Today is the first International Epilepsy Day (IED). According to the website of Epilepsy Ireland, its intention is to promote awareness on epilepsy right around the world, it’s a joint initiative of the International Bureau for Epilepsy (an umbrella group of lay epilepsy associations), and the International League Against Epilepsy (the international organisation representing healthcare professionals). And it’s a fantastic idea.
Despite the fact that there are so many well-organised and committed people working in this area, epilepsy has retained some of the stigma which was its hallmark from less enlightened times. While we may not believe that people who experience epileptic seizures are possessed by unclean spirits in today’s society, that doesn’t mean that prospective employers, colleagues or just random members of society can hold opinions which can be downright devastating to someone struggling to come to terms with what is essentially a long-term condition.
That’s why today is so important – not just for people who have epilepsy themselves, but for their friends and families, and for everyone in society. It doesn’t benefit any of us to allow stigmas of any sort to go unchecked, particularly if the experience of that stigma is going to discourage some people from reaching their full potential during their lives.
There’s a lot to like about how Epilepsy Ireland have chosen to mark the day, and their gung-ho approach to addressing the prevailing myths about the condition is particularly attractive. One of the things that I remember from my own diagnosis over 20 years ago is that feeling of being different to my siblings. When they each started driving, the most they had to worry about what passing the driving test, while I had an extra test to consider.
I think it’s at times like that that it really does help to remember that you’re not alone in this experience. The knowledge that 40,000 people in Ireland have some form of epilepsy is helpful. There is strength in numbers, after all. And there’s companionship too. It helps to talk to someone who’s been there before and experienced the same feelings of confusion or concern that a diagnosis can bring. Another reason why the work of Epilepsy Ireland is so vital.
It’s important too, that the issue is addressed in a way that we can all understand. We all see the world from our own little perspective, but it’s important to try and get outside that viewpoint. Many people simply don’t know what to do if they see someone having a seizure. It shouldn’t be that way of course but it’s only when I saw someone else having a grand mal seizure in college that I realised how unnerving it can be for an onlooker. That’s why this video created by Epilepsy Ireland is so brilliant:
By showing the progress of a seizure from initial onset to recovery, the “unknown” element is removed, and so too is the fear. I would love to see the resources being put in place so that this video could be developed as a television advert for broadcasting on a regular basis. Until that happens, an excellent ad has been running to promote today’s event as part of the TEAM project:
I’m really looking forward to seeing how the inception of IED will develop awareness of epilepsy throughout the world. I think it’s going to herald in a new era of understanding and awareness about a condition that has lurked in the shadows for far too long. We’ve done so much good work in this country about educating people on the need to speak about issues like depression and general mental health, and it’s high time that we took on the challenge of spreading knowledge about epilepsy in the same confident way. The 40,000 people in Ireland who live with this condition every day deserve nothing less.