I was diagnosed about 2 years ago, I think. My form of epilepsy is called Juvenile Myoclonic Epilepsy - for those who aren’t sure what this is like it means that sometimes in the mornings I experience sort of ‘jerks’ in my muscles, its hard to explain how it feels..its like sometimes - at best - my arms will just jerk out or I just feel tense but I’ll forget what I’m talking about mid-sentence, at worst my arms and legs will go and most of the time I’ll fall, once I even fell down the stairs (about a year ago now) and I still suffer with the whiplash it caused on my neck. I can’t even count the amount of grazes, cuts, carpet burns etc I’ve gained. But yeah that’s my brains way of getting rid of all the excess electrical stuff in our brains that us epileptics have. Sometimes it causes full on seizures, I’ve only had 3 thankfully, and even more thankfully I don’t remember any of mine. Most of the mornings that they happen on are in bits and pieces and it try to piece together as much as I can through whoever else may be there’s storeys of what happened. I’ve even invited someone round in the evening of the day I’ve had a fit because I’d forgotten and my memory isn’t so good straight after.
I was wandering what other peoples stories were about how they told like their friends? It may sound silly but for about a year I was sort of too scared to tell people, incase they started treating me differently..I mean I know its stupid because I would never treat anyone different because of something like this. But I did tell some people - unfortunately most found out about it the morning after a friends house party when I had a fit in front of them all - not ideal. It was awful and I cried after it happened. I often cry after them or even when I’m walking somewhere or in public and I jerk because I know that people won’t know it’s not my fault its just my epilepsy. I’m scared they’ll be like ‘what a weirdo’ or ‘why is she doing that’ or even think im on drugs or something. But yeah now I’m trying to be more open about it. I can talk about having it and what its like..but certain bits I can only talk to close friends or family or my boyfriend about. For example, the bad side of it - the times that make you feel awful, or when I’ve jerked infront of people and they’ve given me funny looks etc.
Anyone feel free to submit saying how they feel about their epilepsy in respect to talking about it and telling others about it or even how they told their friends when they were diagnosed :) I’d be interested to find out.
- beebee52 said: I got diagnosed in 3 grade. instead of me telling my friends, my mom came to my classes all elemetary school and told everyone : [ she had good intentions but it was so freaking embarrasing. then we moved and i didnt tell anyone till my juniior year.
- Rachel submitted this to seizing-theday