I was diagnosed with epilepsy at the age of 14 and am now 22 years old. Naturally there’s been some horrible sides to having this illness, I’ve been admitted to hospital countless times, spent some time in intensive care, been on every anti-epilepsy medicine, suffered from depression and extreme weight loss and had to take a year out of school at the age of 16. On top of this, there is the fact that every day I live with the small amount of fear of having a seizure that could leave me with brain damage or dead.
Whilst all of this stuff is out of my hands or anyone else’s, the worst part of my illness is something that is easily changeable. The worst part has been people’s ignorance. The problem with epilepsy is bar seizures, a huge portion of the illness is an invisible disability, and sadly these illnesses are something a lot of people still don’t understand.
At 16 I was sitting with my friends planning a holiday when one of my friends said to me “but what happens if you have a seizure Cheska? I don’t want to have to be responsible for that”. Following this, every one of my friends agreed that they didn’t want to deal with that responsibility. This was probably one of the hardest moments of my life but also one of the most revealing. I wondered if they would still have acted the same if my disability was a visible one.
I also had friends who couldn’t understand how I could be well enough to go to a party on Saturday but not make it into school on a Wednesday, friends who pretty much thought I was faking it. Friends at university who didn’t understand that not being able to go out because my epilepsy was bad was not the same as them soldering through their hangover. Bus drivers who have not let me use my disabled bus pass because I “don’t look disabled”. Schools that have said they wouldn’t accept me because of my illness. Teachers who have written me off as lazy because they can’t see anything physically wrong with me.
Dealing with people’s lack of understanding and ignorance of epilepsy has been, and continues to be, the hardest part of my illness. Having to come to terms with an illness that I barely understood at the age of 15 was hard, but not having anyone who understood it was harder.
Luckily I have an amazing family, boyfriend and friends who have made the effort to understand my illness. Even though my epilepsy is still not under control, having people in my life who understand it helps me feel better every single day. Learning to understand epilepsy, or even attempting to, is the most important thing anyone can do for epilepsy sufferers, or for anyone with an invisible disability.