Epilepsy

How epilepsy affects work

Most people with well-controlled epilepsy said that finding suitable employment was not usually a problem. One man explained how supportive people at work had been, even when he lost his driving licence after a status epilepticus episode. Sometimes seizures do not stop, or one seizure follows another without the person recovering in between. If this goes on for 30 minutes or more it is called status epilepticus, or ‘status’. He also discussed some of the ways employers can discriminate against people with epilepsy.

Discusses the support he received from colleagues, and the ways employers can discriminate...

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Age at interview: 45

Sex: Male

Age at diagnosis: 26

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In terms of work, I don't think it's really affected me. I was, the second company I worked for which I'm presently employed by now, it wasn't even an issue when they approached me, which was great that a few of the people who worked there knew that I had epilepsy and it wasn't something that was questioned. The company car was part of the package and that was it. They knew I had a driving licence, so the question of epilepsy never came even into it

So again, even when I had the status seizure, the company's attitude was extremely positive, so much so that when I had to take a year out of driving and living twenty miles from work, they felt it was their responsibility to get me to work, which is a pretty amazing attitude. Now I did, one of the colleagues helped me and there wasn't really a problem. But their attitude still was even if, even if I was, they would let me work from home for two or three days a week, set me up with a laptop computer. And even to the point where a couple of the lads from work would come and get me from the garage themselves as part of the company that I worked for, and come and pick me up in the morning and get me to work.

That's fantastic.

Their approach was extremely good. But a lot of people were quite surprised by that and they said most employers wouldn't be like that, which is actually true. Most people wouldn't be like that, but I find that kind of attitude quite interesting when I remind, I do contradict them slightly when I say to them well if you add up the number of days lost in the workplace from conditions such as if people drink too much and things like that, then that is far higher than people who have epilepsy and have recurrent seizures. The important point is that people with say a drink problem or anything like that, a lot of the time stand a lot more chance of getting the job in the first place which comes down to the discrimination side, which is obviously very unfair.

Several people discussed the support and empathy they'd had from colleagues. A few also mentioned giving information to employers and colleagues so that they would know what to do if they had a seizure.

People often discussed when to tell employers about their condition. Many of those interviewed said that, when employers do not know much about epilepsy, it can frighten them. Often people told employers about their epilepsy when they had been offered the job. One woman, however, had told employers about her epilepsy shortly after starting the job. She also noted that her epilepsy had not prevented her from getting promoted.

Explains that epilepsy can be frightening to people who do not know much about it.

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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It's difficult to know whether you should tell people, especially with the kind of seizures I had. I could be standing talking with a customer or a member of a support, you know people and just black out for a minute, you think what's that going to cause. It varies what kind of sort of job you're doing. I mean the first group, first job that I had I was in a leisure centre. They made me feel I was the wrong person there. I had somebody, one of my bosses watching me every time I was in the building which made me very edgy. So I stuck it out for about three or four months and then I gave up, I thought I can't do this. So she got what she wanted was for me to leave. But this second job that I managed to get, he was frightened with me having the seizures because he'd never actually seen them before but gradually he accepted them. He made me feel welcome.

Discusses telling employers about her epilepsy shortly after starting work, and getting promoted...

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Age at interview: 46

Sex: Female

Age at diagnosis: 18

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What I did was, I was working in a nursing home and it was going to shut down. So I went to, I applied for one where I am now, up the road here and it's a Jewish care home. And when I went to get the job, as I say the epilepsy doesn't even bother me that bad. I got the interview, I had the interview, that was fine and I had the job. And I think I was there for about six weeks afterwards and I had just I think a slight mild attack and they said 'Are you all right?' And I said 'Yeah to be quite honest I suffer from epilepsy. I said I didn't tell you in the thing.' And they said 'Oh you're a bit naughty, you should have done.' I said 'Well I should have done but would you have taken me on?' They said 'No.' I said 'Well there you go then.' So I said 'Well do what you like.' I think we had a word with a lady, she was like the area manager who had to come from head office, she came down and she said, 'Well as long as you don't fall and hurt yourself, just sit down.'

She was very good actually and she said 'Just, obviously there's two or three of you on in the building at any one time.' She says 'And if the bell goes someone's,' because otherwise if I was being a bit vacant at the time and the fire alarm went off 'there could be a problem there,' she said. She said 'No, no problem,' it didn't matter you know, and she said you know, I think she asked and I did agree at the time, well every three years I

go to the occupational therapist.

Have you moved, you said it [epilepsy] hadn't affected promotion or anything like that ?

I was like a Social Worker, I was there about three years, no four years and then they asked, the position came up and they said 'Do you want to apply?' I thought well I won't get it. They said 'Well apply you never know, you work all right'. And I think I do, I mean I have me odd days! (laughs). And I applied and then I got it, and I've been there nine years now.

One man explained that, although he had told all those people who needed to know at work, he was wary of telling everyone. Another discussed how he did not tell employers about his epilepsy and his concerns about doing so in professional occupations.

Explains why he didn't tell employers about his epilepsy.

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Age at interview: 52

Sex: Male

Age at diagnosis: 15

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And subsequently if I went anywhere I would find out where the toilet was or where there was a bolt hole for me to get, if anything happened, that I could get away. And I successfully managed to cover that up, well I must have done it fairly successfully because I basically leapfrogged up the education ladder. I stopped one career, started another and moved very quickly up that ladder so I think it was hidden.

...So um, I don't feel any resentment about my career. 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 of '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.

I think its as difficult, it's a very difficult thing to quantify. But we are at the moment in a game where markets are depressed, the economy is down, the world economies are down. When somebody takes a person on, when a company takes a person on, they take that person on to use them to make a profit. And whatever they may say in their mission statements and all the rest of it, the bottom line is they have to make a profit. They're not going to take somebody on who may in the middle of a sales talk have an epileptic fit. Or um who may, because they're not necessarily aware of what epilepsy is, that they, they don't want somebody who they think well if he's epileptic he may have some psychological disorders or who may have loads of time off, a whole range of things on that. No I think its just as difficult, and I would give the advice to a young person to get good medical advice but don't ever tell anybody about it. I'm talking here of people who are going to be accountants or um, I think teachers is still a profession but also the professional man or woman who works in business, anybody, that is, who is working at a certain intellectual level.

For some, having seizures had led to problems at work or to losing their jobs (see 'Epilepsy - driving and transport'). One man described how his epilepsy had affected his work as a solicitor. Another discussed how it had led him to leave his job in the police force. One woman had taken an employer to a tribunal and discussed some of the problems she had encountered at work when she was having a lot of seizures. Another woman explained that she had agreed to leave her job when her seizures recurred.

Explains how having epilepsy affected his job in the police force.

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Age at interview: 43

Sex: Male

Age at diagnosis: 27

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I went into work fully expecting as a police officer to tell them that you know I had epilepsy and that they as the caring employer would then look after me and everything would be fine. I went and saw the police force doctor, and yet again another doctor said, he asked me the question "So what did the hospital say to you?" I told him that they'd explained I'd got epilepsy and his only reply was "Oh dear that's the end of your police career."

In the meantime, in the intervening time, the 18 months, the police had basically retired me and I went from - and we're talking about 17 years ago - earning quite a good salary as a police officer, suddenly to be a janitor as it were working at the training centre. I decided obviously that I couldn't rely on winning my appeal because I didn't know how long that was going to take, so I spent the next 18 months with them sort of moving through various stages, taking on different roles, getting back to a better level. Because in the initial stages I'd gone to virtually a quarter of the pay I'd been on originally, which at that stage was very, very hard.

'Unfortunately 12 months later I had a reoccurrence and had to leave the police because it had come back again, the epilepsy. At that stage I was quite happy to go, I think I'd had enough of the battle. I'd been fighting you know this sort of appeal and then struggling, I've got to be honest, I've got to say struggling for a year in the police, and I thought 'That's the end of it'. And I came out.

Discusses taking an employer to a tribunal and some of the problems she had at work.

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Age at interview: 39

Sex: Female

Age at diagnosis: 25

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I've lost my job five times because of epilepsy and it was never a problem to me but the people around me, a lot of people just couldn't handle it. I did have, I know just because I made a point of finding out that if an employer takes you on in the knowledge that you have epilepsy, then they have to meet certain health and safety criteria, then that's up to them. As long as they know you've got it when you start, they've got to look after you. So I took one company to tribunal, they actually settled out of court. And the other four I didn't bother, no I hadn't been working for them for long enough so I couldn't really do anything about it, but you know, that's five times.

Was it the colleagues around you that made you feel very uncomfortable or the management?

One particular company, I'd been with them for about eighteen months and they had an extension built on to the existing building. And while they had the extension, just as it was being finished, they suspended me on full pay while they found out whether I would be safe to work in the new extension or not. Which is crazy. So I was off work for six weeks, totally humiliated, feeling isolated again and sort of made to look you know, and while I was off I made a point of finding out, I wrote to ACAS, TUC, all sorts of people. 'Where do I stand legally if they turn around and say we don't want you here.' They tried to, I think they'd just had enough of the epilepsy, it was pretty bad at the time, I think they were just trying to shove me out the back door you know.

The effects of medication on concentration and performance at work were also of concern to some, particularly those with poorly-controlled epilepsy. One man felt that he had lost several jobs because of his inability to concentrate. Others explained how stress and pressure often brought on seizures, and they felt restricted in the jobs they could pursue. People also discussed how work affected their confidence and self-esteem.

Discusses the effects of work on seizures as well as on his confidence.

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Age at interview: 26

Sex: Male

Age at diagnosis: 18

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It certainly does damage your confidence, particularly at work. However, I'm looking at alternative employment, working for myself perhaps. There's work which I've originally been interested in which I know would perhaps you know increase the likelihood of attacks, so I know now that I need to try and find something which if possible is more relaxed. Although I'm prepared to actually work at anything, just work hard, I do need to just consider the fact that any stressful job will actually bring on attacks and I've experienced that this week, one intense day, where so much was expected of me resulted in an attack that evening.

Some people found it difficult to get jobs, particularly if their epilepsy was poorly-controlled. One woman was declared unfit to work and she described how this affected her life. A man said that he was now wary of changing jobs because finding work had been difficult in the past.

Recalls being declared 'unfit to work' and how this affected her.

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Age at interview: 53

Sex: Female

Age at diagnosis: 51

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I had been looking forward to going back to work that's perfectly true though I was a bit apprehensive as I haven't worked for a long time. And all this accident with my head happened at exactly the wrong time because I didn't have any option but to go back to work because [my daughter] hit 16. At this point I was in no fit state to work and you know though I went along and I tried to do things and whatever, and in the end the doctor wrote me a certificate, writing me off I think for four months I think it was. And then he sent me another, the DHSS another form for another few months. The next thing I know I get a letter from the DHSS telling me that I'm disabled. This arrived on 2nd January 2001 and I thought what a lovely way to start the new millennium. I was a bit upset, you know I was angry. But anyway it's been useful because no one no longer is hassling me to go to work. The fact that I've been written off is depressing, the fact that I know that there are jobs out there that I could do perfectly easily but I can't because I can't rely on being able to remember things, you cannot go and work as a secretary for example and be in a situation where one minute you can't remember how to use the phone, you know. Or you don't even know what a phone is for sometimes, you cannot go out to work and be in that situation.

Several people with poorly-controlled epilepsy had found it difficult to get work and benefited from doing voluntary work. One man, who had non-epileptic seizures, was working on a 'therapeutic earnings' basis (a flexible arrangement that allows people to work what they can manage and be paid a certain number of hours).

Explains that he is wary of changing jobs because of the difficulties with finding work in the past.

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Age at interview: 50

Sex: Male

Age at diagnosis: 2

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I started work back in 1969 at the hospital and before that it was difficult for me to get a job, every time I mentioned the word [epilepsy] they didn't want me. They just refused to give me the job and this is how it went on over a year, so it was a bit depressing. Having to keep going again and again back to the Job Centre and find another place to go, it was a bit depressing then. And eventually the job which I'd been doing was found for me by a professor of the hospital and that's where it all started.

Well it's the way all epilepsy sufferers are concerned about, if they get a job then they're lucky and they've just got to hang on to it otherwise they may not get another job if they give it up. This is what I've been thinking in the past, worried about getting another job if I leave this one.

Discusses some of the difficulties with finding work and the benefits of doing charity work.

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Age at interview: 42

Sex: Female

Age at diagnosis: 6

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But you say 'epilepsy' and that just sends most people completely awry because they can't identify with that unlike many illnesses, they're not quite sure what would happen.

And to be fair to employers I can't even tell them. I can't predict when I'm going to have a seizure, what kind of seizure it may be, how severe that seizure may be, whether it will provoke another one within the next two hours. And I can't even tell them that yes I will do a certain amount of work within a certain period of time. So I can see the employer's point of view. Together with the fact that you may be an insurance liability in certain areas as well. But I think that is only due again to a lack of information. Since I've been doing more charity work I've found far more value in my own self as a result, I've realised there are jobs maybe I can do. Maybe I'm not so worthless because actually in the charity sense I'm probably doing far more work than many of the people I know who are employed in the care area, you know I don't, I'm working hard and I'm not getting paid for it is the only difference, so maybe I can consider that as an idea.

Explains that he is working on a therapeutic earnings basis.

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Age at interview: 39

Sex: Male

Age at diagnosis: 35

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I work on a therapeutic earnings basis so I only work 5, 6 hours a week. I earn a small amount of money but there is an opportunity for a job coming up.

Yes, what's this job coming up?

There is an opportunity of a job coming up in the same position that I'm doing now only part time or full time. Again we have to get the funding for it obviously.

Yes so are you thinking of doing it part time?

I'm thinking of doing it part time, may be 21, 22 hours a week.

Oh that's good

24 hours a week.

Does that mean you're feeling a bit better than you were before?

Yes, yes I am yes.

How are you feeling better now, can you tell me a bit about that?

Well when I go to work I'm able to cope with the work, I'm able to cope with the pressures, I don't take too much time off

I do more than 6 hours a week but I only get paid for 6 hours a week. I work about 15 or 20 hours a week and I'm trying to monitor how many hours I work so that I can find out what I'm capable of.

Last reviewed May 2016.
Last updated May 2016.