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.
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.
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.
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.
'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.
...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.
'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.
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.
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.
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.
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.
'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.
Copyright © 2024 University of Oxford. All rights reserved.