well they did because they offered advice. I think what happened was, when I won that appeal, they were the ones that managed to find out that a similar set of circumstances had occurred to another police officer down south somewhere. And as a consequence I became like the second police officer to win an appeal to get my job back. So in that respect, had they not offered that assistance, we might never have found out about this other police officer. And not knowing about this other police officer we wouldn't have known how to have framed our appeal if you like. Basically we followed exactly what they'd done, and then if it was good enough for that guy then it was good enough for me. So we won because of the Epilepsy Association.  Unfortunately I had the relapse, but that's not their fault. 

Support groups were a particularly important source of support for some. Many people said that talking to someone else with the condition helped them to learn more about it, as well as to understand their own feelings. Discussing their concerns with someone who had experienced something similar also benefitted people who felt isolated or depressed.

 

Is enthusiastic about joining a support group.

Is enthusiastic about joining a support group.

Age at interview: 28
Sex: Male
Age at diagnosis: 15
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When did you find out about the support group and join it?

It was quite a few years ago. Basically I started the group, being an unknown to what epilepsy was about. And I mean I knew bits and pieces about my fits, what I had to do, what tablets I had to take, you know and stuff like that. But I found joining a support group was very beneficial for me, very beneficial. It helped me with talking to people about my epilepsy as a whole, and also listening to others. And I found that, I found out more information through that, from just one meeting alone than I would have learnt in well say several months. But, and I must admit, now that I understand other people and their side of what they go through with epilepsy, I also find a new sort of found respect of my own epilepsy as well as everybody else's. Yeah I've always loved going to the meetings yeah, and making new friends, meeting people, making friends and that's what it's all about. 

Having a religious or spiritual faith was a source of support and strength for some people. Many of these discussed how they'd had support from church members or strength through prayer. One man said that he'd had healing from his church pastor (laying on of hands). One woman, whose son had severe epilepsy, explained how her spirituality had helped her cope and understand.

 

Discusses the strength she received from her faith.

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Discusses the strength she received from her faith.

Age at interview: 27
Sex: Female
Age at diagnosis: 26
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And you said your faith has become stronger as well?

Yes, because my faith within my religion which is Islam, I'm a Muslim, it's become much stronger now. And my faith has given me strength to deal with my illness as well.

So do you pray more ? 

I pray more and it's helped me have a reason to live. So it's helped me. If I'm depressed, if I pray, it helps to make my depression go away. Or if I feel negative about something, my religion makes it much better, you know. It takes all the negative things out of my life and brings more positive things into it. When I pray it feels like it relieves my depression and I slowly calm down.

Yes, so if someone was going through that kind of depression, what kind of advice could you give to someone from your own experiences?

If you feel really depressed I'd ask them to pray to, well my faith is Islam, I would ask them to pray to Allah, God, because God, he controls everything and he'd answer your prayer and you'd come through this depression. And you need to think positive and not to think negative all the time because you will overcome this period in your life and it will not always be like this.

 

Explains how her spirituality has helped her cope and understand.

Explains how her spirituality has helped her cope and understand.

Age at interview: 22
Sex: Female
Age at diagnosis: 1
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Well I sort of have a global spirituality. I'm a bit sort of New Age but I believe in Buddhism and Hinduism and things like that. And I believe that [my son] been put on this earth to teach me a lesson I have to learn. I'm not a conventional European person (laughs). I think my belief in this sort of, I believe that my spirituality helps me keep going really. I'm not sure if I was a Christian and, it would be different. I think within the Christian communities they have to rely on each other and with somebody with epilepsy you have to rely on yourself. And that's what I've learnt over the years is self-reliance, and using my own intuition. If you feel that something is going drastically wrong, go to the doctor straight away, don't wait. If you're found out to not be right that's fair enough, but your child depends on it.  

A few people found a pet to be a source of support when a person is having a seizure.

 

Describes how his dog helped when he was having a seizure.

Describes how his dog helped when he was having a seizure.

Age at interview: 57
Sex: Male
Age at diagnosis: 30
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Now there was, we used - you can see the picture over the back there - our old dog, we lost him a couple of years ago and he always used to sit in there, and that's my chair. Now sometimes if I was um, having a funny turn it's weird because, sometimes if you just sort of flop off into a thing, people don't realise it you know. But he would, it was weird really because he would be there pushing and that, or he'd go and tell somebody else; it was weird really, you know how they knew. You know it's funny.

So he would alert somebody else? 

He would alert somebody or try and push you, you know to sort of rouse you, it was weird really, you know if you were sort of um.

Did you find that quite reassuring? 

Yeah, it's funny really because there was somebody there you know what I mean, really, yeah.

Good 

Yeah a couple of times you know, I mean, when you sort of pull yourself round, you know when came and there was him sitting there and pushing you know, on his chair. Weird really. 

For useful organisations please see our Resources’ section.

Last reviewed May 2016.
Last updated March 2014.

 
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