‘No employer would consider me’ – work and epilepsy

Recent news stories have suggested that people who are out of work are to blame for the spate of riots across the country. They said people out of work are ‘lazy’ and ‘idle’ and that’s led to the recent unrest.

Many people with epilepsy can find themselves in this ‘out of work’ group. But they are far from idle, far from lazy and far from enjoying the situation they’re in.

Here’s just a few stories from people with epilepsy about work life when you also have epilepsy.

‘Some people have thought roles aren’t for me without any knowledge of my potential’

“I’m offended by the recent comments,” Murray Goulder says. He’s referring to statements made in the media in August about people who are out of work.

Murray has epilepsy, a hidden condition, but one which can present challenges to everyday life. Epilepsy is so varied, that the situation will be different for everyone.

For people with epilepsy, it’s often not a choice about whether to work or not. In some cases, the condition is too severe for people to work. In other cases, employer biases or misunderstanding around the condition can stand in the way.

Murray says: “I’ve had misconceptions and misunderstandings at work around epilepsy. Some colleagues in the past have considered epilepsy to be all about tonic-clonic seizures, to the point of being worried to work with me.

“Some people have thought certain roles aren’t suitable for me without any knowledge of my potential.

“I have worked full time for 28 years, up to 63 hours a week. It’s disgusting [to suggest if people are out of work, they’re lazy or idle] and attitudes need to change.”

‘I was told no employer would consider me’

Beverley has a talent for art and wanted to pursue it as a job. But epilepsy caused problems along the way – from seizures during exams to having to go into teaching to earn a living, which she couldn’t do with her seizures. Epilepsy made surviving as an artist almost impossible, requiring driving, the use of tools and chemicals or an initial influx of money to start up a career.

Facing this reality, Beverly remained far from idle, and began thinking of retraining.

She explains: “I stepped back and tried to work whilst considering which degree would be best. After 10 years of interviews for everything from toilet cleaner (chemicals too dangerous) to civil service, it was the Jobcentre who told me that I had to be ‘realistic’ and accept that no employer would consider me. Unemployment rates were already high, and the initial disability discrimination laws only helped people already in work, not people entering the job market, I was told.

“By the time I was 30, ‘ageism’ was a big topic, where anyone who’d studied after raising a child, for example, found it difficult to get a job unless they were very highly skilled.

“Voluntary work wasn’t permitted then, because the attitude was that if you could volunteer you could work – employers’ attitudes weren’t considered.

“What still hurts now is that other people (including the Department for Work and Pensions) assume that if I do voluntary work I can get a paid job.”

‘I had a brain haemorrhage at 22 and was immediately let go’

Chloe always wanted to be an actress. She found school difficult but studied hard in drama and secured a degree course in London.

She says: “I secured roles in small student pieces, did jobs for the BBC, had a role in a tribute act and signed to a record label as part of a duo. We had just began promoting our track when I fell ill.

“I had a brain haemorrhage when I was 22 and was immediately let go from the tribute act, the record label and my rental accommodation, and I had to move home.

“I’ve been offered jobs that I couldn’t take because they included travel that was too risky if I had a seizure. One was to work in London and Paris with fashion houses, models and high-profile clients.”

Chloe now works as a teacher working with young people who are not engaging with education. But even having found another job she loves, Chloe still faces discrimination because of her epilepsy.

“I love the constantly changing environment, and I enjoy helping young people.

“I have had many comments made about my ability to work with my condition. I’ve heard colleagues talking about me amongst themselves. I’ve had a member of staff tell me: ‘You shouldn’t be alone with children’.

“I was also told by a head of school how disappointed they were that I ‘had not disclosed’ my condition with them sooner. I have always disclosed my epilepsy when starting a new job. On this occasion, it was a failing by HR to inform the school over a month before my start date.

“Staff won’t sit near me in the staff room or meetings, and it can be so isolating.

“It’s not just what people say either. I have had responsibilities taken away, such as taking children to the toilet or helping to change and feed them, I’ve been told that parents feel their children are unsafe in my care, despite parents who I see daily never expressing any concerns to me.

“I have even been suspended from a post after having a seizure. This happened in front of staff, after hours. One teacher said they were going to administer my Buccolam, which I have never had. This would have been so dangerous, especially without staff training. Luckily, I regained consciousness in time.

“There is little support in the workplace for me, and management often have no knowledge of epilepsy and put no effort into offering first aid training for other staff. I am several months into a new post at school, and this lack of training still exists. There continues to be both indirect and direct discrimination in the workplace and a fear of this neurological condition.”

Full of dreams and aspirations

People with epilepsy can have a really hard time trying to find, secure, and keep a job. The condition is so varied and so misunderstood, that people often face poor attitudes and misconceptions.

A recent post on the Epilepsy Action members’ Facebook group showed that this group of people is full of dreams and aspirations. People wanted to become drivers, teachers, firefighters and fighter pilots, dreaming of joining the armed forces or going into nursing. Many have to work extra hard to achieve these dreams, and many don’t get to realise them at all because of their condition.

Many people with epilepsy have to go above and beyond just to get their foot in the door. They deserve better support and understanding to help them get into work and thrive there, not to be blamed for the country’s problems.