Do you think there is a stigma associated with epilepsy?

[Belinda5000]

There's still a stigma associated with epilepsy alright.
I have people ask me do I put something in your mouth keep you from swallowing your tongue and u look like nothings wrong with you.
What am I suppose to look like?
Belinda

[Ruth]

Hi Belinda

Yes, people are ignorant. That is the stigma. Just calmey explain what is going on. We do not put anything in our mouth during a seizure. I was taught when I was a girl that we put something in our mouth to keep from swallowing our tongue. I had epilepsy back then. My parents were told to. That was 60 years ago and that is what doctor's taught us. Neurologist's were rare and hard to find. The EEG was new and not accurate.

I do not know about the second part of your answer. I always look like there is something terribly wrong with me. With today's medicine's most of us do not look like we are having a seizure.

The stigma's you are talking about are way from the past that I and everyone else learned about epilepsy. People need to be educated that there is more knowledge about epilepsy.

[Belinda5000]

feast,
I do calmly explain not to put anything in my mouth and that you can't swallow your tongue.
But since I've explained to people move anything sharp out of my way put something under my head I have friend sthat do.
I've never been embarressed t talk about my epilepsy and I do openly and have educated a lot of people.
Belinda

[Freaky]

That would be me, I'm very extroverted and I just tell it like it is, if people have an issue with it then can leave. I have yet to have anybody have an issue with me. If I don't see it as a problem, why should they? Right? Sometimes they are a little thrown off when they see their first seizure, but they get over it.

Hello All....Coming across people like me....Good to C but then bad to know so many ???

[Shelley]

We are here because we found each other through a desire to know more about our condition. The numbers here are few in comparison to the world population of people with epilepsy. This is a safe place. It is the most informative, and not pandering to big pharma, nor to any one treatment.
We have a variety of people with a variety of epilepsy types. It is our home.
Welcome.
Tell us about yourself.

[Ruth]

Hi Belinda,

I know you are not ashamed to talk about your epilepsy. I am glad that you are educating people about the new things that we have learned. The old things are past history now. Maybe you can tell them that these things were from the past and that we have learned a lot of new things. I know you are. So are all of us. The up to date information.

[Belinda5000]

feast,
There are a lot of things I tell people about epilepsy.
I give them a good education and it usually starts with people asking aout my seizures.
I let them know what to do and tell them of the VNS my brain surgery all the other drugs start things off.
I always let them know not everyone controlled by there medication.
Belinda

[Ruth]

Hi Belinda,

That is great!! I do the same things. We are friends and we are alike in telling people about our epilepsy.

I will tell you a true story about my father. It sounds unbelievable, but it is true. This is when there was a closet about epilepsy. You kept the person away from everyone. My father, uncle and 2 aunts were sent to China to be born. They were even given Chinese birth certificates. They stayed in China until they showed no signs of epilepsy. My father was 17 before his father allowed him to come back to the USA. That was a real stigma back then. I wonder how many relatives I have in China. Epilepsy is hereditary in my family.

Everyone else kept their children and adult children away from everyone. They did not want it known that they had a child with epilepsy. It was kept in the closet. My father was born in 1912. At that time it more than a stigma in my eyes. It was cruel.

[Eve]

WHenevert I tell people that I have seizures in my sleep, they always get this "shocked " look on their face . Or they make me feel like some kinda freak.: I often avoid telling people because of that.

[Ruth]

Eve, whenever people get shocked, that is a perfect time to educate them. Most people do not know, or they think it is dangerous, to have seizures in your sleep.

Tell them that they are making you feel this way. Maybe they do not know that they are making you feel that way. This is the perfect time to educate people about having seizures in your sleep.

[McGill]

I agree that thee is a stigma, more associated with fear and lack of knowledge for the first aid for seizures. People panic b/c they don't know what to do. Also, businesses tend to see this as a risk or expense of doing business if an employee has divulged that (s)he has a seizure disorder. I have had this type of discrimination done many times with some people outrightly admitting it.

[stilldancing_98]

Its up to us to educate. Who else is suppose to know the truth. There are alot of things I am ignorant about until I have to face them. Illnesses, things about middle school. Atleast people are asking questions.

[Ruth]

I agree that thee is a stigma, more associated with fear and lack of knowledge for the first aid for seizures. People panic b/c they don't know what to do.

I know I lack a lot of knowledge about cancer and MS. I do not have any fear of them though. It is true I would not know what to do if I was faced about having to help someone with other illnesses and diseases. I would call 911. Ruth

[rewired]

I work in a level 1 trauma center in the ER doing psych stuff. I over heard a neurologist resident tell a parent, that their daughter didn't have a seizure. Because she didn't pee on her self. And This will be a person that is to guide us (the pt's) there the crazy world of epilepsy? Learn all you can and be your own advocate

[McGill]

"Learn all you can and be your own advocate." Truer words were never spoken. There is still a lot of subtle discrimination which occurs daily b/c of this disorder. The people who do the discriminating don't have the moral courage to admit it!

[Elaine H]

How about this then, I have a friend in Scotland, he has photosensitive epilepsy, he has had brain surgery, and still has uncontrolled seizures. He was recently admitted to casualty following a particularly nasty tonic clonic with chest pains, when he was taken into the casualty dpt, as there was no room for him, he had to be taken to another hospital, when he arrived there, he was taken into casualty, where he had a second tonic clonic, his mother overheard two nurses leaning on a desk watching him, in the throes a full blown seizure say that he was "putting it on to get attention!!" It's a good job it wasn't me and my mother there, as she would not have been responsible for her actions!!

But can you believe that in this the 21st Century, how on earth could professional people accuse someone in obvious distress, of putting it on, good God, we all know that it is no fun whatsoever having a seizure of any kind, and I think this needs bringing to the attention of someone here in the UK as soon as possible, what chance do we have of exploding the myth that PWE are all mad if the bloody professionals that are meant to be there to help us don't take epilepsy seriously?!!

[Cint]

Elaine, rewired and everyone,

Let's all print these ridiculous stories and accusations that are posted here, present them to our neurologists, Epilepsy Foundations or organizations, hospitals, ERs, universities, etc. WE need to educate them.

[Cinnabar]

I don't know if anyone is familiar of the television show "House". The caustic wit of a hospital doctor usually always cracking me up...until one show. He didn't want to take on a patient who was seizing because "it just wasn't interesting enough". Take it from there.....
Just venting.

[epileric]

What I find scrary is that many people seeing the attitudes conveyed by a doctor on TV justify their actions & attitudes in real life.

I've seen similar attitudes towards various medical conditions on that show.

[Cinnabar]

I do feel that there is medical "snobbery". These scripts did not just spring on their own!