Do you think there is a stigma associated with epilepsy?

[C0urt]

yeah i save a lot of money not buying gas or paying for insurance etc.
motorcycle parts are insane to buy
But bicycle parts are pricey to. i need about $400 just to fix my bike at the moment
crazy right

[kylie]

I have never felt in my 28 years since being diagnosed with E it to have a stigma. Misunderstood - Yes. I am so open and honest about it all my friends people at work everyone knows about it and my triggers. They normally ask a couple of questions then thats it. I don't care what people think. I guess that probably helps too lol

[Cinnabar]

Cindy, I'm so impressed with the pro-active choice you took with your children and then taking it to their school for education. And then your son took it to debate! All I can say is BRAVO!...

[Ruth]

I have never felt in my 28 years since being diagnosed with E it to have a stigma. Misunderstood - Yes. I am so open and honest about it all my friends people at work everyone knows about it and my triggers. They normally ask a couple of questions then thats it. I don't care what people think. I guess that probably helps too lol

Hi Kylie, I am the same way. I was diagnosed 60 years ago. I told everyone. I did not know about any stigma's. I still do. Honesty is the best Policy!!

Welcome to the forum. Bernard made it out of love for his wife Stacy. That love permeates throughout all of CWE.

[looshawn]

I think that one's a no brainer...

Just think, most of the general public still probably considers epilepsy as another one of those unsightly little "stigmas".

[Ruth]

Hi looshawn, glad to meet you. Hope to here more of your posts.

Epilepsy made 60 minutes. I hope I have the link right:

www.cbsnews.com/video/watch/?id=5410941n

That is going to go a long way in taking away the stigma. The fact that epilepsy made 60 Minutes. I put the link in the Library room. I got the link right there. You can watch it.
I recorded the whole 60 Minutes on DVD.

[Ruth]

I just checked the link. it is the right one.

[Chris515]

I think things are getting better... but there are still a lot of people out there who aren't very understanding.

I was petrified of telling anyone when I was a teenager - lets just say people in my high school weren't very kind to kids with medical conditions.

I've even had people stop talking to me when they find out that I have epilepsy. That is just ridiculous.

But I'm finding now a lot of people show concern and interest - curiosity maybe. I'm trying to educate as many people as I can.

[looshawn]

Hi looshawn, glad to meet you. Hope to here more of your posts.

Epilepsy made 60 minutes. I hope I have the link right:



That is going to go a long way in taking away the stigma. The fact that epilepsy made 60 Minutes. I put the link in the Library room. I got the link right there. You can watch it.
I recorded the whole 60 Minutes on DVD.

Hi Ruth, I'm pleased to meet you too...

BTW, I did watch that part of the episode of 60 Minutes last week (and go figure - on Sundays I hardly ever miss AFH Videos on ABC). Fortunately the football game didn't get over that late, and as I saw the commercial describing "this weeks episode", there was no way I was changing it.

So yes I was impressed with what I saw there for 20 minutes - somewhat
But when is epilepsy ever going to be anywhere near comparison to breast cancer when it comes to funds, attention given?

Oh, and this is nothing personal either; my wife is a healthy eight year breast cancer survivor. I've been battling with E for almost 30 years. There is still no comparison - speaking generally here in the US.

What's wrong with this picture in America?

[Ruth]

But when is epilepsy ever going to be anywhere near comparison to breast cancer when it comes to funds, attention given?
What's wrong with this picture in America?

Hi looshawn, I am glad you got to watch 60 Minutes. That is a great start to getting funds and attention. There are also people who show videos on the internet of what their seizures look like. That is another way it is getting attention.

Breast cancer went to the forefront years ago. That is why they are getting the funds and attention. I am glad your wife is a breast cancer survivor. Cancer is tough to overcome, I am glad she made it.

Now, epilepsy is going to the forefront. The picture is changing for the better.

[Aubrey]

I used to say I don't have a license because of "legal reasons" but then everyone assumed I got a DUI.

Yep. I quickly realized when I went back to school that answer just wouldn't do.

I have told a couple people why I don't drive, and some others just that I don't drive, who knows whether they think I drink inappropriately or I am uncoordinated or what, I am not really outgoing, honestly. I think there is a stigma, people really don't even know what E is. And as for people wanting ambulance to be the auto response, going to the dean to talk him out of that was a bit of a hard sell. I thought I had better just in case. So far, it hasn't come up, at least not at school... (fingers crossed and holding thumbs)

[Shelley]

You can't get any date to stay interested in you once you let him know.
I just told a guy I like (and he liked me) that I have the 'e'. He said that he was "weirded out'. I said ok, but under my breath, I was saying here we go again. It'll sting for a while, then I'll move on, just like before.

[Aubrey]

Try not to get too discouraged Shelley. I am sure it is hard, but not every guy is a total, fill-in-the-blank. They are rare, but there are some out there who, even if they think it is weird, will stay around, I think. These guys are rare, but not extinct. The first time my husband saw me have a really dramatic t/c, he called my mother - her response was - it's scary isn't it. Real comforting, no? Best of luck.

[Ruth]

Hi Shelley, my husband was great when we were dating. That was in 1961. I was afraid to tell him. Then one night, I had an abscence seizure. It freaked him out. He pulled the car over and asked me if I was okay and if I new what happened.

I told him I had epilepsy and I had just had a seizure. He said, "I wish you would have told me before. We almost had a car accident. " I asked him how he felt about it. He said, we all have health problems. I do not mind.

We got married in 1963 and we are still married, 46 years later. My seizures kept getting worse and he has always taken care of me. He is my caregiver.

There are men out there who are like my husband. Back then, there was more of a stigma than there is now.

[gigi]

Hello all:

To those women who are still dating or finding their significant other. My first husband, who is the father of my children was not all that great at acceptance of my epilepsy. I told him fairly quickly, but he did not comprehend the magnitude of tonic clonics. Never got accustomed to them.

Fast forward to my second husband. When we met he was still a police officer and had seen it all, so my seizures were nothing. He has since retired. He has always been the calm after the storm for me when I have had them. He is my gentle giant! As someone mentioned, everyone has a health problem of sorts. My husband has injuries from being in law enforcement, so we help each other.

[Cinnabar]

Shelly, If he's "that" kind of guy, you don't want him. Think about it. What else wouldn't he be there for you? You'll find that smart, giving, open minded guy. But take your time and don't rush like I did into two marriages, not thourougly testing the waters. You'll find each other!

[wichitarick]

hi....
NO I know most folks just have no Idea what is going on though.
Very ill informed in some places . I have always used the words siezure disorder and that never gets that AAAAHH or OHHHH response .
I have formally scared the >?<"t out of a few people that were scared to even talk to me again .
My daughter then 11 did a school report on E and became the spokesperson for several schools because of it and "INFORMED" THEM LOL her teacher has it and me and my daughter got a bunch of lit. from the clinic here and she got a tape and now they KNOW.
But no and in a city a lot of times people assume it is drugs before they assume anything else. I am on ssdi and am starting to notice more people giving me that wink ? Like I am faking somethinglol.
My now ex wife is the only person to even hint I may be faking being on ssddi lol
she has seen me /helped me. seen the damage from 100,s of gmal and she thinks somehow that is fake ? lol.
weird world every day I count out of a wheeelchair I see me as less than disabled.
as far as the other stuff "dating" I am not with my former wife anymore and have dated a few time and have olny been with one person that I did not fully disclose who I am
Most people say something like ????AND? SO WHAT.
You never know I guess I know it would scare me . thx Rick

[stilldancing_98]

You know I grew up thinking that epilepsy was just another hurdle. Everybody has something.Then things got really hard. With my son having it the other things like really bad memory , the coma, cancer. But now 9 months without a s. I date.If I like him and we are going out I usually go with a friend first anyway. The next time I just tell him he will need to pick me up. You know girly style, if he doesn't like me because of a car. Oh well. His loss.He is the one missing out. There is a lot more to me than epilepsy.

[Cinnabar]

Witchitarik and stilldancing! Good for you both. Who wants to be around narrow minded people anyway... They're likely to be dull in others ways! Stay in the love.

[Ruth]

Witchitarik and stilldancing! Good for you both. Who wants to be around narrow minded people anyway... They're likely to be dull in others ways! Stay in the love.