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Epilepsy

Living with epilepsy

Many people we interviewed discussed how epilepsy affected their daily lives. They explained that their own perceptions and attitudes as well as the reactions of others were important in terms of how they felt about themselves and their condition. Their feelings were also bound up with whether their epilepsy was controlled or not, the type and frequency of seizures, and their age.

Some people with well-controlled epilepsy explained that their condition did not affect their everyday lives in any major way, although they took medication daily. One man said that he discussed his epilepsy openly with other people. His epilepsy had made him more determined to prove himself and he stressed some of the positive impacts having epilepsy had had on his life. Others with well-controlled epilepsy discussed gaining control over seizures and being able to drive again. Some people explained that, although epilepsy no longer affected them, they were involved in promoting awareness of the condition.

 

Discusses being open about his epilepsy and the positive impact it has had on his life.

Discusses being open about his epilepsy and the positive impact it has had on his life.

Age at interview: 43
Sex: Male
Age at diagnosis: 27
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Everybody I knew, relatives, people that I worked with, when I saw it as being necessary I told them about it. It wasn't something I hid from anybody and I, you know I've mentioned it in the past to many people and it's never been a secret. And I've found that to be very beneficial because I've found it obviously easier to talk about it, it's easy to get problems off your chest when you can discuss it with a wider range of people. And I think people accept you a lot easier when they know exactly what it's all about. If there's a mystique behind it then they obviously then throw up possible barriers and concerns and worries.  But by talking about it openly and not being at all concerned about 'this is what I've got', I found that to be a great assistance.

I would say I've always been fairly outgoing and you know, if anything, the one thing I did notice and I read this and I would agree with it 100%, is it makes you far more determined to prove yourself, to prove that yes okay I've got epilepsy but I'm as good as you, you know the next man or the next person. And that I can actually achieve as much as anybody else, and that if that person can get to that grade in management then there's no reason why I can't. The epilepsy is not going to stand in my way. So in that respect I would say I've probably done more.

...But now I would say you know the positive side of the epilepsy is that the drive it gave me to prove myself has led me to where I am today. And I'm very happy, very happy indeed. 

 

Discusses his interest in promoting public awareness of epilepsy.

Discusses his interest in promoting public awareness of epilepsy.

Age at interview: 45
Sex: Male
Age at diagnosis: 26
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What did you explore in your dissertation?  What kinds of things?

The raising of public awareness, how much people know, how much they don't know, the way [my brother] and I reacted to epilepsy in different ways, mainly due to the different ways we came across it. As I say, I had a tremendous advantage in knowing about the condition when I was diagnosed, which I do think makes a vast difference.  

I think one of the most important aspects is getting knowledge across to the general public so that that in turn will affect the way in which people with epilepsy are actually treated by, whether it's employers, whether it's people in general, and I do feel that the vast majority sometimes rely on the organisations too much. I don't think the organisations are big enough and strong enough to actually be able to tap in to the whole of the general public. They haven't got the resources, they haven't got the famous person behind them at the moment for instance. They haven't got an Ian Botham or an Elton John or someone like that at the moment, I hope they get somebody pretty famous to actually talk about the condition in a more open way, and that's why I feel that people with epilepsy have got to be encouraged to talk more openly about their condition. Because unless they do that, then I don't think the understanding of the condition will ever be achieved.

People whose epilepsy was not controlled also discussed their feelings about living with epilepsy. Some explained how they kept themselves busy and occupied and did not 'give in' to the epilepsy. Many discussed the benefits of joining epilepsy support groups and organisations. They often noted that many other people were worse off than they. One man described how he had kept his epilepsy secret and the impacts that this had had on his life.

 

Explains how she has not given in to her epilepsy by keeping herself busy.

Explains how she has not given in to her epilepsy by keeping herself busy.

Age at interview: 46
Sex: Female
Age at diagnosis: 18
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I've always been very busy and as I say I've always had the children and after I was diagnosed I had my first baby, then I had another one eighteen months later and then the other two, so I've got like in the course of about seven years four children. So bringing them up, they're just almost going off my hands, the youngest is 15 and my oldest one she's 25. And I've always worked, it's been a case of having to really, you know. My husband he's a taxi driver, he drives the black cabs so it's been handy really, if I've needed him to be off because he's self-employed, he could have stayed off. But I don't think touch wood he's never had to take a day off for my health or anything. And, I think in some ways he would have done, he might have been an hour or so late going out to work, because the kids might have been not too good but on the whole I've never let it [epilepsy] stop me, and I've always made it one thing, it's not gonna stop me from doing anything. The only thing I can't do is drive and I've never wanted to drive. 

It didn't stop me doing anything and I won't, because you know the day you become sort of disabled, I suppose you're giving in. I'm not saying you're giving in to it, you've got to recognise you've got a problem, but I've cooked. Perhaps I've just been lucky, haven't had many problems that way. I've not really burnt myself or anything like that, I've never done anything like that and as soon as I get the warning you sort of back off a bit. Although you ignore it, I think subconsciously you don't ignore it, if you know what I mean. 

 

Feels that keeping his epilepsy a secret caused him a lot of damage.

Feels that keeping his epilepsy a secret caused him a lot of damage.

Age at interview: 52
Sex: Male
Age at diagnosis: 15
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But I do think this, my life has been one of deceit and it has been really refreshing to be able to say 'Hey I have epilepsy, I'm no different to you, I'm not a creature with two heads, I'm not mentally deficient. There have been occasions when I've blacked out, when I've had a seizure and its been a bit alarming.' But I hadn't ever said that. And in saying that now I think it made me more aware of, well firstly of myself. Also what my family and my friends have put themselves through in terms of their support, particularly my wife and my close friends.

'What it did do to me, it made me deceitful. It made me very angry, very much the epitome of the angry young man, 'OK I have epilepsy but I'm going to prove it to you lot' and that sort of thing. Maybe in these days workaholism is considered to be a positive virtue, may be it was a good thing but I don't think it was, I don't think it was good for me as a person. I think hiding it was the worst thing and the biggest damage that happened.

Several of those interviewed discussed how people with poorly-controlled epilepsy can get depressed at times because of the condition, the lack of independence, and the unpredictability of seizures. One woman advised against letting depression and negativity become overwhelming. Another stressed that, while her epilepsy could get her down, she also tried to think positively.

 

Advises against blaming everything on the epilepsy and letting depression overwhelm you.

Advises against blaming everything on the epilepsy and letting depression overwhelm you.

Age at interview: 42
Sex: Female
Age at diagnosis: 6
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But really, yes, people spend a lot of time telling you what you shouldn't do, what you can't do, how to be safe, and I think if you follow that too often you end up feeling you're worthless. Put that together with a lack of independence if you're in a position where you can't drive, or it's not maybe safe for you to live at home by yourself, it can be very frustrating, that would create a lot of depression. The depression will just bring you down and down and make you far more likely then to have seizures. You're less resistant to anything then aren't you, if you're at a low ebb it's far more likely that you'll have seizures.

...You can very easily fall into the trap of feeling sorry for yourself and then blaming everything on epilepsy because it covers so many aspects of life. If one thing happens at one end you can blame something at the other end and say it's epilepsy and use it as a tool against yourself. That's something you've got to be very careful of I think and that's a reason why you do need good friends around you. They don't necessarily need to be friends who have an understanding of epilepsy, just good friends.  And most people have at least one or two good friends.
 

Explains her positive outlook despite periods of depression.

Explains her positive outlook despite periods of depression.

Age at interview: 30
Sex: Female
Age at diagnosis: 17
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I sometimes wonder whether I'll ever kick out at the fact that I've never really let my hair down, which comes with protecting yourself, sleep, things like that.  But on the whole I keep it under wraps. Occasionally I have really, really lost it. And been very, very, very down about it. I've had a fantastic GP, I've been very lucky from that point of view. 

'If anything it's put more into my life, I believe, because I think that I'm a better person - that's not the right expression - but it has given me, people remember you, I mean that's a terrible thing to say but they remember [Name], she's the person with epilepsy. So you know they, it's a discussion topic if nothing else' 'Why aren't you drinking?' Oh well you know 'I have epilepsy.' They start off thinking you're really a dull person you know, oh she's not drinking and they end up thinking actually this is quite interesting. So what do I do, you learn, you're teaching people. It's one of the few topics in life that I get truly passionate about and to me what would I have if I didn't have that. But..

People also discussed feelings of isolation and not wanting to mix with others. The fear of having seizures sometimes led them to become house-bound and withdrawn.

 

Describes how the fear of having seizures made him withdrawn.

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Describes how the fear of having seizures made him withdrawn.

Age at interview: 43
Sex: Male
Age at diagnosis: 9
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I was told by another doctor that they [anti-epileptic drugs] were all tranquilisers. So they were making me very drowsy during my working hours especially. In the evening of course they helped me sleep but during my working hours it was terrible. I was studying and concentrating on my job. And I just wasn't interested in getting involved really with other things in the outside world. This is what kept me away from it, epilepsy, and if there was anything I wanted to do after finishing work it would have been just getting home quickly and shutting myself in the house and just cut myself off from the outside world where I could just sit and relax. And  there I would be happy. But I was always in fear of a seizure coming on, a blank seizure. I just didn't want to mix in with anything that was going on.

Several people with poorly-controlled epilepsy recalled feeling restricted when they were younger. Others discussed feeling restricted because they could not drive, do some sporting activities, and because of tiredness (see 'Epilepsy - leisure, safety and risks'). Those who had been diagnosed with epilepsy later in life explained how the condition affected their independence and ability to take charge as they had once done.

 

Recalls the frustration of feeling restricted when she was younger.

Recalls the frustration of feeling restricted when she was younger.

Age at interview: 21
Sex: Female
Age at diagnosis: 11
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The only thing that I found very annoying as I was growing up was things like all my friends, like when it came to going to clubs and stuff, was that girl friends would go to parties and stuff and I couldn't go to them because of the lights, the strobe lights and stuff like that. And I found that very annoying. It was very frustrating because obviously all the girls were going out and that was the in place to be, and you always wanted to be down the club down the road. And I couldn't go to them just because of these lights, and it was really frustrating. And then you go back to school on a Monday and everybody's saying 'Oh, did you see this person down there, oh it was all fantastic, it was wonderful.' And you just missed out on all of it. And you'd just have some crappy weekend doing the same old thing, and you just weren't in with any of it.   

And you know it was just very, very boring after a while because, and that depressed you in a way because it was always your health that was restricting you. But obviously you, after a while you just got used to it and you just started to realise that this was something that you had to accept and there was no point in depressing yourself about it because at the end of the day, there was nothing you could do about it. And if you ended up depressing yourself, then all you were gonna do was make yourself more unhappy. 

Some people with poorly-controlled epilepsy discussed how they were gradually building up their confidence and becoming more independent. For many people, accepting that they had epilepsy was an important step to dealing and living positively with it. They also discussed issues of stigma and the lack of public awareness of epilepsy (see 'How epilepsy affects others'). Many stressed the importance of having a positive attitude and social support. For some, a sense of humour was also helpful.

 

Discusses gradually building up her confidence and becoming more independent.

Discusses gradually building up her confidence and becoming more independent.

Age at interview: 32
Sex: Female
Age at diagnosis: 20
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What's helped you over the years to have a positive attitude?

Just myself and building up my confidence myself because a year ago, before I joined up with this group, I didn't relax, I just didn't do anything. I didn't work. I stayed at home or just went out and just saw people. I have now got a network of friends so getting the job, I'd like to get a full time job eventually. Obviously I'm gonna come across people saying 'Oh you've got epilepsy, you've got this,' and I'll say 'Well I've just worked doing a job, why not take me on now? I've proved again that I can actually work.' Because before my husband used to keep me but now I keep myself, I get a little bit of help but eventually I would like to get a full time job. Not now, in the far future, so that I can look after myself but still have the people around and the family around.

 

Realises that accepting he has epilepsy is an important step to dealing and living with it.

Realises that accepting he has epilepsy is an important step to dealing and living with it.

Age at interview: 35
Sex: Male
Age at diagnosis: 13
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Basically they [seizures] started coming back and this time they were complex partial seizures, so it's during the day I'd wander off and behave in unusual ways. At first I was living in denial,  you don't know you're having a seizure unless someone has told you, and the point there is whilst you can feel unusual chemical reactions going on through your body when you're coming out of a seizure, or you've lost your memory or whatever. You slowly have to start realising if you've lost your possessions or you've locked yourself out of the house or if you do have a seizure and you've bitten your tongue, you can't live in denial forever. Which ultimately goes along to the fifth phase of having to start accepting it which is what I'm going through now. Whilst I accept it, I'm more aware of things I do. I don't let it stop my life. I have lots of seizures and loads of auras if you want to call it that, but they're actually simple partial seizures.  

And more recently as the epilepsy has come back that's when I realised that phase three, that period where it was supposedly controlled, I wasn't actually accepting that I was still prone to seizures and the side effects of the medication.  Now I have become aware of that, hence the interest in the subject and my sitting here at the moment talking about it, it's part of the process of accepting it but recognising there are strengths in having the condition as well as not necessarily being able to do other things.

People, with both well- and poorly-controlled epilepsy, were also concerned about the effects of anti-epileptic drugs on memory.

 

Wonders about the effects of anti-epileptic drugs on his memory.

Wonders about the effects of anti-epileptic drugs on his memory.

Age at interview: 43
Sex: Male
Age at diagnosis: 27
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I've been controlled now for almost 10 years. I've had my driving licence back for the vast majority of that time. I actually have a job now which relies upon being able to drive. I have very little problems at the moment with my epilepsy and if anything really it was a stage of my life that I've been through, and I know that because I take tablets day and night I still if you like am a sufferer but it doesn't affect me in any way whatsoever, with the possible exception of say my memory. 

'My only concern really at the moment is I do wonder sometimes whether the amount of tablets I'm taking is a lot, whether I ought to consider possibly adjusting that amount, whether I need to be taking that amount at the moment and what effect long term it's having on me. And I don't know as anybody has really got that answer. So that would be my only concern currently.  Other than that I would say that I'm happy and you know life now is fine thank you very much. 

Last reviewed May 2016.
Last updated March2014.

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