Do you think there is a stigma associated with epilepsy?

[Duke]

Definetly theres a stima, having epilepsy since 2 years old I told my friends I had epilepsy when I was in school. And told them what they needed to do if I had a seizure. Some understood and never had a problem, but there were others and from time to time still are people that just need smacked. Having epilpsy dosn't mean we can give them our condition while having a seizure.
Anyway my vote is YES!! Duke

[TeeTees]

I just feel that with Epilepsy being such a widespread condition, there really doesn't seem to be much "awareness" made of it to other's. Maybe it's because the Medical Boards still don't understand enough about the condition themselves ?

But it would be good if other's were made more aware of what to do, and how to react to someone who is having a convulsion, and also to understand that we are not freaks

[Byron]

From what I have experienced, It hasnt really seemed like a stigma. I have read old articles about how people with epilepsy were looked at like they were crazy or something of the sort. I guess I have never seen that. But then again I come from a very small community and people were "generally" very supportive.

I have to agree though that if there is any stigma it is from lack of awarness. Some people just get scarred and dont know what to do. I can remember countless people asking me what to do if I had a episode in front of them. I can always remember them saying they thought they were suppose to jam something in my mouth and pin me down. People just dont know the damage they can cause.

[TeeTees]

I have read old articles about how people with epilepsy were looked at like they were crazy or something of the sort.

Just a bit off useless information for you Byron (I'm full off it - hehe) :

Back in Medieval times we would all have been burned at the stake, as epileptics were believed to be people who were possed by evil spirits.

I bet your soooo glad I shared that bit of information with ya....

[spinnymommy]

As far as I know, and I assume I'd know, I've never had any seizure worse than a complex partial.

However, I have had a few people not take me seriously because of my brain injury. Most people however, have been very understanding.

In a store I did have a lady stand next to help me just as I came out of a complex partial. I don't know how long she was there, but I was gratified and embarrassed at the same time.

I really don't know about whether there is a stigma or not, except to take everyone's word that there definitely is. 'course I haven't had this all that long either.

[Tate]

hello All,

I was diagnosed with E when I was 15,... Puberty time i want to be like everyone else time in my life....

School was hard, but now realise pthat it was iggnorance lack of understanding and fear...

i was hassled a fair bit at school until my teacher held a seminar on various health conditions one being E

She was a wonderful support to many people at my school, she made it fun while giving people the chance to be educated, she invited professional sporting people models people in the entertainment industry who either themsleves had a health condition or whom were personally touched by one.

Now I am an adult I find that the stigma has personally eased, there will always be the one person who will be arrogant or make fun....

I just remind them that they do not live in a glass bubble of protection in a friendly way, and where possible educate people and dispell associated myths such as its a mental condition or that u are about to swallow your tounge, As I do belive education is they key understanding reduces fears..

But hey we cannot help that some people lack understanding and compassion, as long as we keep it..

Live happy love caringly

take care

[alivenwell]

In a way, there's stigma. If you're not driving like everybody else, you never go anywhere alone. And, if you get injured, one of the first things some doctors ask is whether you have had a seizure (I'm not graceful and that doesn't include a seizure!).

And, one of the best ways to view the 'stigma' is that if helps you pick out your friends from the rest of the ignorant ones! If you want to dump a friend (boyfriend, girlfriend) or test a potential marriage, tell the other person you have epilepsy. It's a true test!

[Bee91]

I try as hard as I can for people to just...accept it as a part of me...In a way, I use Epilepsy to my advantage. I try to get people to laugh with me (not at me) when I have a seizure or when I'm high on seizure meds And My favorite shirt says "I rock" and has a picture of a rocking chair on it. And when people notice it, I tell them to take it literally, cos when I have a seizure, I do rock...

[alivenwell]

If somebody laughs at me, it's probably during a seizure. In a business environment where meetings occur, seizures are disruptive. I am frequently excluded from meetings that are not absolutely necessary. I tell my 'included' friends to take good notes.
I've dealt with the really ignorant ones face to face or with overt emails (no cursing) that describe my epilepsy in detail and copy management in on them. The ADA is such a joke. But, publishing a company in the news can really be embarassing if they reflect a lack of 'diversity'. They know that, and I know that. I'm a fighter. I've never taken legal action, but just showing that I'm able to function at my job competently and a really good backup of emails to prove it in writing is a great way to prove I'm a good employee.

[Megan]

I think there is a stigma attached to anybody that has a "special need". I think alot of society misunderstand and misjudged expeically people with epilepsy because they think that we're either dumb or mentally challenged.

[montse]

And the stigma can go to others, for example my daughter is ADD, at school I went to a doctor they said, I asked the teacher if she had observed anything strange with my daughter (I mean about epilepsy), the answer was no.
I offered myself to help people who were having epilepsy at school, the answer "There is not anybody wiht it, but thanks".
One year and a half later we stopped to go to "their" doctor, imagine, now there are problems everywhere, they "suggested" that my daughter had epilepsy.
I talked with my doctor, he said that my epilepsy is not hereditary, it came with sarampion.
I felt so down, and he also said to me, "you have a lot of experience about it and you would have noticed anything strange".
To stop suffering, we made an EEG, there are no epilepsy problems.
Imagine the days I have lived, thanks god there are no problems.

[alivenwell]

And the stigma can go to others, for example my daughter is ADD, at school I went to a doctor they said, I asked the teacher if she had observed anything strange with my daughter (I mean about epilepsy), the answer was no.
I offered myself to help people who were having epilepsy at school, the answer "There is not anybody wiht it, but thanks".
One year and a half later we stopped to go to "their" doctor, imagine, now there are problems everywhere, they "suggested" that my daughter had epilepsy.
I talked with my doctor, he said that my epilepsy is not hereditary, it came with sarampion.
I felt so down, and he also said to me, "you have a lot of experience about it and you would have noticed anything strange".
To stop suffering, we made an EEG, there are no epilepsy problems.
Imagine the days I have lived, thanks god there are no problems.

Montse, this may be a stupid question, but in my childhood days, when I was about to have a test and knew I did not study for it, I would 'fake' a seizure. If it was a good act, I would get sent home. While all my classmates were taking that test, I was playing with my toys at home! I used the ignorance of teachers. One teacher used to carry me down the hall to a nurse's office. Another teacher was indifferent. Some teachers were really compassionate.

Is your daughter imitating a seizure like I did as a kid? If she starts doing a faker at home, then you'll know it. I could not fake my mom out. She was too sharp. Her technique was to tickle me or say something really funny to make me laugh.

By the way, if your daughter is sharp, she'll make it through all this. My son was 'diagnosed' with ADHD after his school found out I had epilepsy. He was on Ritalin which really did not help him at all. He hated it. I had him tested with an EEG which came out normal. The school really wanted those results. I did not tell them. He always wanted to take karate. Now, he is approaching a black belt. The discipline and confidence he got from that was incredible. My escape from the harsh treatment over the years was to play piano, bassoon, and a few other instruments. I hope your daughter has a good escape from her 'different' treatment at school. My son is in his 3rd year at college and is doing well.

[alivenwell]

I think there is a stigma attached to anybody that has a "special need". I think alot of society misunderstand and misjudged expeically people with epilepsy because they think that we're either dumb or mentally challenged.

Megan, the stigma is real and very much alive, even today. However if somebody overtly says something about the epilepsy, a really good smart remark back at that person can really be powerful.
I had somebody ask me if I was retarded (obviously I am not!). I had several college degrees and he knew it. My smart reply was something like 'I feel sorry for people who cannot tell if somebody is retarded'. Laughter around the cubicles was loud. He was humiliated by his own discrimination. Ranking and smart remarks are really powerful.

[Birdbomb]

I feel sorry for people who cannot tell if somebody is retarded

THAT is a gem! Some people are SO condesending in their treatment of those with E. When we are post-ictal, I guess we do look "retarded" but seeing how our brain are otherwise engaged, it may be natural to assume we are't all there. I just HATE when they speak to me like I am a child. But it's usually the really ignorant ones who behave like this. (medical professionals INCLUDED!)

[brain]

Birdy & Alive:

Both of you have elaborately posted it so
well, especially the ignorance of the Medical
Personnel (not all of them but some of them).
It's sad, considering the years they've spent
in College/University - makes you wonder how
much they really paid attention in skool, I mean
school! And I personally myself wonder how in
the world did they ever PASS? Or did they pass
by the SKIN OF THEIR TEETH?

[alivenwell]

Birdy & Alive:

Both of you have elaborately posted it so
well, especially the ignorance of the Medical
Personnel (not all of them but some of them).
It's sad, considering the years they've spent
in College/University - makes you wonder how
much they really paid attention in skool, I mean
school! And I personally myself wonder how in
the world did they ever PASS? Or did they pass
by the SKIN OF THEIR TEETH?

I'm guessing this was the extent of their chemistry class:

http://www.eepybird.com/dcm1.html


and somebody else wrote the research papers....

[montse]

I had a seizure when I was 8, I was with fenitoine until I was 13, it did not repeat until I was 20 and I was not taking drugs, things that happen...my daughter never has seen a seizure in her life, I think that what happened was that after PT she felt sick, she did not convulsionate, but knowing about my epilepsy the door was opened to see problems that do not exist because now we do not go to the doctor that "they recommend" and that I can affirm gives the school money comission for every child that goes to them
You can imagine the days I have passed until I saw the result of the EEG, my husband saw me so down that he wanted to go to school to tell the teacher that she was a....imagine four letter words...but I told him to wait. A woman I know whose daugther went to that school until she decided to change, told me "do not worrie, others schools in the zone know about it, because children who "had problems there" never had problems in others schools.
I never lived problems at school because i had no seizures, but I know that many teachers "are afraid" of us, my god what a terrible experience for the other children in the class...
I have seen many seizures, I knew a man who came to buy the magazines to my shop that had one per week.
And who can know better than us? doctors in fact never have had a seizure, they know what we explain.
And there are still people that think we are mad or have a mental illnes, I think it is them who have it.

[alivenwell]

I had a seizure when I was 8, I was with fenitoine until I was 13, it did not repeat until I was 20 and I was not taking drugs, things that happen...my daughter never has seen a seizure in her life, I think that what happened was that after PT she felt sick, she did not convulsionate, but knowing about my epilepsy the door was opened to see problems that do not exist because now we do not go to the doctor that "they recommend" and that I can affirm gives the school money comission for every child that goes to them
You can imagine the days I have passed until I saw the result of the EEG, my husband saw me so down that he wanted to go to school to tell the teacher that she was a....imagine four letter words...but I told him to wait. A woman I know whose daugther went to that school until she decided to change, told me "do not worrie, others schools in the zone know about it, because children who "had problems there" never had problems in others schools.
I never lived problems at school because i had no seizures, but I know that many teachers "are afraid" of us, my god what a terrible experience for the other children in the class...
I have seen many seizures, I knew a man who came to buy the magazines to my shop that had one per week.
And who can know better than us? doctors in fact never have had a seizure, they know what we explain.
And there are still people that think we are mad or have a mental illnes, I think it is them who have it.

Montse, I can relate exactly to your school's indifference, discrimination and perhaps one of your husband's perfect foul nouns that so accurately describe the bureaucracy in the school system. When I had my son's EEG done, I went to a neurologist who was not associated with our school district's Intermediate Unit. That kept it as objective as possible, in my opinion. Schools are so afraid of law suits. My exclusion from climbing monkey bars and lack of permission to 'swing too high' on school equipment at school was frustrating so say the least. I was always athletic as a kid.
I did witness somebody with a grand mal seizure. At the time, my husband also saw it and he was unfazed. I felt helpless to try and help her knowing I probably could not alter her meds or severity of the seizure. We knew about the seizure disorder, got appropriate medical personnel and explained the seizure disorder to a doctor. I was always wondering afterwards if this person would have gone into the status epilepticus. She was older, did not take meds and had some pretty severe episodes. From my understanding of the disorder, once one seizure starts, a few minor ones can follow it until everything is settled down. I have an excellent relationship with my current neurologist. We finally found the right meds and my seizures are well controlled. You are SO lucky that your teen years had very few problems. Most of the discrimination I experienced at school was from authoritative people. I was denied college prep, fought for it and won, and now have several college degrees. Ironically a school nurse told my mom about vocational rehab programs and they practically paid for my first degree. The system can be beat. You just have to fight it until you win.

[montse]

Thanks to everybody, you are all great.

[brain]

I'm guessing this was the extent of their chemistry class:

http://www.eepybird.com/dcm1.html


and somebody else wrote the research papers....