Epilepsy Talk

The Stigma of Epilepsy… | May 5, 2021

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Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.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Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.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

http://www.nytimes.com/2007/02/20/health/20epil.html?pagewanted=all&_r=0

http://www.everydayhealth.com/epilepsy/overcoming-the-stigma-of-epilepsy.aspx

http://benderconsult.com/blog/2012-03/stigma-epilepsy

http://www.medicinenet.com/script/main/art.asp?articlekey=155505

https://health.usnews.com/health-care/for-better/articles/relieving-the-stigma-of-epilepsy


43 Comments »

  1. Phylis, You hit the bullseye on this one! Sadly, you could line up the members of epilepsytalk and we could give you our own heartbreaking true story – but you already knew this. The discrimination happens in public and private institutions, from Amazon (yes, Amazon) to some religious institutions. It’s hard to be a priest and some people think you are possessed, or do nothing, or want to stick a fork down my throat so I “won’t swallow my tongue.” I have even had people ask me why I simply don’t stop having my tonic-clonic seizures since they hurt so much, and then I could return to work. Ask me how I know. You are probably going to get numerous comments on this topic. We talk about it all the time at the Epilepsy Foundation. Thank you for giving us an internet forum to express ourselves in a healthy way. Very Sincerely, George

    Liked by 1 person

    Comment by George Choyce — May 5, 2021 @ 9:53 AM

  2. If anyone should know about the holy aspects of stigma, you should George. “Good Christians” are not “saved”. (Pardon the pun.) No one is safe. The stigma of epilepsy is rampant in all walks of life.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2021 @ 9:57 AM

    • That’s not true. Not all Christian churches believe such nonsense

      Liked by 1 person

      Comment by Jamie Swayze — July 22, 2021 @ 3:51 PM

    • Best article I’ve found I’m educating people

      Liked by 1 person

      Comment by Jamie Swayze — August 8, 2021 @ 3:37 AM

  3. Very well done, Phylis. Thanks.

    I’m wondering, too, whether the average untutored person, witnessing a grand mal seizure for the first time, might not feel traumatized? That is, helpless, overwhelmed, frightened, and somehow threatened. To decrease stigma, we need to address that response through education.

    Liked by 1 person

    Comment by HoDo — May 5, 2021 @ 10:14 AM

    • Absolutely through education. At least what I have found in the Epilepsy Foundation I participate in, the Staff, the Board, and the Volunteers, etc … spend a considerable amount of time in educating people through their ignorance. And the ignorance level is still high. Even in the schools, there are some teachers who think that their students “fake” a seizure to get out of a test. All the while, that student is so stressed that having a seizure just comes – dare I write – naturally. But teachers respond well. Others do respond well once they know. So many will say, “I just never knew.” And then we have ourselves some more advocates out there in the world for us.

      Liked by 1 person

      Comment by George Choyce — May 5, 2021 @ 10:57 AM

      • I have witnessed only one grand mal seizure. It was a Great Dane in the back seat of a VW convertible, the ragtop down. It was an absolutely terrifying sight. Luckily the car was parked in the lot of a veterinarian, who was summoned by the dog’s people.

        Liked by 1 person

        Comment by HoDo — May 5, 2021 @ 11:26 AM

      • George I have even encountered nurses who were clueless. Once in the hospital with MRSA, I had a full-blown seizure. I rang the buzzer and a nurse appeared. She asked me if I was anxious or nervous. Through gritted teeth, I told her I was having a seizure. She nodded her head and left the room.

        Like

        Comment by Phylis Feiner Johnson — May 5, 2021 @ 12:02 PM

  4. HoDo, I agree completely. I think in their heart of hearts, people want to help. They just don’t know how. So they act out of fear and ignorance.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2021 @ 10:17 AM

  5. Reblogged this on Ken's Devotions.

    Like

    Comment by Kenneth — May 5, 2021 @ 11:13 AM

  6. As 16 year old dishwasher, I watched my manager experience a grandmal in the freezer. I rushed to help knowing that I was witnessing someone injured on the floor. Didn’t really know how a grandmal manifest itself – BUT – a co worker did, pulled me away and we pushed a few things out of arm/leg kick reach and waited.
    My manager came around, embarrased to all get out but quite rational. I had a mind full of concern, the woman who at that moment helped me understand seemed relieved. The other employees scrambled.

    a couple years pass and I witness a horrible accident in the desert. As people gathered around the body and the injured, I ran through the crowd, having had CPR class, knew what to look for and do, and began CPR on one the people that did not survive. When I looked around for some help, it became clear to me:

    People are cowards. I know this sounds cynical, but I don’t mean it to be. It’s an observation and it seems timeless to me. Accepting others is a convenience of low stress: a convenience of not feeling compelled to act when patience is called for.

    There are certainly the courageous amonst us or we would never have ventured from trees and plains, discovered fire and forged a technological species. I don’t want to disparage the entire swath of humankind.
    But we have the internet now – everyone has access to all the information their brains can hold, but as a group we are not getting smarter, we just created a bigger soapbox for the loudest, most panic prone to stand and scream from. The internet won’t be responsible for the spread of tolerance; it’s that our species simply hasn’t evolved tools that reliably tamp down fear. Tolerance is not natural… yet.

    I think our best approach, for me anyway, is to be courageous or disinterested (depending) in the face of ignorance. The problem is beneath me when I put it in that perspective. I can’t change others, but I can make me better all the time.

    Liked by 1 person

    Comment by Bill — May 5, 2021 @ 11:27 AM

  7. Bill, I had a somewhat similar experience.

    My friend Mary Ellen and I were approaching the platform at Penn Station in NYC. There was a crowd around a woman. Not a soul was moving. Even though she was dangerously close to falling onto the tracks.

    Mary Ellen and I assessed the situation in a flash, told everyone to move away and screamed for someone to call 911.

    Eons passed and we administered first aid. She not only was in the full throes of a tonic clonic but, she was homeless and afraid that her meager belongs would be taken.

    As luck would have it, two EMTs from Langone Epilepsy Center at NYU (one of the finest facilities in the country) arrived and took over.

    But, I still shutter to think what would have happened to that poor lady if we hadn’t (mistakenly) appeared on the scene.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2021 @ 12:13 PM

  8. I had a traumatic experience with the Shingles Vaccine that brought on severe epileptic side affects. The Dr. wrote me a letter stating that I have been advised against receiving the Covid-19 due to medical reasons.
    Our Church after a year of zoom has just announced their protocol for publicaly opening the church next week and if you don’t have the Covid Vaccine you cannot attend. I told the pastor that I had a Dr.’s Letter and he yelled at me during a Zoom Bible Study class to “STAY HOME”! This adds insult to injury.
    I believe in taking safety measures from masks to social distancing, but this is over the top. What would Jesus do? The man who walked amoung the Lepers. Other churches have opened and do not have this as their stipulation.

    Liked by 1 person

    Comment by Doreen — May 5, 2021 @ 12:14 PM

  9. Speak to George Choyce, above. He is a minister who has been denied preaching opportunities because those in the higher echelons are afraid he might have a seizure on the pulpit.

    Holy, no. Christian, no. Cruel, yes. Ignorant, yes.

    Jesus would be mortified.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2021 @ 12:20 PM

  10. I was 38 when at this job, “” the only employee on the clock”” I see this young teenage boy going into a GRAND MAL seizure. I knew what to do living with seizures for almost 38 years, as I moved everything away from him & kept him at a good 15 foot 360 radius around his body laying on the floor. I did find a cover, that I rolled up to put under his head. After his seizure was over, of course he remembered nothing, as I calmly & kindly got him back to his normal ways after 20 to 30 minutes passed by. It was 1 hour after that when the company nurse came on the property, and I was asked how things were going. I told her what happened like she really cared to begin with, and I was punished 2 days later as I was fired from my job because I did nothing by the book after I told her what I did, which is by the 911 codes of what you may do for someone going into any seizure, not just a grand mal. Later a former co-worker told me that I was unjustly fired, & I COULD get my job back if I fought them, NO WAY as I said to him that HELL would have to freeze before I ever went back there, as they knew too that I had seizures in my own life, after 2 weeks of working at that job, & after starting the 3rd week of my employment was when this boy had his seizure. If any of you were that only employee on the clock, I guess you would ignore the boy in the seizure, that you hope to keep your job. The rest of the employers world is as bad or worse than that. Some WILL give you a job, but not for 40 + hours a week. Even your state JOB TRAINING AGENCIES as what there is in WV have no idea what life is like living with seizures, so they will give you a generous 10 HOUR a week or less working job that has no challenges to it, making chicken feed & low wages at that.

    Liked by 1 person

    Comment by James D — May 5, 2021 @ 12:33 PM

    • James, many won’t employ you at all because of “insurance liabilities”. I lied to get my best job. And I would carefully close the door and hit the floor (luckily I had discernible auras) before the seizure hit.

      One day, the copy machine next to my office went on fire and everyone was evacuated. I was stone cold unconscious on the floor.

      Eventually, everyone returned. A few hours later, I went out to copy a document and asked where the machine was. They looked at my as if I was from Mars. But my secret remained safe.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 5, 2021 @ 12:42 PM

  11. Phylis, Thank you for intermittently reinforcing the facts of what we all have to deal with. In my personal opinion, one of the most touted college football athletes almost lost being a 1st round pick in the recent NFL draft. This is because, prior to the draft, it was learned that he has Epilepsy and the media kept promoting negatives on the subject. I can’t tell you how many times I heard the word “disease” used by callers on the radio I listen to (and likely TV, but I can’t confirm). Thankfully, this kid was picked in the 1st round, for if not, he might have lost millions of dollars as a result of being picked in lower rounds of the draft, or even worse, potentially not being drafted at all. Just another sickening example of how those who have seizures are treated, due to lack of public awareness.

    Liked by 1 person

    Comment by Roy Anthony — May 5, 2021 @ 4:59 PM

  12. It’s not just at any job, but where you enjoy what you like doing. I bowl, and next to the owner of the center where I bowl, I have the most 300 games there, I also have had 3 GRAND MAL seizure there in the 29 years I have been bowling there. So you would think about 11 perfect games would for sure make others think you are worth asking to bowl on a tournament event with other bowlers or on a team in that house. If i did not replace 1 who could not physically bowl any more, I would not be on any team because of 3 GRAND MAL seizures, as 1 of them recently happened on JAN 29th 2021. So that’s 1 every to 9 years that happens there. Oh well life goes on as they say, as 1 can happen there tonight, but i doubt the GRAND MALS will ever happen there as much as a 300 game has happen for me, as I want a 900 SERIES for 3 games, as that keeps me going back to bowl; I also like to hear DREAM ON & DONT LOOK BACK on their music box they have.

    Liked by 1 person

    Comment by James D — May 6, 2021 @ 8:25 AM

  13. BRAVO for you James. And your guts and determination.

    Like

    Comment by Phylis Feiner Johnson — May 6, 2021 @ 8:28 AM

  14. I had Grand Mal Epileptic Seizures during my high school years and till this day. This changed the way I wanted my life to be like such as getting married and having a son to enjoy doing Father and Son stuff together with, possibly joining the one of the military branches to learn a trade or even go to college. But, Epilepsy changed all that since I didn’t want to cause my loved ones to worry about me all the time. Epilepsy changed the course of my life.

    Liked by 1 person

    Comment by Earl B — May 6, 2021 @ 9:30 AM

  15. Experiencing stigma, especially long-term or as neglect or abuse, can be traumatizing. A therapist experienced in treating trauma can be a godsend. I recommend the book, “The Body Keeps Score,” for insights into the neurological mechanisms of trauma, as well as pointers to treatment.

    Liked by 1 person

    Comment by HoDo — May 6, 2021 @ 11:24 AM

    • Basically, abuse releases a cascade of stress hormones which produces a lasting effect on brain signals.

      Experiments at McLean Hospital, for example, show that patients with a history of abuse are twice as likely to show abnormal electrical activity as non-abused people.

      Like

      Comment by Phylis Feiner Johnson — May 6, 2021 @ 1:48 PM

      • And far more likely to experience complex and seemingly unrelated emotional and physical symptoms throughout life.

        Liked by 1 person

        Comment by HoDo — May 6, 2021 @ 2:15 PM

  16. Yep. Thanks for this.

    Liked by 1 person

    Comment by Flower Roberts — May 6, 2021 @ 12:15 PM

  17. Imagine waking up & retaining your consciousness handcuffed to the ambulance & ER hospital bed by the police & the very professional medical team who supposedly came out to your rescue, presuming that you passed out hallucinating from illegal drug overdose for having grand mal seizure in public street, after some good Samaritan called the emergency crew to help you?
    Then, imagine your please to be released from the handcuffs & the hospital being ignored for 24hrs by the very ER physicians who were hired to care for you, until your friend walks up to the hospital, accusing & threatening the ER doctors for “medical malpractice”.
    Thanks to my friend’s persistent strong demand to help me get realised from the handcuffs & the hospital, I wonder if I could had been condemned to mental psychiatric hospital for having a grand mal seizure & encountering negligent medical establishment that day.
    Thanks to the painful experience of that day, having lost confidence in the hospital industry, I started wearing my medical identification card like a badge & necklace, for the whole world to know that “I’m Epileptic & I’m having grand mal seizure”, hoping to avoid going through another nightmare I had been through already.
    So much for a civilized compassionate world, I’ve learned the hard way that all that empty promises to rescue mankind is buried under stigmatized misconceptions of wicked society, taking pleasure at the expense of those who come up with medical hardships.
    Sorry for the bitter words I’m posting here, but the truth had to told for those who can stomach the cruel injustice imposed on human race in need of medical care.
    Thanks to Epilepsy opening my eyes & my mind, the war against the wicked society stigmatized misconceptions must go on for those of us who would want to make this world a better place to live.
    Keep fighting against the wicked society bent on destroying our lives.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — May 6, 2021 @ 3:04 PM

    • You chose your words carefully. “Imagine.” No, I cannot imagine waking up handcuffed to a hospital bed. Although some sure could relate to what you have gone through, most of us cannot. So I won’t be patronizing. The very reason of waking up handcuffed, the very reason of loosing our jobs, the very reason of being picked on in school, and on and on and on it goes are all the very reasons we all have to, like you wrote, “keep fighting.” You’ve found one place of support you can come to is here. I literally pray you have others. Going solo is not the way for any of us to go. You’re right. The world can be a cruel or indifferent place. Yet when some people see what we have to go through, they are horrified and become our advocates. Change is slow, but it is change. Perhaps some can share some of the positive changes they have experienced to encourage the rest of us forward.

      Liked by 1 person

      Comment by George Choyce — May 6, 2021 @ 4:38 PM

      • Yes George, I totally agree with you that this forum had been the most helpful source of support, education, inspiration & encouragement on how to cope with Epilepsy while carrying on with your life, struggling to overcome the medical hardships & social misconceptions & barriers alienating the victims of Epilepsy.
        I’ve learned a whole lot from the experience of ALL members of EpilepsyTalk, more than from the medical or social establishments claiming to represent the well-being of Epilepsy victims.
        Therefore, I appreciate your understanding of the ordeals & the struggle I had been through.
        Thanks to your encouraging support, the struggle against social injustice imposed on victims of Epilepsy must go on to make this world a better place to live.
        No one should ever end up victimized by stigmatized social misconceptions for medical hardships no one asked for neither can control.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — May 6, 2021 @ 11:59 PM

  18. It really ranges from fantastic to frustrating when it comes to humanity’s response to epilepsy. And you can use much stronger words than those. There is – to use Phylis’s word – a “stigma” to epilepsy. For instance, right now I am wearing a gauze wrap on my head, with electrodes on my scalp, attached to a monitoring unit in a fanny pack, sending signals to a computer, and being read by technicians. My neurologist ordered this HOME EEG for six days to hopefully catch some sort of condition that only occurs in my sleep. It could be a seizure; it could be Periodic Limb Movement Disorder. Or both. My neurologist doesn’t want to just throw meds at it but wants to pinpoint what is causing my condition to form a new plan of treatment. I’ll admit it looks strange. When I go out to get the mail, people will stare. But I also sent out a picture and an email to some people whom I trust. Some have epilepsy yet most of them don’t. They know my story of the hell I have been through. They know the stigma. And they responded within a day with phone calls and emails of encouragement. I was encouraged because it is so annoying on this fifth day of the gauze wrap: the itch, the smell, the restlessness, etc … I know that today I will walk around the yard to go get the mail and people will stare. My sense is that they just don’t know what to say or do and they fear. Fear makes some people do some very terrible things. You’ve experienced that firsthand. Others have too. I go back to those emails for encouragement because there is something so “psychological” of a physical condition caused by your brain. I will always have epilepsy. A seizure always has that possibility of getting through. The stigma will always remain; however, we can all do some small things to lessen its’ grip. All of our small things can make a big difference.

    Liked by 1 person

    Comment by George Choyce — May 7, 2021 @ 11:57 AM

    • Having made it this far, surviving the medical difficulties, challenging adversities & social hardships one has never imagined before, the whole journey mounts to being tested by fire, as mining gold ore pouring like firestorm lava from the furnace.
      Therefore, the experience & every inch of the journey to overcome the adversity associated with Epilepsy may had made us more stronger than we had come to recognize it.
      Therefore, while life may never be as the smooth ride again as we use to have it before, it would be helpful to know the hard road to control our seizures & overcome the challenge of social barriers has only made us more strongly determined to continue with our lives, beating down all odds.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — May 7, 2021 @ 6:22 PM

  19. A big difference as you so brilliantly know and try to affect.

    I guess you can take cold comfort in the fact that your doc wants to explore all facets of your illness, before he slaps a label on it and a not-always-appropriate treatment.

    He seems to be one who recognizes and cares about your journey, which is a blessing in itself. I’m sure you will agree.

    Like

    Comment by Phylis Feiner Johnson — May 7, 2021 @ 4:35 PM

  20. This is from Bessel van der Kolk, quoting Paul Fussell on the stigma soldiers face if they try to talk to civilians about their war experiences. It could apply equally to us and our experiences and the stigma we face. By “unspeakable” he means experiences for which we can’t find words.

    “ . . . no one is interested in the bad news they have to report. What listener wants to be torn and shaken when he doesn’t have to be? We have made ‘unspeakable’ mean indescribable: it really means ‘nasty’.”

    Liked by 1 person

    Comment by HoDo — May 7, 2021 @ 4:49 PM

  21. As usual, another thing we can learn from HoDo’s wisdom. Thanks lots. You always have something to open our eyes.

    Like

    Comment by Phylis Feiner Johnson — May 7, 2021 @ 5:29 PM

    • I was just quoting two articulate authorities, no wisdom needed on my part.

      Liked by 1 person

      Comment by HoDo — May 7, 2021 @ 5:48 PM

  22. One of my experiences when sharing the fact that I have epilepsy is the opportunity to simply be present. It happens, in varying degrees, to this one time when the person I was talking with said something very close to “You just don’t look like you have epilepsy.” Oh, I was not happy. Not one bit. It was, however, one of those elusive “teachable moments.” They had been brought up with the understanding that people with epilepsy look different, like a patient in a psychiatric hospital who could not take care themselves. I could fit into one of their negative stereotyped stigmas of what a person with epilepsy looks like when angry or I could be present and calm and have some kind of civilized discussion. The onus was on me. It was a lot of work to remain calm but they came away from the experience more transformed than confused. So the negative stigma of epilepsy was lessened in that one person. Who knows how much more the positive images will spread? There’s only one way to find out.

    Liked by 1 person

    Comment by George Choyce — May 7, 2021 @ 7:01 PM

  23. I had a friend George, who had a lightning bolt scar from surgery on his head.When I not-so-subtly asked him why he didn’t grown his hair over it, he replied: “It’s my badge of honor. When people ask what it is, it gives me an opportunity to tell each one a little bit about epilepsy.”

    Like

    Comment by Phylis Feiner Johnson — May 8, 2021 @ 9:03 AM

    • The issue of the stigma associated with epilepsy is a complex one. Our medical condition, disease, disability or whatever you want to call it, is quite difficult in varying degrees to live with some of the time. (How’s that for trying to cover all the bases?) Right now I’ve got my own stuff to deal with but I made some calls to see how others I know are doing. I will keep their anonymity. They trust me. Their medical conditions are truly heartbreaking: One had neurosurgery at one of the best neurological hospitals in the country – the seizures are gone but his migraines returned with a vengeance. Talk about not fair! The other texted me that he wants to talk. While this is good that he wants to talk, it usually means that what he wants to talk about is bad. So it’s a tough dilemma for us. On one hand, we all have epilepsy; on the other, it needs to be talked about in a variety of settings if we are going to chip away at the stigma associated with it. But then we feel exposed. I would, nevertheless, like to encourage everyone in writing that you have almost an instant credibility to break the stigma of epilepsy with other people who live silently with epilepsy. It gets lonely trying to go it alone without support. I mean how can someone who has not had a seizure have a sense of what that is like. It does beg some questions: how do you talk about epilepsy with others who do not have it? If you were able to talk about epilepsy, what did you talk about? How did it go? I encourage you to share one incident with the group as encouragement for others. I also encourage you to share an incident with the group if it did not go so well as a way to go forward.

      Liked by 1 person

      Comment by George Choyce — May 8, 2021 @ 3:32 PM

      • My friend Charlie (mentioned above), had a botched brain surgery in Florida.

        He actually MOVED to NYC to be near NYU’s famous Langone Epilepsy Center and had surgery by one of the renowned Dr. Orrin Devinsky’s team.

        As Charlie joked, they just followed the dotted lines of the last failed surgery (that lightening bolt scar I was talking about) and the surgery was a stunning success.

        I took him to his quarterly neuro check-ups and one time, his doctor even came out to meet me, wondering why “just” a friend would schlep into NYC from Pennsylvania for a doc’s appointment.

        But we had great fun during those appointments, and turned them into good and memorable times.

        Until cancer struck.

        After five years of surviving brain surgery, Charlie was struck down by pancreatic cancer.

        We all know how that goes. They tell you to “put your affairs in order” and good-night, good-bye.

        Of course, Charlie tried to be brave to the bitter end. But I was not and totally caved in the last time I saw him.

        It’s making my cry, just to talk about him. But his wife gave me some wonderful pictures of him (one is on my bookcase). And she made a pillowcase out of this favorite shirt for me.

        I made a prayer bracelet for her.

        Love lives forever. In one’s heart and in one’s soul.

        Like

        Comment by Phylis Feiner Johnson — May 8, 2021 @ 3:51 PM

  24. One of the ways I have found to reduce the stigma of epilepsy is to get out in public. Easier said than done for many of us since we cannot drive. However, one of the most valuable activities that the Epilepsy Foundation where I am involved does is have weekly “Coffee Conversations”. They are super low pressure events. We have two different independent coffee places where we go to get coffee and/or some sort of small meal on alternating weeks. And then we just talk. Frustrated parents talk about their children with epilepsy. Those of us with epilepsy can talk with one another and swap out resources. It is not intentional, but it literally invites what I’ll kindly call eavesdropping. After all, it is at an open coffee shop setting and not in a closed-door room. Some of the people around us listen in on our conversations, while those who do not wish to be heard will talk softer or set up an appointment with one of the staff. Nevertheless, it was something as simple as getting a cup of coffee that may have nudged the listeners on an immeasurable level to a more informed and perhaps positive opinion of people with epilepsy. I wonder what they were thinking when they left those coffee shops? And I wonder what they said later on?

    Liked by 1 person

    Comment by George Choyce — May 8, 2021 @ 6:10 PM

    • Growing up in a very hard wired conservative society totally immersed & drowned in Biblical times, devoid, deprived, suspicious & negligent of modern day science & scientific medical diagnosis, what I have known about Epilepsy since my childhood was having “seizures” is a demonstration of being “possessed by demons”.
      Therefore, the social taboos, stigmas & misconceptions has already made it too difficult to recognize & accept the neurological disorder that I unexpectedly had come to be stricken by in the middle of my life, which I had been thought to reject & deny for most of my life.
      All of sudden, the rude awakening to face a whole different world opened up out of desperate necessity in a form of my employer’s concern for insurance liability, requiring me to provide medical clarification to carry on with same job I had been doing for decades hiding behind my deep seated secret that I’ve been refusing to face & accept, after my seizures became public, knocking me out twice on the company production line, immidiatly raising the alarm that something is certainly wrong with this particular employee who had been very productive employee for several years.
      Confident to prove that I’m as healthy as a wild horse, I took the offer to see the Nuerologists of Stanford University hospital for MRI & EEG tests, while my activities were being video recorded day & night for week.
      Thanks to Stanford University Epilepsy Center, watching myself on video having two grand mal seizures in a week had finally brought me into NEW reality, that I’m having medical accidents but I’m NOT being “possessed by demons”.
      Breaking the blinding psychological chains that had been imposed by paranoid society was the first victorious step towards the treatment of my epileptic seizures.
      And like you pointed out George, I found out that openly talking about Epilepsy & sharing my experience with my family, friends & fellow Epilepsy victims had been relieving experience I had come to appreciate & learn from.

      Gerrie

      Liked by 1 person

      Comment by Gerrie — May 8, 2021 @ 11:15 PM

      • This issue of the stigma about our medical conditions is an ongoing one. So I wanted to come back to it. (And I called my mom earlier today to wish her a Happy Mother’s Day!) Call it projection but my guess is that there a quite a few others who will read this, have gone through a similar experience, and cannot bring themselves to post about it yet. It might be in your own words, a “desperate necessity,” to come to a point to post a comment. And who knows if “desperate necessity” has something to do with epilepsy and employment? I experienced that stigma firsthand. You did, as well. Certainly there are others who have had that similar kind of experience. Perhaps others have been able to be a part of a medical study from an Epilepsy Center and had a good experience with that because it proved that our condition is medical. It can literally be treated as such. Going for a monthly prescription refill, having neurosurgery, or having some sort of medical procedure done has more acceptance to it than being closed-off to the world of ignorance or superstition or hatred. It gets us out into the medical world of neurologists and pharmacists and neurosurgeons who know that our medical condition is just that – medical. It can reinforce to us that our medical condition is medical and not something more gossip-worthy. We may never be normal – whatever that means – but we can take some comfort in some of the medical establishment. Although I do not post for some of the subjects that Phylis introduces, I personally take tremendous comfort in support groups like this one. I have found though the stigma associated with seizures is still here, somehow it is ever-so-slowly loosing its grip on me. I pray that others will find the stigma associated with their seizures begin to loose its grip on them, as well.

        Liked by 1 person

        Comment by George Choyce — May 9, 2021 @ 6:33 PM


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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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