Stigma and Epilepsy (or any stigma)

Nice poem. How true!

@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

@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

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

@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.

@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

@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

@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

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!