Stigma and Epilepsy (or any stigma)

Posted by Leonard @jakedduck1, May 11 11:09am

Although this poem was written by someone with Epilepsy it applies to anyone who has suffered the indignity of being stigmatized be it health related or not.
I’ve had Epilepsy for 53 years, 44 years with unrelenting seizures. I’ve been fortunate to not remember many of my thousands of seizures or many of the insulting comments made by ignorant uncaring individuals.
To me the stigma is worse than the condition.

I’ve Epilepsy
What’s that to you
You look at me like I’m not there
In the street strangers stop and stare
I’ve Epilepsy
I ask myself
Do you care?
Life with Epilepsy
It’s unfair
The ache and pain
The bumps and scars
Seizure after seizure
Tiredness
Forgetfulness
To name but a few
I’m glad it’s not happening to you
Please remember
I am a person
With a heart
With feelings too
All I ask is that you love me
For the person I am
Despite my condition
There’s a lot I can do
& if you gave me the love and time
You’d see it for yourself too
So please be gentle
Please be kind
Just because I’ve got epilepsy
I’m still a person
Through and through
I’ve epilepsy
I hope you see now
Me
I’m just like You
So I’ve got epilepsy
So what ???
I’m human
I’m just like You
Jake

Nice poem. How true!

Liked by Leonard

REPLY

@jakedduck1

Thanks for posting the poem. It speaks eloquently of what people with all kinds of stigmatized conditions face. It's hard for me to understand that in this day of unlimited information, there are still those who attach stigma to epilepsy. I remember how horrified and angry I was when I heard a group of women trying to cast the demon of epilepsy out of a friend of mine. I was so embarrassed for her, but she took it gracefully. I hate to think how many times she's had to endure that kind of ignorance and indignity.

Living with a stigma became even more personal to me in 2005, when I had a mental freefall into a really deep, dark hole of depression. A few kind words, a little affirmation, some level of concern, an offer to let me take time for a sabbatical would have meant the world to me. Not one of those things was offered. Instead… I won't be any more specific than that, partly because doing so causes me to relive the humiliation and pain and abandonment. It took more than 5 years to get free from the hole, but I think depression, anxiety, PTSD will always affect my life. What has happened to basic human kindness? The damage to my psyche still comes up in therapy, along with other issues of course. There's no pill that treats that pain brought on by stigma. And, as my pastor says, there's no pill for dumb.

I got myself a new laptop with my Social Security stimulus check, and I'm trying to find my way around it. If I can, I'm going to read the poem to my therapist next week at our Zoom session.

My wife grew up in central California, and while I was in college, my parents moved from New York to California. Dad was a pastor, and my wife's family were members of the church where Dad became pastor. My wife was going to Cal Berkley and I was in college in Missouri. We met during the summer break and were married after we both graduated. A few years later, we moved back to the farm she was raised on, in between jobs, then bought our first home in Merced. That was 1976, and when we moved to Oregon, we kept the Merced house and rented it to friends. In 2004, after UC Merced was up and running, we sold the house with a tidy profit, and rolled the money from the sale of the rental to a house in central Oregon, which we intended to rent out until I retired in 2015. But, surprise! Two years later I had to retire on Psychiatric disability, and we had a home to go to. Rolling a rental to another rental, to avoid capital gains tax, it has to remain a rental for two years before it can become a primary residence. I retired 2 years and 1 month after our purchase. Fortuitous, to say the least.

It's unfortunate that anything carries a stigma. We ought to know better. Has it affected you very much? I wish I could apologize for every time it's happened to you. I know from a religious perspective what stigma people attach to epilepsy, but I don't know much about what goes on outside the church. If you've written about it, I'll look up the messages you've posted and read your story.

If I ever chance to meet you, I'll remember to make plans to eat at a restaurant.

Jim

REPLY

@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

REPLY

Oops, I copied over something and mixed up my post. It’s all out of order but most everything I wrote is there, somewhere.
Jake

REPLY
@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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@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

REPLY
@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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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.

Liked by Leonard

REPLY

@jinhd
Hi Jim,
Small world isn’t it, Modesto is my home base.
My county has 537 confirmed with 23 deaths.
California has 76,354 confirmed cases with 3,821 deaths.
I haven't had a seizure in public in almost 9 years so it's definitely better but still out there. My cousin who lives Mt Shasta is Developmentally Disabled and was walking down the opposite side of the street from where my neighbors lives and I went over and asked what justification she had in calling the police. Both she and her husband are attorneys. She was evasive and never did answer my question and so I tried to explain about stigmas and the harm they do but she didn't seem to be interested. It's people like her who help perpetuate these stigmas. side of the street from where my neighbor's lives and I went over and asked what justification she called in calling the police. Both she and her husband are attorneys. She was evasive and never answered my question. Stigma associated with Mental Health issues are really bad. My cousin who is Developmentally Disabled was hung, had an illicit drug put in his soft drink and other things and ostracized unmercifully. I can't comprehend why kindness, understanding, and compassion is such a difficult concept for everyone to grasp.
Jake

REPLY

@hopeful33250
No I haven’t read it but I may order the book. thank you for bringing it to my attention.
So many people are stigmatized. Various health issues, thin, overweight, short people, those who wear glasses, the way people look, the list is endless and a lot of people suffer and why?
Jake

REPLY
@jakedduck1

@jinhd
Hi Jim,
Small world isn’t it, Modesto is my home base.
My county has 537 confirmed with 23 deaths.
California has 76,354 confirmed cases with 3,821 deaths.
I haven't had a seizure in public in almost 9 years so it's definitely better but still out there. My cousin who lives Mt Shasta is Developmentally Disabled and was walking down the opposite side of the street from where my neighbors lives and I went over and asked what justification she had in calling the police. Both she and her husband are attorneys. She was evasive and never did answer my question and so I tried to explain about stigmas and the harm they do but she didn't seem to be interested. It's people like her who help perpetuate these stigmas. side of the street from where my neighbor's lives and I went over and asked what justification she called in calling the police. Both she and her husband are attorneys. She was evasive and never answered my question. Stigma associated with Mental Health issues are really bad. My cousin who is Developmentally Disabled was hung, had an illicit drug put in his soft drink and other things and ostracized unmercifully. I can't comprehend why kindness, understanding, and compassion is such a difficult concept for everyone to grasp.
Jake

Jump to this post

@jakedduck1 It escapes me, too, Leonard. I think it's connected with our society's pervasive self-centered attitude. And the notion that's almost universally accepted that there's no such thing as truth, and right and wrong.

Jim

REPLY
@jakedduck1

@jinhd
Hi Jim,
Small world isn’t it, Modesto is my home base.
My county has 537 confirmed with 23 deaths.
California has 76,354 confirmed cases with 3,821 deaths.
I haven't had a seizure in public in almost 9 years so it's definitely better but still out there. My cousin who lives Mt Shasta is Developmentally Disabled and was walking down the opposite side of the street from where my neighbors lives and I went over and asked what justification she had in calling the police. Both she and her husband are attorneys. She was evasive and never did answer my question and so I tried to explain about stigmas and the harm they do but she didn't seem to be interested. It's people like her who help perpetuate these stigmas. side of the street from where my neighbor's lives and I went over and asked what justification she called in calling the police. Both she and her husband are attorneys. She was evasive and never answered my question. Stigma associated with Mental Health issues are really bad. My cousin who is Developmentally Disabled was hung, had an illicit drug put in his soft drink and other things and ostracized unmercifully. I can't comprehend why kindness, understanding, and compassion is such a difficult concept for everyone to grasp.
Jake

Jump to this post

I had a seizure in public once. In fact, on the job. I was fired because of it! The stigma was so great where I lived that I couldn't get a volunteer job. Small town people, small minds. They know all your business. Especially since my father was a well known man. I moved from that area 22 years ago to a city. Now I have privacy of my own business (except with the apartment management). I'm afraid to tell people that I have epilepsy, I only say seizures, because of the stigma and fear of rejection. If I tell them they accept me here.

When I was in Giant once they said something about raising money for epilepsy. If you would have done that in public where I lived you would have been put in jail!

REPLY
@lsittll

I had a seizure in public once. In fact, on the job. I was fired because of it! The stigma was so great where I lived that I couldn't get a volunteer job. Small town people, small minds. They know all your business. Especially since my father was a well known man. I moved from that area 22 years ago to a city. Now I have privacy of my own business (except with the apartment management). I'm afraid to tell people that I have epilepsy, I only say seizures, because of the stigma and fear of rejection. If I tell them they accept me here.

When I was in Giant once they said something about raising money for epilepsy. If you would have done that in public where I lived you would have been put in jail!

Jump to this post

I'm glad to know that you found a more accepting community to live in, @lsittll.

Liked by Leonard

REPLY
@lsittll

I had a seizure in public once. In fact, on the job. I was fired because of it! The stigma was so great where I lived that I couldn't get a volunteer job. Small town people, small minds. They know all your business. Especially since my father was a well known man. I moved from that area 22 years ago to a city. Now I have privacy of my own business (except with the apartment management). I'm afraid to tell people that I have epilepsy, I only say seizures, because of the stigma and fear of rejection. If I tell them they accept me here.

When I was in Giant once they said something about raising money for epilepsy. If you would have done that in public where I lived you would have been put in jail!

Jump to this post

@isittll
Good morning,
I'm sorry to hear you had to experience the indignities of stigma. When you were fired was it before enactment of the ADA (American disabilities act) of 1990?
Since it's enactment anyone with a disability can't be fired as long as they were able to execute their required job duties. It also applies to the application process but businesses still find ways to wiggle out of hiring and firing people with Epilepsy. I don’t know what it’s like to be fired from a job but I know what it’s like not to be hired based solely on having epilepsy.
When I applied for a job in 1971 I must have put on my application I have epilepsy. When the lady asked me I said ”yes,” she tore my application in half and said, ”we don't hire cripples.”
It's too bad people must hide an illness for fear of being ostracized but it happens all the time.
I tell people and they can either except it or not. If they choose not to I figure they aren’t worthy of my friendship anyway.
Take care,
Jake

REPLY

@jakedduck1 and others in this discussion group. As I mentioned in an earlier post, I've been reading A Mind Unravelled, written by Kurt Eichenwald, who has epilepsy and I've been horrified to learn about how he was treated by the medical profession early on in his diagnosis. He seemed to have more acceptance by friends than he did the medical profession.

I'm just wondering if any of you had problems with the medical profession wanting you to not admit to anyone you had epilepsy?

Liked by Leonard

REPLY
@hopeful33250

@jakedduck1 and others in this discussion group. As I mentioned in an earlier post, I've been reading A Mind Unravelled, written by Kurt Eichenwald, who has epilepsy and I've been horrified to learn about how he was treated by the medical profession early on in his diagnosis. He seemed to have more acceptance by friends than he did the medical profession.

I'm just wondering if any of you had problems with the medical profession wanting you to not admit to anyone you had epilepsy?

Jump to this post

Yes@hopeful33250. A neurosurgeon asked me what the symptoms of my seizures were like. When I told him my heartbeat raced when I have a seizure he said they were panic attacks. The type of seizures can be mistaken as panic attacks because of the symptoms, but to have a neurosurgeon say they are something like that. That is like saying my seizures are some kind of emotional/mental problem. Where did he get his category medical degree? He is even at the University of Maryland and is supposedly one of the best.

REPLY
@lsittll

Yes@hopeful33250. A neurosurgeon asked me what the symptoms of my seizures were like. When I told him my heartbeat raced when I have a seizure he said they were panic attacks. The type of seizures can be mistaken as panic attacks because of the symptoms, but to have a neurosurgeon say they are something like that. That is like saying my seizures are some kind of emotional/mental problem. Where did he get his category medical degree? He is even at the University of Maryland and is supposedly one of the best.

Jump to this post

@lsittll I am sorry to hear that. How long have you had epilepsy? Do you have a better doctor now?

Liked by Leonard

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