shy about epilepsy?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I didn't tell anyone for years. When I was 17 I was told by a doctor not to tell people I had it because others would refuse to work along side me. Also 'so called friends' would laugh and ask questions like, did you wet yourself when you had the seizure?

Now 20 years on, I don't care what people think or say because anyone who is around me now are there because they care and are genuine. I will explain it and say I'm epileptic but it took along time to get to that point.
 
Maybe it is because I had never had a T/C seizure until I was well into my 20s, but I never really thought of someone "wetting themselves" when I thought of seizures. It still isn't one of the thoughts that pop into my head...
 
Someone had said something on here a while back about making a Face Book page about this website. Basically it would be saying that you have epilepsy.

As I said I'm not shy or ashamed that I have epilepsy but I don't think I'd join it. The only reason would be because I wouldn't want the people that I'm 'friends' with finding out that I have epilepsy over the internet.

I would tell them in person if I ran into them somewhere though. By doing this I can explain what my seizures are like and answer any questions they might have.

As people have said that when someone here the word 'epilepsy' they assume that it deals with a TC. They don't know there are other types of seizures other than that.

I don't want them assuming that since I have epilepsy and when I have seizures I fall to the ground shaking like crazy and screaming. There are people who will wet themselves or have bowel movements. I don't want people assuming that I do that. I want to be able to tell them what I do.

This is just my opinion about a Face Book page though. I don't know if others feel the same way or not?
 
Back
Top Bottom