I kept my epilepsy disorder hidden for several years, once we determined the right combination of medications to keep it controlled. Anyone who knew about my injury also knew about the result, but as my life progressed and I went on to university and then into my career, I found that unless I brought it up, no one had to know that I live with epilepsy. I remember an advisor once telling me NOT to mention it in an interview, for fear that the disclosure would lead to discrimination, caused by fear and ignorance. Surely, though, in society today when it is becoming more and more acceptable to accommodate a wide range of physical and mental conditions in the workplace, the stigma surrounding epilepsy has decreased? Maybe not enough.
Last week I had a conversation with someone with epilepsy. He was excited because he was speaking to me from work. But also, he was quiet. He kept asking, “can you hear me okay?” I could, but I asked him “why are you concerned?” He answered, “my employer doesn’t know I have epilepsy and I am concerned that if they find out they might fire me.”
It is 2020, can you believe that someone should feel this way given all of the appropriate discriminatory protections that are in place? Unfortunately, it is true. Many may not understand the fears that go along with epilepsy. In addition to concerns about discrimination and the stigma of the disorder, even for those who are medically controlled there is the fear of having a seizure, worse still a seizure in public. How will people react? What will an employer say, or do, if I have a seizure? I have been seizure free for over 40 years and remember my last seizure like it was yesterday, and it was in public. I remember regaining consciousness and trying in my fatigued state to calm people and let them know I was okay and it was nothing to worry about.
For decades now I have openly spoken about my epilepsy with my friends and colleagues at work. They are all very accepting and have no concerns. They just ask what they should do if I have a seizure and have interest in what seizures are and why people get them. This is a turnaround from the situation when I was younger.
Fortunately, I have not been discriminated against, to my knowledge, and I have taken on a role of speaking publicly about my epilepsy. Those of us with epilepsy are not alien: the wiring of part of our brain doesn’t work perfectly, as is the case in other conditions: anxiety, depression and a whole host of other neurological and psychiatric disorders. Chemicals are not quite correctly balanced. When that happens elsewhere in the body the outcome may be something like allergic asthma, or high blood pressure or psoriasis. These conditions are more widely accepted by society presumably because there is less fear. Perhaps people fear what they do not understand?
One of the goals for Sail For Epilepsy is to educate the public about epilepsy, with the intention of making epilepsy less frightening and foreign.
After all, we are all human, none of us are perfect, accept us all as we are.