By Mitch Jackson
Epilepsy is much more common than many people realize. In the Ottawa area alone, there are almost 10,000 people living with epilepsy. That’s pretty much the entire population of Carleton Place!
Despite the prevalence of epilepsy in Ottawa and around the world, a very real effect of living with epilepsy is the social isolation that often comes with it.
The epilepsy community has come a long way towards breaking down these barriers. According to WHO, until the 1970s it was legal in the United States of America to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
However, there are still many more barriers to overcome.
Crystal is all too familiar with the social barriers of living with epilepsy. She always knows ahead of time if she’s going to have a seizure and has plenty of time to ensure her children’s safety. Even so, people without medical backgrounds told her on numerous occasions that if she was a good mom, she’d never be alone with her kids or that she should never take care of other people’s children – even though she knows it’s a perfectly safe environment. After hearing that advice, she became concerned that she shouldn’t volunteer at a school field trip. These barriers speak to the lack of public awareness and understanding about epilepsy that reinforces social isolation.
Prejudice and fear ends up increasing isolation. Experiencing prejudice can prevent people from sharing their epilepsy diagnosis and challenges with friends or people in their social network out of fear of how they will be treated. Crystal was concerned that if she told other people about her epilepsy, her kids may also lose opportunities.
The social consequences of having epilepsy can be more painful than the seizures themselves. Crystal says that “not to be treated differently or like a child sometimes means the difference between feeling loved and supported or feeling like a failure.”
People with epilepsy experience social isolation for a wide variety of reasons. One of the most common causes is the fear of potential embarrassment if a seizure occurs in a social setting. This fear can often prevent people with epilepsy from attending social functions or fully participating in their community.
Epilepsy Ottawa works to combat all of these symptoms through our social group and community events like our annual Purple Day Celebration. They are great opportunities to meet other people living with epilepsy in relaxed, informal settings.
You can help people with epilepsy living in Ottawa feel less isolated by participating in our Face to Face campaign. No one should feel alone in this city, and raising awareness is the first step. Find out more at epilepsyottawa.ca/FaceToFace.