Do you think there is a stigma associated with epilepsy?

[stilldancing_98]

Most of the time I would say I am pretty positive. But I think I just got to my limit this year. One kid called my boy a pervert in front of me. Sounds funny. But it was not. So I said out loud, wasn't that you I heard was the pervert? That says weird things ? He freaked! I told him, now you know how it feels to be talked about when you have no say. I told him about epilepsy and what other challenges Alex has. Now he sticks up for him

[RobinN]

Rebecca was handing out brownies in science class before winter break, and she decided to go to the senior boys first. They asked her what they were for and she said for my friends... and this one kid said, "You have no friends."

She laughed it off, but the way she told me I knew it hurt her.

[skillefer]

Hi Brian-C! I think that people make jokes sometimes, not meaning to be cruel, but because they can't think of anything to say (I'm referring to when people tell jokes after finding out that we have E.) adn they're nervous. Not trying to excuse the behavior, just explain it.

As for me, I am a public school teacher. I've taught for the last 10 years in the middle and high school. And yes, I have had several seizures at school in the classroom, in the hallway, and at the gas station on the way to work. I find that people panic and freak because they don't know what to do and it makes them feel bad because they can't help me. My students are all told by me, at the beginning of each semester that I have E, what my seizures look like, and how to help me. They also know that if it scares them too much, they can go wait out in the hall. That I don't want to scare them, and that I'll be back the next day...which I always am. My kids might have a few questions the next day, but they don't crack jokes at my expense or anything like that....in fact, my students actually try to behave better the day after, or if they think I look tired. Is having one in public embarrasing? Yup. Especially when you wet yourself. But, most people are kind and understanding after the initial shock. I know my colleagues and administrators at work are.

[super]

I like your positive approach Skillefer and the way you seem to be able to handle Epilepsy in the workplace. Yes, I too have had seizures at work, on the train on the way to work, but mainly at home.
I found it awkard telling people about my epilepsy as everyone reacts differently, some showing more understanding than others. Perhaps I am super sensitive.

[TexasTravel]

I am, in many ways, like alivenwell, joy and elaine.

For Shelley, I have had Hydrocephalus, and a shunt because of it, for most of my life. This is what caused my seizures in the first place. Because of my H (and E), I have been called a Frankenstein, and worse, so many times it is incredible, by bullies and such. It has never bothered me though as my response, most of the time, is to just state "At least I have an excuse, what is thierrs?". It almost always shuts them up....immediately. Some would say that they removed my brain and I would just tell them that "yes....the doctors removed the part that cared about what they were saying". It usually pissed them off and they just went off grumbling to themselves.

I will say, first, that I have never had children and never intend to, for my own personal reasons but my own thoughts towards someone who has children with E would be start, as soon as they can comprehend it, to start informing them about E and making them feel comfortable with it and not afraid to talk about it. Let them know it is absolutely nothing to hide from or be embarrased about and that everyone has their own problems even though they may not admit it. I would let them know that they are not outcasts and that they are no different, as a whole, than anyone else. (My 2 cents) I was informed and my parents did not hide my H or E from a very, very early age.

The only time it really affected me was with the girls. Sometimes they were scared to ask but when I found out about it, I usually used it to my advantage and used it to start to talk to them and inform them. They were usually very interested and understanding. The best part was that it got me close to ones that I wanted to date and know better....which was all the better for me. And, it worked a fair amount of the time.

[Shelley]

there are some idiots at work that commented yesterday, that epilepsy is demon possession. No amount of education is going to change them. They prefer superstition to reality. They pretend that all they do is ok, because they have some right bestowed upon them because of their religion.
I don't feel that it is necessary to eradicate all religion, just the hate based ones that rely on misinformation to foster this kind of ignorance and the hate that goes with it.

[stilldancing_98]

I was told I was demon possessed when I was a teenager at a church. And I was in sin, it was my fault that I had epilepsy. Isn't that just pathetic? When I hear people say ignorant things like that now, I am quick to answer and get the ignorance out of the way. How they handle it is up to them.

[walksalot]

I don't know why anybody would say this, but I had a friend who's brother had tonic clonic seizures (this was over 40 years ago) I had said to her that I didn't understand how you got epilepsy. I didn't even know what it was. I was only about 18 then and had never seen anyone with epilepsy and his seizures were really bad. He had even been affected mentally I guess I said it wrong and she told me she hoped I got it. She wasn't my friend anymore, but sure enough, she got her wish.

[Pinky]

I can't decide.... People at work seem to be taking it pretty well considering I've had 2 big ones at work in front of EVERYONE... I'm not known by my name or job description.. I'm that chick who had the fit on the bus... the entire region knows about my epilepsy. Some people completely ignore me now, almost like this is contagious and I could make them sick, but others continue as normal.

I've lost some friends as well, but I guess that's how the cookie crumbles... Stuff 'em. I'll make more friends. I found me a lovely boyfriend who knows about the E and has seen at least 3 of the seizures, and he's still with me....

[joey]

I can't decide.... People at work seem to be taking it pretty well considering I've had 2 big ones at work in front of EVERYONE... I'm not known by my name or job description.. I'm that chick who had the fit on the bus... the entire region knows about my epilepsy. Some people completely ignore me now, almost like this is contagious and I could make them sick, but others continue as normal.

I've lost some friends as well, but I guess that's how the cookie crumbles... Stuff 'em. I'll make more friends. I found me a lovely boyfriend who knows about the E and has seen at least 3 of the seizures, and he's still with me....

I know how it feels to have a seizure at work, i even felt one coming on and i told the manager and she thought i was lieing to get out of work. until i fell down the stairs. but at least you have a boyfriend who understands and cares because i have lost a lot of girl friends over it.

[Hosea]

yes there is, kept out of sight, out of the news; we appear nowhere. Not even in sit-coms let alone films. Frankly speaking, now I now how others felt in early America. Stigma. Just the word alone intones outsider. Yet, I've taken
my midday pill.

[IMgood1]

There always has been and there always will be as long as it is something people don't understand. The stigma comes from a lack of education and understanding on the part of the general populus.

[Elaine H]

I was told I was demon possessed when I was a teenager at a church. And I was in sin, it was my fault that I had epilepsy. Isn't that just pathetic? When I hear people say ignorant things like that now, I am quick to answer and get the ignorance out of the way. How they handle it is up to them.

Hi There

I just read about your treatment by the "Devil Dodging" community, thank God I'm an Agnostic!! Absolutely and utterly disgusting, I am so not surprised though! Sadly, I recently worked at a school that were very religious, and a bunch of sickening "Bible Bashers" I went there with an open mind, I told them all about my epilepsy, I could not have been more open with them, I was actually looking after kids with special needs, some of them even had epilepsy, I had one Complex Partial seizure at work, and they called me into the office to tell me to leave, they didn't want me upsetting the kids if I should have another one!!! I told them to "poke" the job where the sun doesn't shine, and left the premises, I was very very angry, upset a wee bit, but as I have been in this position work wise several times before, I was more angry than anything, and just wanted to punch someone or something.

It is the 21st Century, and people with any disabilty, anything that makes them a bit different are still being persecuted, it is disgusting.

Try and stay positive, and rise above it, that is all we can do, and fair play to you for sharing your all to common experience with us.


Best Wishes

Elaine x

[matchu]

wow, like back in the 1400's?
I feel a stigma of like, why don't you make yourself better, your not trying.. and of course the faking.. which even the doctors have this problem, I suppose my doc would know a lot more about me, if he could be reached at his office. Still waiting for my hospital stay requested because no seizure activity on eeg that he was not even present. So I asked if he thought I had psychogenic non-epileptic seizures and he had never heard of it. I will put my trust in God not man!

[No Shame]

I have never had gran mals so it's been easy to hide. Fact is though-even though i have been an introvert most of my life, i think hiding it may be the worst idea, for one thing i think E explains a lot about my life, and that's my life story that needs sharing from time to time, but right now only around supportive people. And secrets can be harmful on the soul i think. Best to gain confidence in yourself (as i am working on), and tell new people when you are comfortable enough to answer their questions and be ready for disbelief and fearful reactions. And you can smile and say something smart back!

[flinnigan]

I'm with Bernard. I'm a very open book kind of person. I think when I make "no big deal" about it people feel better about it and aren't afraid to ask questions. But then I'm in a close knit group. I'd rather have people know I'm not driving due to Epilepsy than Drunken stupidity. Laughing guy is for my daughter who's watching me type.

[Ruth]

Hi epiGuy, glad to have you aboard. I like your comment.

In my neighberhood, they are very understanding and friendly to me. They know I have epilepsy. Epilepsy is getting more attention. So I am not sure.

My first big one was in High School. I was never told what happened. I stood up to answer a question in my English class and that is all I remember. My brother took me home. That was a long time ago. People were a lot more ignornant that they are now.

[stilldancing_98]

My son is being bullied so bad now.The kids around here have already made up there mind about my son and I . I am making my statements then I am moving.

[Ruth]

My youngest son was bullied in school too. It is getting worse for all children. It can be just the epilepsy as well.

Where are you moving to?

[stilldancing_98]

I don't know yet. I'm staying in the state. Not going to Mexico,LOL.Today, they are still standing across the way making remarks. I have not said a word in 2 days.These people are so ignorant and mean.