Epilepsy Talk

What Most Offends YOU About How People Treat Epilepsy? | August 29, 2019

I call epilepsy the “stealth condition,” because most people don’t actually witness a seizure.

Which results in an abundance of ignorance…misinformation..and to be frank, discrimination and slurs.

There’s the imitation of someone having a seizure (big on T.V.)…bullying and name calling in the schoolyard…people turning their backs once they find out you have the big “E.”

You might as well have leprosy!  (No folks, contrary to myth, it’s not catching!)

A pet peeve of mine is being treated as a pariah.

Public service organizations and businesses politely refuse my offer to give a presentation. Heaven forbid I upset their audience —  during lunch!

There’s the stigma of employment, where what you disclose about your epilepsy determines your future.

And the feeling that if you have epilepsy, you can’t be expected to achieve anything. (My parents almost died when I graduated from college Magna Cum Laude!)

We constantly have to stand up for ourselves, endure ignorance, and advocate to exist. While the world beyond us seems oblivious.

What’s your experience? And how do you feel about it?  Tell us…

 

To subscribe to Epilepsy Talk and receive the latest articles, simply go to the bottom of the right column, enter your email address and click on “Follow”


33 Comments »

  1. Lack of encouragement was a key obstacle in my journey. Others expected little of me, so my success, was a surprise to my family. Read about it in my new book: “Unleash The Girls, The Untold Story of the Invention of the Sports Bra and How it Changed the World (and Me)” —
    Epilepsy can be a good teacher!

    Liked by 1 person

    Comment by Lisa Z Lindahl — August 29, 2019 @ 10:10 AM

    • Like you, no on expected anything from me, except failure.

      When I was first diagnosed as a teen, no one knew what to do with me.

      My parents refused to use the “E” word. People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either).

      The Dilantin made me feel like a zombie…I even went into a coma once.

      I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

      I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 10:22 AM

  2. Hey Phylis, personally i could give a rats ass to what other people think, say or do. There are smart people out there, ignorant people out there and there are real stupid people out there. It’s the really stupid people out there are the type u r referring to in this article and it’s some of the ignorant people that may laugh with them. But those types, why even have them as friends or acquaintances. Smart people have empathy and won’t make fun of others handicaps.

    Liked by 1 person

    Comment by Zolt — August 29, 2019 @ 10:17 AM

    • It’s the empathetic people out there that I’m looking for.

      I admire your independence and your attitude.

      But you know, I always admire both you and who you are.

      Kudos to you, Zolt!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 10:26 AM

  3. This site is continuing to reject my comments by not posting them at all. This has been going on now for at least 30+ days. So I type for finger exercises I guess. C D

    Like

    Comment by jcdavis@hardynet.com — August 29, 2019 @ 10:20 AM

    • C D, why don’t you try rejoining?

      You’re not showing up on the spam file, so I don’t know why your comments aren’t showing.

      Especially, since this post did. (???)

      Please keep trying.

      I want to hear what you have to say. And I miss you.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 10:30 AM

  4. Phylis, you did it again – you asked a tough question and gave your frank answer! Thank you. And thank you, again. I resonated with everything you wrote, except for the Magna Cum Laude part. Perhaps others will resonate with my experiences. It’s a delicate balancing act for me. To get employed – yes, the church (I’m a priest) “should” be different, but it’s not – I feel I have to almost lie about having epilepsy. Emails and telephone calls are not returned when I lead with the fact that I am “disabled.” Essentially, I have to get my foot in the door, have a positive interview but not lead with the fact that I have epilepsy. It will eventually come out, in one way or another, about my condition. It’s like playing some very sophisticated game. Though I can do it, I don’t like playing those kinds of games. Perhaps others have had employment discrimation and can be of support to one another. I have found support here. George

    Liked by 1 person

    Comment by George Choyce — August 29, 2019 @ 11:17 AM

    • It’s a sad state of affairs that when you apply for church positions, you have to keep your epilepsy a secret.

      I mean, this is the church. Whatever became of empathy and compassion?

      I guess it’s just like everything else. Politics, misunderstanding, ignorance and the lot.

      But, at least, it’s very disappointing.

      And I congratulate you for your perseverance, dedication and spirit.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 11:37 AM

  5. Thank you for speaking up for the millions of people around the world who have seizures and are discriminated against. Am originally form Sierra Leone, West Africa where I opened a school for individuals with autism and other special needs last year because our people lack education about individuals with special needs. Individuals with seizures are stigmatized and some even loose their partners after their first seizure attack as people are afraid its contagious. I am doing my own part by education the community but more work needs to be done.

    Liked by 1 person

    Comment by juniorsplaceofhope — August 29, 2019 @ 11:33 AM

  6. Wow, what an advocate.

    Doing what you can and must through dedication and generosity of spirit.

    Of course, more has to be done.

    But a storm of recognition begins with a single wave.

    Congratulations.

    Like

    Comment by Phylis Feiner Johnson — August 29, 2019 @ 11:41 AM

  7. I’m with Zolt on this one. Anyone stupid enough to be discriminatory against someone based on having epilepsy is not someone whose opinion I care about.

    What does bug me is the somewhat more subtle form of telling you that you are incompetent that is often voiced as “concern” for your welfare. “How do you manage to live all alone?” Just fine, thank you. Or the potential landlord asking if I was sure I would be OK with a house that had stairs in it. Yes, I do know how to climb stairs.
    Or the people who say, “Wow, that’s really impressive that you have a PhD and were a university professor…” They could just stop right there and I would say thank you but they feel the need to add, “….considering your condition.” As if getting a PhD and teaching at a university is somehow easy peasy for everybody else.

    Liked by 1 person

    Comment by paleobird — August 29, 2019 @ 12:13 PM

    • I also agree. It’s that damn “BUT” that’s inserted in disbelief.

      And most of the “concern” is a CYA protection, voiced by ignorance.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 12:19 PM

  8. Epilepsy is always with you.people who think you are going to fall in front of them all the time annoy me.

    Liked by 1 person

    Comment by lanceminnis — August 29, 2019 @ 3:29 PM

  9. Yes, they expect you to thrash around and maybe — if the “show” is especially good — swallow your tongue. 😦

    Like

    Comment by Phylis Feiner Johnson — August 29, 2019 @ 3:33 PM

  10. I was on cycle 12 of America’s Next Top Model and I feel that I was really taken advantage of. They dramatised my epilepsy, had strobe lights on the runway, used me and then threw me away.

    Liked by 1 person

    Comment by Kelly Falk — August 29, 2019 @ 8:33 PM

    • I guess you were (quite literally) their disability “poster girl”.

      I’m so sorry to hear that Kelly. 😦

      Like

      Comment by Phylis Feiner Johnson — August 29, 2019 @ 10:56 PM

  11. As if coping with epilepsy & surviving each seizure is NOT difficult enough, imagine predisposed & suspected for illegal drug overdose to having grandmal seizure & waking up in hospital intensive care unit handcuffed to bed by the very “professional rescue team who came to your aid”?
    The abuse leaves behind deep scar, mistrusting society.
    Therefore, the struggle of living with seizures is a whole lot bigger than living with neurological disorder.
    It takes a very strong determination to keep fighting the social maltreatment & the epileptic seizures.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — August 30, 2019 @ 2:23 AM

  12. I think that being suspected for drugs is one of the biggest insults.

    Of course not as bad as waking up chained to the bed by the very “authorities” that are supposed to “help” you.

    Gerrie, I don’t know how you’re survived all of the indignities, but you’re a real hero in my book.

    Like

    Comment by Phylis Feiner Johnson — August 30, 2019 @ 9:18 AM

    • Phylis,
      Thanks to pioneers like you & members of this forum sharing their precious time & rich experience, I learned a whole lot more about seizures, social stigma/injustice & myself to make it this far.
      Armoured with a whole lot more information than I started with, I’m grateful to have come this far & more determined to stand out against social injustice.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — August 30, 2019 @ 10:32 PM

  13. My personal pet peeve is people who don’t believe you did or, are having a Seizure because they don’t look like the ones on TV.

    Liked by 1 person

    Comment by Donna Jones — August 30, 2019 @ 10:59 AM

  14. what I don’t like is when people hear someone has epilepsy as I do they think we are just going to fall to the floor. not all seizures are alike and ppl with seizures as myself weren’t asked to be born this way! stop judging ppl or laughing at ppl with epilepsy or any other condition especially if u know very little about it.

    Liked by 1 person

    Comment by Jeanette fry — August 30, 2019 @ 11:21 AM

    • It’s pure ignorance and lack of education.

      Not to mention a lack of empathy or understanding.

      No, we don’t all flail around on the floor and we DON’T swallow our tongues!

      Like

      Comment by Phylis Feiner Johnson — August 30, 2019 @ 11:30 AM

  15. I have been accused to be doing drugs, drunk, or joking around with the people’s feelings. intelligence, brain etc. with my behavior when witnessing my lethargic and vertigo. Further, I currently have cuts and bruises all over and don’t even get a signal of a seizure coming.
    Not to change topic, but what do you all do? One said to wear a helmet and football player gear to have a life. I, myself am considering a Home Health Aide, but not many have experience with seizures and brain trauma. Then was considering a service dog. Currently living with elderly ,very anxiety-prone parents etc who are not 100% well. Any recommendations?

    Liked by 1 person

    Comment by M — August 30, 2019 @ 8:35 PM

  16. I think a service dog is a brilliant idea.

    Maybe these links will help:

    Seizure Alert Dogs

    https://epilepsytalk.com/2010/05/25/seizure-alert-dogs/

    Seizure Service Dogs Directory — National and International

    https://epilepsytalk.com/2014/05/11/seizure-service-dogs-directory-national-and-international/

    I think a furry friend/aide will take you far.

    Like

    Comment by Phylis Feiner Johnson — August 30, 2019 @ 11:07 PM

  17. I have a seizure disorder and people act like its a contagious decease. Alot of people need to learn more about seizures and Epilepsy.

    Liked by 1 person

    Comment by Rusty Hanawalt — September 2, 2019 @ 12:34 AM

    • I know what you’re saying.

      My parents treated me like a pariah.

      To this date, at the age of 88, my mother still won’t say the “E’ word.

      Education is key. And above all, we must be our own advocates.

      If not us, then who?

      Like

      Comment by Phylis Feiner Johnson — September 2, 2019 @ 10:16 AM

      • Furthermore, if society got no problem with constantly hearing about cancer, heart attack, stroke, diabetes,,, it’s long overdue for society to learn more about Epilepsy.
        It’s about time to pull out Epilepsy from biblical curse, fear, neglect, rejection & shadows of society.
        The health institutions & medical industry could have been instrumental providing strong advocacy & information to the general public, enabling society to understand Epilepsy just like cancer, heart attack, strock, diabetes,,,
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — September 2, 2019 @ 1:52 PM

  18. * Epilepsy affects over 3.4 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.

    * In America, Epilepsy is as common as Breast Cancer, and takes as many lives.

    * It’s the third most common neurological disorder after Alzheimer’s and stroke.

    * Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.

    * The Federal Government spends much less on epilepsy research compared to other diseases, which affect fewer people.

    * Each year the National Institute of Health (NIH) spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy. 😦

    Like

    Comment by Phylis Feiner Johnson — September 2, 2019 @ 1:56 PM

    • Exactly my point, Phylis.
      Thank you for backing up my case with statistical data.
      Since eternity, Epilepsy has been neglected, rejected & buried deep in the shadows of society for the general public to understand what makes the neurological disorder or how to cope with the occasional but imminent seizures.
      The government’s healthcare establishments, resources, research, education institutions & the medical industry must get involved in advocating & supporting public information, providing education on the impact of Epilepsy in society, just like the government institutions advocate & support the crusade against cancer, heart attack, strock, diabetes,,,
      Advocating for Epilepsy, organized strong voice is needed to shake up the establishments to recognize epilepsy.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — September 2, 2019 @ 2:51 PM

  19. Very good point. And we must begin with advocacy, here and now.

    If we don’t advocate for one another, then who will?

    Like

    Comment by Phylis Feiner Johnson — September 2, 2019 @ 3:00 PM

  20. The most off-putting experience was having a supervisor force me to sign a paper guaranteeing that I wouldn’t have a seizure on company premises, even though I explained that I don’t have grand mal seizures.

    I also hate being referred to as “an epileptic”, as if that were the whole of me. Even (especially?) doctors stop listening when they see THAT WORD.

    Liked by 1 person

    Comment by HoDo — September 9, 2019 @ 12:24 PM

  21. I had an orthopedist throw me out of his office while having a seizure.

    A doctor refusing to accept another medical condition?

    Or was it “just not on my turf lady.”

    Like

    Comment by Phylis Feiner Johnson — September 9, 2019 @ 12:29 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 )

Google photo

You are commenting using your Google 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 )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    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 free notifications of new posts by email.

    Join 2,797 other followers

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