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Stigma and Epilepsy (or any stigma)

Epilepsy & Seizures | Last Active: Aug 23 2:44am | Replies (40)

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@jakedduck1

I wrote this on another E forum. Someone asked a question “What should be talked about more regarding Epilepsy”
I believe ignorance and stigma.

Excellent question wish I had an excellent answer. I agree with the other members. All had good suggestions.
One of the things that upset me the most is the stigma of epilepsy and how much damage and hurt it can do to us.
My first experience was when I was 18 years old (52 years ago). My dad was paralyzed from the neck down by a drunk driver and eventually transfer to Phoenix Arizona. I tried to get a job there and the woman who interviewed me saw that I had epilepsy on the application. She tore my application up, threw it in the garbage and said to me, “we don’t hire cripples.” My friends excepted me just fine but some of their parents didn’t. They forbid their being around me. I was told you belong in a circus. People afraid to get near refusing to help you and allowing you to beat your head against whatever, In my case it is was the bottom stair of the marble staircase I fell down in a mall. Being falsely accused of being mentally ill, drunk, or on drugs, epilepsy is catching. You’re the devil you’re possessed. I thought they locked you people up. The list goes on and on and on and the comments, hate, and discrimination hurt and it's hard to forget.
It wasn’t until Missouri repealed the law in 1980 when people with Epilepsy were free to marry in all 50 states.Even some doctors are ignorant. How many have never been told about Status Epilepticus, S.U.D.E.P. (Sudden Unexpected Death in Epilepsy. I wonder how many people especially children could have been saved if doctors had suggested the possibility of these conditions and recommended antisufication pillows, bed alarms or to sleep with the child. Were you ever told about safety precautions by a doctor or nurse?
When will the ignorance stop.
At least we are not being burned at the stake any longer.
@santosha, are there any particular attitudes or myths that persist in Brazil?
Jake

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Replies to "I wrote this on another E forum. Someone asked a question “What should be talked about..."

Good morning Jake! Sorry to hear of the ignorance and hatred that others shown on you. I didn’t realize this was going on in society. Unfortunately, there is no cure for hatred. Hang in there, I got your back!