Epilepsy

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.

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. 

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.

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.

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. 

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. 

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'. 

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.

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.

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

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. 

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.

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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.

Voluntary work

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. 

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.

For links to more information see our 'Practical matters resources'.

Last reviewed May 2016.

Last updated May 2016.

 

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