Memory Troubles
- Thread starter Elaine H
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Hi Elaine,
Do you think that the issue is the public perception? That people are so poorly education on Epilepsy that they can't understand it. Even people who should. People who work in the field, people who work with people who have Epilepsy, family of people with this disease. Parts of my family, who are suppose to support me regardless are having a hard time with the aphasia and disphasia that have come with my Epilepsy. I'm conversational in three languages, fluent in American Sign Language, attending university... and they still see those parts of the disease when I get stuck and loose words.
How do we, as people who suffer from this disease, change the perception?
How do we educate people?
Do we just live our lives to the best of our ability?
and let that be the example...
-Mary
:e:
Do you think that the issue is the public perception? That people are so poorly education on Epilepsy that they can't understand it. Even people who should. People who work in the field, people who work with people who have Epilepsy, family of people with this disease. Parts of my family, who are suppose to support me regardless are having a hard time with the aphasia and disphasia that have come with my Epilepsy. I'm conversational in three languages, fluent in American Sign Language, attending university... and they still see those parts of the disease when I get stuck and loose words.
How do we, as people who suffer from this disease, change the perception?
How do we educate people?
Do we just live our lives to the best of our ability?
and let that be the example...
-Mary
:e:
Elaine H
New
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Hi Mary The times I've thought about this, and the best way for us to go about it. I really do believe that there is still so much ignorance and prejudice out there in the world, and misunderstanding of our so common condition. The majority of people expect us all to have what are known as Grand Mal seizures, and maybe to be of a slightly lower intelligence (far from it, looking back at historical figures with epilepsy, Dickens, Lear, Byron) because epilepsy often accompanies Cerebral Palsy, Downs Syndrome etc, I think that's why people expect us to look as though we have epilepsy.
Regarding exploding these age old beliefs, we just have to get people talking about it more, I have never ever hidden my epilepsy, and I never will, especially employment wise, why the Hell should I, but, in general, there should be more mention of it on tv, in magazine articles, just everywhere, it just never is, there was one guy in the Paralympics with epilepsy, and I think epilepsy was about the only condition that went unmentioned. I still believe that the general public still see a big link with madness and demonic possession, of course we know there isn't, but I just think the public associate the two, and thankfully that godawful word epileptic is becoming rarely used, and never by the British Medical Association, it just conjures up imagery of some freakish dreamlike character that nightmares are made of, like Lunatic, or Spastic, obviously and thankfully, these words are no longer used either.
I was recently asked to contribute to an article that was done on a young local guy, he had died of Sudep, that was sad enough, but when his friends at college told their parents that he had epilepsy, they wouldn't let him come to their homes for Chrissakes!!! Like he was some kind of Leper, it really does beggar belief, and I am gonna do all I can, not for me, I can handle the looks and comments, but for the kids who will go through it and are going through the prejudice and stigma, and shouldn't be, not in this the 21st Century, educating children at school age would help, teach them what epilepsy, asthma, diabetes are, and how to deal with them, and then they won't be scared by the time they grow up!
I think we just have to start talking and more importantly, keep talking, as you can see when I type, it's like when I talk to people about epilepsy, you just can't shut me the f**k up, c'mon, why don't you guys all do it too, I bet you, everyone you talk to about epilepsy will say they know or have known someone with it too, that is what amazes me, it's so common, but so disgustingly misunderstood! Love to all XX
Regarding exploding these age old beliefs, we just have to get people talking about it more, I have never ever hidden my epilepsy, and I never will, especially employment wise, why the Hell should I, but, in general, there should be more mention of it on tv, in magazine articles, just everywhere, it just never is, there was one guy in the Paralympics with epilepsy, and I think epilepsy was about the only condition that went unmentioned. I still believe that the general public still see a big link with madness and demonic possession, of course we know there isn't, but I just think the public associate the two, and thankfully that godawful word epileptic is becoming rarely used, and never by the British Medical Association, it just conjures up imagery of some freakish dreamlike character that nightmares are made of, like Lunatic, or Spastic, obviously and thankfully, these words are no longer used either.
I was recently asked to contribute to an article that was done on a young local guy, he had died of Sudep, that was sad enough, but when his friends at college told their parents that he had epilepsy, they wouldn't let him come to their homes for Chrissakes!!! Like he was some kind of Leper, it really does beggar belief, and I am gonna do all I can, not for me, I can handle the looks and comments, but for the kids who will go through it and are going through the prejudice and stigma, and shouldn't be, not in this the 21st Century, educating children at school age would help, teach them what epilepsy, asthma, diabetes are, and how to deal with them, and then they won't be scared by the time they grow up!
I think we just have to start talking and more importantly, keep talking, as you can see when I type, it's like when I talk to people about epilepsy, you just can't shut me the f**k up, c'mon, why don't you guys all do it too, I bet you, everyone you talk to about epilepsy will say they know or have known someone with it too, that is what amazes me, it's so common, but so disgustingly misunderstood! Love to all XX
knothing
Stalwart
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I knew 2 people in my life with Epilepsy prior to the discovery of me having Epilepsy. My late uncle had it from childhood and it was hidden from as many people in public as possible. He was able to be normal yet at home treated different and he wanted to be a barber for a living as well. He made that dream happen for a short time then one public seizure later the stigma set in and he was on disability (mid 1960's). He was under control for decades but back then all it took was one grand mal in public. He eventually became schizophrenic and epilepsy was just a footnote in his world.
The other person I knew was was controlled by medications and mentioned lack of sleep being her one problem. She worked part-time and mentioned it was all she could due because anything else would just not be safe. In her case she had a self induced stigma.
Both had control and were just like everyone else. That stigma grabbed hold of both of their lives from early on and never let go. I frequently think of that when talk of stigma comes up.
We ourselves must make sure we crush the stigma (if any) in our minds and tell the world 'F**k you this is me and I am just as perfect as the next person.' Educate people about us personally and then let people know millions have this, we are everywhere, and no different from the rest of humanity. We range from genius to dumba$$ like everyone else.
The other person I knew was was controlled by medications and mentioned lack of sleep being her one problem. She worked part-time and mentioned it was all she could due because anything else would just not be safe. In her case she had a self induced stigma.
Both had control and were just like everyone else. That stigma grabbed hold of both of their lives from early on and never let go. I frequently think of that when talk of stigma comes up.
We ourselves must make sure we crush the stigma (if any) in our minds and tell the world 'F**k you this is me and I am just as perfect as the next person.' Educate people about us personally and then let people know millions have this, we are everywhere, and no different from the rest of humanity. We range from genius to dumba$$ like everyone else.