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Old 08-06-2010, 05:11 PM
Salsa Salsa is offline
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Default Stigmatization

I got to thinking about the comment about seizures I heard on tv the other day and did some reading up on people's attitudes about epilepsy. Did you know that in many areas of TANZANIA (a country in Africa south of Kenya), epilepsy has such a strong taboo that a person having a seizure will often not be touched by any around them even when in physical danger. Many incidents have been cited such as a person falling into a fire or suffocating simply because of the fear and superstitions of the people witnessing the seizures.

I remember when we lived in Downers Grove (IL) and two twin girls lived at the end of the block. I would see them when riding my bike or playing on the sidewalk, but I never got to know them because their mother wouldn't let them play with me.

Certainly there are other stories to tell...........
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Old 08-07-2010, 12:58 AM
chickenfeet chickenfeet is offline
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i'm not sure if this qualifies, but i ran into a religious fanatic, who insisted my seizures were the work of the devil and tried his damnedest to get me to drop my medications, doctors, family and friends so his church, (cult, rather) could perform a excorcism, and cure me of satan himself

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Old 08-07-2010, 01:24 AM
Tattoo2 Tattoo2 is offline
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Was that recently chickenfeet? We all know that is just plain stupid and is nearly practicing medicine without a license. It is also very evident of ignorance. I would not allow people of that calibre to know any of my personal info. They are not worthy. Couldn't subject myself to that. I will say that for a Master's prepared person who was supposed to be teaching and guiding me in a clinical setting to say, "Well we don't even know if your memory is in there." when I mentioned my surgery and then to decide that he had to give me a much lighter work load based on that is discriminatory. It is allowed to happen due to the stigma epilepsy has and will continue to have because no one gets the name in the publics' faces like other illnesses.That frequent mentioning and reminding the public desensitizes them so that when they do meet one of us, they react with less fear and ignorance. That needs to happen. Tattoo

Last edited by Tattoo2; 08-07-2010 at 01:26 AM. Reason: spell checker quit.
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Old 08-07-2010, 02:07 AM
annie annie is offline
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My family was so ashamed that they never told me. I realize now that teachers and doctors and half the world was sending home notes, but I knew not to tell any one about all the weird stuff that was happening to me.

My brother still does not count me as part of the family.

I make a big point of being up front about it now. Every time I say to someone "I have epilepsy" they tell me about a relative or friend or themselves. One woman once told me that I was the only person in the whole world she had ever told. And she was having GMs.
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Old 08-07-2010, 07:46 AM
Porkette Porkette is offline
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Hi Salsa,

My Uncle worked in Kenya for many yrs. helping the starving people and animals. I learned that they were not educated very well and their gov't. sure doesn't want people around them that are sick with any type of illness or disease.
I look at it here in the U.S.A. and see how bad people with epilepsy get cut down by family, friends, or employers. People in this world need to wake up and realize we are just as good as your average everyday person. My brother to this day still rejects me because of my sz. and my parents pushed me out the door to a boarding school out of state from where I lived for 3 yrs. because they didn't want to deal with it. Years later my father finally came around but my mother still doesn't feel comfortable around me.
Here's wishing all of You Well and May God Bless You!
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Old 08-07-2010, 08:02 AM
jingle jingle is offline
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I developed E in 1990 when I was 46 years old. When I complained to mother about how I was being treated she said that I was "treated badly by everyone because anyone who knew I had epilepsy knew I was retarded.... and I had to just get used to it.

.................................................. .....
Last year my sister send me a note asking if I had read the "I AM JILL'S BRAIN" article in the June 2009 issue of Reader's Digest. Very short article that talked briefly about the man who had severe epilepsy and surgery - 1953 - and what can happen to people who have their hippocampus removed and something even worse - removal of the amygdala. Those people have such faulty memory that they make up things and believe them.
(I had my hippocampus and amygdala removed in 2006) Then she gently asked if I had not remembered to renew my subscription (a gift from her every Christmas) to Reader's Digest when I moved last Dec. ... she would do it for me.
When the weather is bad and streets are solid ice, sister telephones me to beg very gently that I please, please not drive and to call her if I feel like I just have to go somewhere. I have to promise her I won't drive on the ice.

Other sister said she wouldn't eat in public with somebody who had epilepsy ... they could fall on their face in the fettuchini (sp?)

There's more - lots more - but it's very painful.
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Old 08-07-2010, 01:19 PM
LIZARD LIZARD is offline
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I had my first sz as a baby and have been on and off various meds since, but I was just taught to keep my mouth shut about it. When I nearly died from a reaction to Tegretol in college, I basically told everyone who tried to silence me to go to hell--including my mother. We fought daily about it for three years, and I assured her that she wasn't going to win that one. I'd go on, with or without her.

Then I got preg with my daughter and she realized she'd better get with the program. Now we talk openly about it--to each other and with others. Ignorance breeds fear, just as I stated through a character (who has epi) in my novel. Knowledge is power!

LIZARD
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  #8  
Old 08-07-2010, 04:01 PM
Salsa Salsa is offline
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Quote:
Originally Posted by jingle View Post
I developed E in 1990 when I was 46 years old. When I complained to mother about how I was being treated she said that I was "treated badly by everyone because anyone who knew I had epilepsy knew I was retarded.... and I had to just get used to it.

.................................................. .....
Last year my sister send me a note asking if I had read the "I AM JILL'S BRAIN" article in the June 2009 issue of Reader's Digest. Very short article that talked briefly about the man who had severe epilepsy and surgery - 1953 - and what can happen to people who have their hippocampus removed and something even worse - removal of the amygdala. Those people have such faulty memory that they make up things and believe them.
(I had my hippocampus and amygdala removed in 2006) Then she gently asked if I had not remembered to renew my subscription (a gift from her every Christmas) to Reader's Digest when I moved last Dec. ... she would do it for me.
When the weather is bad and streets are solid ice, sister telephones me to beg very gently that I please, please not drive and to call her if I feel like I just have to go somewhere. I have to promise her I won't drive on the ice.

Other sister said she wouldn't eat in public with somebody who had epilepsy ... they could fall on their face in the fettuchini (sp?)

There's more - lots more - but it's very painful.
It must be awful when you do forget things (like everybody does). I'll bet she automatically credits it to the epilepsy.

Tattoo, most of my seizures are at night and I think that my next employer is not going to know ANYTHING (unless it's absolutely necessary). If something happens, then he/she will learn. I don't like people at work knowing personal things like my health. Somehow it makes me less of a person in their eyes.
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Old 08-08-2010, 04:28 AM
Travis from MN Travis from MN is offline
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I rarely have had seizures in public when looking back at all of mine. Never had one in school thankfully. I can't imagine how I would have been treated differently if the students ever saw one. They were a cruel bunch.

When I had one at a coffee house in the cities, I was with an epileptic friend. He tried telling them I will be fine if they give me a few minutes to recover. They called 911 right away. The ambulance FORCED me into the van, and would not allow my friend to accompany me (he walked there!).

After working a music festival for 6 years (not paid!) I was told I should "attend" the festival if I wanted to go, but was asked not to be on the crew that year. Only 2 of the 6 years did I have seizures out there. It did not cause problems for the fest. The one year I came right back from the ER and continued to work as if nothing happened. That included the +20 hour day that had teardown after the fest was over. That made me upset how I was thrown aside. Needless to say I have not been back to the fest.

I wouldn't shout that I had seizures, but if ever asked about my genetic condition (externally visible) I would be happy to let the person asking know about it and my history. My seizures were uncommon, I didn't feel it needed to tell people about that except those close to me.

Once when I had one at a bar. It just so happened I had a nurse on my left! She knew EXACTLY what to do. I recovered quickly and no harm done (I was still on the bar stool!). I then told the staff at the bar I had epilepsy, but it was well controlled. They asked me what they should do if I ever had one! That amazed me. They had no problem serving me. I let them know 911 was not needed unless I was gushing blood, broke a bone, or had one after another. They took it in stride! The acceptance has been uncommon for me (unless by another with seizures).

Sad to say it exists even in the States. Today's young kids seem more accepting than even a couple generations back (generations X, Y, Greatest, and Silent). Must be how the media allows more of seizures to be displayed on the screen and TV. Conditions are talked about more in open then how previous years. It was simply NOT talked about back in the Baby Boom generation and before.

--Travis
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  #10  
Old 08-26-2010, 06:28 PM
Lisamn26 Lisamn26 is offline
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I just can't get over how people can be so ignorant and heartless. I have to say that I had no idea what to do for someone who was having a seizure prior to my husband having them. But why anyone would treat someone badly who has epilepsy just completely baffles me. Its truly horrible!
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