Do you think there is a stigma associated with epilepsy?

[Belinda5000]

Elaine,
I commend you for what you do than.
I've done my share of educating.Even once to someone in the E/R who told me I needed a baby sitter 24/7


Belindaop::e::clap::agree::bigmouth:

 

[stilldancing_98]

I wonder what it will be like for my son with his epilepsy when he is grown. I bet it will much more accepted. My cousins are teachers. They are telling me that what they want in IL is to have an IEP for every child. I think that will be wonderful and it will help bring more knowlegde into the schools about dissabillities.

 

[Belinda5000]

Being able to educate anyone on anything depends on the person.
Not whether it was when I went to elementary school 60's only graduated High school 1981 only parents can start making changes at home.:e::banana::soap:

 

[Crazy Monkey]

I think there is a deifinite stigma attached to epilepsy, other medical conditions such as asthma seem to be socially accepted, but say the word epilepsy and people shy away due to ignorance.

 

[darkmarkshark]

I've had people tell me that my seizures cannot cause me to engage in any actions because the fact I know that my seizures can cause such is enough for me to prevent the seizures from controlling my actions (i hope that makes sense - well not their comment, but my explanation of it).

I've even once had someone tell me that now that I know i have epilepsy there is no reason for my epilepsy to impair - wouldn't it be great if all you needed was a label to be cured of whatever was ailing you?

I want to strangle the peole who ell me I'm just latching on my epilepsy to be lazy because I don't want to work. Like there is any fun is staying home all day, not being able to watch tv, not being able to go out, getting headaches while riding in a car, being severly limited by your doctor in the tasks you are allowed to do even if you feel you are capable of doing them that day, struggling to read elementary books, and having to stop working on crafts you thought you could do because you don't have the energy to work on them for a bit and then clean up afterwards

 

[Elaine H]

There is a definate stigma attached to having epilepsy, that explains why I've lost several jobs, and had the most unbelieveable comments made to me over the last 22 years by idiotic employers.
In the Uk in May next year, it is National Epilepsy Week, and I am going to do my damn best as I do every year, to get tv and radio coverage on it, last year National Shed Week got more coverage in this country than epilepsy did, who gives a t-ss what we Brits keep in our flipping sheds!!??!! Last year, I approached a lot of people in the media, and heard sweet FA from them, our local BBC radio station let me come on every year and talk about it, but like you have said, there is such a hush hush stigma attached to it, that it does tend to get swept under the proverbial carpet.

We all have to talk to others, educate the great unwashed, and blow the myth that folks with this common condition are going to be on the deck every five minutes, legs in the air, peeing everywhere and foaming at the mouth, sorry if I've already mentioned this on CWE, but when I spoke in The House Of Lords in 1999, I started my talk with a real example of ignorance:

"Why don't you drive Elaine?" I replied "Because I have epilepsy" this guy looked me up and down a few times and said..."Wow, you so don't look like you have epilepsy!" I was like, "what the Hell am I supposed to look like!!??"

Lets all do our real best next May to educate these idiots!!

Loadsalove

Elaine xx

 

[Shelley]

November is

supposed to be epilepsy awareness month.
I have not seen ad one on the tele.
I have heard the most stupid comments.
I am still called demon possesed.
No matter that I work harder or more efficient than others, My annual appraisals are pathetic when compared to the slackers.
And I am the victim of battery at work. The inestigation is stalled cuz the perp is a preachers kid. Over here, they are treated like gods.

 

[josieb]

Shelley, I was just saying that to my husband last night about November being Epilepsy Awareness month in the U.S., but not actually hearing anything about it on the news or television or anything. Just as it has always been - we try, but with no actual recognition.

 

[joey]

supposed to be epilepsy awareness month.
I have not seen ad one on the tele.
I have heard the most stupid comments.
I am still called demon possesed.
No matter that I work harder or more efficient than others, My annual appraisals are pathetic when compared to the slackers.
And I am the victim of battery at work. The inestigation is stalled cuz the perp is a preachers kid. Over here, they are treated like gods.

im sorry to hear that you get called names. i only wish somebody had the nerve to call me that so i could show them what a demon possesed really looks like!

 

[stilldancing_98]

This is what I think.Years ago it was a lot worse. We didn't have epileptologist and special testing. It's still sad about the schools. They are just beginning to know. But now they have epilepsy camps. I have heard some advertisements on college radio stations. That is who they say to call.But as I have said before, my Dad would probably still be alive if they had the things they do now for diabetes back then when he died.We are the ones to Advocate. We can not count on others to our jobs. We are the community and we can tell what we know.If you have time go to advocacy classes.Learn how it gets to our senate or learn who they are.It all starts with e-mails. And remember, something worth changing...takes time.

 

[drarvindr]

It's not really a poll if everyone agrees ( and so do i!). There has always been a stigma associated with epilepsy. Whenever people hear of my condition , their first question is " do you get seizures now?" on hearing that it is controlled by meds , i get one of two reactions
1) it is dismissed summarily as being equivalent to a common cold because " pills are enough"
2) It invokes morbid fascination and i am watched ( "just to see if he seizes")

Very few people have understood epilepsy for what it is , and most of my friends who do are medical professionals , so i don't think they can count. The non-medico friends i have usualy have the out of sight out of mind attitude. And this echoes the attitude that society has towards us . :agree: with stilldancing that we must be the advocates of our own fate and the treatment that society meets to us. It requires that every single person with epilepsy say out loud that they are not ashamed of the disease. If people with AIDS and leprosy can come out of their respective closets , surely we can too. It is because of their unflinching attitude towards their disease , and the firm belief that they need not be ashamed because of their disease that others come forward and run awareness programs. We are a much larger fraternity than we think . 3% of humanity - that's about 90 million people. We cannot wait on the sidelines for someone else to deal with our problems. We have to start with ourselves and establish a sense of belonging. The Deaf community did it in the eighties with the revolution at Gallaudet university , where they held a strike untill a deaf president was elected. They proved to the world in an instant that they are not to be pitied and are not children who cannot take care of themselves.We need to do something similar. Discriminating against epileptics is something we cannot tolerate. This being epilepsy awareness month , we can write to papers to publish our thoughts and educate the public.

 

[Shelley]

Unflinching

"If people with AIDS and leprosy can come out of their respective closets , surely we can too."
The problem is, their health issues are obvious 24/7/365. Our are spontaneous and unpredictable.
Our neurologic condition is more varied than AIDS and leprosy combined.
There have been pioneers who've stepped out and said that we are people too. But far more of us have been taunted and bullied all our lives by the ignorant and hateful.
I wish there was a pill that I could give them to make them grow up.
I'm tired of taking a back seat to these pigs.
Yes, I have tried to stand up to this pk bitch, but those that worship her out of fear stand by her side, because she is not as shy about anything, and has a way of cajoling others into watching her 'destroy the devils child'. My stupid boss is one of them.

 

[drarvindr]

I really don't think that's the only reason. Your point re: the variegated nature of our disease is well made. While some of us are well sontrolled on medication , there are some for whom this is only a dream.(btw - pk - ???). Neurologic conditions in general have debilitating and unfortunately for the most part incurable effeects. Not one ad here during a supposed awareness month. The government encourages people not to discriminate against people with AIDS or leprosy , tells people to vaccinate their ids and boil their milk. but no one sees fit to demystify our disease. Yes , there are many forms of epilepsy. But the general public doesn't care , and frankly neither should we. ALL of us suffer stigma , and all of us should band together , irrespective of whether we have had two seizures or 200. Re: your boss - yes . utter moron. I suggest you keep a glass of water handy and whenever she walks by , you sprinkle a bit on her and yell " The power of christ compel thee!". then go back to what tyou were doing. maybe that will send a message to these idiots.

 

[skillefer]

I agree with Dr Arvind. I think that yes there's a stigma, but it doesn't help that so many of us are so reluctant to admit in public to having E. In the US, approximately 1 in 100 people have E. That's a huge number! So why do we all feel the need to hide? All hiding does is make it so that the general population doesn't feel the need to learn how to help us if we need it. After all, they think that E is such a rare thing.

 

[Elaine H]

I have NEVER hidden my epilepsy from anyone and never would, given the opportunity to talk to people about it or answer questions about my condition, you cannot shut me up! We have to talk to and educate as many people as we can, and more importantly, keep on talking, in this the 21st Century, it never ceases to amaze me how many people/employers think that someone with epilepsy is going to be on their back every 5 minutes, legs in the air, foaming at the mouth, wetting themselves etc etc! Wow! How ignorant is that!! Lets keep talking guys!!

Cheers
Elaine xx

 

[epileric]

I have NEVER hidden my epilepsy from anyone and never would, given the opportunity to talk to people about it or answer questions about my condition, you cannot shut me up! We have to talk to and educate as many people as we can, and more importantly, keep on talking, in this the 21st Century, it never ceases to amaze me how many people/employers think that someone with epilepsy is going to be on their back every 5 minutes, legs in the air, foaming at the mouth, wetting themselves etc etc! Wow! How ignorant is that!! Lets keep talking guys!!

Cheers
Elaine xx

I admire you for how straightforward you are. I'm that way with friends & acquaintances because if the E is going to bother them then they're not worth keeping as friends.

I used to be very straightforward about it at work too but have noticed that I seem to get fired very soon after letting anyone at work know. Of course they say it's another reason, it's just coincidence that the reason is always found very soon after I tell someone.

 

[super]

stigma

onder: "admire you for how straightforward you are. I'm that way with friends & acquaintances because if the E is going to bother them then they're not worth keeping as friends.

I used to be very straightforward about it at work too but have noticed that I seem to get fired very soon after letting anyone at work know. Of course they say it's another reason, it's just coincidence that the reason is always found very soon after I tell someone.
__________________
It's no longer a question of staying healthy. It's a question of finding a sickness you like.
-Jackie Mason"

onder:

Surely wouldn't it be more prudent not to talk about epilepsy in the knowledge that others will discuss the situation behind your back with group repercussions that ultimately you will have to face later with hurt anger and regret, such as losing job, friends etc. Obviously it makes good sense to share some information in relation to that on a confidential basis with your employer, most of whom you will find will be understanding.

As an individual you are not going to educate people so why try. Blabbering about your condition is unhelpful.

 

[KellyD]

I haven't had epilepsy very long so haven't really had to face a lot of stigma with it for myself however with my 1 year old son I have heard plenty of times, "what a shame, he is so beautiful other than that". As if epilepsy takes away from how beautiful and wonderful he is. That comment upsets me quite a bit. I have also found in my small city of about 150,000 people there is no support group, the closest one is a 5 hour drive away in a smaller city. I contacted these people about 2 weeks ago by email and never heard back. I know how much trouble i have had dealing with mine and my sons diagnosis, it makes me wonder how many others in my city are out there struggling like us with nowhere to turn. At least I have found you guys!!!

 

[KellyD]

p.s. I also think the more we can talk about this condition the better. I know myself that before this year I knew nothing about epilepsy or seizures and now I'm almost an expert. In speaking to different people I realise I wasn't the only one in the dark about this condition. I don't care if people talk about my condition behind my back, at least they are talking about it and in that discussion they may be educating someone else. I know I'm only new to all of this and haven't had to deal with a lot of the things most of you have and I have been very lucky with my epilepsy but we are still trying to get the medicine right for my son and anything I can do to make things easier and better for him I will do it.

 

[yorkie41]

stigma

Yes, I told a person at my old job and she said,'she was afraid to work with me she thought I would have a seizure in front of her" I was so self counsicous after that and embarrassed. I don't tell unless I have to now.