Epilepsy Talk

Epilepsy Stigma and Awareness | June 17, 2017

Until the late 1970s, legislation in the United States prevented people with epilepsy from entering public buildings such as restaurants, shopping centers, and theaters. [US Department of Health]

“Most of my life, I have been scared to talk about my epilepsy. Why? Because I was scared what others would think. Society does isolate, even discriminates against people with epilepsy.” — Louis S.

It starts on the playground. A child looks “funny” or acts “weird” and immediately he’s labeled a misfit, thanks to a lack of education and awareness.

“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 H.I.V. even. At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

Despite recent advances in the management of epilepsy, the efforts to assess knowledge, attitude and practice towards epilepsy are limited among schoolteachers, firefighters, police.

Lack of public understanding has led to people with complex partial seizures being unfairly arrested as drunk or disorderly, being accused by others of unlawful activity, indecent exposure or drug abuse – all because of actions produced by seizures.

Such actions may even be misdiagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.

Even Twitter has put their two cents!

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.

“It’s better today,” Orrin Devinsky says about public perceptions of the disorder. “But even among well-educated people, people don’t like to talk about epilepsy.”

But there are definite goals in place for better understanding to ease the stigma of epilepsy and even raise the area of awareness.

People acquire information about epilepsy from family and friends, entertainment and news media, the Internet, and social media. Sometimes helpful and sometime real scary!

Actions definitely need to improve public awareness and knowledge including:
Increasing public and professional awareness of epilepsy as a universal, treatable brain disorder…
Raising epilepsy to a new plane of acceptability in the public domain…
Promoting public and professional education about epilepsy…
Identifying the needs of people with epilepsy on a national and regional basis…
Encouraging governments and departments of health to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services, and prevention…

As a whole, The Epilepsy Foundation is committed to increasing public awareness of seizures.

At the heart are a number of different public health service programs designed for schools, the workplace, public servants and for the home.

These programs are intended to raise awareness and educate others on recognizing seizure signs and symptoms while enhancing the quality of life for those — individuals and families — affected by seizures and epilepsy.

Spokespeople featuring Rick Harrison from TV’s “Pawn Stars” and Greg Grunberg, star of Heroes, Alias, and Felicity, have been enlisted…

Walks have been started nationwide. From the northwest to the southeast, raising millions of dollars towards awareness and advocacy…

There are Candlelight Concerts for epilepsy, which span 50 states…

Buildings are lit in honor of November’s Epilepsy Awareness Month…

Even the NFL supports epilepsy awareness!

“We can fight seizures if we fight for our dreams every day and appreciate the little things we accomplish” — Rachel Joy

And that’s a promise.

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  1. And those with epilepsy who hide their condition need to accept themselves, no longer feeling shame. It is then that they can step out into the light, helping those without epilepsy see that we are people just like they.


    Comment by shedlightonepilepsy — June 17, 2017 @ 2:43 PM

  2. I don’t hide my condition. There is definitely stigma still out there, but we’ve come a long way. Most I’ve encountered are very helpful. But I do remember one instance where I was walking with my daughters on a hot day and it became too much for me. I sat on a bench to cool off but it was too late. I started seizing. There were several helpful people who stepped up to help by pouring cool water on me, etc. But my daughter said a huge crowd gathered to gawk. She finally yelled to the crowd, “This isn’t a show! Move along!” It’s one thing to stop to help but another thing to stand and stare for pure entertainment.
    I often post on social media to increase awareness. Asking “If you were to encounter someone having a seizure, would you know what to do? What if it happened to your loved one? Then I post steps to take. I repeat the posts periodically as a refresher. Some do the completely wrong things like holding the tongue, just panicking or other things that hurt rather than help. I believe in increasing awareness whenever I can at the risk of being stigmatized. I wear an awareness T-shirt proudly because the more people are educated, the less they are afraid of epilepsy.

    Liked by 1 person

    Comment by Terri — June 17, 2017 @ 4:07 PM

  3. I say to defeat all stigmas of having seizures, then all & I MEAN ALL & EVERY root cause or triggers for having seizures MUST BE talked about & brought to ATTENTION in all 50 states & neurological doctors offices everywhere. We who are tormented with FOOD CHEMICALS like Aspartames & MSG’s causing seizures, among other chemicals & additives like gums, nitrates, nitrites, concentrates, natural flavors, extracts, carrageenan & etc,,, that all CAN & DO cause seizures, when we try to explain to doctors, their eyes roll back & they quickly say,,” well that’s something that YOU have to manage. When 95% + of all foods have these food toxins & chemicals in all we can eat, & 80% + or more of all drinks are the same way, & WE who are being attacked in our brain, by the food & DRUG industry, we have no chance of ever being seizure free & living a seizure free life. AED drugs like ZONEGRAN, ONFI, PARAMPANEL & others I know have either or both MSG’s & ASPARTAME’s in them, & especially all generic names, with have MORE of them, than brand name AED’s will have. So generic names are as good as BRAND names, & that is why we can buy them cheaper ? Generic names too in most cases cause MORE seizures than brand name drugs. Kenogenic diet have MSG foods in what they suggest you eat, and people wonder WHY ??? the majority of those on that diet, does NOT stop or reduce the seizure numbers people have ? Everyone has to listen to their brain, as I have always said for over 50 years,, ”THE BRAIN DOES NOT LIE”,, & when the side effects happen, that is the brain telling anyone,, I DO NOT NEED THIS DRUG. Just like what the brain tells me when MSG is in a food I do not detect, & a G M seizure happens. Then when it is to late, I learn WHAT in most cases what triggered that seizure to happen. ALERT.. Beware of ALL COLORS of BELL PEPPERS. MSG types of chemicals now is being sprayed on them, to preserve store & shelf life in that produce section of the food stores. YES I learned that the hard way. READ the book called VIBRATIONS, by Owen Ortho printed back in the early 1980’s or 70’s.


    Comment by C D — June 17, 2017 @ 4:35 PM

  4. One would think the ancient days of Epilepsy, condemning the victims of seizures for being “possessed by demons” are long gone, until one finds out the “civilized world” is barring seizure victims from Public Library & the emergency rescue team do easily make up their minds without medical diagnosis, handcuffing patients to Ambulance & Hospital bed presuming “illegal drugs overdose”.
    Thanks to loyal friends who STOOD UP to the wicked establishments, I’m still standing & walking free, beating down two grandmal seizures in just six months & the lynching crew established to prosecute & maltreat patients having seizures, when they are helplessly down & out.
    Until there’s a FEDERAL LAW holding accountable the establishments maltreating victims of Epilepsy, the crusade for awareness of Epileptic seizures got a long way to go to save the victims of Epilepsy.
    Thank you to your voice for the voiceless.

    Liked by 1 person

    Comment by Gerrie — June 18, 2017 @ 6:51 AM

    • Federal law means nothing. It may parade as a public mandate, but unless it’s upheld, the law is only as good as the people.

      It’s the very people who lynch, bully, ignore and mistreat those who have epilepsy who must be held accountable by peer morals and a public sense of values.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 18, 2017 @ 10:00 AM

  5. My parents kept it a hush, hush ! Thing!
    I went to private school! People prayed for me. When having them in public my mom would turn me, I had no idea! What she went through! I just remember ! Shots, headaches, broken bones and wanting to go home!

    Now there is outreach for patients ! Patient support! Internet! Loving groups likes this! Better care!

    Liked by 1 person

    Comment by red2robi — June 18, 2017 @ 3:42 PM

    • Thanks for all the love. I think each and every one of us needs the support they’ve lacked — whether young or old.

      You hear so many stories of mental and physical abuse that are so horrible, it’s difficult to fathom.

      That’s why outreach, education and advocacy are so important.

      Along with your support.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 18, 2017 @ 3:48 PM

  6. To raise awareness of epilepsy, we must stop referring to people as Epileptics, I feel sick looking at the word, it is no longer used by the British Medical Ass’tn, and neither is the word fit. We no longer label people, and stopped using such names as spastics, lunatics, retards, and mongs, all of which are used in derogatory ways when insulting people, and the word epileptic has age old links to witchcraft, madness, devil worship, and insanity, to name but a few. In thirty one years with epilepsy, I have never used the word, it disgusts me, I am a person with epilepsy, that’s it. I’ve been accused of being in denial of my epilepsy, no way, I’ve done radio and to interviews to try and do what I wish our two organisations in the U.K. only touch upon, and that is simply, to educate and raise awareness.

    Liked by 1 person

    Comment by Elaine Howell — June 19, 2017 @ 4:28 PM

  7. The Stigma is a big thing with epilepsy as it carries over the siblings where discrimination can be high and ignorant.


    Comment by Jill Whiting — June 22, 2017 @ 10:01 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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