Epilepsy Talk

The Stigma of Epilepsy… | November 1, 2020

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Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.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Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.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.


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, tough, 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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  1. The other day i had a seizure that beat me up. It’s like who needs enemies when one has seizures?

    I can relate with the public, no one wants to see someone having a seizure, it’s pretty traumatizing. The worst part is there is nothing anyone can do to stop it.

    Liked by 1 person

    Comment by Zolt — November 1, 2020 @ 10:07 AM

    • It’s like a black cloud hanging over your head. That, combined with the stigma of fearing what will happen when the lightening strikes, makes one the more fearful and wary.


      Comment by Phylis Feiner Johnson — November 1, 2020 @ 10:31 AM

    • I had never seen what seizures look like before until I was sent to a hospital for diagnosis of my own seizures recorded in video & I had to watch the video.
      Having two consecutive grand mal seizures one after the other, the horrifying episodes were so haunting, it’s hard to believe what I was looking at therefore I kept it secret to myself refusing to accept the neurological disorder I had to learn to live with the hard way.
      Little did I knew, the whole town seen my seizures before me, therefore knew about my “secret” before I can even make it a secret or deny it.
      Therefore, I can understand how difficult & helpless it can be for people who had never seen anyone having seizure before.

      Liked by 1 person

      Comment by Gerrie — November 2, 2020 @ 5:06 PM

  2. This quote of Herbert Spencer seems to lie near the root of stigma: “There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance – that principle is contempt prior to investigation.”

    Liked by 1 person

    Comment by HoDo — November 1, 2020 @ 10:34 AM

  3. Yes…so true…was told as a child; you will always need help, please never marry, have kids, etc (not fair to others). People smile, give their intectualism, etc., Then a seizure happens (and usually they’re gone). This is what hurts. Not diagnosed until adult (found on the floor, right temporal lobe). ***Life is tough, simplicity helps, (Prayer, volunteering, and learning guitar 🙂.).
    Peace to you all.

    Liked by 1 person

    Comment by Robert — November 1, 2020 @ 1:59 PM

    • I was treated like a pariah. My parents wouldn’t even say the “E” word.

      Want to talk about stigma. When stigma starts at the the home, it really stinks.

      But, I agree with you Robert. Keep it simple. And keep your head high.


      Comment by Phylis Feiner Johnson — November 1, 2020 @ 2:15 PM

  4. While I can understand the general public’s ignorance & immediate reaction,
    panic, fear & rejection to the unpredictable traumatic events of Epileptic seizures breeding consequent stigma, I’ve difficulty accepting the justification of the very governments who supposedly working for common good of all the people in general creating laws discriminating the very victims whom the government’s suppose to serve & protect.
    One would hope that the legislators would be more enlightened, understanding & sympathetic to the medical hardships many people have to live with than creating more government sanctioned hardships.
    Finally, it’s good to know that the hatchet is coming down & the days of discriminatory laws are over.

    Liked by 1 person

    Comment by Gerrie — November 1, 2020 @ 4:13 PM

  5. Stigma on the people with epilepsy by the ignorant & arrogant public will never make it easier for any NEW research to have for us, not when the government sets the rules as HOW we are to be treated as something other than human. 20 years ago when I went to the NIH, I was really hoping some NEW trials & tests would be done for me & at the least have some sort of blood chemical tests that related anything in the BBB to determine HOW & WHAT were or was the cause of my seizures. No way could that have happened, as I had the same old same old tests that I had for 40 years & as 20 years passed by NOTHING NEW has ever been a format to test 1st, as teens & younger kids to infants still gets the same treatments & tests as I got in the 1960’s & 70’s. So MORE research needed is a JOKE if it all is going to be the same just MORE PEOPLE included in the same tests, but to have NEW research & trials as to HOW food & drugs toxins & chemicals can CAUSE brain chemistry to go wild, & unstable, no way will that ever be done to say that the FOOD & DRUG industries might be killing people & ALL brain & heart health. Follow the MONEY as they say.

    Liked by 1 person

    Comment by James D — November 1, 2020 @ 4:36 PM

    • You hit the nail on the head. I’ve been dealing with seizures for 20+ years. I am grateful for still being alive. However, I’ve experienced entities who are alive for the sole purpose of providing help to people with seizures, who make no effort to use my experiences and knowledge, as a VOLUNTEER to help others. On a couple epilepsy organization weblinks, where they seek volunteers, I’ve filled in my contact info and never heard from them. I also experienced with a notable medical entity of my intention of writing a book involving epilepsy and asked them to simply be only in the INTRODUCTION page. I never asked for a lot of exposure such as being a co-author. They still refused. I was shocked. I’m 66 years old, so having experiended the above over many years, I now live by the saying: No expectations…..no disappointments.

      Liked by 1 person

      Comment by Roy Anthony — November 3, 2020 @ 8:01 PM

      • You’re helping all these people and some “important” person feels they’re too important to endorse you and your efforts.

        Do I have that right? And people have not taken you up on volunteer offers?

        Well the same thing happened to me. And that’s when Epilepsy Talk was born.

        Out of a purely stubborn determination to help people learn, cope, share and care for one another.

        Perhaps we should remind others that we’re all on the same team. Until people get that through their heads, they’re not going to get anywhere, at all.


        Comment by Phylis Feiner Johnson — November 3, 2020 @ 8:27 PM

  6. More education about all types of epilepsy should be a required class- not just for colleges, but high school as well.

    It is a total misunderstanding why some epileptics are unable to get drivers’ licenses, yet common every-day people who drink until they are drunk and are still allowed to operate vehicles. Drunkers and druggers are more dangerous..

    Liked by 1 person

    Comment by Karen — November 1, 2020 @ 6:04 PM

  7. A short rant.

    What good is government service if it doesn’t serve?
    What good is legislation with discrimination?
    What good is Health & Human Services if they’re not human?

    Why do doctors swear to “do no harm”?
    And how can you have humanity without human kindness?

    End of rant.


    Comment by Phylis Feiner Johnson — November 1, 2020 @ 8:39 PM

    • Phylis, I feel you & I totally understand where you’re coming from when you question the integrity of the establishments who claim to serve public interest.
      And I agree with you there’s a lot of empty promises the oligarchy should account for.
      It certainly going to take a lot of radical changes to eradicate the failure of the old system marketed for public consumption under the banner of “Government by the people for the people”.
      Yes, the days of empty promises will certainly come to an end when the emperor is naked.

      Liked by 1 person

      Comment by Gerrie — November 1, 2020 @ 11:26 PM

    • I join your rant. Maybe it’s not a rant, which implies perhaps a loss of perception.

      Some time ago,I read that some medical schools in, yes, the US, were dispensing with the oath to do no harm, and the rest of it. Haven’t had the nerve to ask any of my doctors.

      Liked by 1 person

      Comment by HoDo — November 2, 2020 @ 7:47 AM

      • Dispensing with the oath to do no harm? Not awfully surprising. But deplorable.

        Where did “ethics” go?


        Comment by Phylis Feiner Johnson — November 2, 2020 @ 9:31 AM

  8. When the UK was in lockdown earlier this year, people were moaning about being cut off from society, work, but it was a great holiday for me, first others were finally experiencing the life they’d forced me into when they run scared at the mention of epilepsy, and I was free at last to walk around outside without having to brace myself for the panic my seizures cause, I’ve been injured as people try to restrain me, stop me wandering off. I got a taxi once after a seizure, as mine are focal I keep some awareness, and didn’t realize my head was bobbing, I’ve had that driver several times since and he never stops going on about how scared he was, what about me??!! You’d think he has PTSD after that

    Liked by 1 person

    Comment by Gail Barry — November 2, 2020 @ 2:04 AM

    • Hi, my thoughts are 100% like yours. I’ve even told others close to me that this lockdown doesn’t affect me at all. I’ve been in lockdown for over 12 years. The only difference being those others should eventually come out of lockdown, but not someone like you and I and others who experience seizures. If the general public only knew. Maybe we should use this lockdown opportunity to start educating them.

      Liked by 1 person

      Comment by Roy Anthony — November 3, 2020 @ 8:08 PM

  9. An interesting point of view about being able to go about without others’ reactionary behavior and ignorant perceptions about you.

    And yes, a payback of sorts. But who thought they would find good in a lockdown?

    You even find the positive in the darkest hours.


    Comment by Phylis Feiner Johnson — November 2, 2020 @ 9:38 AM

  10. Thanks, Phylis, for giving us a rational way to rant – if there is such a thing of rationally ranting. I kept going back to this issue of the stigma of epilepsy in order to respond to your much-needed topic. My sense is that we all have experienced some degree of the stigma I have experienced. As a priest, I have experienced much of my vocation up front in a visible capacity. As I have simply tried to break back into living out my vocation, here are the three lines that I remember quite vividly: 1) “Oh, we know that you have epilepsy but did not know that you could still have seizures.” 2) “You’ve finally got your little problem under control, haven’t you?” 3) “You wouldn’t want your children or grandchildren seeing that now, would you?” It all comes down for me – and maybe others can relate – that the stigma of epilepsy is that I embarrass them. But my very existence, as somewhat of a public figure, gets the word out about epilepsy. Perhaps, just perhaps, this will reduce the stigma of epilepsy just a little for all of us.

    Liked by 1 person

    Comment by George Choyce — November 2, 2020 @ 11:46 AM

    • Reality can be embarrassing — especially when one doesn’t dare to look beyond their own ignorance.

      The injustices done to you are hardly “Godly” in fact, they’re barely human.


      Comment by Phylis Feiner Johnson — November 2, 2020 @ 12:04 PM

    • I believe we might make a significant change to the entire culture if we can introduce and promote rational ranting.

      Liked by 1 person

      Comment by HoDo — November 2, 2020 @ 12:51 PM

    • George,,, I admire your courage to stand up in public & carry on with your devine mission, listening to & knowing about the stigmatized reaction to your seizures/epilepsy.
      Standing out in public for all to see, your brave heart is tearing down the wall of public ignorance of epilepsy & the victims fear of public rejection due to epilepsy.
      It’s pioneers like you who make this world a better place to live,,, KEEP IT UP!

      Liked by 1 person

      Comment by Gerrie — November 2, 2020 @ 3:49 PM

  11. I have to admit, the only grand mal seizure I witnessed horrified me. A VW bug convertible was parked in a lot, the top down, and a Great Dane was having seizure more or less in the back seat, while two people – the owners? – watched at a distance. Eventually, someone fetched a doctor from the adjoining veterinary office. At no time did I think, though, that the poor dog was morally deficient.

    Liked by 1 person

    Comment by HoDo — November 2, 2020 @ 12:17 PM

    • It’s bad enough when people reap the pains of others’ ignorance. But a poor pooch? Helpless for the sheer stupidity of his/her owners?

      They’re not fit to own an animal. (Who knows what they’d do if they had a child with epilepsy!)


      Comment by Phylis Feiner Johnson — November 2, 2020 @ 1:21 PM

  12. It would be interesting to deconstruct the fear people feel while watching a seizure. Is it the fear that comes with confronting something totally outside one’s experience?

    I sense that fear is a surface cover-up. My neurologist, for example, is not afraid of seizures, he’s seen so many. Ignorance (and even curiosity) could underlie fear.

    Education may be the key. Once the word “horrible” is removed, a seizure is just another human action with, perhaps, hiccups at the other, mild end of the spectrum.

    Liked by 1 person

    Comment by HoDo — November 2, 2020 @ 12:30 PM

  13. I have struggled so much with this subject of the stigma of epilepsy. Many of us have had the experience that we think we have our seizures under control and then WHAM – another seizure. Ouch. Very, very few have stayed my advocates. Most simply disappeared. It can be a lonely emotional condition; however, our very medical condition can bring epilepsy out into the public one person at a time. I go back to my belief that our very existence as a person with epilepsy can reduce the stigma of epilepsy.

    Liked by 1 person

    Comment by George Choyce — November 2, 2020 @ 12:34 PM

  14. I had a friend who had brain surgery which resulted in a lightening bolt look on his scalp.

    I once asked him why he didn’t grown his hair in.

    He said “This is my badge of honor. And when anyone asks me about it, I have a chance to talk to them about epilepsy.”

    Charlie was a prince among men. I miss him terribly.


    Comment by Phylis Feiner Johnson — November 2, 2020 @ 1:30 PM

  15. I was diagnosed in 1963. My parents were concerned that I would be sterilized and told me never to tell anyone. My biggest fear throughout most of my life was not dying from a seizure, but people learning that I had epilepsy and isolating me. Now I write books about my experience to inspire others. It should be noted the American with Disabilities Act was amended in 2008 to include people with epilepsy.

    Liked by 1 person

    Comment by Jon Sadler — November 3, 2020 @ 10:23 AM

    • I was raised to be kind to your fellow human beings in unfortunate predicaments & did NOT expect society to be cruel, condemning human beings to punishment for medical hardships the victims did not ask for.
      In fact, I was made to believe visiting the hospital to see & encourage your family members, friends & neighbors was the most honorable gift I can give to help ease the medical hardships my fellow human beings were encountering.
      Never did I expected society to be too cruel to punish the victims of medical hardships with unreasonable injustice.
      Thanks to epilepsy, finding out the crippling chains of society I learned a whole lot more of different lessons than I was made to believe for most of my life.
      Fortunately, the experience made me more determined to beat the unjustified punishment society set to cripple my journey in life.
      Therefore I’m pleased to know you made it through the barriers society erected to castigate epilepsy victims.
      KEEP IT UP! 👍!

      Liked by 1 person

      Comment by Gerrie — November 3, 2020 @ 3:51 PM

  16. Unfortunately sterilization was a real “cure”, until recently. As if to say that you’re worthless and we don’t want any more like you.

    How that must have hurt.

    Yet, despite that, you overcame the odds to emerge a triumphant advocate.

    Hats off to your books, your persistence and your bravery.

    I truly admire you.


    Comment by Phylis Feiner Johnson — November 3, 2020 @ 10:37 AM

  17. Funny, people are now so afraid of being stigmatized that they prefer to walk around mask-less. Wow, wait until they or family gets Covid. Then they might understand the trauma of stigma.

    Liked by 1 person

    Comment by skolly9 — November 4, 2020 @ 12:17 PM

  18. While doing some research on stigma in general, I came across the term, “intersectional stigma.” Its implications are not pretty.

    In America the standard patient is the middle-class middle-aged or younger white male who speaks standard English. (I’m guessing at some of this.) If he gets epilepsy, he has only one count of stigma against him.

    But what if the patient is female? She already has one count of stigma against her which says, for instance, that she is less bright than he, certainly in math, and her raging hormones make her emotionally unstable. This is the intersection of two stigmas. Its results are not additive, but exponential.

    (An example of additive turning into exponential is a friend’s statement about her pets, that “One cat is one cat, two cats are four cats, three cats are nine cats.”)

    Now – if the female patient has a brown skin, she arrives with two stigmas, to which epilepsy adds a layer of complication. If she has an accent different from the person she’s talking to, three layers plus. If she is also depressed – or seen as having a mental illness – four. And so on through economic status, weight, age, ethnicity, etc.

    At each layer of intersection, the doctor becomes less likely to listen, treatment becomes more problematic, outcome worsens.

    So what we are up against is not addressing just the stigma of seizures, but what a colleague refers to as a dog’s breakfast of stigmas. I wish it were not so.

    I would be interested in anyone’s tales of experiencing multiple stigmas. I have witnessed two, both rending, both in the ER, and have experienced a few myself.

    Liked by 1 person

    Comment by HoDo — November 9, 2020 @ 3:36 PM

    • Well there was adolescence. Strike one. “She’s a kid. She’ll never amount to anything.” So skip future planning.

      There was being a female. Strike two. “Who will want to marry her? Will we be stuck with her for good?”

      And there was epilepsy. Strike three. “I understand why you don’t get it, you’ve got other problems. If I was epileptic, I don’t know what I would do.”

      Three strikes and you’re out? Or maybe not enough. After all, I’m a “white American.” (And ooops! Jewish.)


      Comment by Phylis Feiner Johnson — November 9, 2020 @ 5:06 PM

      • Yeah, Jewish will do it, still. Bizarre. And so will Catholic and atheist, though not at the same level. And so will German. The thing is, when you have layers and grief is coming at you, you can never be sure what aspect of your person is being addressed.

        Almost wrote, “at fault.”

        One article said that people with epilepsy are perceived to be morally at fault, or their families are.

        Please see RANT entry for full response.

        Liked by 1 person

        Comment by HoDo — November 9, 2020 @ 5:35 PM

    • Even as we write and read this, intersectionality laws are being discussed and written – for example, regarding refugees in need of medical attention.


      Liked by 1 person

      Comment by HoDo — November 10, 2020 @ 2:31 PM

      • Centuries of old guards & oligarchies inflated ambition imposed to divide & conquer society has been & will continue to live behind stigmatized outlook for society to bear.
        Breaking society into crusts of acceptance or rejection will continue to fuel the drive between tolerance & intolerance for society to overcome the stigmas based in ignorance.
        Educating society to encounter the fault lines will remain the only exit from stigmatized laws crafted to breakdown society.

        Liked by 1 person

        Comment by Gerrie — November 10, 2020 @ 3:44 PM

  19. In the December 2020 issue of Consumer Reports, there’s an article entitled, “How Your Race Can Change Your Medical Care,” race sometimes adding another layer of stigma besides the epilepsy one.

    The author suggests that the patient ask the doctor how her race can affect her treatment. Considering that answers in general are rather thin on the ground, I’m not sure what we might hear back.

    I do know, however, that many drugs – and I seem to remember most drugs used for seizures – are tested on white men, and that few people of other races are used in drug trials. Whether this is a problem – maybe we, the patients, are the ones to say. We can at least initiate the conversation until it becomes a loud chorus.

    Liked by 1 person

    Comment by HoDo — November 13, 2020 @ 5:33 PM

    • Oh boy HoDo, you just hit a sore spot.

      Why do so few people know (or care?) about a woman’s heart attack symptoms? Because no one gave a thought to studying THEM.

      How about other disease symptoms? Medication side-effects? Chemo?

      What about breast cancer progressing into bone cancer and/or brain cancer? How much time is spent on those studies?

      Like the “orphan diseases,” women are orphans in the seek and discovery part of research. They are the invisible many.


      Money walks and bullshit talks.

      Now, do you really want to know how I feel?


      Comment by Phylis Feiner Johnson — November 13, 2020 @ 10:17 PM

      • If you’d like to elaborate on that, I’d be willing to liste. Also to participate in lobbying.

        Liked by 1 person

        Comment by HoDo — November 14, 2020 @ 7:22 AM

      • I’ve had my rant. Women are second class citizens.

        But they’re hardly alone. A somewhat related article:

        Epilepsy Studies: True or False? https://epilepsytalk.com/2020/08/03/epilepsy-studies-true-or-false/


        Comment by Phylis Feiner Johnson — November 14, 2020 @ 10:18 AM

      • Excellent point Phylis!
        Racial injustice & inequality being volatile drama of social relations attracting overwhelming attention, society had been paying little attention to the medical needs of 50% of the population composed of women.
        Therefore, Consumer Reports seem to have committed cardinal sin, ignoring the plight of women in Medicare/Medical crisis.
        Obviously, if we’re going to split the medical needs & social stigma connected to epilepsy into sex & race , we’re going to need more doctors & medical establishments exclusively designated for each race & sex, making the journey to treat epilepsy very difficult hardship for the patient to carry on searching for the right race or sex to facilitate the treatment.
        Therefore, while medical/medicare inequality is certainly intolerable in civilized society, Consumer Reports beating the old drum ain’t certainly remedy to the traditional crisis.

        Liked by 1 person

        Comment by Gerrie — November 14, 2020 @ 1:11 PM

  20. In the UK there was never a ban on marrying an epileptic. An Act of 1937 permitted epilepsy as a reason for annulling a marriage that had already been solemnised and this provision was removed in 1971 (https://www.epilepsy.org.uk/news/features/epilepsy-and-marriage-busting-myth-66112).

    Other places did operate bans – the US example would be linked to eugenics laws that were passed in a number of states, which mandated the forced sterilisation of epileptics. Eugenicists as far back as Ancient Sparta have hated epilepsy and eugenics casts a long shadow on the stigma of the condition. Much of the hatred is still expressed in eugenicist language.

    Your comment about being in the closet is truer than many would acknowledge. Edward Lear (artist and comic verse writer) was a homosexual and had epilepsy. He was also a depressive and it was his epilepsy rather than his sexuality that seems to have caused greater distress. It struck me that the historical experience of epilepsy matches that of homosexuality quite closely but epilepsy remains a condition to be stigmatised and a source of shame.

    Liked by 1 person

    Comment by Aidan Wightman — November 16, 2020 @ 5:11 PM

    • Aidan, Thanks for the correction and input. All good stuff.

      Trivia tidbit: Did you know that Richard Burton drank to hide his epilepsy? He’d rather be known as a drunk than an epileptic.

      Also, an article you might enjoy:

      Epilepsy Hall of Fame https://epilepsytalk.com/2020/04/07/epilepsy-hall-of-fame/

      (And no! I did not get Edward Lear!)


      Comment by Phylis Feiner Johnson — November 16, 2020 @ 9:53 PM

    • While I can understand that centuries old religious dogmas, conservative traditional cultures & strict social chemistry may still have a lot to do with the legitimacy or illegitimacy
      of homosexuality, it’s horrifying to think that the oligarchy would write laws to enforce restrictions on the relationships of people who may have been victims of epilepsy as if Epilepsy is infectious disease or national pandemic like COVID19.
      Sterilizing the people who can function with basic medical needs is tantamount to state sponsored terrorism on law abiding citizens.
      It’s good to know that we came out from that unjustified prosecution & tormenting drama, keeping the oligarchy away from what matters to our lives & social relationships.

      Liked by 1 person

      Comment by Gerrie — November 17, 2020 @ 1:59 PM

  21. I was initially going to write a book of situations and complaints.

    I think the single most difficult problem is the never ending fear of being “found out” and that no one will step in and present effective support in public situations to allow any semblance of normalcy.

    We can not have social status. If we finally attain it, it will be stripped away by even a rumor getting out.

    Epileptics are marginalized in every sector of social and professional life.

    As we all know there are many great people that only survived by being able to hide their “problem”.

    We keep no close friends as they might see “the bottle” with the unusual medication in the medicine cabinet.

    Very few friends last for very long once you are “found out”. Once they know, they treat you as some how mentally deficient. This is at all socio economic levels.

    You will often find that moving is often the only escape until “the next time”.

    I really think the only real solution is companies that create microcosms of workers where no-one can see them, but those inside can see out to continue to be maximally productive with out all of the BS that will be offered them in the form of one kind of help or another.

    I really wish they (those unhindered by seizures) would get out of the way or just fall in line behind so this world might actually turn into something great.

    I have very little sympathy for the other marginalized groups as they are offered worth in at least a category of personal or professional life. People with seizures are simply wished that they would go away.

    I am nearing retirement age. Out of time and patience to hope to have any measurable influence in a world that would wish I didn’t exist, if only they knew.

    Fascinating the millions of dollars of damage and lives lost that my intervention has stopped. A life of secrecy really creates an incredible resentment for those who won’t apply themselves to be able to simply save themselves. Those people get to live an open life in plain sight. If it weren’t for an “unworthy deficient creature” they’d all be gone.

    Waiting for the thank you that will never happen. The opportunity that will never come.

    At least the covid lockdown means I won’t have to deal with them in person as much.

    Liked by 1 person

    Comment by anonymous — December 3, 2020 @ 8:57 PM

    • You should have written (or write) a book. Because you describe us “marginal people” so poignantly.

      We are a reminder of life’s imperfections. Gee. Something might happen to you too. Are the vibes catching?

      Close your eyes. Don’t look. I’ll do the vanishing pill bottle trick.

      Deficient? You think you’re so efficient?

      And so the riddles continue, until you’re out of breath. Or out of sight.

      But they still whisper — either in front of you or behind your back.


      Comment by Phylis Feiner Johnson — December 3, 2020 @ 9:32 PM

  22. I have been reading books and papers on stigma in general, for a project at work. This writing has helped me to step back from the unfairness of what happened to me, and to put my own stigmas into a cultural context.

    It’s like learning the details of epilepsy. Once the concepts and terminology is in place, real action can begin, real planning, real advocacy. Facing my own discriminatory behavior toward myself and toward other people is giving me agency which has been missing.

    Liked by 1 person

    Comment by HoDo — December 4, 2020 @ 11:22 AM

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    About the author

    Phylis Feiner Johnson

    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.

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