Epilepsy Talk

The Stigma of Epilepsy | October 12, 2016

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Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.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Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.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

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box on the right, enter your email address and click on “Follow”.

Other articles of interest:

Bullied Because of Epilepsy  https://epilepsytalk.com/2012/09/19/bullied-because-of-epilepsy/

The Isolation of Epilepsy  https://epilepsytalk.com/2010/07/09/the-isolation-of-epilepsy/

Resources:

http://www.epilepsymatters.com/english/lwebehavioural.html

https://epilepsytalk.com/2010/07/09/the-isolation-of-epilepsy/

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://www.medscape.com/viewarticle/725720

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

http://www.epilepsysask.com/the-stigma-of-epilepsy.html

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

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

 


21 Comments »

  1. An interesting review. Incidentally, as a bit of trivia, under the Babylonian code of law if a slave developed epilepsy within three months of the date of purchase the sale became void. We have at least advanced since those days…..in that slavery is not allowed….discrimination against epileptics still occurs though!

    Like

    Comment by Michael — October 12, 2016 @ 12:19 PM

  2. At 27 I tryed to get a job at odd lots, frist they didn,t want me to work there, they were afraid if I had to go to hosp. , that they would get sued. but I did work there any way.

    Liked by 1 person

    Comment by michele metzger — October 12, 2016 @ 12:29 PM

  3. That’s great Michele. Do you work at Odd Lots now?
    How long have you been there?

    Like

    Comment by Phylis Feiner Johnson — October 12, 2016 @ 2:16 PM

  4. Wow. I knew that those kind of laws had existed but I didn’t know that they were finally repealed so recently. Yikes. Great article, Phyllis.

    Like

    Comment by paleobird — October 12, 2016 @ 5:33 PM

  5. Pretty scary stuff, eh? Glad I dodged the bullet of THOSE days!

    Thanks for the compliment!

    Like

    Comment by Phylis Feiner Johnson — October 12, 2016 @ 6:15 PM

    • When you are talking about laws being changed in the 70’s, 80’s, and even the 90’s, it also puts some of the piss poor neurological “care” I received when my seizures first started (in the mid 80’s) in perspective. Those neurologists had all been “educated” under that system and mentality. Now when picking a neuro, I always go for the youngest one available. Age and experience are nice but not THAT freak-show experience. I find the younger ones are more open to alternative ideas.

      Like

      Comment by paleobird — October 16, 2016 @ 6:18 PM

      • I started with a middle age neuro in 1969. Not many options in either case.

        It was Dilantin or Phenobarbital. Not a pretty picture. I “toxed” out on Dilantin.)

        These days are certainly different. More care, different care, different kinds of docs.

        Yes, we have it better today. And I think your advice is good for anyone. (Even us ancient 63 year-olds.)

        A neuro who is up to date and can think out of the box is much more preferable.

        Like

        Comment by Phylis Feiner Johnson — October 17, 2016 @ 8:58 AM

  6. Hi,
    I had my first seizure at age 50 in September 2015, thankfully I was home when it occurred since I am a transit bus operator, after 5 days in the hospital I was discharged with no known cause. A little over 4 months later I had two more Grand mal seizures on the same day within a few hours of each other,back to the hospital I went,still no cause but the neuro said you are now considered to have epilepsy. I was put on meds. I have been off work since September 2015 but am expected to be cleared to return to driving once I go 12 months seizure free. As to the stigma of epilepsy, I have only told one friend and a few family members that I have epilepsy. My work place knows I have had the seizures but they have not addressed my having epilepsy. I don’t feel I should return to driving as I have idiopathic epilepsy and even though I have not had a grand mal in almost 9 months, I am not real thrilled with the prospect of risking putting myself and others in danger if something were to happen to me while driving.

    Liked by 1 person

    Comment by Tracy — October 12, 2016 @ 7:49 PM

  7. Tracy, I agree whole heartedly with your decision not to drive and endanger yourself or others. I think it’s a noble and selfless decision.

    As for your place of employment, could they make “reasonable accommodation” for you and give you a job that does not involve driving?

    I ask, because in your case, the situation is kind of cloudy. You’ve been out of work for some time.

    Have you received short term disability or long term disability?

    For what it’s worth, here’s an article on epilepsy and employment:

    Epilepsy, Employment and the Law

    https://epilepsytalk.com/2016/04/18/epilepsy-employment-and-the-law-2/

    I hope it helps, rather than confusing you.

    Like

    Comment by Phylis Feiner Johnson — October 13, 2016 @ 6:29 AM

    • Phylis, as a union driver there is no cross over into other areas unfortunately. Last night I had a simple partial seizure so my seizures are not under control, back to the dr I go. In light of another partial I just think it would be irresponsible to drive. I was on short term disability for a year and I was just switched to long term disability.
      Thank you for your kind words and the link.

      Like

      Comment by Tracy — October 13, 2016 @ 9:25 AM

  8. Here are a few facts I have seen in over 50 years. Having seizures since 5 months old, & being treated for it for almost 56 years, I’m confident that neurologists and the AAN, CDC & NIH all have ways where we can all be cured of these conditions. They all like it, that we can all be controlled by them, and keep us all in that STIGMA OF LABELS as 50% of the neurologists believe we are not capable to live as people who do not have seizures in their lives. Instead of someone like Dr.Ben Carson being an advocate for ALL of us since he retired, you see he likes a political life instead of doing some better things for all 65 MILLION + with seizures, as that 65 MILLION only counts the people who know they have seizures & what their conditions are. So the drug industries & food industries are making the rules & laws for what our life it to be like, when everything we eat or take are foods & drugs are effecting us daily, and in over 95% of all daily life, our conditions stays the same or gets worse, and the medical / neurological world who all makes the STIGMA not to be better for us, makes 50% of all rules we have to live by with the help from all 50 states, so they both can support one another, and not ever support what we need to have daily & actually be an ADVOCATE for us. What needs to happen is for 65 MILLION people + call out Dr. Ben Carson, & ask him in all the political work he has done in the past few years how it has helped 1 person with seizures have them no more for life. We are just a number to those people, and never be anything else to them, except a rat or guinea pig to experiment with our brain as if the human brain is their toy to play with because they are a neurologists, with that authority to do so by FDA, CDC, NIH & AAN. That will keep happening to us all unless YOU take control of your own brain and allow NOBODY to brainwash you what you need, as far as drugs, how much you need, what you can do or SHOULD DO, and where you may want to go, without being in a state of CAPTIVITY with no jail cells as the BONDAGE & FEARS of seizures one may have, is no AUTHORITIVE RIGHT by others to use to control us in every area we live our life with seizures in it. Really,,, Dr Ben Carson on FNC saying our country is going off the cliff. Seems like his ways of forgetting people with seizures & other brain conditions have been pushed off that cliff by him and many others who works for the AAN & drug industries.

    Like

    Comment by C D — October 13, 2016 @ 8:08 AM

  9. CD, I think you’d enjoy this article:

    Where’s The Funding? Epilepsy As An Orphan

    https://epilepsytalk.com/2016/06/19/wheres-the-funding-epilepsy-as-an-orphan/

    Like

    Comment by Phylis Feiner Johnson — October 13, 2016 @ 8:29 AM

  10. Unfortunately, my neurologist recently retired and I felt the severe loss of this wonderful humanitarian in an overwhelming way. It isn’t everyday that those of us with epilepsy or any other kind of neurological disorder actually find a neurologist that we can really talk to who listens and has compassion. This man was creative in his approach to practicing medicine and thought out of the box. How many neurologists do you know that do that? I haven’t come across too many…it’s very sad. However, I am happy to say that through all of my research to find a new Dr., I found another wonderful humanitarian and learned some fascinating, yet extremely disturbing facts to compliment this great article Phylis has written. My new Dr. is extremely excited to work with challenging patients who have Epilepsy because he WANTS to help them. I’m not overly challenging anymore because I’m stable. I present enough of a challenge remaining stable but I’m thankful I’m stable. One of the first things he told me is that Epilepsy is the SECOND highest cause of deaths….NOT Breast Cancer, think about that. Yes, Breast Cancer is terrible, we all know that, but there has also been tremendous research done and fundraising. However, even my new Dr. had to say there has been next to nothing done in the way of research or fundraising for the the illness that is known as the second highest cause of death to people. I think I stopped breathing when he said that, a possible SUDEP moment ,a slight exaggeration here, but you get the idea. In my case, SUDEP is a reality and just like this article points out many of us do live in a constant state of quiet; I know I do. I choose not to think about seizures but rather to think about living my life as a normal person would. The seizures are in my mind somewhere, they are just in the back part of my mind. Like many of us too, I have been a victim of the stigma and have chosen who and when I talk to about my epilepsy because being too honest has hurt me severely. I believe that education and awareness will help for a better tomorrow but for those who are my age who have to encounter others the same age that’s the problem. As sad as this may sound I don’t see where that stigma will change as much as the possibility may exist for creating the awareness for a lack of a stigma to exist on an upcoming generation by being that driving force behind the education and the creating of that awareness. It’s like everything else, there will always be something new we learn about, to fight for, to educate ourselves about and hopefully to remain open minded about. But at the same time, it seems as if there will still be those painful stigmas to overcome…..if people paid more attention to what they said before they said it stigmas of any kind would cease to exist. I can dream can’t I? Thank you Phylis for writing such a powerful and heartfelt article; this one really hit home….

    Like

    Comment by Janet — October 14, 2016 @ 10:20 PM

  11. Oh Janet, poignant as always.

    There’s an article I think you’ll find of interest:

    Where’s The Funding? Epilepsy As An Orphan

    https://epilepsytalk.com/2016/06/19/wheres-the-funding-epilepsy-as-an-orphan/

    It’s not pretty out there and to live we have to advocate for ourselves. And try to educate.

    But I’m singing to the choir here.

    It’s not just a matter of saying, it’s a matter of doing. And as I’ve learned (epilepsy website or not), that’s a whole lot more difficult.

    Even if what people say to US hurts, hurts, hurts. You have to remember, THEY speak out of ignorance.

    (Ignorance is bliss?)

    Like

    Comment by Phylis Feiner Johnson — October 15, 2016 @ 9:17 AM

    • Thank you Phylis, I will read the article you suggest.

      As an educator, I can say with certainty it isn’t bliss we are facing. I find myself facing ignorance everyday on many levels and I’m one person who tries to educate others about children with epilepsy. I see next to nothing in the buildings I work in about the warning signs, the dangers of seizures, what to do in case of, how to stay hydrated and even worse….the fear on the faces of the teachers when a child they know has a seizure disorder is placed in their classroom. They have no idea how to handle the situation.

      I was in such a classroom last Spring and could say nothing. The child had a nurse and she knew I would be of help to her and I was still forbidden to “interfere”. It was a ridiculously impossible situation driven by fear and a power struggle. At the time my own superiors knew of my own situation with epilepsy because I admitted it. It mattered little. My Special Education background and training mattered little too in this situation and I asked to be removed from the situation. I couldn’t watch anymore as they simply did not know the right approaches to take with this child and I had no voice and for the most part neither did that awesome nurse. The entire situation was politically motivated. Politics does not belong in certain places and unfortunately it’s everywhere.

      I can, with very minute detail, describe all types of behaviors that may or may not be certain types of seizures. These behaviors are so often missed by an untrained person but it’s the one thing I try to get others to see are not the fault of the child. The next step is bringing in the right person for the appropriate help which is often the hardest part. I often feel alone in this part because well, I’m just a teacher and I work 1 to 1 so what am I supposed to know? Really…

      I’d love to come up with a slogan for this somehow and Phylis you would be better at this than me for sure!
      Something like:

      Education creates Awareness…
      Awareness HELPS stop the Stigma which = LOVE

      Like

      Comment by Janet — October 15, 2016 @ 11:01 AM

  12. Sigh. I guess things haven’t changed much since I was a kid. I was treated like a pariah and nobody knew what to do with me. (And that was long, long ago.)

    Seizures or no seizures, I had the BIG “E”!

    But what a horror with the child, the nurse and the administration. I can’t imagine how frustrated you must have felt.

    Yeah, you’re just a “teacher.” Uh huh. What do you know?

    Facebook has lots of slogans: I am a warrior…I have epilepsy, but epilepsy doesn’t have me…etc.

    I like your ideas. Mine simply is education + advocacy = acceptance. Not too poetic.

    P.S. Take a look at at Epilepsy in School

    https://epilepsytalk.com/2013/09/02/epilepsy-in-school/

    Like

    Comment by Phylis Feiner Johnson — October 15, 2016 @ 4:16 PM

  13. Holy cow ! This artical explains a lot of why my mom was so afraid for me. Geezzz !

    Like

    Comment by Bonnie Sutherland — November 8, 2016 @ 4:08 PM

  14. Sad but true, Bonnie… 😦

    Like

    Comment by Phylis Feiner Johnson — November 8, 2016 @ 5:27 PM

  15. In 1990, epilepsy was included in the Americans With Disabilities Act. Me, I’d say that I would confront anyone who tries to exclude me from said jobs/activities with the cold, hard fact that they are in violation with the law and pursue legal action as it is a federal crime to not hire those with epilepsy.

    By the way, I went skydiving and I have epilepsy!

    Sources:
    https://www.eeoc.gov/laws/types/epilepsy.cfm

    https://www.ada.gov/2010_regs.htm

    Like

    Comment by Honda — January 18, 2017 @ 9:03 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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