One of the most frustrating things about my epilepsy for me, is the stigma surrounding the condition. I've had to endure it despite having controlled epilepsy. But just the mention of the condition and it makes many people run a mile. I've heard people say that in certain parts of the world, people still think that someone is possessed and that they wouldn't touch them during a seizure because they thought they might catch epilepsy themselves. It's insane.
The fact is that because people who have the condition don't like the reaction they get when they tell someone they have it, they don't and that's when it becomes dangerous.
After having a seizure I've asked many people about what happened during it, so I could explain the seizure to my Neurologist. Usually the first thing they say is, "well it was really scary!"
Even people I've explained how to deal with my seizures too are scared of them. But then I think, well it's not happening to you, but I feel compelled to apologise for scaring them anyway.
When I pushed deeper into why they found it scary, I asked did they think I would hit them or anything, during the seziure, that they might get injured helping? But that wasn't it either.
What it actually was, was that it was just scary to watch. That watching someone injure themselves was unpleasant. I suppose that's why people feel compelled to cause injury to someone having a seizure and hold them down. I suppose they want to make it stop. Ironic really isn't it?
The attitude of watching someone have a seizure and being scared though, I find selfish. It's not something I'm proud of for feeling, but I don't understand why people with epilepsy should ever apologise for something, they can't control, or didn't cause. They didn't decide to have epilepsy so they could have a party trick to scare their friends.
Given when I've seen Grand-mal Tonic-Clonic seizures myself and wasn't scared by them, the only conclusion I can come to, is that it's a question of knowledge. I'm not scared by watching someone have one because I know a) what to do and b) what they feel like from the point of view of the sufferer. So I know that all you can do is time the seizure and make sure the sufferer has something soft under them, so they're not in pain when they come round from the seizure. I know they can't be in any pain because they can't feel anything during the seizure. I know that they won't suddenly jump up and attack me and I know that as long as I make sure the seizure isn't longer than 5 minutes, they'll just come round, have some sleep and get on with their daily life.
For me, that's why they're not scary at all. So when a young guy I helped on the London Underground a couple of years ago starting apologising about making me scared, I simply said: "Why would I be scared? I'm not the one having the seizure." When I asked if it was scary for him, he just said no, I never know what's going on, I just wake up and want to go to sleep.
I suppose people are scared of what they don't know, so as a result, if they don't understand epilepsy, they're scared of it.
Coming from someone who does know epilepsy, after 25 years of having it, I can tell you, as long as the seizure doesn't last more than 5 minutes, there's nothing to be scared of.