Do you think there is a stigma associated with epilepsy?

[McGill]

The problem with it is that E is something for which they can't have any control nor can the medical elite have any definitive cure. Their reaction of panic rather than a response or "Wait before you respond!" hasn't really clued into their line of thinking. Some disorders have no cure, so they will deny it or make any excuse at all to deal with the reality of the disorder.

[stilldancing_98]

Today I watched the Dr. Oz Show about meds and different taking the wrong doses and also accidentally taking the wrong meds. He was talking to different people in the audience. One lady had epilepsy. She was just beautiful. I was so glad. He didn't make an issue about her epilepsy just asked her to point out the meds she was on. It was wrong. But if I was glad to see that. There must be a stigma.

[McGill]

Sadly, they still think that there's some form of mental illness attached to E. It's similar to any mental illness b/c there's no cure & b/c it's in the brain - an area which is extremely hard to figure out all that it does and at the rapid speed at which it carries out the various bodily functions.

[Ruth]

Heads Up!! On Sunday, October 29, 60 minutes will have the founder of CURE and other renowned people on, to address Epilepsy problems & challenges. Tune in. Our disorder is finally getting the recognition we need so badly.

[KelVarQ]

Prior to surgery I would never use the E word and it wasn't a concious choice and would only use the term seizure. After surgery and no longer having E i would say, "Yes, I had E but I had the surgery and I'm cured." Today, the E is back and I not only use the term E but I use it a lot! I have no problem telling people about having E and to be honest I sort of make it a point to tell people. Surely I'm not bragging about having E (haha) BUT I think for so long NEVER even saying the word E and not knowing why I never used it annoyed me more than anything and now I've embraced it and sometimes I feel like telling the world. Weird Perhaps it's my way of "knowing" there's a stigma since I never used the term for some unknown reason and now it angers me and I WANT people to know THERE'S NOTHING WRONG WITH IT!

[Ruth]

There is nothing wrong with using the word epilepsy. Seizures can occur in other disorders as well.

For instance, NEAD, non-epileptic attack disorder. The seizures are not caused by epilepsy. They are caused by pschologict reasons. A fever can cause seizures. If I look it up I am sure I can find a lot of other disorders that have seizures and have nothing to do with epilepsy.

What did your neurologist diagnose you with? That is why you are here at CWE.

[Kayleesmom]

Yes. I see it all the time with my husband and daughter. There definitely needs to be more done to spread the word about what epilepsy is and what it is not. I spoke to a group last week with the Epilepsy Foundation in Chattanooga. There were alot of misconceptions about seizures and epilepsy. I can't say I was surprised, but hopefully we helped clear things up for those folks anyway. I am also going to be featured on the news in Chattanooga talking about epilepsy and the book. Wish me luck. I hope I can help for my loved ones sake and yours.

[Ruth]

Hi Kayleesmom,

That is great!! More and more accuracte information is getting out. In my post on #224, be sure to put it on your calenders. It will be On a National station.

[McGill]

The problem has always been "Fear of the Unknown"! People panic when they can't control something. They never take the time to ask the person who has seizures what type they are or for any important information.

[McGill]

Ruth, I have always told people I know as well as lecturing to the Nursing Students. Different things can provoke seizures, as you know. I've made a list of thes "triggers' for me and let people know just what types of triggers could cause seizures in me.

The critical factor is that I can't tell anyone WHEN they will occur. This what causes so much panic in people.

[McGill]

I have! You can't change human nature nor can everyone always remember to not panic!! I have told some people that it's cheaper for me to take a taxi to the hospital than it is to go in an ambulance, but they won't listen! People react; they DON'T respond!! There's a huge difference b/c I've experienced it already with a dr. this summer. I have the hospital test results to prove my statement!

[Ruth]

Hi Everyone,
I put down the wrong date for 60 minutes. It will be on Sunday, October 25. It will have the founder of CURE and other renowned people on, to address Epilepsy problems and Challenges. Tune in. Our disorder is finally getting the recognition we need so badly.

[gigi]

I still get the , "let's burn her at the stake" looks at times. I have not had a seizure in what I will call public. I tend to be a bit reserved and reclusive at times. Do not easily make friends and maybe it is because of seizures, or having a neurological disorder. This topic does not come up easily in casual conversation as opposed to physical complaints such as "ma back hurts today Leroy!" When I worked for an attorney, everyone in the office knew about my seizure brain, but thought it rude I suppose to bring up in a conversation. We talked about bad backs, the flu, headaches, hangnails, heart attacks, hell even hemorrhoids, but a big silence would fill the room when E was brought up like someone had just farted out loud. I have a friend who is bi polar, and I asked her one time why we do not talk about our brains, we mostly laughed. A sense of humor as people point out, is a good outlet.

[Cint]

When I was first diagnosed with epilepsy I was 22 years young. At the time I felt I didn't need to let the public know because back then I was only experiencing complex partial seizures. After my son was born, the seizures increased in intensity and turned into tonic clonic at home and in public, so it came to the point where I could no longer keep it a "secret". As my children grew and attended school, I went to the school and spoke to their classes about epilepsy, for the sake of my kids. I did not want them to suffer embarrassment when others saw their mom in public having a seizure. Both of my children know and understand what to do when they witness a seizure, probably better than anyone. When my son was in HS, he took speech and debate. He gave a speech about his mom and epilepsy. I was so proud of him! Neither one of us were embarrassed by it. It needs to be talked about. And so does Mental Health issues. I'm bi-polar, too, btw.

[McGill]

Cint, unfortunately for me, my parents kept my E hidden out of shame. We have to take into consideration the different ideas in the generations, though.

While I was told "not to tell anyone", indirectly I was hurt. That ws the unhealthy mentality then (1960's). Neither did I have the opportunity to debate like your son; rather our debating was on political issues at the time & I spoke in several languages.

However, when it came to doing some PR about E, I had incorporated an non-profit organization alone and wound up speaking to the student nurses at the Nursing School in the hospital. I later wound up being on local cable TV talking about the disorder as well as on radio to try & inform the general public about what your son so eloquently articulated in his debate.

However, the stigma still is prevalent among society here, primarily b/c or fear and ignorance rather than one of interest & education. It's only been when "professionals" have had to begin to cope with such a disorder that they begin to ask questions and try and find out information - from us! There are times when the medical profession needs tp become the student & we become the "professionals." Only AFTER I have told the drs. that I needed something "because I didn't want a 'repeat performance' of something I expwerienced more than 25 years ago" did they begin to listen.

FTR: I'm being descriptive about what I posted b/c I have experienced this before. I have no desire to condemn anyone; yet there's no excuse for ignorance, either!

[Belinda5000]

I think a lot of ppl give pl who have epilepsy a bad name because they drive when there not controlled and they make it harder for others that are.
If ur having seizures don't drive.
I think the driving laws R terrible yet I've never driven and probably wont.


Belinda

[Ruth]

Hi Belinda, I decided not to drive on my own. It was legal when I was 16 for people with epilepsy to drive. I decided against it because I did not want to kill myself or someone else. I am 66, that was a long time ago.

Ruth

[C0urt]

does anyone hate having to explain to people why you don't own a car. people always assume you have one. and there seems to be a stigma with not having one.

[epileric]

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

I've since started saying "for medical reasons" & try to change topics. Few people have questioned that so far, though I'm sure a lot of them wonder.

[McGill]

Yes, but I state my reasons this way: I've been statutorily prohibited from driving since the day I was legally eligible to drive. Besides, it saves on all the extra gas taxes which the gov't doesn't use wisely for its intended purposes.