This week is National Epilepsy Awareness Week. Last Saturday I told my parents that I planned to use it as a challenge, a way of breaking my creative block and getting all the information out there that I feel is key to improving the lives of the 500,000 UK residents who suffer from this condition. However, as Sod’s Law of course dictates, I instead spent the first half of this week recovering from a nasty cluster of seizures!
You see as important as these events are I don’t think a lack of awareness is necessarily the problem. I was diagnosed at the age of three so throughout my education everyone was aware that I have epilepsy, they just never understood how it affects every single aspect of every single day of my life.
Whether it’s the side-effects of the medication I take, the constant exhaustion, forgetfulness and dizziness; the limitations it puts on my independence, my inability to drive or safely travel anywhere alone; or even just the mental strain, I mean I am not normal, my life is not the same as any of my friends and it never will be; not a single part of my life isn’t directly effected by epilepsy.
What people need to be made aware of is that having an epilepsy diagnosis doesn’t mean one falls over and starts shaking every time they see flashing lights, as a lot of badly educated people believe, and even if you do suffer from photosensitive tonic-clonic seizures there’s still so much more to this condition.
At the moment I’m having clusters of up to 10 seizures every two weeks with more minor events taking place in between. I’m going through my second medication swap in less than six months. My physical strength is at an all-time low due to the consistent convulsions. I’m struggling to decide what I want to do next with my life based on a range of additional considerations I have to make. And due to the constant uncertainty surrounding absolutely everything in my life my anxiety is currently going through the roof.
Epilepsy isn’t just seizures, all of it hits hard. As much as I want to emphasise this I also need to make it clear that it’s not all bad. With the right treatment, determination and a bit of luck you can regain control of both your seizures and your life. If anything I consider these daily battles a blessing, they make me the strong, young woman that I am. But I know if I’d had more understanding in school and at university I’d be even stronger.
So if you’re like me and suffer from this brutal condition try opening up a bit more and explaining it all to those around you, they can’t see it as Epilepsy is an invisible disability. But that doesn’t mean people can’t learn to understand and help you. If you’re lucky and you don’t have epilepsy, next time you meet someone who does don’t just focus on the seizures, ask them how else it effects them and see if there is anything you can do to make life a little easier.
I hope this has been insightful, if you have any questions at all feel free to comment below!