“I have idiopathic generalized seizures, but they are brilliantly controlled now. If a seizure occurs, it’s due to excess alcohol, anxiety or stress. I am also very lucky that my seizures happen within the first hour or so of me waking. I don't usually tell people about my epilepsy, as it is not an issue.
“Employment, on the other hand, is a major issue. My recent employer was a large construction firm. When I joined, I didn't disclose my condition as I wasn’t a danger to others. I also didn't want to face unfair discrimination. Over the years, my company did become aware of my epilepsy. When I explained my condition to senior managers, I was treated fairly and equally.
“However, a few years ago, my epilepsy became a problem for them. I had a seizure one morning before work and a colleague told my manager. That’s when the issues arose. I had been through a redundancy process with this manager before, which was overturned. We supposedly had a clean slate. But when they found out I had a seizure off-site, they made my life hell. They sent me to occupational health, where I explained that I was fine to work, as my condition was stable. I was told to see a neurologist. Again, I explained I was fit to work, that my seizures are rare and happen within an hour or so of waking. The occupational health doctor Googled ‘epilepsy at work’ and then advised no working at heights or lone working. I wasn't even allowed to stand on a ladder. When I objected, he told me I wasn’t a neurologist and couldn’t vouch for my own safety. He had to err on the side of caution.
“I faced seizure-based jokes from my manager, including that I should be on a dog lead. The most humiliating thing was when they amended the doctor’s report and said I needed to walk around in a harness and a restraint. Despite all my experience and training, I was told I was no longer good enough to work there and offered a lump sum to leave. I refused, quit my job and took legal action.
“I have been offered a lot of money to settle out of court, which I do not want to do. Change won’t happen if I just accept a pay-off. My solicitor says it's a reasonable offer and if don't accept then I’ll need to pay huge legal fees to be able go to court. That is absolutely devastating for me. During this process, I’ve found out more. The company were saying that I was in denial about my epilepsy. That I was just seeking a settlement. They now deny ever knowing I had epilepsy, which hurts. They were the only firm ever to accept me when I told them about my condition and to let me work freely.
“People with epilepsy should not have to face stigma from employers who don’t understand it. They fear that person will have seizures in the workplace. The fear and the not knowing leads to discrimination. I also believe occupational health need to be given further training. In my case, they were over-cautious, again thinking solely of me having a seizure at work. In fact, the law states I can work freely if epilepsy is not an issue for me, or a safety issue to others. I proved that for many years, yet that right was taken away from me on health and safety grounds. I'm now looking to get the laws changed with help of my local MP and petitions to protect people with epilepsy. If they deem themselves fit and do not need any adjustments in carrying out their work, then they should have that protection.
“I want to show everyone, from people who have epilepsy to friends and family, that you can live a normal life with epilepsy.”