Epilepsy in Young People
Epilepsy - work and (un)employment
Being able to find and do work was one of the main priorities for the young people we spoke with. Here they talk about their experiences of finding work, the challenges and helpful things when in a job, and experiences of unemployment.
Applying for jobs
Almost all of those we spoke with had looked for work at some point after their epilepsy diagnosis. Some had got work easily, either casual or more permanent, and felt that epilepsy had not been a factor in any way. One woman said that getting work had turned out to be much easier than she had expected before leaving school.
Anna has never had any problems getting work. She's explained to her employers what her seizures...
Does employability concern you at all?
Generally its okay, I think it's because its quite a subtle thing that I never feel it's gonna be kind of something that would be very noticeable, because it's not very noticeable. As long as I can to say to an employer, these are the kind of seizures that I have, I cope in this way, all I need you to do is to be aware of it, then I've never had a problem, so kind of think that I'll have more problems in the future with it.
Unless you suddenly decide to be a heavy goods vehicle driver [laughs].
Yes [laughs], but there's a list of my neurologist ran through one day, I was like, 'It's okay, that's alright.'
For many, finding work had been really difficult. A common concern was whether, how and when to tell potential employers about their epilepsy. The Disability Discrimination Act (DDA) is a law which makes it illegal to discriminate against anyone with a long-term health condition or disability, like epilepsy. The DDA applies to all areas of life, including work. There is no obligation to disclose a disability in a job application or an interview but it can be a good idea (see below Support and safety in the work place and also 'Resources' section).
People's views and experiences of telling they had epilepsy when applying for work varied. Many said that they always told potential employers about their epilepsy in the interview or mentioned it in the application form.
Alistair has always made it clear in job applications that he has epilepsy. He says it's...
Because of her memory problems, Helen has become very organised. She explains how she can turn...
A couple of people felt more reassured about telling they had epilepsy when applying for work in bigger companies with Human Resources (HR) departments. One woman always contacts the HR department beforehand in case the interview involves any practical tests that she might need special arrangements for. She had only ever had positive experiences of doing this.
Some people were worried that they hadn't got jobs they'd applied for precisely because they'd been upfront about having epilepsy at the application stage.
Omar has been applying for jobs for months. He says the application process can be depressing...
Several people felt they had suffered discrimination when applying for work because of having epilepsy. A few described how they could sense the change in tone in an otherwise positive job interview after they mentioned they had epilepsy. One man said that 'their face would change and it would be, “Okay we'll get back to you”', and he'd never hear back.
Employment has been one of the hardest things for Carole. She finds it hard to know if, when and...
Especially living in this area, it's not exactly an opportunistic place for young people so, yet again there's that barrier of where you live and their acceptance, the younger people and stuff like that. Also the barriers being narrowed, 'What can I do?' Obviously if you've wanted to be a truck driver all your life well all of a sudden that goes flying out the window. I personally, my sights weren't very high as a child, I wanted to be a teacher, so it wasn't like a rocket science or anything like that, I just wanted to be a teacher. Now it was, 'Am I ever going to get through the education?', I didn't know whether it was appropriate to work with kids, would I be allowed to work with children, then it was well it was the fact of when I was actually working, it was constantly getting fired, due to me not telling them. All of a sudden I would have like an absence or something like that and it was, it was back to the drawing board constantly. I think one thing that does highly frustrate me because I'm looking for a job now just sort of a weekend job and it's just the fact that yet again no one understands, like people's different reactions to you applying for a job and obviously now with our culture of suing, and health and safety that's made it a lot more difficult for well anyone with a medical problem to get a job. It's yet again, is it okay for us to employ you, and it's an incredibly frustrating with stuff like that.
Some said it varied whether they mentioned epilepsy and hadn't noticed it to make a difference either way to getting jobs. A few chose not to mention that they had epilepsy when applying for work because they worried they might be discriminated against and not have a fair chance of getting the job. Some, who hadn't mentioned beforehand that they had epilepsy, had problems later, when the employer had found out. The Disability Law Service is able to give advice and representation to people with disabilities who feel they have been discriminated against in the workplace.
There are only a handful of jobs for which people with epilepsy can't apply, such as the armed forces. A few young men said that they had been planning to join the army but changed their plans after being diagnosed.
Alistair had wanted to join the armed forces or the ambulance service but had to give that up...
How do you feel about that?
It did upset me a little bit. Because I thought I want to work in the Army, follow me uncle's steps but like I say I got over it. I looked into it more and I thought I could do this job instead. Instead of going into Army to be a nurse or to be a paramedic I can do it in the local hospital. So that has been okay. But sometimes when I do look back I think oh I could be doing this job if I didn't have epilepsy, so but otherwise now I've got over it. I've got more targets to do.
And maybe something kind of in a similar area you can do.
Yeah, same job. You might see more people working in hospital than working in Army. You might be meeting different people each day.
People also talked about some of the other challenges when looking for work. A couple of people had wanted to be paramedics but, because they couldn't get a driving licence, decided to do nursing instead. People who lived in a rural area or a small town said that not being able to drive restricted their search for jobs.
Ben got help from Workability and Royal British Legion Industries (RLBI), who can also help with...
Dad' They've been helpful to you but they haven't actually found you anything yet.
Ben' No. I think that's more a case of them having to come back to me but RBLI is more my interests and what I would like to do, how I would like to work. Whereas Workability is finding the jobs available in the area and saying, 'Is this a good idea for you? Is this not travelling-wise?' See with the RBLI they've said to me that there's, I can't remember what was called now, something like 'getting into work' or 'help getting to work' where they will arrange for a taxi to pick me up and drive me to work and back again. So I can explore work outside of the area which is wonderful so there's that option as well, yeah it's quite, quite helpful really.
A couple of people also said that the longer they were out of work, the more difficult it was to get back to work life and to 'explain the gaps' in their CV. Not managing to find a job was not because of a lack of trying and many said they'd take any work. One man who was desperate to work said that all he needed was someone to 'give him a chance'.
Jason wants to work in a shop and has been selling plants in the shop of his residential college....
Yeah. You've kind of done that a little bit here as well, if you've been selling plants and things like that.
Yeah. My mum wants me to become a gardener, but I told her that I want to work in a shop first. Then, I start thinking about working in a garden.
Challenges in the work place
As with school and studying, frequent seizures and some of the medication side effects were among the challenges that affected some people in work. A woman who had worked in a bank got so anxious about the possibility of having a seizure at work that the pressure had got too much for her and she resigned.
Charli decided to resign from her job because she was too worried that she might have a seizure...
Some people said they'd been sacked from work because of epilepsy and felt it was possibly after they had had a seizure at work.
Ben says he was 'discreetly discriminated' against at work and asked to leave a job shortly after...
Carole was sacked because her employers felt that her workplace wasn't suitable for her.
Yes I have, I have in a couple of cases, I won't mention names, but I have actually been sent to like occupational health and I've been given, I think it's classed as redundancy money to leave cos I find that they always turn it back around to, 'It was, it's not appropriate for you to work here.' And I remember I enjoyed this job so much I was almost pleading with this person, 'Please' and she was like, 'I'm really sorry,' 'cos it was a multi national company, it was like, 'I'm really sorry, it's not in my power, it's the fact that you didn't inform us and now it's not appropriate for you to work here,' and it's almost the fact and it's just a vicious circle then. It's like, 'Well you wouldn't have employed me if you would've known, if you're gonna sack me because you now know.'
Another woman to whom this had happened twice said first time she appealed against the employer, but lost, and the second time she just didn't want to bother anymore.
The DDA aims to prevent people being treated unfairly because of their medical condition. However, the health and safety regulations at a work place (The Health and Safety at Work Act; HSWA) take priority over the DDA. This means that in some situations, employing a person with epilepsy could put them, or others, at risk. If no reasonable adjustments can be made that would reduce the risk, it may mean that under Health and Safety regulations someone can be refused a job. The DDA cannot be used to enforce changes that would break the HSWA.
Support and safety in the work place
James works in the local shop and is going to move to a bigger one because he's been doing so well.
What do you do in the shop?
Stack the shelves, I also get the, we also, you know rather than doing the trolleys we have baskets and I have to do all the baskets put them back there again. Always back to the place where they're supposed to be to the door, gotta do that.
Many people had positive experiences of finding work and of employers who had been very supportive of their needs in the work place. A few mentioned their employers were flexible in allowing them to take time off for hospital appointments or understanding if they sometimes needed to take a day off because of a seizure.
Nick's employer has been flexible in allowing him to take time off work for appointments or after...
I've had about three fits in that office, and they always always deal with it. The whole office just get folders and gets up and oh don't start getting in a panic, okay. The woman who runs the health and safety is very understanding about the whole thing, and she appreciates my condition and knows about it, so she knows, [excuse me], I sit down and get them little arms you know how they're adjustable, bumpf, up goes the arms of the chairs so I don't fall off the chair. And she gets the fan out, she fans us with a book and all that sort of thing and then calm down and she says, 'Well are you okay?' Obviously after it I go home, but I mean you say you know, you're your parents, should I call, what do I do about it? So I mean they've always been understanding, and about breaks, and like having to take the day off, and then like having to take the day off after the fit in order to recover properly and then work again. I've in fact operated on reduced hours for quite a while; I worked a 28 hour week instead of thirty seven and a half, which is quite, which is very good actually, so it just happened, I mean I had to deal a whole lot less really.
One woman explained that her employer had made sure she didn't need to work shifts and prioritised her need to have a regular work routine. In many work places all the necessary staff had been informed about the person's epilepsy, especially the first aiders. One woman's employer was very supportive when she was going through a bad period with her seizures and suggested she took a few days off. Further, to minimise work pressures, she was offered extra training which had all helped her cope much better. Many people said that, more than anything, their employers and work mates had been understanding and concerned about them.
Becky's workmates have always been supportive and 'watch out' for her.
A safe work environment is very important for people with poorly controlled epilepsy. As part of the DDA, employers are required to make sure that the work environment is suitable and safe for employees. One benefit of discussing any special requirements because of epilepsy, for example, at an early stage in a new job is to help the employer be aware of and address any particular individual needs. People had encountered various jobs where they had to think about a safe environment - working in pubs, kitchens, factories, labs and also when working with people, as in health care jobs, nurseries or hairdressing. Those people who had an aura (also called 'a warning') pointed out how this enabled them to get to a safe place before a seizure.
Several people we spoke with did voluntary work, which was a good way to get work experience and boost their CVs. If otherwise out of work, it also gave them something meaningful to do. Some had worked for St John Ambulance and Shopmobililty, helped out in kids' clubs, worked with people with learning difficulties and for epilepsy charities.
Unemployment and benefits
Some people had not managed to get work, despite their efforts. A couple of people's seizures had been so poorly controlled that working had been impossible. One woman in her late 20s had been unemployed for ten years but was now - having become seizure-free after brain surgery - looking forward to getting back to education and eventually working.
Donna finds it harder to get back into work the longer she's been out of it. She's now looking...
You said you've had quite bad experiences with employers.
Yeah, I mean it's gonna be difficult because I'm gonna have to tell people why I haven't been employed for such a long time. I have thought about that. But I can only sort of just be upfront and say well look this is why I haven't worked for 12 years because I suffered with a long term condition, but since I've been better and I've done this that and the other. I've done several courses, I'm you know doing my voluntary work. I've got no qualifications as such, but I've got hands-on experience and this is why I've got to keep up with my voluntary work, until I know that I'm well. At the minute I know I'm not well enough to go back to work part time, but I've gotta be doing something. So it looks good for me, when I do decide to go back to work, probably next year now. Part time maybe to start off with, and then just build it up from there. Again I'm lucky that I'm still young enough to start again. I'm not over the hill yet [laughs].
Not yet. I'm doing a course, at the end of this month on mental health. So I'm just sort of getting all the free education in where I can, 'cos there's plenty of adult education centres and things now. And the work that I want to do anyway, a lot of the times you do get training with it. Because care work is not something that everybody wants. You've gotta be a special person to do it I think. You've gotta be dedicated to do it, and I am. I've got, I think one of my gifts is I'm good with people. You know, again through the years of having epilepsy when I have done work it's been with disabled children, it's been in care homes, it's voluntary work I did for about a year with adults with learning difficulties. So I'm looking to go into the care sort of work, that's what I definitely want to do.
For those that couldn't work some were eligible for government benefits. Young people had found it difficult to get benefits and some hadn't even known for a while that they could apply for them. One woman pointed out that it would good to get some help with filling in the forms, especially when often feeling ill and tired anyway.
Carole talks about her experiences of job seeking and how tricky it has been to apply for...
Can you tell me more about the benefits-side, you said that's difficult issue as well?
Yes, I mean not so much the job seekers', I mean 'cos everyone's entitled to once out of work, but it's more the disabled one. You always get that question on whatever form you may be filling in, whether it's for I don't know for some sort of ticket for a concert or something, 'Are you disabled?' I never know what to put down because it's sort of, 'Am I?', it seems to be that you're disabled when convenient really, when it comes sort of like in certain jobs you're classed as disabled like you're not able to drive, therefore you're disabled. But when it comes to disability allowance well you're able to walk and go around in a normal way, so you're not disabled, so it's sort of when convenient for them really. And I've personally applied for a disability living allowance twice. I'm currently applying for it now, and I applied for it when I was a lot younger as well, when I was about 16 or something. When I had actually found out about it to begin with, you have to ask about it cos there is no given information about it. I got turned down due to not being, not being diagnosed so.
I mean it's just ridiculous that benefit, there is no proper, how can I put it, there seems to be no set goals that you have meet to get it. And if you do meet them but certainly not, I mean, the problem with being epileptic, you're not so black and white as, 'Do you have problems in the bath when you're having a wash?', 'Yes I would have problems if I was having a seizure.' But maybe tomorrow I might not, but maybe the next day I might. I mean it's not so easy to answer the questions and to tell people that sort of information cos you just don't know. And there's no area for us to slot into, we can't fit into anything.
For links to more information see our 'Practical matters resources'.
Last reviewed May 2016.
Last updated May 2016.