Telling Others (PSY Project)

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CainDogGirl

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Are you afraid to tell people you have epilepsy? If so, why? I know I don't tell many people. I guess I feel like they'd treat me different if they knew and my seizures are generally so mild that there's no reason to tell anyway. In high school it was a particular problem and probably what set my mind on not letting anyone else know. Kids can be quite cruel. What about you?
 
I am very open about my epilepsy & never had an issue telling people. I don't tell everyone but if it was to come up in conversation then I would mention it.
My epilepsy is currently under control but for years it wasn't under control & I had a lot of partial seizures.

Until recently I was unemployed for years, I used to do a bit of casual or part time work every now & again, other then that I did a lot of voluntary work. I used to tell my employers about my epilepsy mainly because I never knew when I would have a seizure.

I am now working full time & all my co workers know about my epilepsy & none of them have any issues with it. A few weeks ago I was talking to one of my coworkers who only works part time, somehow epilepsy came into the conversation. I told this lady how I have epilepsy but my seizures are under control & she mentioned that her son also has epilepsy.


Here is a similar thread -

http://www.coping-with-epilepsy.com/forums/f23/do-you-tell-people-about-your-epilepsy-22067/
 
I have CP and TC seizures so I feel it is important for me to let others know that I have E. I've had quite a few bad falls and injuries from seizures so I need to let them know. So no, I'm not afraid to tell others I have E.
 
I tell people about my epilepsy, and did especially when I was in High school.
I was having seizures all the time Complex partail, tonic clonic. Now I have absence, simple partial,Tonic clonic, complex partial and atonic. my seizures are changing all the time.
 
I don't tell many people. My epilepsy is controlled and I work many jobs. I carry a gun at every job I do and there can be stigmas related to being armed and having epilepsy. Only if I trust someone, do I tell them, and you only need to trust someone once.
 
I don't tell just anybody unless there is some reason to. I have nocturnal seizures, so I'm lucky in that respect. But, because of seizure frequency and the fact that I am pretty much useless the next day, I told the place I work (I'm only work 1-2 days per week but sometimes a "bad day" lands on one of their days). Close friends know, simply because we share everything - and when I have to bail on them after we've made plans I think they have a right to know the reason, especially because because before seizures started I used to be so reliable. I think that's one of the things that really gets to me: not being able to follow through on things that I essentially made promises to do (work, fun, run errands, everything).
 
I'm not afraid to tell people I have epilepsy. All my family, close friends and a few others know already.

When I am talking to someone (wither I know them or not) and it comes up why I don't work or drive I'll tell them that it's because I have epilepsy.

My memory is horrible. Someone I know (but don't remember them) will start talking to me about things. I will strait out ask them who they are and let them know that I have epilepsy and that's why my memory is so bad. We usually get a good joke out of it then just go on with the conversation.
 
that is a great way to approach it valeriedl. I like to say i have these problems that cause seizures and i don't work, but i know i should because i have a great face for radio. Its like saying i have a great seizure for school bus driving.
 
I tell people quite soon in making their acquaintance because the myoclonic seizures are very often and quite noticeable and I think it's only fair to give people a fighting chance to dodge a flying cuppa.

Also to explain the first aid I need for a tonic clonic eg DON'T Call an ambulance.

I work with young people and they are often curious have questions so I am happy to wave the purple flag.

Q
 
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