Do you think there is a stigma associated with epilepsy?

[John-Forrest]

Epilepsy is an interesting dis-ease. It has been regarded with either awe and wonder - or with gasping horror! It used to be in certain primitive tribes that it was regarded as either a demon possession or a blessed holy state of the gods! Persons with the seizures were either burned at the stake or worshipped. It was a sign from the gods that the person thus seized that this youth should be apprenticed immedicately to the tribal shaman.

In the nineteenth century, it was an immediate ticket to the lunatic asylum. Or it was regarded by some as a profoundly mystical state of consciousness (though they often kept that to themselves or in secret societies).

It's probably because it's so weird to the onlookers - to see someone twitching around for five minutes frothing at the mouth. There are few disabilities that are regarded with such awe and loathing.

I think I've literally seen people cross themselves when I reveal to them I have seizures. At jobs, they wanted to immediately let me go. At least, I get quite a few raised eyebrows not unlike fear when I tell this deepest darkest secret of mine.

No wonder we keep it to ourselves!

John

[brain]

Epilepsy is an interesting dis-ease.

John

Epilepsy is a Neurological Condition, not
a disease!

Although you can get it FROM A disease,
but it is NOT a disease. Sorry!

[montse]

I agree with you Brain

[Yves]

Sorry to disagree brain!

What is your definition of disease? I looked for it and it fits the definition: "a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment"

I actually found it interesting to affirm my epilepsy. It's a very good way to check the openmindness(?) of the others. and uncover their true nature.

Then you know who you can count on and the others...

Yves

[John-Forrest]

Hmmm, I didn't think there would be such a take-off on the word "dis-ease". Actually, I was in the middle of one of my "silly fits" when I wrote that. You'll note that I wrote "dis-ease"(as in uneasey), not "disease".

Yves, I like what you say: "I actually found it interesting to affirm my epilepsy. It's a very good way to check the openmindness(?) of the others. and uncover their true nature."

I will remember that. Of course, I have a gerneral policy to conceal my condition when speaking to job interviewers or policemen. They can be very mean.

[brain]

Yves:

It's been a common argument for years
about Epilepsy being a disease or a condition.
If it were a Disease - it would be associated
with Chicken Pox, HIV/AIDS, German Measles,
or some other contagious or infectious disease.

You can find more specific generalized information
by looking up here at:

Epilepsy Foundation - Epilepsy 101

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions.

Epilepsy.com - What is Epilepsy?

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder.

EpilepsyAdvocates.com - FAQ

Epilepsy is a brain disorder in which people experience repeated seizures. Let’s start with the basics. Epilepsy is a neurological condition that causes the brain to produce sudden bursts of electrical energy. For the brain to function, there needs to be a balance between increased activity (excitation) and restraint (inhibition). When this balance is changed, a seizure may result.

There are many more professional websites I
can provide you in addition, but sufficient are
the above three. If you wish for more, I'd be
more than happy to provide more.

[Birdbomb]

A rose is a rose is a rose......



But epilepsy is more like stinkweed!

[brain]

I like Birdy's definition the best!

All in favor ...

SAY AYE!!!

[John-Forrest]

Now, now, there's no point in calling our conditions foul names. They may get terribly offended. Let's be good to them and maybe they'll be good to us.

[alivenwell]

But, a stigma with the stinkweed is definitely similar to the stigma from epilepsy. The only difference between that rose and the stinkweed is the rose takes more maintenance. Stinkweed just crops up wherever and doesn't go away!
If only my horrible plant maintenance skills could get rid of the stinkweed in my life!

[stilldancing_98]

I have a great epileptologist in Seattle . Other Dr.s tell me I am very lucky to have this Dr. He has been my doc for 11 years now and he has been my sons doc for 2. He is very open to alternative. He just says don't get stupid. The prescribe marijuana for epilepsy there to. If I spelled that right. I mean they just don't throw it out every where lol. But I did some research and I tell him everything. so. I have time to do the research. I have been on almost every medication. I grew up in the late 60s and 70s epilepsy was so different back then. Neurologists yelling at me, because we knew nothing. Now the epileptologist center we go to its a team. I am seen every 2 months.They fill me with information. They teach me to want to learn. And it is everything. It's diet, it's exercise, it's attitude.My nickname from my brothers football team was spaz. I didn't care. I got attention and dated some.lol

[forward2007]

The sad reality is a lot of people who DON'T have epilepsy in the best case scenario don't know what to make of it and in the worst case scenario are straight up afraid of it and see it as nothing less than a financial liability.

[Jason]

I believe it is more a fear of the unknown amongst people when it comes to epilepsy which can been seen from the earlier posts that describe worshipping or burning of people and then in latter times sending them to mental institutions.

I have been epileptic for around 8 years now and every time I tell people about my condition the first thing they ask is what causes it and my normal answer is 'I don't know' because I don't.

I once went for a job interview which was going really well until they asked about any medical conditions and I told them about the epilepsy. You could instantly see the shock followed by loads of questions about how I thought it would affect my work which I told them I thought it wouldn’t as it was controlled, but sufficed to say I didn't get that job.

On further job interviews I have never offered to tell them about my condition but wont lie if asked and will always tell them prior to accepting a job because if they then withdraw the offer it can only be for one reason which in my eyes is discrimination.

In my present job I did exactly like I said above and told them before accepting the offer. I started the job and worked there for about 6 months when one day in passing over lunch I happened to mention to my manager about my condition and once again there was that all to familiar look of shock followed by a meeting with one of the directors to discuss my epilepsy and then followed by a private medical review to assess my health.

I am still with the same company and have been for 3 years now but have never had a seizure during that time until 2 weeks ago when I suffered one on the way home. When I called another manager the following day to tell I him wouldn't be in again he was shocked and unaware of the condition.

[Axa]

In my experience there is no stigma. But on the other hand I've always lived in circles who have some awareness. Also, my seizures (short simple partials) are not noticeable - even my husband (who used to work as psychologist at neurology ward) doesn't always notice them.

Maybe reactions would be different if I weren't extremely good student, successful at work or if my seizures were of different nature - who knows.

As for telling people: my seizures aren't dangerous - neither for me neither for other people - so I tell about it just to people I would tell about inflammation of the ovaries or kidney stones. I don't see why should be different with E. As for how I tell, I'm the same as Bernard's wife.

[Stacy]

Most people are just fine with my telling them I have Epilepsy. Some are skeptical, but only one lady (from my MS Chemistry class) thought I was faking it, because the class was hard. The rest of the class and the professor was very tolerant. I would study and study. prepare and prepare for a test (participating in study groups, ect), but when the test came around, I couldn't remember the answers. I told everyone this, but only that one girl didn't believe it was true and actually told me to, "...quit faking it." Yes, there's a stigma, and yes, once people are informed, they are usually fine with it...even the Dr's. I've had to do much of my own research.

[RobinN]

We investigated beliefs about the causes, course, and treatment of epilepsy and its impact on quality of life (QOL) in key target groups, using “mini-ethnographies” involving 141 in-depth interviews and 12 focus groups in China, and 84 in-depth interviews and 16 focus groups in Vietnam. Data were analyzed thematically, using a qualitative data analysis package. In both countries, beliefs about causes and triggers of epilepsy and seizuresnext term were a complex interweaving of Western, traditional, and folk medicine concepts. Epilepsy was understood to be chronic, not curable, but controllable, and was seen as enormously socially disruptive, with wide-ranging impact on QOL. Our findings suggest a more “embodied” and benign set of theories about epilepsy than in some other cultural contexts; nonetheless, people with epilepsy are still seen as having low social value and face social rejection. By exploring meanings attached to epilepsy in these two cultural contexts, we have clarified reasons behind previously documented negative attitudes and foci for future intervention studies.

http://www.sciencedirect.com/science...8d543198090123

[stilldancing_98]

I have gone through so many phases with epilepsy. I had a great teacher when I started having them so it started me off right. And a great family. My mom mostly. I have always had a big mouth so I was never afraid to admit it. But I do remember the first time I told the classroom I had epilepsy. I showed them on the chalkboard brain waves. And spikes. I was loved still. But it's when I got into high school things became hard. I was on to much Depakot. I was way overweight. I was extremely musical but couldn't comprehend much more. But I am a fighter. I got off of Depakote. I was toxic. Lost weight,worked out, had a baby with epilepsy, then I became a warrior.Got divorced because of epilepsy, He couldn't handle it all.Then had brain surgery. That made it worse. But I learned a lot. Then I had some b-cells in my brain and went into status and a coma for excuse me induced coma for 4or 5 days. It made me love life more then you can imagine. But I lost so much memory. Everyone....it's just ignorance. Everyone is ignorant in some way. I still have some sort of seizure every day. It really is about attitude. You have to look up. I do look down sometimes. Mostly because of dating. No body wants to stick around when they find out about my son and I. But I got to look up.Teresa

[keyna]

I find there is a stigma, at least around where I live. People stare all the time because my hands shake all the time. When I started taking medicine they expected it to work like magic and I would instantly be better. I tried to explain that it didn't work like that. If I have a seizure and people are around they just stand there and stare at me. They think that just because you look good that day, you can't have a seizure-what because I have epilepsy I'm not allowed to do my hair?? They always want to know when is your VNS going to start working? I want to scream at them "beat the sh-- out of me?". They act like if I'm not at home in bed I must be cured.

[stilldancing_98]

Ya, I have a friend who's hands shake like that and she gets remarks like that all the time. It sucks. I used to get things like "should you walk up the stairs alone"? And even now with my son having epil. And me to I get "well should you be raising your son by yourself?" I just kind of laugh and say "do you want to raise him , I mean he is a tough one, then they kind of back off. My mother used to get so mad at those "Gawkers" People who stop and stare. They have nothing better to do then stop and stare at people who are having a hard time. I have stopped and turned around and yelled
"You can all stop staring now!" When my son had one of his fits. You should just encourage people if you want to stare at them. I think anyway.

[skillefer]

I agree with some of the other posts...the stigma that exists is due to ignorance. I wonder what would happen if there were PSA's on TV that gave as much info on epilepsy, as we get in the TV commercials that talk about erectile disfunction and diabetes?