In my life with epilepsy it has been rare that I have experienced discrimination about my disease. I suffered my head accident which caused my epilepsy when I was 15. Back at school it was business as usual, except that with high doses of phenobarbital I often slept in class. My teachers worked with me as any another student, they didn’t give special privileges, thankfully, and I was slowly able to learn and eventually graduate (just). I have been very fortunate to have had incredibly supportive people around me.
Perhaps the first time I became aware of potential stigma associated with epilepsy was when I was beginning a search for a faculty position. I was told by a trusted advisor: “Don’t tell anyone about your epilepsy, it will affect your hiring potential.” I was shocked. “Wouldn’t they just make the decision to hire me based on my scientific merits?” Naive as well as shocked.
Thereafter, I rarely discussed my epilepsy in public until about a decade ago when I started to open up and begin my quest to support the epilepsy community in whatever manner I could. Being medically controlled, my epilepsy was not going to be “exposed” unless I chose to do so.
The one third of people with epilepsy who are not medically controlled are not able to make this choice. For example, one of our Virtual Shipmates, Hayden, was not allowed to go to school because his seizures were disruptive to others in class. What? How ridiculous. Surely Hayden should have been embraced and supported. Additionally, this was a great opportunity to teach others about epilepsy and how to provide seizure first aid. Let’s not sweep the 1 in 26 who will develop epilepsy under the rug and hope they will go away because people are uncomfortable and uneducated about seizure disorders.
But how much do those of us with epilepsy contribute to stigma by not being open and educating people around us? We don’t talk about epilepsy because of the stigma, yet the stigma exists in part because epilepsy isn’t widely discussed. Being open about epilepsy is a very personal decision and I can only provide examples based on my experience.
I have found that openness about epilepsy actually causes a very warm and supportive response. On my first day at University I went to a Hall of Residence (dormitory) social/party and within the hour I had a tonic-clonic seizure. There was no hiding my epilepsy. To say the least I was frustrated about starting University this way. But the next day, Charlie, my roommate, put his arm around me and said “Phil. What can I do to help you? Tell me about epilepsy.” The response was incredibly supportive as was the response from other classmates. I was their mate who happened to have epilepsy. We all dealt with it and it was no big deal. In fact, in retrospect, I am happy that I had that seizure, it was an ice breaker and I didn’t even need to discuss the fact that I had epilepsy.
So if you are reading this and are new to epilepsy, or any disorder for that matter, what can you do? Be like Charlie, be supportive, ask questions and most of all offer to be of help if needed.
If you have epilepsy, what are your experiences with stigma? I know my experiences have been very different than others. Kurt Eichenwald was dismissed from Swarthmore college due to his epilepsy. His book, A Mind Unraveled, is well worth a read as its very educational about epilepsy, stigmas and how one can fight for your rights.
I have also heard of others who have had problems that could easily sue in court, but their parents don’t want them to do so because when looking for a job in the future, they are concerned that a potential employer will do a Google search, discover this job candidate has epilepsy, and rule them out for the position.
We as a community can help reduce stigma by openly talking about epilepsy. Charlie became educated, he never questioned my epilepsy or held back in our interactions. Through Sail For Epilepsy, we are showing that someone with epilepsy can have a successful career and can do something as adventurous as cross an ocean, with the necessary safety measures in place. Clearly there are those that are so close minded that they will never be supportive. However, I have faith in humanity that with accurate information, they will understand that epilepsy is just like other disorders that affect the body, it just happens to be in the brain and can have a visually shocking presentation.
We’re all just people. The stigma associated with epilepsy is misinformed, misguided, and just plain wrong. Let’s help our community gain more acceptance by openly sharing.