It can be difficult to describe a seizure, sometimes impossible to describe it up to a certain point... How do you describe a kind of fear you can't understand yourself in your own head? How would you describe de-ja-vu that doesn't make any sense and that even seconds after you've experienced it disappears from your memory anyway?
This is a glimpse into the epilepsy I know. I hated it and now that it's under control if feels like being released from prison. It might not be as safe for everyday life, but there's a huge relief from not experiencing the small conscious seizures, called petit mals.
It's hard to try and get across that violent seizures aren't sore, they're not painful and not scary for the person actually having them. But I have a theory and a hope that in explaining what I am in this post, could maybe help the stigma to those that read it.
I can't stop the fact that epileptic seizures that are clonic-tonic grand mal seizures look odd, potentially scary, but I can explain that they're just a part of everyday life. It's incredibly difficult to put your finger on exactly what about epilepsy causes it's stigma, but I believe that feeling like you're watching a person in pain has something to do with it.
If a had a seizure tomorrow, while it would be unfortunate, it wouldn't affect my life adversely. Furthermore, if like previously, they weren't controlled, it would just be another normal part of my life. You see, the one mercy that epilepsy allows its' sufferers is that, you can't feel anything during generalised seizures. It doesn't hurt to have one and post having them, the tiredness that they cause it almost anaesthetic like. The initial pain has gone most of the time, after regaining full consciousness and awareness.
If I had them in bed, they would never effect my life except for maybe a few hours off work if it was money to friday, to sleep off the tiredness. It wouldn't effect my physical capability outside of those boundaries and quite frankly, if I could find an employer that would be accommodating, if like many people with the condition, I had seizures occasionally, then, say I worked later to make up the hours, I'd be as physically and mentally able as any other employee, who had a 100% bill of health.
You see as someone with epilepsy, it's hard to find the route of how to tackle the stigma, but in a way, I hope the knowledge that actually, nobody is in pain themselves during a violent seizure, might go a little way to de-mistefying the condition and the black cloud that surrounds it.