Epilepsy Talk

The Stigma of Epilepsy… | January 14, 2018

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Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.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Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.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

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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Resources:

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

http://triplehelixblog.com/2011/01/nervous-system-mysteries-the-social-stigma-surrounding-epilepsy/

 


22 Comments »

  1. First,,, I am not insane or shouting my head off over this issue. I’m speaking the truth & reality of several decades living with seizures all my life. So I ask,, How many years + decades of the money loving BIG PHARMA & some neurologist who always say this NEW drug or a monitored device or gadget,,will be the answer to end or control your seizures as we know them ? How many years have WE heard that since Phenobarbital as an approved drug to take by the AMA or since the 1970’s & the VNS was born to stop seizures ? Since 1980,, Who at the FDA has made any of our lives better by having BETTER drugs to stop or control seizures that are NOT made with ASPARTAME’s, Metals, Food dyes, MSG’s & other chemicals & toxins that EXCITES the brain chemistry which increases GLUTAMATE in the human brain ? That’s what we have though with most to all AED’s today, instead of an AED that could help make more GABA receptors, to help create better & more healthier & relaxed neurons, neurotransmitters & making a calming relaxed brain for all nerve endings & connectors to the human brain. I have never taken any AED that worked that way for my seizure condition over 50 + years. No way can or will ever that BIG PHARMA or the AAN which their neurologists learn from, can care enough to speak OUT FOR US,,because we are their sheep to the slaughter house, and their mice or guinea pigs to tests with our brains, thinking that ”they have the right to mess up our brain for their own learning” & MONEY MAKING SCAMS and yet THEY NEVER pay the price that we pay for later in life & at that present time in our life when a drug or drugs, surgeries or a surgery, or something else ruins our brain for life. So WHEN do these people pay a more painful price that what WE been paying, & even lose their practice of neurology ? and Who has been paying & sacrificing for decades because of seizures ? But WE are penalized because we have seizures, yet NO doctor or drug company EVER gets an OUT OF BUSINESS SIGNS posted on their doors for making our lives in many ways worse over the years & decades. All the issues are in the article as to WHY we still have a stigma or stigmas, and doctors & BIG PHARMA both gets by with no ACCOUNTABILITY or RESPONSIBILITY for what we live with today, after few or many years & decades they have been practicing on us.

    Like

    Comment by C D — January 14, 2018 @ 1:49 PM

    • I nearly died literally because of the ignorance by doctors to the side effects of big pharma drugs,so refreshing to read your comment,there is no money in a well population,is epilepsy on the increase because of what is put in our food (thinking out loud),we as epileptics suffer greatly still 😔

      Like

      Comment by Berenice — January 14, 2018 @ 2:00 PM

      • I think you’re right on two accounts. There’s no money in epilepsy, so why bother? As you said, there’s nothing to be gained in a well population. And as CD says, we’re ALL being destroyed by the chemicals and food we eat.

        Like

        Comment by Phylis Feiner Johnson — January 14, 2018 @ 4:55 PM

    • Because they can. 😦

      Like

      Comment by Phylis Feiner Johnson — January 14, 2018 @ 4:52 PM

  2. I know for sure, that every\one living with seizures for all their life has thought those same thoughts, that I posted above. To say I am ranting or whatever, only proves that you do not understand MY OWN seizure life, as yours may never be like mine or anyone else who have seizures. Still you have thought & ask many WHY ???????’s that always never get any answers, but the drug industries & doctors all live happy forever more & we only are a blimp on their radar, when a neurologists sees us in her or his office. So really start to THINK where on the list of doctors patients & the NUMBER SCALE you are on. Are you on the bottom. middle or near the TOP as a most important patient to your neurologists, as we ALL get told how they care for us when we see them every season or whenever. Tell me why when we all leave after a visit, that we know a seizure may still happen, & they are all to be considered as a successful doctor”s” to see ? I know i am on the BOTTOM of the list. Where do you think you are on their list ? THAT only depends on how much MONEY they will make off of you or your child who is suffering with the seizures.

    Like

    Comment by C D — January 14, 2018 @ 2:03 PM

  3. I don’t consider “rant” to be a pejorative term. So, to add to the rant above, how about the known carcinogen paraben which is in Valproic acid which I took for years. Now I have breast cancer for the second time in ten years. Can I “prove” the causal relationship? No. Does anyone in the Pharma industry care? Definitely not.

    I think the rant about the Pharma industry and Phyllis’ points in the article are connected in that the common denominator is “second class citizen” status for people with epilepsy. We are just not the top priority.

    Like

    Comment by paleobird — January 14, 2018 @ 5:09 PM

  4. tell me WHY is it, that a persons REALITY with the seizure life always gets called a RANT ? So I guess I am to be HAPPY & JOYFUL 24/7 that I have seizures, and never have any real life because of these STIGMAS & some judging of our own, who can not see how some of us can suffer maybe a different way than others, but we ALL are mostly judge the same ways by those who do not have seizures, & some who do have seizures sadly judges us.

    Like

    Comment by C D — January 14, 2018 @ 9:30 PM

    • Quite true. And, by the way, I love your “rants”!

      Like

      Comment by Phylis Feiner Johnson — January 15, 2018 @ 10:42 AM

    • C D
      Why are you surprised at people taking your precise remarks, pointing out the everyday struggle of living with Epilepsy, for “rants”?
      Remember, the people who does NOT live in your shoes have NEVER had to live with your Epilepsy & never had to go through the bitter & painful ordeals you have been going through everyday, for most of your lifetime.

      After all, these are the same kind of people who have been lynching & burning alive victims of epilepsy for being “possessed by demons”, just few decades ago.

      Therefore, your life long experience with Epilepsy is totally irrelevant to them, just like my life with Epilepsy is.

      Now,,,
      – Imagine a Police Officer is standing few inches from you in the very same Public Library you have been going for 30 years & telling you out of the blue ,,, “OK, LET’S GO”, when you are just sitting on the same Public Library table & minding your own business like you have done for three decades.

      – Imagine being totally surprised & shocked by the presence, approach & stern order of the Police Officer & calmly ask “What’s going on?”, to only end up looked at like you have just committed a crime, to only find out later that you just had another PETITE MAL SEIZURE in the public library, just like you had few times before.

      And then, as being escorted out of the Public Library by the Police Officer, without ANY explanation from the Police Officer or the same Public Library you have been attending & paid your tax dollars for all your lifetime was NOT harrish & humiliating enough, now imagine getting a letter from the same COUNTY PUBLIC LIBRARY banning you from using the very County Public Libraries you paid your tax dollars for a lifetime, listing all the dates, events & activities of your RECENT Petite mal seizures for being PUBLIC NUISANCE, instead of medical emergency.

      Ironically,,, none of “your recent seizures in the Public Library” listed in the letter are a threat to Public Safety, requiring for the Police to escort you out of the Library or for the County to ban you from accessing the Public Libraries you paid your taxes for decades.

      I’m positively sure any Lawyer suing the County for discrimination would have a field day taking the County Library “banning letter” to the court, challenging the constitutional validation of the County decision.

      As for the patients of Epilepsy with their priority to control their Seizures, adding another stressful ordeal going through Court litigations, is certainly NOT going to be picnic.
      Therefore, suffering in silence becomes the only option available to survive the seizures & social maltreatment.

      In the end, I thought surviving seizures &
      learning how to live with Epilepsy was going to be the most very difficult journey of my life but thanks to Epilepsy, I’ve come to learn the wickedness & indifference of our “civilized society” is going to be more painful ordeal to accept, embrace & continue to live with Epilepsy & the unpredictable seizures.

      But for those who consider our remarks & sharing our experience with Epilepsy on this forum for being “rants”, I invite them to live in our shoes for a day & see how much they would love to have another seizure & end up in hospital emergency room intensive care unite for a day or try another medication & find out the new prescription’s side effects or try the humiliation of getting escorted by the Police, out of public library for having another Absent Seizure.

      Fortunately, thanks to this forum & thanks to all active members of this forum sharing their experience for others to cope on how to live with Epilepsy, we made it this far against formidable odds & survived Epilepsy & the wrath of “civilized society”.

      Salute to all the people who have learned how to live with epilepsy, inspiring, encouraging & leading many more victims of Epilepsy to carry on with their lives, leading the war against Epilepsy & social stigma.
      THE MARCH MUST GO ON !!!

      Like

      Comment by BahreNegash Eritrea — January 15, 2018 @ 11:26 PM

      • Oh Gerrie, you’ve been through so much hardship and yet you remain realistic and optimistic.

        You’re an inspiration to us all.

        Like

        Comment by Phylis Feiner Johnson — January 16, 2018 @ 9:23 AM

  5. Thank you for what you do Phylis!!

    Like

    Comment by maryleeparker — January 14, 2018 @ 11:45 PM

  6. knew there had been laws in the UK, but thought they’d been repealed years ago, a nurse’s manual mid70’s still told them, stick a spoon in their mouths, I’m in N Ireland and we’re still stuck in the mud, so we’re not getting any of the better approach on the mainland

    Like

    Comment by Gail — January 15, 2018 @ 5:13 AM

    • I guess you need a giant push towards awareness.

      Do you have an Epilepsy Foundation there? If so, do they do anything?

      Our local Epilepsy Foundation goes to schools, municipal offices and hospitals, educating about epilepsy awareness.

      The most effective is the schools, where behaviors and attitudes are formed.

      Like

      Comment by Phylis Feiner Johnson — January 15, 2018 @ 10:53 AM

  7. I’ve been living with epilepsy all of my life

    Like

    Comment by Brenna Anderson — January 15, 2018 @ 1:02 PM

  8. I’ve a condition called frontal lobe epilepsy

    Like

    Comment by Brenna Anderson — January 15, 2018 @ 1:04 PM

    • Frontal Lobe Epilepsy — may produce weakness or inability to use certain muscles, including those that govern speech. Frontal lobe seizures may involve thrashing movements during sleep, also stiffening with the head turned to one side and the arm rising into a brief frozen state. Some seizures may be dramatic and upsetting to others, with screaming, bicycling movements of the legs, running. Treatment is with medication, and, in some cases, surgery.

      Like

      Comment by Phylis Feiner Johnson — January 15, 2018 @ 1:07 PM

  9. CD, you mention only a small part of the big picture. Pharmaceutical companies will sell you their drugs directly for cheap if you prove to them a hardship case, not all, but some. The real problem is the insurance companies. They are the ones who can purchase the drugs for going rates, since they haul in huge amounts of money from the people they insure. Big Pharma just wants a piece of that easy money, by increasing their costs. By doing so, this forces more people to sign up for insurance, since the more people that are insured, the wider the spread to dissolve the costs.

    Personally i never in my life imagined i would be on a drug for the rest of my life. Especially man made. But times have changed and now i have to be on some type of drug for seizure control. Do i have full control, no, but i have better control now then i did without pills. So big pharma is and can be a good thing for most ailments. For me it took 4 or 5 different drug tries before i got to the drug i’m on now. As soon as i felt something wrong with those earlier drugs, i talked to my doc and normally he just upped the dosages, but that just increased the problem as well. Trust your instincts when your body is telling something is not right. Make it right. Once i had to demand to be taken off of a drug, Lamotrigine, since it was causing big problems for me. Where as Gabapentin which i’m now on works wonders for me.

    We are guinea pigs, but remember this is not an exact science, lots of guess work involved. And what might be good for some doesn’t mean it’s good for others.

    Like

    Comment by Zolt — January 16, 2018 @ 6:07 PM

    • That’s why they call it the “practice” of medicine.

      But look at all the pharmacy companies that are colluding with insurance companies, that in itself is scary.

      One buying another and then another buying another. Where will it ever end? Out of our pockets, of course.

      And they call it “medical management”? Pleeeeeeze.

      Like

      Comment by Phylis Feiner Johnson — January 16, 2018 @ 6:40 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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