Do you think there is a stigma associated with epilepsy?

[stilldancing_98]

At this point, I don't think anybody but health care and interested family members would watch it. But someday it will be our turn. I remember when my Dad passed on from diabetes, they did not have all this great stuff that they do now to inform people. So it will happen

[super]

Unanimous, because that is how it is

[stilldancing_98]

Yea, it doesn't mean it's a bad thing. It just takes time. Don't you think? Espessially if we want to get things accross right and still not be the falling disease. lol

[jeofsky]

No one has been harder on me than I am on myself...

[minnbikergirl]

Yes! most definitly!@ I started having seizures in 10th grade. My best friend was wonderful!!!My family accepted it, but kept very very protective!!! My senior year I took a conoe trip for a month with 5 other girls. We had a couselor that was in college, and then the 5 of us were seniors. my mom packed extra drugs in each pack just in case the canoe tipped over in the water. I had a few seizures on the trip, but I made it, and the group was very supportive. But when I got out in the workplace, I had a seizure at work and they fired me...Two different places. One was a bank, the other was a nursing home. My children grew up with me having seizures and I think it educated them. my one son found me in the shower having seizures. He was in grade school, and had to get my neighbor. They accept it and to them its no big deal...My mom stillhas a problem with it, but is in denial. she says she doesnt, ut she does. she says that I have selected memory. and I am just remembering when I want to. my co-workers treat me differently too. but what do you do?

[John-Forrest]

They can be pretty mean at jobs. I was almost let go a few times when it came up I had a seizure problem. One time was pretty embarrassing, I just got a job and had seizure the first day, wound up in hospital. They acted pretty freaked, and it was sort of a mutual decision not a good idea to come back. (The place was too far for me to commute anyway and I didn't really like job, maybe seizure was telling me that.) Right now I work in an Independent Living Agency where half the staff are disabled, so they are a lot more supportive of my condition than other places would be.

It's a dilemma: It wouldn't be a good idea to mention your condition to a job interviewer - but then they get all freaked when it happens on the job. I do note people are more supportive than you would think. It's a fairly common condition. (I heard somewhere 25% of population has had one kind of seizure or other; anyone can have seizure with excess stress, lack of sleep, too much coffee, whatever).

[mamaruns]

Yes, I do believe there's a stigma.

I didn't start having partial seizures until the age of 32. Before that, I'll admit that I probably would have been a little uneasy at the thought of someone having a grand mal right in front of me. However, I don't think it would have ruined a friendship. I would have gotten used to it. But if there was someone that I knew of that had epilepsy, the thought of them seizing up was often in the back of my mind. Now I feel badly that I ever thought that way.

Also, I never even heard of partial seizures. When I thought of the word "seizure", I always envisioned either someone staring off into space, or someone falling down into convulsions. It actually took me awhile to realize that it was seizures I was having when they started.

I don't make a point of telling everyone I know about my condition, but I have told my closer friends. I don't always feel comfortable talking to them about it. I'll openly answer any questions they have, but not many people ask me much. I have family members that are in denial, too. It's so hard to explain what it's like, unless you have the condition yourself. My husband somewhat understands, but there's a lot I don't think he realizes. Like some days I'll have a lot of simple partial seizures but I always try to hide them. If I start to feel something come on, I go to another room. I don't want him worrying anymore about me then he already does, there's already enough on his plate.

[Elaine H]

Wow, this was a "red rag to a bull" Bernard! I've gotta tell you about some of the things I've had said to me over the last 22 years, bearing in mind that I have lost my job eight times simply because I have epilepsy.

One guy asked me.."Why don't you drive Elaine?" I said "I have epilepsy" he looked me up and down acouple of times and he said.." Wow, you so don't look like you have epilepsy" What the hell am I supposed to look like!! I had someone ask if they could catch it? People just assume you can't go clubbing or operate a VDU, when in actual fact, only 2-3% of PWE are photosensitive.

I think, and having given several talks in London on radio and tv, I've always said this..epilepsy can accompany more serious conditions like Cerebral Palsy, Downs Syndrome etc, and people just assume that we are all gonna be on the deck, legs in the air, foaming at the mouth every five minutes, it is so misunderstood, in one of my jobs, one of the company directors said one day,.."Good morning Elaine, and how's your disability today?" I swear to god I mumbled, I can take tablets for my condition, you are stuck with that face!!!

It's National Epilepsy Week here in the UK 18th-25th May, and I've been e.mailing tv shows to see if they would be interested in interviewing me, I will do all I can to raise awareness, I know I'm not a nutter! Well, you know, I have my moments, ha ha!!

Keep smiling everyone!

[sarahj]

ive never experienced any bullying, stigma, idiotic behaviour, unqualified doctors etc....only curiousity and a want to help

do you think its more stigmatised in america?? i have a few epileptic friends, and we couldnt have it better really. that sounds weird, but you gotta get on with life whereas i hear a lot of bad things from usa people... also i notice a lot more brain surgery in america - thats not nearly so common in england.... isnt it totally weird how different countries deal with the same stuff?

also i hear some people cant pay for meds -
*any english folk who are still paying, ask for a FREE PERSCRIPTION card.*

best thing is it includes any perscription, even if its not anti convulsants!! dont let NHS take your money when you shouldnt be giving it away

peacexx

[super]

Good on you Elaine for having the guts and determination to expose what you see as generally accepted poor perceptions by others of people with Epilepsy.

How do we change perceptions, particularly when they are based on fear, ignorance and self interest. I admire you for your spunk in offering yourself to be interviewed on TV as part of National Epilepsy Week in the UK. Best of luck.

[Bernard]

... in one of my jobs, one of the company directors said one day,.."Good morning Elaine, and how's your disability today?"

wow. I would be hard pressed not to come back with something biting like "Just fine thanks! How's your erectile dysfunction going?" ... and I'd repeat the question every time they said something stupid along those lines.

[super]

wow. I would be hard pressed not to come back with something biting like "Just fine thanks! How's your erectile dysfunction going?" ... and I'd repeat the question every time they said something stupid along those lines.

I disagree with you Bernard; as much as it might sound funny, that is poor advice. People with epilepsy have to maintain their dignity, and surely you must realise such a comment is provocotive; who do think would win in the long run, certainly not Elaine and the stress caused could easily trigger another seizure. Can't agree with you all the time, mate.

[Bernard]

I didn't say it was good advice. I said I would be hard pressed not to do it. That's just how I roll...

Oh, and the intent is not to upset/attack, but to highlight the ridiculousness of the original question. Kill'em with humor.

[BuckeyeFan]

CNN has went wild with Autism coverage this week which is great to get that debate more public.

It sure would be great to see epilepsy get 10% of that amount of coverage. Especially to teach others how to deal with it and that many people live fulfilling lives despite the extra challenge.

Last fall, I was on CNN video with coverage of my current hobby. That was really cool, but I would trade it in a second for some E-awareness.

[super]

I didn't say it was good advice. I said I would be hard pressed not to do it. That's just how I roll...

Oh, and the intent is not to upset/attack, but to highlight the ridiculousness of the original question. Kill'em with humor.

I repeat we must show dignity when dealing with ignorant people and I don't see your comments as being appropriate humouress or otherwise. I don't think you understand the importance of what I am saying. Educating the rest of the community about epilepsy is a huge if not an impossible task, and to reduce our behaviour to the same standard as those we want to change is counter productive.

[epileric]

I repeat we must show dignity when dealing with ignorant people

Ooooohhhhh, I see a great topic to discuss but for a different thread.

[Elaine H]

Hi Meredith

Oh Bless you, newly diagnosed, you must be really worried about what's gonna happen? I've had Temporal Lobe Epilepsy since 1986, caused by being a forceps delivery, I've had one lot of brain surgery in 2000, just waiting for the second lot (gonna ask them to put a zip in my head!!) The only way to get people to understand our epilepsy, is to talk to as many people as you can, I talk to everyone about it, it is so misunderstood worldwide I think, not just here in the U.K, anyway, you keep smilin, I'm writing a book about my epilepsy and I'm studying epilepsy care and management with Leeds University, try and find out as much as you can about your epilepsy, and please please don't hesitate to contact me if you want to talk, my e.mail is elaineandmark@hotmail.co.uk

Keep your chin up mate!!

Cheers

Elaine xx

[Elaine H]

Hi Buckeye

I totally agree with you mate, epilepsy for some reason is always shoved under the carpet, it's like a taboo subject isn't it? I'm trying to get a couple of TV shows to do a feature for Nat Epilepsy Wk here in May, so far, I've not heard back from anyone but I tell you what, a few months ago, it was National Shed Week here in the UK, and there was more coverage of that than anything, what do the great British unwashed keep in their sheds? Can you believe that?! We just have to keep talking to people, keep pushing for a bit of coverage, we aren't all crazy six headed demonic people anymore, it's just another medical condition that needs a wee bit more understanding.

Cheers
Elaine xx

[epileric]

I'm usually pretty open about my E with friends or people I meet. That way if they're going to react badly I know from the start.

At places like work or school I usually keep it quiet since people seem to react differently in a group. When I was in massage college I never told anyone until one day we were discussing pathologies & E. came up. We were taught to treat people with E the same as everyone else, that it's not contagious & to be sympathetic. Someone asked what causes it & the teacher didn't know so I answered & gave first hand accounts since this seemed to be such a safe environment. I actually went home feeling so good that I could expose that part of myself safely there. The next day the head of the school pulled me out of class & just screamed at me for not telling him "something so important" when I applied. I told him that my having E. was not important as my seizure are very small & occur sometimes 5 times a week & nobody notices. He didn't care & was extremely angry. After that day it seemed like the teachers started being much more strict in how they treated me. At the end of the semester I was asked to leave but never given a legitimate reason. Since it was a private school there was no school board to complain to & I've since moved on but I'm very reluctant to tell anyone in authority no matter how nice they act.

It also makes me wonder how many people (especially that represent organizations like schools, doctors etc.) outwardly show compassion but have an underlying discrimination towards E.

[super]

Some people are just nasty about E.

I say why tell people about my epilepsy when there is a risk that information will possibly be used at some stage in the future against me. They don't need to know, and by telling others is just asking for trouble, let them find out for themselves. There is enough to deal with without having to put up with their ignorant perceptions and gossip.

That is what is so great about this forum.