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Leonard (@jakedduck1)

Stigma and Epilepsy (or any stigma)

Epilepsy & Seizures | Last Active: Jul 1, 2020 | Replies (24)

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@jakedduck1

@jimhd
Hi Jim,
Thank you for replying to my post. The stigma associated with epilepsy is much worse than the seizures themselves. Fortunately I don’t remember that many incidents but out of 13,000+ seizures there have been many ignorant hurtful comments that my friends and parents had were subjected to. If anyone ever made a comment within earshot of my dad it didn’t take them long to regret ever opening their mouth.
The first stigma episode I remember is when I went to apply for a job in Phoenix where my father had just been transferred for rehabilitation of his C5 complete quadriplegia. Apparently I mentioned I had epilepsy to the lady and she tore up my application threw it in the garbage and said to me “we don’t hire cripples.” A man wants told me I should join the circus. Whenever I’d have a seizure in public a crowd usually gathered to watch me flop around like a fish out of water. Interesting how some people get their kicks, I hope they enjoyed the show. Not to mention how many police officers react. Fortunately many officers at the police station where I volunteered saw me have a lot of seizures and I did my best to help educate them as to how to treat someone going through a seizure. Many people with seizures are tased, handcuffed and restrained which is the worst possible thing they could do. I have known of and read about many people who have suffered broken bones because they were being restrained.

@jimhd
Hi Jim,
Thank you for replying to my post. The stigma associated with epilepsy is much worse than the seizures themselves. Fortunately I don’t remember that many incidents but out of 13,000+ seizures there have been many ignorant hurtful comments that my friends and parents had were subjected to. If anyone ever made a comment within earshot of my dad it didn’t take them long to regret ever opening their mouth.
The first stigma episode I remember is when I went to apply for a job in Phoenix where my father had just been transferred for rehabilitation for his C5 complete quadriplegia. Apparently I mentioned I had epilepsy to the lady and she tore up my application threw it in the garbage and said to me “we don’t hire cripples.” That was 49 years ago and it’s as though it happened yesterday. A man once told me I should join the circus. Someone said to my friend I should be locked away from “normal” people. Whenever I’d have a seizure in public a crowd usually gathered to watch me flop around like a fish out of water. Interesting how some people get their kicks, I hope they enjoyed the show.

It doesn’t sound like you’d like me to cook for you. You’re a very wise man. The specialty of the house is cereal and candy but if I get courageousness I might fix a grilled cheese sandwich, probably not though but hope hangs eternal.
You lived less than 40 miles south of me when you lived in Merced.
My niece and her family live in La Center, WA which is 26 miles from Portland. I believe it’s a suburb of Vancouver just across the Columbia river from Portland. I plan on visiting her when this virus calms down or at least when the fear and panic of it calm down. It would be nice if we could meet. I’d enjoy taking you to lunch.
Take care Jim,
Jake

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Replies to "@jimhd Hi Jim, Thank you for replying to my post. The stigma associated with epilepsy is..."

@jakedduck1 I appreciate your openness. I know that I am, and always have been, a sensitive, sometimes over-sensitive, man, which makes me offended for other people's indignities. And, of course, it means that I am hurt perhaps more than an offence warranted.

My mother-in-law was raised in Modesto, and a number of her family members live in Ceres. My parents lived in Atwater, home to Castle Air Force Base. I only lived there during one summer break, and we were married there 49 years ago.

Cereal is my favorite bedtime snack. Our county has had only one person who was tested positive for the corona virus, so we're one of the counties moving to Phase 1 tomorrow, which I think means restaurants opening and my wife and I can get our hair cut finally.

Have you noticed any lessening of the stigma? I know that it's hard to educate some people. I haven't lived all that long with mental health issues, but long enough to have heard and seen people's misconceptions, especially about depression. I admit that my own perception of it did an about face 15 years ago when I figured out why I was feeling the way I was. The fact that it can be an invisible illness some of the time works in my favor in some ways. Especially as it relates to stigma, if I hide my feelings behind a mask, which my first therapist said I've become quite good at.

Jim

Hi @jakedduck1,

While I've not personally known anyone who has had epilepsy, the stigma and difficulties you have spoken about here on Connect have made me think more about the life of a person who has seizures. I just ordered a book from Amazon called A Mind Unravelled, written by Kurt Eichenwald who is an author and writer. The book is about his life with epilepsy and coping mechanisms he developed. While I'm just starting to read the book now, I was wondering if you have read it and what you think about his experiences.

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