Today, in case it’s escaped you, is Purple Day – the international day for Epilepsy Awareness. I’m using it as an excuse to remind everyone that knows me that I’m running next month’s London Marathon in aid of Epilepsy Action.
It’s also worth taking a few moments to think about epilepsy and what it means to me.
I was diagnosed about a decade ago, after somehow seizure-ing my way out of bed. While asleep. Gold star for doing it with panache and style!
I had a scary time of it while they figured it was nocturnal epilepsy, rather than something infinitely more serious like a brain tumour. I remember feeling surprisingly calm when they told me, probably due to the relief of knowing I didn’t have a growth in my brain.
With hindsight, it was also probably due to the fact that I’m a psychologist and understood a fair amount about the condition anyway. I’ve thought since about how I would have handled the situation if I didn’t have that background knowledge to rely on.
Or if, for whatever reason, it had had an even bigger impact on my life.
Here I was, living in Central London, with a decent job and in a stable relationship. Imagine if I’d been living alone, or if my job required me to drive or operate complex or dangerous equipment. Imagine if I’d lived somewhere very rural, where driving was a requirement of everyday life. Imagine if I’d been a pilot. If I had small children to take care of. Or if I was pregnant.
The thing is, I’ve been let off quite lightly by epilepsy. Yes, I’ve had more seizures in public than I’d ideally like and yes, I hate taking the medication and dealing with the side effects. But I still have my job, I get amazing support from my partner, friends and family and I’m a pretty happy bunny most of the time.
Others have had their whole lives derailed by this condition. Others have had to give up the jobs they loved. Have had to worry about how they’ll take care of their children. Have suffered social stigma of have a significant seizure in public. Have experienced painful and embarrassing injuries as a result of their seizures.
Do you know anyone with epilepsy? You probably do, even if they haven’t told you about it. It’s incredibly common. There is still a stigma attached to it and the impact of seizures and medication can be very frightening to those experiencing it. Do your bit – treat them like everyone else you know. Be understanding.
And if you yourself have just found out you have epilepsy, take heart. It’s not the end of your life. You’re probably thinking about being able to drive or have a drink (though hopefully not the two combined!). Yes, you’ll have to take some medications, and some of them can have annoying side effects. But there’s hope. And there’s Epilepsy Action. Their website is a goldmine of information and support.
Don’t let anyone tell you you can’t live a full life. Because since I was diagnosed, I’ve completed a doctorate in psychology, run four half-marathons and I’m about to run a full one.
Organisations like Epilepsy Action do great work in removing the stigma attached to this condition and provide valuable support and advice to those living with it, as well as their families. That’s why I’m putting myself through the crazy challenge of running a marathon for them!
Please think about contributing to my fundraising by clicking on this link and donating a few pounds. Every single penny will help.