Epilepsy Talk
The Stigma of Epilepsy… | March 5, 2023
The stigma is ancient and it still remains today.
Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.
Until the late 1970s, legislations in the United States also prevented epileptic people from entering public buildings such as restaurants, shopping centers, and theaters. [US Department of Health]
Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.
In most states, having a seizure is technically illegal, and while prosecutions are rare, they do happen.
When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.
EVEN “TWITTER” HAS PUT IN THEIR TWO CENTS.
In a study published in “Epilepsy and Behavior,” Canadian researchers analyzed nearly 11,000 seizure-related “tweets” and deemed 41 percent of the “tweets” as offensive.
The study authors pointed out that the messages on this social networking service could reinforce negative perceptions of the neurological disorder.
Pretty pathetic…
Yet, look at the tradition of epilepsy. It’s the history of stigma. Discrimination. Hostility.
You’re “damaged goods”.
Women have been sterilized, people have been burned at the stake, and many were placed in institutions for the criminally insane.
People with epilepsy have been viewed as degenerate, demonic, or intellectually diminished.
They’ve even be treated as if it’s their fault morally that they have seizures!
Today, the stigma for people with epilepsy is that you are strange, dangerous, weird, and someone to avoid.
Some think people living with epilepsy are contagious and that we all have a psychiatric disability.
For this reason, many people with epilepsy do not disclose it. (You might say, they’re in the closet.) They would rather that no one knows their “secret curse”.
One of the fears is that someone will see you having a seizure. The seizure is most often, frightening.
And the social consequences of epilepsy are often the cause of more suffering than the seizures themselves.
Contemporary western culture has glorified the image of the controlled and independent adult.
The unpredictability of having a seizure, as well as the obvious loss of control during seizures, doesn’t exactly fit this image.
By “failing” to meet these standards, a person’s sense of self-worth is affected.
If you’re disabled, you may as well be toxic. Everyone wants to keep a distance.
And then comes the dreaded moment — a Grand Mal or Tonic-Clonic seizure strikes.
All hell breaks loose. People don’t know what to do. Or they don’t do anything, because they’re scared.
Indifferent. Or excited in some perverse way. “Hey, look at him” — like you’re some sort of side-show freak.
The damage is done. In all ways. Actually, the person who witnesses a seizure can make it worse for the person recovering from the seizure itself.
“There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University.
“The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even.
At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”
“It’s better today,” he said about public perceptions of the disorder. “But even among well-educated people, people don’t like to talk about epilepsy.”
Patricia Gibson, MSSW, ACSW, Associate Professor, Wake Forest University School of Medicine, Winston-Salem, North Carolina, who has been the Director of the Epilepsy Information Service since 1979, looks at it like this:
“Stigma basically just reflects ignorance of the disorder. Stigma continues to be alive and well, I am sorry to report, and it is my opinion that as long as we have human beings, there will probably be stigma.
“I have to say that from my observations, stigma is much reduced in comparison to when I first started working in the field of epilepsy in 1976. I seldom hear stories that can begin to compare with those of years ago.
“However, recently I got a call from an upset mother whose son was not allowed to go to the school prom because ‘he might have a seizure there,’ and from the distraught mother of a 4-year-old who had been expelled from her church-sponsored daycare because ‘we are not equipped to handle epilepsy,’ even though the girl had yet to have a seizure in class!
“These are the kinds of situations we try and correct by providing information and training programs with educational materials.
“My program doesn’t just teach about seizures, or first-aid, but also the importance of emotionally supporting and caring for others.”
The alarming nature of epilepsy and its symptoms urgently calls for attention.
As Pulitzer prize-winning author Jon Meacham states, “Most people with epilepsy are not in a constant state of seizure — they are, rather, in perpetual but quiet danger.”
The battle will truly be won not only when societies all over the world acknowledge and understand the challenges posed by epilepsy, it’s when those with epilepsy no longer need to bear the social stigma of their condition.
Epilepsy needs to be widely acknowledged and epilepsy research needs to be funded, for this condition is too dangerous and too widespread to be ignored any longer.
People with epilepsy need to be supported and understood, just as much as patients of any other neurological disorder.
For in the end, we are all human.
“It is my dream to help people of all ages eradicate the stigma associated with epilepsy. We need a new badge of pride.
“We should not be ashamed of who we are. One way to stop this torment that many live with is to talk about it and not keep it a secret.
“When you keep epilepsy a secret, it is because you feel ashamed and believe it is the mark of disgrace. It is not.” — Joyce Bender, President’s Award Winner
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Resources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200035/
https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.44.s.6.2.x
http://www.nytimes.com/2007/02/20/health/20epil.html?pagewanted=all&_r=0
https://benderconsult.com/stigma-epilepsy/
https://health.usnews.com/health-care/for-better/articles/relieving-the-stigma-of-epilepsy
https://pubmed.ncbi.nlm.nih.gov/12609301/
Tags: Dr. Orrin Devinsky, Epilepsy, ignorance, Pulitzer prize-winning author Jon Meacham, social rejection, stigma, suicide, twitter
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About the author
Phylis Feiner Johnson
I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.
Epilepsy Talk 
My daughter was diagnosed with epilepsy when she was 13 years old. It was a road filled with many, many grand mall seizures. At 25 I asked her neurpsyhologist for a recommendation for a neurologist that could help my daughter. The neurologist was great, my daughter met him and trusted him. He suggested a Vagus Nerve Stimulator. That was 14 years ago. My daughter has not had a seizure since then.
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Comment by gwen Keno — March 5, 2023 @ 11:22 AM
That’s GREAT !!!! as i wonder if her problem was the LEFT or RIGHT side of her brain, that these VNS’s seems to help LEFT side better than the right side. My condition started at 5 months old & 7 months being on the drugs. After 61 years was when I started taking the drug XCOPRI, and of course my neurologist said to me I need to think about my independence more after 60 years, when he thought I was going to get a RNS device, until I asked WHAT DRUG HAVE I NOT TRIED, & he said XCOPRI which I agreed 1st to try before an RNS. Now I am 3 days away since my 16 months of a seizure free life, when my last GRAND MAL happened on 11-08-21. BUT I think back of late 2010, when I started VIMPAT with taking LAMICTAL together for 22 months before then my neurologist said I could go off the drugs, which i said YES YES YES !!!! as I know I would feel better, but only for a very short time before the WORST EVER GRAND MAL HAPPENED with a concussion to be included with the seizure. ALL TO SAY,, for the past 20+ years as a bowler for life, since 6 years old, I’m NEVER selected to go to bowl in tournaments with other bowlers as this past week they were saying SEE YOU SATURDAY loud enough so I heard it,, so this past THURSDAY on league night & shot a 300 GAME with a 223 & 212 games before & after my 300. But that’s nothing really when you have seizures, as it only pisses them off more that they don’t see pass their own noses as what I can do with a bowling ball with their own eyes, to include me with them, but I know they really think I will have a seizure away from the lanes I bowl my leagues which is BS & MORE BS. So my plan still is and always been to bowl a perfect series of 900 for 3 games. I picked bowling over other sports because in school I was never allowed to have that chance to play other sports that I KNOW I WAS GOOD AT, but could never prove that to any coach, who knew so much more than I did about how I felt every day & again that was & still is today BS. All other issues in this article is BULLSEYE targets which I have experience more than a few times in my life, & WHY I KNOW there is a God & a Jesus Christ who has my back, as I will never be that perfect person as only was was & still is in Jesus Christ. So all who think they are so much better than I am, think again.
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Comment by James D — March 5, 2023 @ 2:48 PM
Did my own little analysis of stigma once (https://tackingonthestyx.com/do-bloggers-stigmatize-epilepsy/) and found it to be very alive, but more in the sense of our issues being illegitimate than anything else. My struggle has been that we’d get better medical treatment if it was a ‘legit’ mental illness. That attitude, unfortunately, seems to compound issues.
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Comment by Jeffrey Lee Hatcher — March 5, 2023 @ 6:57 PM
why can’t we have operations, I needed a cataract operation, went begging around every place I could think of, no go, you had to have had no siezures for last 6 months, mine are frequent and uncontrolled, I finally found a private doctor who took me on because I said I’d take more of the Diazapam which seems to control it, l’ve got a very badly damaged tooth that needs to be taken out and my own dentist sent me to a specialist, when she saw epilepsy on my health record she was ‘uncertain’ about it, quizzed me, she had been a hospital nurse but was scared of my type of epilepsy, I tried to bribe her again with the Diazepam so she allowed me an appointment but by the time I left I was so angry at her ignorance, why should I have to overdose on my meds and cancelled it all. I went back to my own dentist who has been very helpful, I’ve never had seizures with her, and asked them to refer me to another surgery but that they must ask if they’ll accept my epilepsy. How can anyone guarantee they won’t have a seizure today
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Comment by Gail Barry — March 6, 2023 @ 3:27 AM
Gail, I don’t understand. I just had dental surgery, cataract surgery and I’m having a knee replacement.
I think it’s the anesthesiologists that are running this sideshow. It’s a CYA thing.
Perhaps this will help (or not):
Epilepsy and Anesthesia https://epilepsytalk.com/2013/08/04/epilepsy-and-anesthesia/
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Comment by Phylis Feiner Johnson — March 6, 2023 @ 10:52 AM
I live in Northern Ireland, with all the terrorism we’ve had no one wanted to come here, and there isn’t much chance of promotion, so we don’t have enough medical staff, people never admit their epilepsy so little is known about it, some of the worst treatment I’ve had is from medical staff who don’t understand my epilepsy, focal awareness, they just think I’m faking it,that I panic very easily when these strange white blobs start pushing me around, my own neuro panicked when he saw me having one of those*weird* seizures and put security guards on me even though I was unconscious, when I know I’ll be in a hospital I bring a note about what happens to me and tell them to leave me alone
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Comment by Gail Barry — March 6, 2023 @ 12:56 PM
😥Ignorance = Abuse. I’m so sorry to hear about your situation, Gail. And we both know, there’s little hope of it getting better.
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Comment by Phylis Feiner Johnson — March 6, 2023 @ 1:00 PM
U know the stigma of epilepsy yet all u do is post what we already know having epilepsy is the disability that no one cares! Why aren’t you in DC fighting for disability rights, research, etc., it is sad that people like yourself do nothing but tell us how bad our life is with epilepsy! Either do something or go away!
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Comment by Glenda Bowen — March 6, 2023 @ 8:50 AM
Glenda, Have you tried talking to your local & state representatives to speak for the victims of epilepsy & demand that your representatives legislate a law protecting the victims of epilepsy from social injustice?
In this forum, we are NOT Doctors, Neurologists, Eptologists nor politicians.
But having to live with epilepsy everyday under the shadows of the next seizure to strike, we are trying to share our experience & learn from each other on how to cope with the neurological disorder, medical hardships & social injustice.
Therefore for some of us, this forum had been the only source of information, education & therapy on how to cope & overcome the everyday struggle with the neurological struggle & social crisis.
Therefore, your positive input focusing on the struggle with coping & overcoming the neurological disorder & social hardships in this forum could be very valuable to those of us who are still trying to map out the remedy to our neurological hardships.
Thank you for sharing your experience.
Gerrie
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Comment by Gerrie — March 12, 2023 @ 8:34 PM
Glenda, there are ambassadors for epilepsy from each Epilepsy Foundation group that go to Washington regularly.
There are legislative petitions. Legal mandates.
Perhaps you should contact your local Epilepsy Foundation and find out how YOU can personally advocate and lobby for epilepsy.
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Comment by Phylis Feiner Johnson — March 6, 2023 @ 10:58 AM