Do you think there is a stigma associated with epilepsy?

[Bernard]

As always, votes are anonymous.

[Birdbomb]

That a BIG 10-4 good buddy!

Not every one does it but enough of them are pretty ignorant. Including many in the medical profession.

[Bernard]

Well, this poll doesn't look very interesting. It's unanimous so far.

[brain]

Birdy said it BEST!

[Julie C]

Definate stigma

[Nancy]

I developed epilepsy in 1990 when I was 46 (yes, I just turned 63 ~sigh~) and the first 3 neuros I saw were IDIOTS. The first hospital tried to kill me.

[epiGuy]

For myself, I find it easier to just move on and not bother with what people say or do..

[Bernard]

Hi epiGuy, welcome to the forum.

I certainly think that ones own attitude has a lot to do with how they perceive the world. My wife is a very extroverted person and isn't afraid to tell people matter of factly that she has epilepsy (she's not advertising it, but it comes up once in a while). She's pretty non-chalant about it and I think that has a strong influence on how others react to the news.

[POSITIVEPERSON]

I have the same attitude Bernard, In general I have never had anyone take issue with the epilepsy. The Drs caught on real fast I was never limited by epilepsy. I think the attitude helps.

Riva

[Blessed]

I am hesitant to tell people. I suppose it stems from the fact that I had my first seizure when I was 14 in front of a room full of teenagers who were all standing around and watching me.

[POSITIVEPERSON]

I also had my first seizure in school too, it was after lunch and we were getting ready for the afternoon class. The girl I had my first seizure in front of my was my best friend , and after that we weren't best friends any more. But my Dr and my father made sure I lived with the attitude that "epilepsy was not excuse". I was to live my life like everyone else.

Riva

[RanMan]

YES ~ Definately.
Birdy is 100% correct IMO.

Randy

[Birdbomb]

YES ~ Definately.
Birdy is 100% correct IMO.

Randy

Thanks Randy, I have had more ignorace shown by medically trained people than all others combined. This is just one instance...

When I had my knee replaced 3 years ago, I ran into some very nasty complications that nearly cost me my life. One problem was getting my morphine on time. Even though I had an IV drip, one night that IV ran out I had to wait 4 hours to get any more pain killers. This happened more than once. My pain went out of control (never to be regained) which in turned triggered seizure activity. I felt a seizure coming on and with 4-5 nurses in the room, not ONE of then understood what was happening. Another night, one little coreman who had come in to do vitals, saw the tremors beginning in my right hand and quickly got a nurse. That nuse went overboard and wanted to pad the bed, but by the time she got back all was back to normal.
I talked to the coreman later and thanked him, and asked how he knew when the rest of the staff seems so utterly useless and IGNORANT. He said his brother was just was diagnosed with epilepsy and reacted the same way I did. We had a wonderful conversation after that.

Just because someone has medical training or may be in the medical field, doesn't necessarily mean they understand or comprehend epilepsy.

[montse]

My answer is "yes". It si sad that nowadays in the 21st century we are still seen as mad, confusing mental and neurological illnes.

[MeredithVS]

I'm pretty new to this... VERY new to the board, and recently diagnosed (as of 10:00 AM this morning) but I have been suffering through the aftermath of seizures (the seizures themselves are the easy part!) and people staring and talking and grabbing and pulling me around and asking questions that I can't answer.... for the past 9 months.

I'm pretty embarrassed when I have a seizure because it creates such a stir. Even in my own home!
but I have to say people have been pretty nice to me about it.

I'm hoping that as far as a stigma goes, that its not a horrible one. How do you work to change that stigma?

[Bernard]

I'm hoping that as far as a stigma goes, that its not a horrible one. How do you work to change that stigma?

The stigma stems from ignorance and fear. Education/awareness is the key to overcoming the stigma.

There are several non-profit groups like CURE, FABLE and RAISE whose mission is to raise awareness of epilepsy, but I think the largest difference is made by everyone that has epilepsy in educating those around them.

[Yve]

As Bernard said the stigma stems from ignorance and fear, so I think to combat it we need to be honest and informative to others when they ask questions about the illness, and to have good sense of humour.

[POSITIVEPERSON]

Where I grew up in NYC their were 5 pple in the neighborhood with epilepsy. No one cared, having epilepsy as a teenager didn't make a difference when I went for PT work
after school. Or even full time work, in NYC I never thought anyone gave a hoot.

Each of the 5 pple dealt with our epilepsy differently. There was one girl who was home schooled and sheltered. There was one girl who died when she was 19 yrs old and we were all devasted.There was one adult women who married had children and worked.
There was one women who never married , worked and kept it hidden from most pple.

But in general in NYC and even MTL I didn't think anyone cared one way or another if I had epilepsy. In MTl I had my own business so my job really didn't depend on anyone else.

Riva

[speber]

Where's one of those 'The More You Know' clips when you need one? I've never seen one for epilepsy THAT'S for sure.

[Elisa]

Hi epiGuy, welcome to the forum.

My wife is a very extroverted person and isn't afraid to tell people matter of factly that she has epilepsy (she's not advertising it, but it comes up once in a while). She's pretty non-chalant about it and I think that has a strong influence on how others react to the news.

That would be me, I'm very extroverted and I just tell it like it is, if people have an issue with it then can leave. I have yet to have anybody have an issue with me. If I don't see it as a problem, why should they? Right? Sometimes they are a little thrown off when they see their first seizure, but they get over it.