August 29, 2017

The Stigma of Epilepsy

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.


I come from a family of epileptics. My father had it when he was younger, my two older sisters had it, followed by me and my younger brother.

My oldest sister, Paula, was the first of my siblings to exhibit signs of epilepsy. She first took a seizure when she was 2 or 3 years old while walking alongside my mother. This was in the late 1970’s and my mother had never been exposed to it so she did not know what was happening. She brought Paula to the hospital and my father soon arrived too. The doctors were asking my parents all sorts of questions about their medical history and specifically about whether epilepsy ran in the family. Both denied ever having it. It all only started to make sense when my paternal grandmother showed up and very casually told my mother not to worry, as my father had had it when he was younger.

My father was too embarrassed to say he had a history of epilepsy. Having grown up in Ireland in the 1950’s, he had experienced first-hand the stigma of epilepsy. His father, my grandfather, always told him never to talk about it. To this day he still doesn’t.

Times have changed since then and people are more aware of epilepsy, but to say that the stigma is gone would be a lie. I suffered with epilepsy until I was 7, and although I was never embarrassed to say that I had a history of it, I did feel that I was on the lower end of the scale when it came to the illness. There was a girl who lived around the corner from me growing up and she suffered from a severe form of epilepsy—so severe that she had to have surgery as medication could not control it, or so the neighbors said. She would lose her temper a lot and get into trouble with the police and people would make fun of her because of it. At the time, my view, as someone who also suffered from epilepsy, was that I thought she was unhinged. Everyone else thought so too, and that it was because she was epileptic. And I thought it too. But that didn’t apply to me, I thought, because I was on the lower end of the scale. So not only was she being judged by people who had no exposure to the illness, she was being judged by people who HAD the illness.

I had a mixed form of epilepsy. I had the typical epileptic seizures at first but then it got milder and it would manifest itself in other ways, such as staring, eyes rolling, and falling down. It became so frequent that my mother made me wear a helmet when I was outside playing. We lived on the top floor of an apartment block and she was afraid that I would fall down the stairs because of it. Another misunderstanding about epilepsy is that anyone who suffers from it has full-on seizures. From speaking with people I knew over the years about my epilepsy, I found that the majority of them were surprised to hear that having epilepsy doesn’t necessarily mean that you’re going to collapse and go into a full-on seizure.

Epilepsy is such a common illness, yet I personally don’t know many people who suffer from it, or better yet are willing to talk about it. There is still a stigma, even in these times, over 50 years on from when my father was growing up.