Epilepsy Talk

The Stigma of Epilepsy | September 17, 2017

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Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.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Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.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

 


34 Comments »

  1. Is it legal for law enforcement to stalk epileptics?

    Like

    Comment by Susan Vander Veer — September 17, 2017 @ 11:29 AM

    • No. But most police forces support their own and turn a blind eye.

      Like

      Comment by Phylis Feiner Johnson — September 17, 2017 @ 11:43 AM

    • Susan,
      Don’t be surprised if the Police Officers take you for a criminal wired in illegal drugs overdose, while you’re having seizures knocked out on the ground.
      Therefore, the “stocking” may begin from the very day the Police saw you having seizures.
      Isn’t it ironic to find out the “Professionals” who are supposedly designated & hired to “protect & serve” you, got more understanding & sympathy for victims of heart attack, stroke, diabetic conclusions & mental disorders than for victims of epileptic seizures?
      Obviously, knowing nothing about Epilepsy & Seizures, it took me a long time to accept my own medical condition.
      Therefore, I do understand the ignorance related to Epilepsy.
      Having learned the hard lessons of Epileptic seizures, I never imagined myself being taken for a criminal while I’m knocked out having grand mal seizures.
      It’s time for the EPILEPSY COMMUNITY to fight back the wicked society & the GESTAPOS tormenting victims of epileptic seizures.

      Like

      Comment by Gerrie — September 17, 2017 @ 11:09 PM

      • Susan, listen to Gerrie. This is a person who speaks from true (unforgivable) experience. From being stalked, to being shackled to a hospital bed for seizures, it’s a travesty.

        Like

        Comment by Phylis Feiner Johnson — September 18, 2017 @ 8:16 AM

  2. I never realized there had been such extensive laws and prohibitions against epileptics. Unfortunately I speculate many such laws may still exist in other countries.

    Around the world the stigma, and treatment, of epilepsy remains a serious problem.

    One of the main objectives in the 1997 WHO (World Health Organization) Global Campaign Against Epilepsy: Out of the Shadows, was to educate and raise public awareness about the illness.
    http://www.who.int/mental_health/management/globalepilepsycampaign/en/

    Handicap International, a French NGO (Non-Government Organization undertook a project dealing with the high level of epilepsy brought on the Rwanda genocide.
    http://www.hiproweb.org/uploads/tx_hidrtdocs/HANDICAP_International_SD-LL-04MAJ_light.pdf

    Like

    Comment by philamisan — September 17, 2017 @ 1:20 PM

  3. I’ve been out of touch with the Forum for quite a while as I have been rather ill but I am back in reasonable form again so I wanted to comment here. I try to make a point of bringing the fact that I have epilepsy into “the open” whenever possible and natural. I refuse to make a secret of it – apart from anything else, if I have a seizure and people round about me don’t know, they can’t be much help to me! Also, I want them to know that we “epileptics” don’t actually look “strange”!

    Like

    Comment by Margaret — September 17, 2017 @ 1:58 PM

    • Welcome back, I’m glad you’re feeling better, Margaret.

      You know, the thing that bothers me is that epilepsy first aid is so easy.

      And I do believe that, in their heart of hearts, people want to help.

      But with suspicions and ignorance, they can’t do anything, except flee from the situation.

      Like

      Comment by Phylis Feiner Johnson — September 17, 2017 @ 2:02 PM

  4. I started having seizures in my later adult years and unfortunately at my last job my boss found out and told me I can no longer work for her even though I was doing my job appropriately. My husband found out that most emergency room personnel do not know how to care for a person having seizures. I thank God everyday for my husband who has kept me alive many times since society including healthcare personnel panic. I’m a retired nurse and I hope someday soon I will have the opportunity to educate others about caring for an epileptic,which really is easy, by just protecting that person from harm….

    Like

    Comment by Deborah Harley — September 17, 2017 @ 8:56 PM

    • First of all, your first firing was illegal.

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

      Second, it’s pretty sad when your husband knows more than the ER personnel. But sadly, that’s often how it is.

      Epilepsy education is sadly lacking, even among nurses and emergency personnel.

      And you’re right, protecting others from harm is so easy. If people know HOW.

      If only you had the chance, I’m sure you’d make a terrific advocate and educator.

      Like

      Comment by Phylis Feiner Johnson — September 18, 2017 @ 8:11 AM

  5. Phylis, thank you for your “real world” epilepsy website. Your insight into the stigma of seizures is right on and not hypothetical. I will spare all of the details, but I resigned from a position in order to keep my medical benefits. My seizures were a source of significant embarrassment to my employer. I cound not even volunteer in other places due to the fact that my seizures were not under control. My seizures were the tonic-clonic category. So in order to cope with them, I went through four neurosurgeries and endless rounds of anti-seizure medication combinations. This is my birthday. It has given me another chance to reflect on the truth that I am still alive after all that epilepsy has put those who love me and me through for these past eight years. Thank you for bringing up such a sensitive issue and for giving your readers a chance to respond. George

    Liked by 1 person

    Comment by George Choyce — September 17, 2017 @ 9:47 PM

    • Happy birthday, George. It sounds like you’ve been through alot, so I understand the importance of this birthday and all the ones to come.

      Like

      Comment by Phylis Feiner Johnson — September 18, 2017 @ 8:13 AM

  6. try it over here in N Ireland, I’m sure you’ve heard of the IRA and all the violence, when it syarted 40yrs ago there was a “braain Drain”, people with good qualifications left for better climes and no one’s come back, so we’re short on neurologists, new ideas, new diagnostic machines and esp knowledge and awareness of epilepsy. I’m still treated like a Victorian loony

    Like

    Comment by Gail — September 18, 2017 @ 9:13 AM

    • What a travesty. But when the talent and resources leave, so does the knowledge, leading to even more discrimination.

      Like

      Comment by Phylis Feiner Johnson — September 18, 2017 @ 9:21 AM

  7. We all want to be normal and live like normal people, so the less people know we have it, the more normal we may feel. To be not normal can be a sign of weakness that the strong may pray on. The less i think of seizures, the more normal i feel. Whereby the less chance i would bring it up in small talk with someone. Just because i have a seizures once in awhile does not mean I’ve lost any of my ability to reason and make logical conclusions, like i did before my seizures. Now when i had my baseball size tumor removed, did that tumor make me less smarter than i was before it. It would be quite interested to see how i would have turned out in life if i did not have the tumor. Would i be as successful or way more?

    I thought Jon’s statement was deep,”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.””

    Our lives are in an endless state of a quiet danger. Just yesterday i traveled like 300 miles alone to and back from Sacramento. For some reason the thought of what if a grand mall should happen while driving, kept entering my mind. It’s happened before in rush hour traffic 7 yrs ago. Luckily no one was hurt. Our lives are in danger due to Epilepsy and others can also be affected by it.

    Normal people’s lives are already complicated enough and to throw in epilepsy brings on a new dimension of complications in one’s life. The 5th dimension. Which by itself seems like an extra 150lbs of weight on one’s shoulders that one has to carry that the normal person does not have to. Sure it may make us stronger, if we survive or it may make us want to throw in the towel and just give up.

    The stigma will remain, since like you said it’s embedded in our history and of our fear of the unknown. The unknown of what happens when one’s electrical circuit in the brain goes haywire? It’s not something one comes across daily in one’s lives. In the days of past the ruling forces would demonize it by associating it with the forces of evil. From the looks of it, it’s plausable, the person seizing having no control must be possessed. It’s negative forces, since when one sees it, they do not come away with happy heavenly feelings. Luckily science has proven these theories wrong, but still doesn’t’ change the fact that when one sees seizures take place people still do not go away with a happy heavenly feeling afterwards. Through truths and logical thinking man will eventually come to the correct conclusions. Hopefully!!

    Like

    Comment by Zolt — September 20, 2017 @ 7:49 PM

    • I don’t have tons of confidence about the truths and logical thinking, but I do believe in the relevance of the definition of “normal”.

      What makes us normal or abnormal? Who sees? Who judges? Who knows? Who cares?

      It’s all part of the stealth of epilepsy, “the perpetual constant danger”.

      Like you said Zolt, “It’s negative forces, since when one sees it, they do not come away with happy heavenly feelings.”

      Thus the fear. And the stigma.

      And round and round it goes. 😦

      Like

      Comment by Phylis Feiner Johnson — September 20, 2017 @ 9:19 PM

  8. It is ridiculous that there are any stigmas attached to Epilepsy. People with Epilepsy cannot be faulted for having that condition.

    Like

    Comment by Jeffrey Liakos — September 21, 2017 @ 1:59 PM

  9. On key, I hope?

    Like

    Comment by Jeffrey Liakos — September 21, 2017 @ 5:57 PM

  10. I’m thinking of relocating to Arizona and wondering if anyone knows of a way to check for outdated laws against epileptics on the books. Also, is there anything I should check for in community HOA law and their CC&Rs that might discriminate against epileptics? Thank you all for your help!

    Like

    Comment by Susan Vander Veer — September 22, 2017 @ 9:54 AM

  11. Hi, Phyllis. Sorry for the delay in this. As the mom of a 22 year old woman with refractory epilepsy, I feel compelled to comment/question. There is no doubt in my mind about the accuracy of your article. But, recent Medicaid changes render the facilities who deal best with the most refractory of individuals inaccessible to those who need them…..particularly if they are out of state. It is indeed a difficult disorder at its worst and, IMHO, should have a more appropriate set of rules for its management. I guess there aren’t enough moms screaming about it. These days, autism has it’s own Medicaid waiver…..not so for Epilepsy, though…..which is a far more medically complex disorder.

    Like

    Comment by franboc — September 24, 2017 @ 12:16 PM

  12. I’m not sure I understand your question on the testing, Phyllis. Obviously, an epilepsy dx is not just based on the EEG….which can also be skewed in autism patients. While the autism community has a greater prevalence of seizures than the general population, it is clearly a separate manifestation. In my daughter’s case, the opposite has become true: her (now) autistic tendencies are secondary to refractory epilepsy. We do not really have group homes equipped to yield her (& others like her) an appropriate quality of life or sufficient medical care….exacerbated by the low wages we pay these staffers.

    The US Gov’t doesn’t want facilities for our elderly & disabled and, while I understand that, sometimes they are the only appropriate solution. And for those facilities, they need to be impeccable. Some are, but the funding is forcing more outreach & less support within the facilities. End of soap box!

    ON another level, I’m hoping to garner your support for a new procedure that is being tested by a neurosurgeon @ Jefferson. Stay tuned….!!!

    Like

    Comment by franboc — September 24, 2017 @ 12:46 PM

    • Well, there’s a lot more to testing for epilepsy than an EEG.

      Beyond EEGs — Diagnostic Tools for Epilepsy

      https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/

      As for any facilities, they’re pretty sparse and pathetic. 😦

      Like

      Comment by Phylis Feiner Johnson — September 24, 2017 @ 1:54 PM

      • True on the facilities, though I understand from families that MelMark & Wood are quite good……

        and, even within the EEG component of an Epilepsy dx, the reading thereof is more art than science…..something I learned early on & witnessed more than once through the years.

        It’s a shame that parents have to get old. People willing to really deal with seizures are few & far between.

        Will keep you posted on the new therapy…

        Like

        Comment by franboc — September 24, 2017 @ 3:11 PM

      • Ok. Please do.

        Like

        Comment by Phylis Feiner Johnson — September 24, 2017 @ 3:47 PM

  13. do you know about a vns it has made my life a lot better hope my life so much better your friend susan

    Like

    Comment by pooterbear — October 18, 2017 @ 12:06 PM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,557 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: