Do you think there is a stigma associated with epilepsy?

[stilldancing_98]

I remember in high school I had a seizure while practicing a for a musical I was in on stage. LOL I fell off the stage. I didn't come back to school for a week . Everybody thought I was dead. But nobody said anything. One of my friends told me 30 years later.There is a stigma with epilepsy.It scares people who don't understand it. I have also had people say "you don't look like you have epilepsy." I should wear my shirts and hats.They say that about my son to. He is delayed to and people say.."He looks normal". Im thinking. Oh shut up. It's Karma. We are here to learn. If somebody is not here to learn about epilepsy. They will learn something else.

 

[epileric]

I have also had people say "you don't look like you have epilepsy."

I've been told that one too, more than once

 

[Shelley]

Frankenstein

What are we supposed to look like, anyway. There are people where I work that have different 'disabilities', but you'd never know it, cuz we all look human. (A clever disguise, I must say.)

 

[alivenwell]

I used to be very self conscious about this, but frankly, one seizure in high school sent me to the school nurse. And, she told my mom about assistance to people with disabilities which paid for my first college degree. I would have expected that info from the guidance counselor. But NO. That one was a lucky shot.

I've become rather feisty over the years. Nobody messes with me.

 

[joey]

I used to be very self conscious about this, but frankly, one seizure in high school sent me to the school nurse. And, she told my mom about assistance to people with disabilities which paid for my first college degree. I would have expected that info from the guidance counselor. But NO. That one was a lucky shot.

I've become rather feisty over the years. Nobody messes with me.

I remember having a seizure in high school that moment changed my life forever and i feel the same anger Nobody messes with me either and i have the scars on my baseball bat to prove it

 

[super]

Everyone has a story to tell.
I remember at aged 15, a teacher telling me upon returning to school after a seizure that "let me me know beforehand when you have one of those things".
This came from the mouth of a master at a very well respected college in my home state, admittedly many years ago.
You never forget such comments which are not intended to be hurtful, but are.
I have been extremely guarded all my life and in some ways lucky. In the main have lived a very normal life, and learnt not to react or tell anyone whom I do not absolutely trust about my epilepsy.

 

[Belinda5000]

I had seizures all through school got in my share of fights in H.schools with girls girls.
I didn't taken anything from anyone and rode the teachers elevators in my last school.
most the kids were ok about my epilepsy.
There just some a few morons.
I fell up and down stairs having seizing before got key elevator.
Belinda:e:onder::rock:

 

[Brian-C]

Sometimes I don't think people mean to be as hurtful as they are when they joke about it or make rude comments while others clearly do. I think most people just have no idea what we go through and they probably wouldn't think it was funny or would be more sympathetic if they only knew. There's nothing you can really tell people that adequately explains the psychological impact of epilepsy.

 

[Shelley]

It's just

something you wouldn't want to wish on your worst enemy. There are still some unfortunate people who will not accept your reassurances, and will try to do things 'for' you, because somehow, 'e' makes you less competent, or intelligent.
Of course there is that other, hateful extreme that will lie, and say you are cursed by god for these seizures. Where are the normal people who are willing to live and let live.

 

[alivenwell]

It seems like some people have to learn the hard way. One of my former arch rival enemies had to take a medical leave from work and be placed on some pretty heavy duty medications, give up driving for a while and have limited mobility. This person never had epilepsy. But, that person was humbled to live a very different lifestyle with physical limitations. We are extremely good friends now.

Cars, and driving them, are a status symbol. Public transportation, as a consequence, is a stigma. The average American household has at least 2 cars. The average vehicle traveling through a traffic jam has one person. If the demand for public transportation would increase, our limited mobility would no longer be a stigma.

We could then focus on more understanding and compassion of epilepsy from others. Until that happens, others will live in their comfort zone until they have something traumatic.

 

[simple.partials]

I have always assumed there is a stigma, and I have been very secretive about the fact that I have E.

A woman I met last year changed my mind about that, though, and I'm working to be more open about it. We worked together and within a few minutes of meeting her, she told me she had E. She had no way of knowing that I did, and I hope to be as matter-fact about mine as she was about hers.

 

[Brian-C]

I have always assumed there is a stigma, and I have been very secretive about the fact that I have E.

A woman I met last year changed my mind about that, though, and I'm working to be more open about it. We worked together and within a few minutes of meeting her, she told me she had E. She had no way of knowing that I did, and I hope to be as matter-fact about mine as she was about hers.

The problem I have is that I have social anxiety that has plagued me all my life from a very young age. Well before I ever had any seizures, I can remember avoiding even the simplest social situations where I would likely be the center of attention or where anything embarrassing could happen. I have never gotten over it. Since I learned I have epilepsy about 20 years ago, it's (progressively) gotten even worse. The more seizures I have, the more I withdraw.

My epilepsy has been mostly well controlled by medication. Amazingly, I've only had two TCs in public. But if I worked somewhere and had a seizure there, I would probably not even be able to force myself to ever go back.

 

[stilldancing_98]

It's all ignorance. If we all understood each others pains. There wouldn't be any stigma. I just teach it to the schools so my son won't have to put up with the same amount of ignorance.But people are people and unless it affects them they really don't care. What is the last thing you learned or studied about that you had no reason to learn it./excuse my writing I've been in the hospital.

 

[simple.partials]

.. if I worked somewhere and had a seizure there, I would probably not even be able to force myself to ever go back.

I understand. I should also clarify that while I do still believe there is a stigma, this woman just convinced me that it's easier for me to deal with that than live in fear that others will abandon me when they learn the truth.

It also helps that although my E is adult-onset, I've learned after many years how to live with it. I feel I'm coming out of a cocoon and am now able to speak about what has been unspeakable.

 

[stilldancing_98]

See, I never worried about that until I got divorced and had a child with epilepsy. But I really see the stigma now.I don't drive, my son gets treated differently at school because of mild retardation. But if I meet a guy and i tell him about my epilepsy, because he wants to pick me up on our first date.I get loaded down with questions.I am sick of epilepsy and what it means to other people. I have accepted the fact my epilepsy is very serious. But I have also realized that I have a little boy with the same thing.Who is not going miss out on joy and love just because somebody else doesnt get it.I'm sorry, I guess I'm just venting a little. LOve you guys.

 

[Star_Mummy]

The thing I hate is when I am pushing Sean in his wheelchair on his 'bad days' (which consists of lots of jerking due to his non convulsive status and lots of drooling) the stares that we get off people. Yes he wears a helmet and a bib on those days but he is still a little boy with feelings. Sometimes I want to get a shirt that says 'I'm epileptic stop staring' for him to wear.
The other thing that bugs me is when we tell people he has severe developmental delays and doesnt understand most things they keep trying to ask him or they then go the complete opposite and talk to him like he is a baby. I had this situation with Santa last week. I told all of them that Sean had special needs, that he couldnt understand direction and couldnt answer there questions and that I wasnt expecting the best photo. The lady taking the photo was shocking and my mum ended up saying something to her. The lady that was getting Sean to sit with Santa and trying to get him to smile was fantastic and then Santa kept asking Sean what he wanted for Christmas and wouldnt let him go (despite me telling him he didnt understand) In the end I snatched Sean away and not so politely I told Santa that he wanted a bike.
Its frustrating. People dont seem to understand the severity of epilepsy and that yes he can look normal and still have neurological problems and the fact that today he may be better then yesterday or he could be worse. It seriously changes every day! I feel like screaming Im not a liar at everyone including family members, friends and doctors. It really gets my goat.

 

[joan]

A few months ago some kids in school started calling my daughter the exorcist cause of her myoclonics. It p*SSED me off to where I thought I was going to have to go to jail for kicking some lil high school butt : ) But my daughter is smarter than me and reminded me of what Ive taught her. The next morning shes off to school and I check her shirt. It said Es need hugs too!! lol I died laughing and realized, I must have done something right : )

Shes a good kid with a healthy self esteem. I hope that doesnt change *

I missed E awareness month this year BUT : ) I am so ready for next year. Her school will spend a week : ) informing others about E Ta da**
IF your school does NOT observe E awareness month, and you want them to? Get in touch with EF and they will help you get info to the school in time for next year : ) I say this November we slam the schools with E awareness. When theres a will, theres a way )

joan*
PS the boy who started the "exorcist" comments had a 3 day inhouse suspension and had to attend a workshopo in school on proper behavior.

 

[joey]

A few months ago some kids in school started calling my daughter the exorcist cause of her myoclonics. It p*SSED me off to where I thought I was going to have to go to jail for kicking some lil high school butt : ) But my daughter is smarter than me and reminded me of what Ive taught her. The next morning shes off to school and I check her shirt. It said Es need hugs too!! lol I died laughing and realized, I must have done something right : )

Shes a good kid with a healthy self esteem. I hope that doesnt change *

I missed E awareness month this year BUT : ) I am so ready for next year. Her school will spend a week : ) informing others about E Ta da**
IF your school does NOT observe E awareness month, and you want them to? Get in touch with EF and they will help you get info to the school in time for next year : ) I say this November we slam the schools with E awareness. When theres a will, theres a way )

joan*
PS the boy who started the "exorcist" comments had a 3 day inhouse suspension and had to attend a workshopo in school on proper behavior.

im glad it worked out for you because damn, i would have felt the same way you did .

 

[Elaine H]

Hi Brian

Welcome to CWE!! I so hope that you get from it what I have over the last 10 months! I was diagnosed with Right Temporal Lobe Epilepsy in 1986, at the tender age of 23, I decided there and then that I wanted to learn as much as I could about it, I like you, have encountered the most horrendous ignorance, especially in the workplace, having lost several jobs over the years. I have just completed a 4 year university course in the study of Epilepsy Care & Management, and I just had my second lot of brain surgery 6 months ago. I'm pleased to say that it seems to have worked! I've been seizure free for a few months now, and I feel like a different person. You must let me know what drugs you take? I was having mainly Complex Partials, with auras/Simple Partials, I only had a few Tonic Clonics over the years, but I've been on Trileptal for a few months now, and along with Keppra, I am a new person. I go out on my own now, I can sleep, I have an appetite, I just feel so much more confident, and hopefully, this secong lot of surgery has helped.

I'm writing a book about all the positive and shitty negative things that have happened over the years, I really hope that in 2009 I can get it finished and published, I so want to help other people not have to go through all the crap and ignorance that you and I have experienced.

Do you know what caused your epilepsy? I was a forceps delivery, and my parent's divorce set my seizures off, as it was quite a stormy split and very stressful! I should think that any questions you may have on this CWE will be answered by someone on here, it really has been a tremendous support to me, especially through this 2nd lot of brain surgery, I'm just glad that my hair has grown back! Typical woman eh?! Anyway, anything you may want to ask me, you ask, I'll be only too glad to help out ok?

I know it's difficult sometimes, but try and keep upbeat and positive, I always think how proud I am of myself for maybe making a difference to people's lives, I so want to help, and I feel good about that, we are special people, and epilepsy is a sign of great intelligence, when you look back at the famous people in history that had the condition, Edward Lear, Charles Dickens, Alexander The Great, to name but a few. We have absolutely nothing to be ashamed of, it's the idiots in this world who should be ashamed.

I would love to hear back from you, please let me know how you are doing if you get the chance, meanwhile, I hope you are ok, and enjoying the Xmas festivities and a good positive 2009!

Best Wishes

Elaine x

 

[joey]

I think a lot of people get confused on what to do or how to act around people who are "special"
When I meet someone who may have a disability or something different I think to my self how would I want to be treated. and I want to be treated as if nothing is wrong with me . but some people don't always feel the same way I do. So I think we have to be more understanding to people out there because they may be trying their best to be polite and someone is always going to not like something about something.
All and all I don't expect people to understand and I don't expect people to go out of their way to be polite because nobody is is perfect and I am a good example of that!