Our phone chat #23 – Karl

Maria: Hi Karl, I have been chatting with people about their epilepsy stories. I understand that you would like to talk about employment and epilepsy. Have you found that having epilepsy has been a barrier to finding employment?

Karl: There is a funny sort of barrier in employment and I think that it has a lot to do with fear. Currently, I work in an organisation that looks after people with epilepsy and so the staff are always on alert to the next seizure happening. I feel comfortable knowing that my colleagues will look after me too if I had a seizure. We have yearly seizure training seminars which helps us to understand epilepsy. Interestingly, my colleagues are more inquisitive about my epilepsy rather than making assumptions about my condition. My epilepsy never comes up in conversations and I am expected to do my job just like everyone else. What I really like about where I work is the fact that there are policies around health. If I had cancer, my job would be left open for me whilst I got better. Likewise, because I have epilepsy there are accommodations made for me should I need time off work.

Maria: That is fantastic news. What did you do before this job?

Karl: I am a trained accountant and so I worked in the business world. The staff were more concerned that I would bring shame to the firm if I had a seizure.

Maria: Goodness me, how does that work in this day and age? Would they feel shame if you had a heart attack, asthmatic attack, or a stroke?

From a business perspective it makes good sense to employ a person with a disability such as epilepsy. Society’s views on a business are influenced by the people who work there, and if businesses are shown to celebrate diversity and support people with disabilities then there would be strategic, commercial, legal, social, ethical and personal benefits.

Karl: I left the business world which is so stressful and draining and then I found this job, which is great. Management and staff are also able to accommodate the fact that I don’t drive. Not being able to drive is a barrier to employment but, of course many of us with epilepsy can’t drive. I have, however, done some amazing things in my job that hasn’t required me to drive, for example, last year I took a client to America on holiday. The usual concerns were expressed about what would happen if I had a seizure, but I have good seizure control, I take my medications, and I look after myself. I didn’t see travelling to America as a problem.

Maria: How was your holiday?

Karl: It was great and I never had a seizure either.

Maria: That is the interesting thing about epilepsy, you never know when the next seizure is going to happen and when it does then that is the time to take action. There are plenty of people with good first aid training out there in the community who can help with seizures.

Karl: I have found most people to be really sincere, helpful and compassionate when I have had a seizure. The odd person has got it wrong though like the time I was given CPR.

Maria: Or worse still the defibrillator comes out when you are breathing on recovery. It doesn’t bear thinking about.

I have designed individual epilepsy action plans that can be shared with carers, work colleagues, schools, family members and friends etc. These plans show what types of seizures to expect and how to help. It really takes the guess work and fear out of knowing what to do in moments of stress.

Karl: That is a great idea and really helpful. Everyone with epilepsy should have one.

Maria: I am super pleased that you have found a great job where having epilepsy is not considered a liability. That speaks volumes about the organisation that you work for. I have met your employer and your colleagues and I delighted to know that they value your work.
Take care and keep up the good work.