Epilepsy

How epilepsy affects you

People react to a diagnosis of epilepsy in different ways. For some, the news is shocking and distressing. For others, it is a relief to have a name for the symptoms they have been experiencing.

Many people we interviewed described the impact their diagnosis had on them. Feelings of anxiety, shock and disappointment were common. One woman, who was diagnosed at the age of ten, recalled her feelings of shock. She also explained how having epilepsy affected her confidence and led her to try to prove she was as good as everyone else.

Recalls feeling shocked and trying to prove herself.

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Age at interview: 48

Sex: Female

Age at diagnosis: 10

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I don't remember an awful lot about being told that I had epilepsy, whether people did tell me I just don't remember, it just came as a big shock, this frightening thing that happened. I went along to the Hospital here, I lived in a village and I met a consultant who seemed to have not an awful lot of interest in me. I'm sure he hardly even looked at me, I was in the room for maybe two or three minutes. He would ask me about how many fits I'd had and I would say how many fits I'd had that year and I wouldn't see him for another year.

I was put on drugs. At the beginning Epanutin and there was I, a 10 year old girl, never having heard of epilepsy before suddenly thrown into my secondary school with this thing that seemed to shock everybody and caused everybody great upset and fear. And although it caused me upset and fear as well I pretended it didn't and I tried to be really cool and hard about all this but inside its, I think each seizure just killed me really.

I rebelled quite a lot at school. I found that the only way to, for me to survive was by pretending that nothing really got to me, that I was as good as the next person, if not better. And so instead of being able to be my own personality I had to be this rather hard person who joined up with a group of girls who seemed to be really quite sophisticated, doing things that I would never want to do. But I just pretended I was also doing them, and getting into trouble with the teachers.

Because I think that's one of the things that's so important about epilepsy is it's so easy to lose confidence in oneself.

Disbelief was another common reaction, as well as feelings of anger and bitterness. One woman explained her husband's misery when he first saw his own seizures on video.

Describes her husband's misery when he first saw his seizures on video.

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Age at interview: 54

Sex: Female

Age at diagnosis: 42

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But then obviously this [epilepsy] come along and I sort of, I had to sort of say to him well there's something not right about you. You need to go to the hospital, I think its this and of course he didn't want to believe it; I didn't want to believe it, but from the outside I could see what was happening. So he is very bitter about it, the fact that he's had to give up so much, mainly the driving. In fact he had to, straight away, hand in his licence which you know you're told at the time you don't have to but he was advised to.

You said that you video recorded [husband] and then you showed [him], what did he think?

He was just absolutely gob smacked. He just, he just sat there with tears rolling down his face with just, he was just so embarrassed. And he, 'That's not me,' you know, although he knew it was 'me'. And he just sort of felt so much anger. He just felt really, you know, sorry for me' 'How have you put up with me for all these years with this?'

Describes her disbelief at the news of her diagnosis.

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Describes her disbelief at the news of her diagnosis.

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Age at interview: 52

Sex: Female

Age at diagnosis: 30

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And it was decided that I had got, unfortunately I was suffering with epilepsy. And from there onwards I just seemed to be in one seizure out, in, out and that went on not as things are now where they're more settled. I was lucky to get through probably about two days without a seizure. I then went to see a doctor in Norwich as I came out. Away from the hospital I went and saw a doctor for my epilepsy privately because I couldn't believe at that point that I had got this problem. '[Name] suffering with seizures? Never. Definitely not.'

But no, my ex-husband paid for me to see somebody privately and he said 'Yes, that is what, [Name], you are suffering with'. So, fair enough, not really getting it into my brain that that was the problem. I think I was trying to live through something, was 'No, they may have said that but no that can't be'. And then I went from the situation of that one private consultation, of going to see a doctor at the [hospital] on a reasonably regular timescale.

Anxiety and depression at some point also affected those we interviewed, particularly if the epilepsy was poorly-controlled (see 'Anxiety and depression with epilepsy'). Many of those we talked to discussed their feelings of depression and isolation over the years. They often advised seeing counsellors, joining epilepsy support groups, and having a positive outlook.

Peoples' reactions to a diagnosis of epilepsy were often bound up with their concerns about the impact it would have on their lives. The impact of the diagnosis on driving was important for some. Other people discussed the impacts on work, social life, and independence. One woman explained that, although she was happy to have a label for her symptoms, she was concerned about the reactions of other people.

Discusses how her epilepsy affected her work and independence.

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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I saw about two or three doctors and they all sort of kept changing saying "Well let's just increase it [the drugs]," and it was just ruling my life. I couldn't, I didn't have the independence that I was used to doing, because I was driving just before that happened, so I was having to stay at home most of the time. My confidence had gone out the window with doing anything. I lost one job because of having this medical problem but I managed to get another one with the help of a friend of mine, she was working in a business.

...So most of the time I wasn't going out, I was losing my independence, depending to be taken door to door by you know cars, my parents or my brother would take me. It is really since I'm no longer having them [seizures] I've got more independence. I suppose I'm lucky with getting the travel pass as well, which it's easier for the over 60s to get it but if you have a medical condition you can also apply for the travel pass as well, which enables you to go from door to door on your own which makes you feel a bit stronger.

Explains that she was happy to have a label for her symptoms but was concerned about other...

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Age at interview: 53

Sex: Female

Age at diagnosis: 51

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And how did you feel then when you?

What when I was diagnosed, shocked because I didn't consider these weird episodes to be epilepsy, I didn't know what they were, to be honest I thought I was going mad. I was wondering if I'd got some brain disease but I am a bit neurotic. Then when they told me I had epilepsy I was shocked and I didn't believe it because I always thought of epilepsy like the people I've seen having fits in the street. And in the end the doctor said to me you know that's, I said "How can I have petit mal?" And he said "Well these things you are doing that's the petit mal." And I sort of went "Oh," and I felt really stupid. But in a way I was relieved because I hadn't got a brain disease, touch wood. I hadn't got senile dementia or anything like that so I was relieved, I was happy to have a label, I was happy at the thought that there was treatment available that could help so, you know. I was worried about some people's reactions because it is a stigmatised disease but I didn't keep it secret, I just didn't advertise it. I was quite open about it because I have this belief that the best way to keep a secret is to keep it in the open, because then people aren't interested in it.

So yes you know I have not kept it secret although at first my initial reactions were, you know, how are people going to react to me. It's stigmatised, am I going to get worse, am I going to end up having proper fits, no, no, no, highly unlikely. So it was a confusing period but in the end I thought right I know what it is, it's better than what I thought it might have been, I can get tablets and I've not kept it a secret at all.

Feelings of relief were also discussed. One woman described her feelings of excitement and relief at having a name for her condition. She wanted to tell other people about her epilepsy, though also discussed her feelings of depression and isolation.

Describes her feelings of relief as well as depression and isolation.

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Age at interview: 31

Sex: Female

Age at diagnosis: 25

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I was sort of excited really to have found out that there was a name for what had happened. And I thought oh epilepsy, that's not too bad. And I'm gonna have a scan, that's fine, and they won't find anything and you know OK, I'll carry on. I was probably a bit shocked but I didn't feel too bad.

No, I was seeing him [consultant] on the NHS after the first appointment, every six months or so, and every appointment I went to I'd get very, very upset.

Why was that?

Just because of the isolation and the, because I was depressed about it. And I felt he wasn't really helping. He just said 'Take the medication and everything will be OK.'

I think my, my concerns lessened as time went on but I did talk to people about it. And I, at one stage I felt that I wanted just to tell everyone I knew that I had epilepsy. And I think that that was because I was hoping I might find someone who'd say 'Oh yes so have I.' But I didn't ever find anyone, so then I stopped telling everyone. But people that I work with know. Its not a secret but I did used to sort of go around telling, I would have told someone I was sitting next to on the bus you know. But now I just tell people that need to know. Because sometimes people will say 'Oh well why don't you drive? And I can explain its because I have epilepsy.

Just that perhaps at the beginning it would have been useful to know how, it would have been useful to speak to or have contact with people who were further on from the diagnosis to know how they'd got to where they were at, and how they were feeling then. Because at the time it was just a sort of bleak future and I couldn't imagine feeling better. If someone had said 'Oh well that happened to me and actually three years on its not as bad' I would have felt better. So that would have been helpful.

Some of those interviewed had not known anything about epilepsy when they were diagnosed. They explained how the diagnosis meant little to them. Others, who had had epilepsy as very young children, described how they had grown up with the condition.

Explains that the diagnosis of epilepsy meant little to her.

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Age at interview: 21

Sex: Female

Age at diagnosis: 11

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And when I woke up I was in the hospital with all my family around me and that was when I was told that I had had a seizure. And this obviously meant absolutely nothing to me. I had absolutely no idea what a seizure was, I'd never been told or even heard about it before and the next thing I was basically told by the doctor was that I would have to go on this sort of tablet which was at the time was referred to as sodium valproate. And that was basically the end of the story. That was as far as it was put to me. And then I was just passed a pack of pills and told this is what you have to be put on this many times a day. And that was basically it, that was as far as it went for me at that time.

I wasn't, I didn't realise that there was any more to it, I was just, I was just basically passed these pills and told that I was an epileptic and that's as far as it went.

Explains that she was diagnosed as a child and has grown up with having epilepsy.

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Age at interview: 42

Sex: Female

Age at diagnosis: 6

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Well to begin with I suppose I would consider myself to be very lucky because I've had epilepsy since I was 6 years old so from my own point of view it's just something that's just always been there. I've always had epilepsy therefore I haven't had to adapt my life style to suit the seizures, its grown up around it anyway.

When I started meeting others who'd had far more extreme problems with school attitudes and lack of help in schools, ignorance about the condition itself was completely in schools, I was quite amazed. I hadn't realised there's an awful lot I took for granted as being everybody got that sort of help, but when I found out it didn't happen like that and the world was not quite as nice as my world had been I felt I think, I think I felt guilty that maybe I'd had so much help and so much support. It didn't seem right that everyone else should be suffering this kind of ignorance.

Several people said that they were calm when hearing the news of their diagnosis, often because they knew a bit about epilepsy already. One woman said that her mother had epilepsy and so she was not too anxious about her own diagnosis. One man explained that his brother had epilepsy. Another decided to 'get on with life' and not let the epilepsy affect him too much. One man described how he considered his feelings after leaving the hospital. He also explained how his supportive family and friends, and a sense of humour, had helped him.

Explains that his brother had epilepsy, and how he felt calm when he was later diagnosed...

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Age at interview: 45

Sex: Male

Age at diagnosis: 26

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Um, it was interesting from, in my experience because at the time my brother also had epilepsy itself, so during the next few months I was very fortunate in that I didn't have to go through the usual stigma phase that a lot of patients go through. When people usually get diagnosed with epilepsy, unless they know someone with the condition, then their usual questions are 'Why me?' They can be very frightened, withdrawn etc.

But when you know someone so close that you've known so long then you, I also as I said earlier thought I may have the condition, then it didn't come as all that much of a surprise to me. So even my doctor, when he spoke to me about it, said I was quite laid back about it. I said all I know now is the name so what's the problem. And he was quite surprised, which I presume would be quite normal really because a lot of people do get quite upset, which I've actually seen myself.

So you didn't feel upset in any way or disappointed in any way?

Not at all because I realised immediately that I'd gone throughout my life until the age of 26 having epilepsy but it hadn't affected me in any shape or form because of the seizures being so mild. After then I was obviously diagnosed.

Discusses his attitude of getting on with life even though he has epilepsy.

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Age at interview: 43

Sex: Male

Age at diagnosis: 27

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Again it was just one of those things you know that I always took the view that que sera, sera, whatever will be will be, just get on with it. And so we looked towards you know the day when eventually I would get my license back.

So at that point obviously it was difficult but we set to and decided well there's not a lot of point sort of you know worrying about this, it's something that you've got to get over, it's not going to change anything you know by sort of sitting there and being sorry for yourself. So at one stage we actually decided we were going to try and run our own business. It was only because we couldn't sell our house that we didn't get the chance. So we actually even went to that sort of extent that we would, once I came out of the police, sell the house and actually buy a little business. Which didn't come off but we were prepared to sort of, if you like, forge ahead and not let it worry us.

Discusses how he felt after leaving the hospital, support from others and having a sense of humour.

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Age at interview: 26

Sex: Male

Age at diagnosis: 18

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From the point when it was diagnosed, I remember laughing about it. But when you have the opportunity to actually sit down and realise that you fall into the category of being disabled, slowly your smile wears off. You realise that there will be new challenges, people will perceive you in a different way.

But there are emotional spells, you have your ups and downs. You aim to control those but I am just so grateful that I've a supportive family and supportive friends who take a great interest in the problem itself and my progress.

...Provided you inform people, the sensation of the experience when you have an attack and what they should expect if and when you do have an attack, it generally tends to help. You have to have a sense of humour so despite the fact that they are sympathetic, they can't really appreciate what you're going through. It does help a great deal and its not always the case, that you do have an attack in someone else's presence.

People also discussed their concerns about telling other people and the reactions of others (see 'How epilepsy affects others').

Last reviewed May 2016.
Last updated March 2014.