Do you think there is a stigma associated with epilepsy?

[Blackout]

Yes, there is a stigma. I also agree with some people on this site that said medical professionals might be the worst when it comes to a stigma due to epilepsy.

One short example. I went to a new Dr and had to fill out an information sheet and was asked a few questions by the front desk nurse. I told her I had epilepsy. She said, "you don't seem like you have epilepsy." I'm not sure what a person with epilepsy is supposed to seem like.

[gigi]

Did you say, "well you don't seem like an idiot either, but apparently you are!" Personal input/observations are supposed to be kept to one's self in the medical profession. That is not in her job description to make random comments, but people fall short, and stick both feet in their mouths.
I had a nurse (before she looked at my chart) got on the topic of photo sensitive epileptics with other staff which spilled over on to me. She thought "they" were strange. Since I have a mean streak, I could hardly contain myself, but blurted out that I was epileptic, mahahahaha, mahahaha. Okay, you get the picture. I am guilty of making assumptions about individuals, but save those for the appropriate setting, like bending my husbands ear in the privacy of my home.

[Ruth]

Welcome Blackout, I am glad to meet you. You have the right attitude towards people like that. I just ignore them. I will not stoop to their level.

Bernard is our host!! He made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

[Aubrey]

Right on Gigi - I am not pro-tact, fools should be made to learn the hard way, by having it pointed out to them that they are fools.

[stilldancing_98]

Its all where you live. Everybody in my complex knows about epilepsy now. Different kinds of epilepsy. My son has it so now they know it runs in families. And just because you have epilepsy does not mean you don't work.Yes people are ignorant, but again unless they have a reason to learn about it........

[brian189]

I'm kind of the same way. I don't advertise it, but if people ask, I tell them. If it bothers them, then I guess they have a problem. I think it's funny when people who know I've had a seizure say to me a week later, "I heard you were sick, how are you feeling"? They sound so ridiculous. As if you had a bad head cold. Three weeks ago, I had my first seizure in over 5 years. My band was performing at a local bar. We play there again this Friday night. I'm looking forward to it, but I'm sure I'll be answering a lot of questions.

[Ruth]

Hi Brian,

Glad to meet you!! Welcome to the forum. It was made out of love by Bernard for his wife Stacy.

When I first moved here, my neighbors knew nothing about epilepsy. After my several trips to the hospital, they have learned about it and accept me for who I am. They do not visit me. It is not because they are taking it lightly. It is because they know I need my rest. They are right. I want to rest when I come home.

[Franchise]

About 5 years ago, I worked at a factory on the line. All things considered, it was a good job. I had a bad stretch for a couple of months and missed a few shifts. I was called to the plant manager's office to discuss my problem. I told them that I was having some seizures and that my neurologist had suggested that I take a leave and spend some time in the hospital all wired up and such to see if surgery would be an option as the keppra had stopped working. I was told by the plant manager that a leave would not be granted and that if I missed any more time I would be fired. Mind you I had worked there for two years and had only missed one day before this period. I was angry and called my neurologist for help.I spoke with his nurse which I did 99% of the time and she was angry and within 1 hour I had an FMLA form which made me about bullet proof at work. Two days later I was called back to the plant manager's office with a corporate rep and our human recources guy and was told how sorry they were for the miscommunication. Ha Ha. One month later, I got a hernia from lifting on the line. I went to the ER that night as the clinic was closed for the day. Ther ER doc said definately a hernia. Gave me a note to take to work and a scrip for pain meds. We all know how hinky that can be. I brought it to work the next morning, (I worked 2nd shift at the time). I had to see the company doctor who said no hernia and was told I had to report to work that afternoon on light duty. I told them impossible as I hadn't slept nor been able to take any pain meds yet as I had to get the okay from HR to get the scrip filled. I told them that sleep deprivation and epilepsy are not a good match but I still had to have a call (threat) from my neurologist's nurse to be excused. BTW I saw a surgeon who said that day who said that is was clearly a severe hernia. But, as I still hadn't slept in around 36 hours, I seized out in his waiting room. He had never met me and assumed I was a large drug addict trying to score. He then red my chart at the insistance of his nurse and apologised profusely when I came out of it. With all the "misunderstandings" I was off work for six weeks and found another job while I was off. That was an interesting two months.

[Ruth]

Hi Franchise,

Welcome to CWE. This wonderful forum was made out of love by Bernard for his wife Stacy. This love permeates throughout the whole forum.

I am sorry for the horrible time you went through with your job. It ended up good. You got another job. One where you will be appreciated.

[stilldancing_98]

How's this one? My friend said her church friends said " to Go on and do what you need to do.. it won't bother them a bit." I love that story. And they asked her if she needed a helmet.lol and if you don't tell them there is no stigma and they don't look at ya funny and wonder if you are going to fall down. Same with diabetes.lol

[Ruth]

My friends feel the same way. In fact, they tell me I do not do enough. There is no stigma with my neighbors, either. They understand my epilepsy.

[C0urt]

I have given up on it. I am not going to make any progress in trying to hide it. it affects to much of my life. Plus we live in a society where you have to have a decent reason not to drive it seems.

So I might as well tell people

[stilldancing_98]

I'm just kidding. Please, I'm a big advocate for educating people about epilepsy. And my son has kidney disease. So please sorry again if I offended anyone.

[Ruth]

Hi stilldancing,

I know you are an advocate for epilepsy. you have nothing to be sorry about. You did not offend me or anyone else. Everyone who knows you, knows you believe in educating people.

I am sorry to hear that your son has kidney disease. That is causing you a lot of stress. I Love Ya!!

[Cint]

I'm just kidding. Please, I'm a big advocate for educating people about epilepsy. And my son has kidney disease. So please sorry again if I offended anyone.

I am also a big advocate for educating people about epilepsy and last evening I had another opportunity to do so. I was out with a group of friends, three of us ladies are single now and one married couple. During our conversations, one lady for some reason brought up the subject of people with disabilities such as Down's Syndrome, cerebral palsy, MS and a few others. She didn't understand why people with those kind of disorders would be allowed on this earth. The more I listened, or tried to listen, the more uneasy I became. Then the conversation turned to how people can live in this world if they have suffered burns, especially on their faces. At this point, I could not keep my mouth shut any longer! So I rolled up the sleeve of my sweater and showed them the burn scars on my arm. Of course, questions of how did it happen followed, so I had my opportunity to tell them about epilepsy, how I had my first tonic clonic seizure in the shower and how hot water can burn at the age of 22 years. It sure dulled the conversation. Oh well.
When these type of discussions come up with people I do know, I WILL NOT keep quiet. IGNORANCE IS BLISS for them! Not for me. I'm tired of catering to people, if they're uncomfortable with the subject, not my problem. So many seem to think they're invincible and when reality knocks, they scream bloody murder!

[stilldancing_98]

That is so great. People are so scared to talk about things. I am done with that. I have a couple of burns on my arm when I was a teen and was curling my hair and had a siezure. 3rd degree burns. We have so much to share and experiences with other people.Thanks again for that post.

[Ruth]

Hi Cint and stilldancing, I agree with you.

[stilldancing_98]

Thanks for agreeing. Youre the best.

[wichitarick]

Howdy from the peanut gallery

Gee the little "dinner conversation" about the "disabled" folks having breathing room on planet earth was a nice reminder to ignorant people left on the planet. WOW .and they breed too. ? wow.
A little out of the subject but applicable .
I settled a ongoing dispute with a very lazy co -worker by finally "literally" drawing a line in sand and s-l-o-w-l-y- e-x-p-l-a-i-n-i-n-g- to him that I was no longer MAD at him anymore. .

I WOULD SURE LIKE TO SLAP HIS MOTHER !

Let us please educate our children and our families AND the rest of people we run across in our daily lives so THEY will have something to say to the lady at the dinner table about whether WE have a place to live or not.. wow lol
I have known a lot of folks over my life with some sort of "defect" or another and almost all of them had a sense of humor about their issues
BUT if ever told THEY were a problem
let us just say I have seen a few shoving matches involving a one eyed gentleman. lol
a lunatic in a homemade wheel chair M.S.(Steve r.i.p.)
A former drunken neighbor /shot out Korean war vet/epileptic/mean old man /lol that was constantly telling the world THEY WERE TO TALL
because HE was in a wheelchair lol.
I used to go through a metal detector at work twice a day with a friend who was technically disabled and when he set off the detectors "daily" he would explain (whether wanted to hear it or not lol) that he had pcs. of lead inside of him from a war and from being a police officer .
He "educated" people all the time
"cint" and "stilldancing" I need you to understand those burns ,those scars
made someone feel a little better
WHY ? The seizures I have had lately left me wreck and with a headache (waaa!) But I did not get burned or hurt to bad this time.
Thanks .
I predict when someone has a gmal holding onto their Oscar or Emmy etc. the world will be more involved.
for now the best I can do is help remove the stigma by letting my child do reports about "it" for school and we pass it on.
Pardon my rambling but I get a little confused (legally lol) because I have a ribbon of EVERY color in our fence just so we are politically correct AND nice.
I would still feel bad if I fell on the lady at the dinner table while I was having a seizure. BUT it leaves me wondering if she would feel sorry for meOR want to have me burned at the stake
I DO NOT have demons inside of meand neither did Davinci. lol Rick

[Ruth]

Hi Rick, welcome to CWE. Bernard made the forum out of love for his wife Stacy. You will feel that love all aroud here.

You keep rambling all you want. Why do you want to slap his mother?