Do you think there is a stigma associated with epilepsy?

[stilldancing_98]

I just got back from IL. for a family reunion, I had a seizure in one of the pubs. I was with one of my cousins . She freaked out. Now if it had been her sister it would have been a whole different story. It also just depends on the person.But the people in that small town in Il was much more caring than out here in Seattle.

[skillefer]

Well Taylors Mama, just feel sorry for her kids. They're going to miss out on being friends with a wonderful little girl.

As for dealing with that attitude...*shrug* I guess it comes with the territory. At least I know that my friends are really true friends. And trust me, I think they've all seen me seize at some time....LOL

[Elaine H]

Hi All

As I've lost seven jobs because of employers' stupidity and ignorance, and I've had someone say to me "....Why don't you drive Elaine?" "Because I have epilepsy" they said to me"...wow, you so don't look like you have epilepsy!" Can you believe that?!?!
There is so much ignorance of this so common condition it's not true! We have got to educate people!

Love
Elaine x

[Wally]

Hi All

As I've lost seven jobs because of employers' stupidity and ignorance, and I've had someone say to me "....Why don't you drive Elaine?" "Because I have epilepsy" they said to me"...wow, you so don't look like you have epilepsy!" Can you believe that?!?!
There is so much ignorance of this so common condition it's not true! We have got to educate people!

Love
Elaine x

So what do people that have Epilepsy look like?

[Shelley]

Well, as you can tell from my picture, I got the horns of the devil sticking out the top of my head.
I also have an extra arm where my nose should be.

I just had a friend of mine fired for being dyslexic. In other words, if it ain't obvious, they ain't gonna believe.
Education without sounding like a whinny liberal isn't easy!

[Wally]

Well, as you can tell from my picture, I got the horns of the devil sticking out the top of my head.
I also have an extra arm where my nose should be.

I just had a friend of mine fired for being dyslexic. In other words, if it ain't obvious, they ain't gonna believe.
Education without sounding like a whinny liberal isn't easy!

My wife would love it if I had that extra arm where my nose is.

She wouldn't have to come running out to the shop when I shout "hey honey come hold this for me!"

[BuckeyeFan]

Well Taylors Mama, just feel sorry for her kids. They're going to miss out on being friends with a wonderful little girl.

That is a great thought Skillefer!!

[Elaine H]

Well, I spoke on behalf of Epilepsy Action at The Commonwealth Institute in London several years ago, and I used this example of complete and utter ignorance as an example, and started my talk with the following...."Why don't you drive Elaine?" I looked at the man and said..." Because I have epilepsy" He looked me up and down a couple of times and said that I didn't look like I had epilepsy. I have never got over this stupid comment,and people are always shocked, amused, disgusted when I tell them about it, but it happened, he really said it, and yes Wally, what do people with epilepsy look like for chrissakes?!

I would love to hear from you guys about your encounters with ignorance, stupidity, and downright rude people, in the book I'm writing, I have one chapter dedicated purely to stupid people's comments, so any you can tell me about would be welcomed.

Keep your heads up guys, and keep smiling!!!

Cheers

Elaine x

[Taylors_Mama]

Well, I spoke on behalf of Epilepsy Action at The Commonwealth Institute in London several years ago, and I used this example of complete and utter ignorance as an example, and started my talk with the following...."Why don't you drive Elaine?" I looked at the man and said..." Because I have epilepsy" He looked me up and down a couple of times and said that I didn't look like I had epilepsy. I have never got over this stupid comment,and people are always shocked, amused, disgusted when I tell them about it, but it happened, he really said it, and yes Wally, what do people with epilepsy look like for chrissakes?!

I would love to hear from you guys about your encounters with ignorance, stupidity, and downright rude people, in the book I'm writing, I have one chapter dedicated purely to stupid people's comments, so any you can tell me about would be welcomed.

Keep your heads up guys, and keep smiling!!!

Cheers

Elaine x

that is crazy you dont look like you have epilepsy. too funny. people are so crazy.

Feel free to use my neighbors comment I think that is a pretty stupid comment. Dont want my kids to catch epilepsy.....people

[Nancy]

Downright rude? LOL.
I think my husband is the winner.
When I was first having the complex partial seizures I sat very still, very quietly, I did sometimes swallow and lick my lips. BUT in public DH always waved his hands in front of my face and yelled, "Look at her! Look at her!! She's having a fit!! Watch this. She's having a fit!!"

When I complained and begged for this to please stop I was told I was a whiner who had no sense of humor. OMG

[Belinda5000]

When I was growing up with epilepsy I was dx'd when I was 2.
I learned as I grew older because we moved a lot that epilepsy that's just life.
I've had people tell me you look normal.And I'll ask them what am I suppose to look like and they won't say a word.

It's my friends that are over protective and telling me not do things because I might have a seizure.
It doesn't bother me to tell people I have E I'm not ashamed of it and I have educated some people on it even my local perimedics who I gave info on seizures who said I couldn't of had a seizure because I conscious.


Belinda

[stilldancing_98]

My life is my life. I don't feel the need to tell everyone I have epilepsy unless it is nessesary for my safety or to teach for my son. Since he has it to. I have other medical issues to but I don't talk about that all the time. It is just part of my life. I have other parts that are just as important. Teresa

[Belinda5000]

I don't tell everyone I have epilepsy.
I'm not ashamed of it either.
My friends know and other people I'm around know just in case I have a seizure.
I have simple partial,complex partial Atonic, Tonic-clonic and absence.
I don't want anyone to end up thinking I'm a druggie if I go down.

Belinda

[alivenwell]

Well, none of us are being burned at a stake or labeled as devil mongers. I suppose that's an improvement.

[epileric]

Well, none of us are being burned at a stake or labeled as devil mongers. I suppose that's an improvement.

Only Slightly, I've still been accused of being drunk at work due to the post ictal effects & had numerous "good/best friends" never talk to me again after seeing a seizure.

[Shelley]

Well, none of us are being burned at a stake or labeled as devil mongers. I suppose that's an improvement.

I was denounced last night as such. I talked to one of the producers last night. She didn't know I had problems at birth. She said I didn't look like I had E. (I guess they figure it should be chronic like Parkinsons?) Then after I had a seizure, she said I was of the devil, and pure evil, and I practiced witchcraft because I am an atheist. I needed to be 'saved' (again, for the fifty billionth time, and once you are prayed for, they will come and fix you...huh, why didn't they do it when I was a kid and asked to be 'fixed')
Are such people worth talking to and educating. I tried for 30 minutes with her. I think 'Forest Gump' is smarter.

[Nancy]

aaaaaaaaagggggghhhhhhhhhh
Shelley ---- I'm so sorry that happened to you.
I wish I had been there. Right now I'm so angry, I would have .........aaaagggggghhhhhhhh

[Meetz1064]

beyond speechless, Shelley. I am sooo sorry. People are SUCH IDIOTS......

[Belinda5000]

I was denounced last night as such. I talked to one of the producers last night. She didn't know I had problems at birth. She said I didn't look like I had E. (I guess they figure it should be chronic like Parkinsons?) Then after I had a seizure, she said I was of the devil, and pure evil, and I practiced witchcraft because I am an atheist. I needed to be 'saved' (again, for the fifty billionth time, and once you are prayed for, they will come and fix you...huh, why didn't they do it when I was a kid and asked to be 'fixed')
Are such people worth talking to and educating. I tried for 30 minutes with her. I think 'Forest Gump' is smarter.

Shelley,
I'm so sorry about what happened .
Some people aren't to swift.
I was once told I was possessed.


Belinda

[Elaine H]

God Shelley, what complete idiots eh?! I can quite believe it though with some of the stuff I've had said to me over the years, employers seem to be the worst, I got asked to leave a job once because one of the girls in the office was pregnant, and had moaned because she thought I was going to have a seizure and "knock against me and kick me in the stomach!" Can you believe that?? I told them what they could do with their job!!

I have never tried to hide my epilepsy, I feel like it's up to me to educate people, talk to them, tell them all about it, it's the only way we can combat this incredible ignorance!

Meetz1064, you are so right and sum it up nicely people are such IDIOTS!!!!!!!!!!!! Well said!

Cheers
Elaine x