Epilepsy Talk

Bullied Because of Epilepsy… | February 29, 2020

Like lions, they smell the difference…

Like hawks, they sweep down on you…

And like hyenas, they laugh and eat your heart out.

I guess Robert Drucker never heard the saying “don’t hit a man when he’s down.”

Because even though I wasn’t a man, I was surely down on the ground with a seizure. Lend me a hand to get up?

Hell no.

He kicked me in the face and broke my nose.

But no pity parties here.

I’m sure you’re not new to the bullying game.

Where ignorance rules and mean is cool.  Just ask:

Paul, taunted as the “seizure boy” throughout school…

Gemma, gang raped by three boys as a teen…

Troy, whose (former) best friend beat him up…

Sarah, mugged by a man pretending to be her date while she was seizing…

Olivia, whose classmates called her “retard” and dragged her backpack through mud…

Jonathan’s teacher didn’t believe he was having a seizure and pulled the chair from under him, just to see if it was “real”…

Chris’ parents threatened him with a vasectomy, if he dared to have another child…

Tim was repeatedly beat by the police, who accused him of being high on cocaine…

Corinne committed suicide at 13, after her (former) best friends taunted her for two years and finally told her “You should just die”…

And at a State Hospital in Michigan, when Mike had a seizure, they would lock him in the seclusion room.

If he had another seizure there, a nurse or attendant would come in and slap him or literally “belt him”, where nobody could see…

I’m sure you have your own story too.

Will you tell it or stay silent, as so many victims do?

 

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39 Comments »

  1. This makes me so sad! Although in the ER my son (age 32) has been bullied and shamed by the doctors and nurses.

    Liked by 1 person

    Comment by harmonyart1 — February 29, 2020 @ 10:51 AM

    • Bullied by the very people who are supposed to be there to help us.

      What ever happened to the “care” in health care?

      Epilepsy = guilty until proved innocent. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 29, 2020 @ 10:59 AM

      • A nurse actually said my son needed to shut up and someone needed to tell him that.. looking at me. He was not ‘post ictal’ enough for the dr. came to tooo fast and was yelling for help. this is time in the ER when the drs and nurses let him seize for 12 hours with no pads and me holding his head from banging into the rails. My son came to enough to realize I had not eaten all day and asked the ‘nice’ male nurse to get me something. They called the admin and a lady from the patient relations came after we complained about no seizure pads. A Dr. said he ‘didn’t know what game’ my son was playing. I saw red… he was admitted after seizing for over 2 minutes straight and starting up again. He has CTE and a brain injury from multiple hits and accidents. He’s on hospice now and getting good care. I’m in charge of the Ativan IM and haldol and meds for pain.. have a nurse twice a week. It’s actually better. I have someone to call. They help me to manage the siezures and deliver meds. We don’t have to go to ER anymore.

        Liked by 1 person

        Comment by harmonyart1 — February 29, 2020 @ 11:20 AM

      • Not going to the ER is some solace after the way they treated your son and you.

        But the way they behaved is horrendous. I can understand why you were seeing red.

        But, luckily you were there as an advocate. To make sure nothing even worse happened to him.

        Although you shouldn’t have to be on the defense in the ER.

        Why do they think so many of us are “faking” it? Instead of someone coming to attention in such dire times?

        I’m glad you at least have hospice on your side now. And a measure of relief.

        Like

        Comment by Phylis Feiner Johnson — February 29, 2020 @ 11:30 AM

  2. I hope I can make this sound good. When I was just starting grade school, they wanted to make fun of me after seizures but I was the biggest and strongest in my class and they were afraid what would happen to them if they made fun of me. In fact, I protected other kids who were being bullied.

    Like

    Comment by Ed Lugge — February 29, 2020 @ 11:15 AM

  3. Oh yeah!! those school days when everyone HAD TO KNOW what your problem was. When that got out, all grades went down, respect for me as a student was not there, as if that was God’s way to make me look for him & at him only. That was when my grandmother always reminded me with her wise words some were WHERE THERE’S A WILL THERE’S A WAY. So I used those words to my way of thinking of things in the defense for myself. Today being bullied is a BAD thing, but in that time I was made stronger & THEY were weakened when they found out I can defend myself & I did just that. Those bullies could not believe their eyes, as some who bullied me were a 1 or more years older than I was. Then after they were beaten the all stopped, but the disrespect from others & the teachers never stopped, but at least I knew nobody was NOT going to mess with me again. I was pressured to go out & smoke a joint of the football field near the bleachers, & I said NO. I was still harassed about that & I pulled out my own Dilantin & Tegretol & said HERE,, take some of this & I’ll smoke your joint. Then I was called crazy & was told they were going to report me. I then said go on and do it, if you want them to know WHY I was out by the bleachers today. Then that reporting of me all was gone of having a few pills in my pocket as I knew what they were for and that was all that mattered to me. They carried their pot joints just waiting to skip a class or 2, while I knew at a certain time when to go to a water fountain to take my AED’s & nobody knew as I always took them between going to a different class room between class periods. At the end of the day I was never called to the office & ask about my medicines because i made it well known to them that I take my drugs at home,, OR I told them I was off the drugs now, and what they did not know never hurt them as I would take them in school on a day I may not feel so good, as THAT is what I told them & they were okay with that. When everyone knew I had to go to the nurses office every day, I was always being a target to them WHEN I had to leave class between class time was over or during going to another room when I needed to take a drug whenever. So I solved all of that myself MY WAY & it worked.

    Like

    Comment by James D — February 29, 2020 @ 11:26 AM

    • Good for you James. Standing up for yourself and taking care of yourself.

      Not all of us have the courage and/or the means.

      Being a victim stinks. But you seem to have dealt with it admirably.

      Like

      Comment by Phylis Feiner Johnson — February 29, 2020 @ 11:37 AM

  4. I may have told this story here before – a guy I was dating around the time I was diagnosed wanted me to let him know when a seizure was coming on because he’d always wanted to have sex with someone who was “having a fit.” End of relationship.

    Liked by 1 person

    Comment by HoDo — February 29, 2020 @ 12:23 PM

  5. Same thing happened to me.

    A guy I was keen to go out with finally asked me out on a date to go to a party.

    Sitting on the stairs, he said, “Do you really have seizures all the time? Because I’d like to f**k someone having a seizure.”

    GROSS!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 29, 2020 @ 12:29 PM

  6. Yes I think I have told you this story many times.one part that I will never for get was when I was 11 years old.all my brothers and sisters went out for the day.i was at home with my parents.i went outside to play with a car.my father came outside with a belt and gave me a belting because I would get my clothes dirty.i said what about the others he said.we can see what you are doing..that still hurts in my heart.

    Liked by 1 person

    Comment by lanceminnis — February 29, 2020 @ 5:14 PM

  7. Folks,,, I may have shared my story before but it just seems I can’t take it out off my mind the day I had double grandmal seizures & ended up being handcuffed to the ambulance & ER bed for at least two days, until my friend came out to my rescue, threatening the ER doctor being reported to the State Health Department to revoke his license to practice medicine, due to medical malpractice or take the handcuffs off.
    It’s just hard to fathom this incident could ever happen in trillion years, any where in the world.
    While living with Epilepsy & surviving the unpredictable ordeals of seizures had already been very challenging hurdle to overcome, the personal abuse & maltreatment becomes unforgettable nightmare to bear.
    Having my friend coming to my rescue making radical difference that day, I wonder how many voiceless lives are still being bullied, abused & tormented by the very “professional experts & establishments hired & paid to save lives”.
    Thanks to the shocking experience, I finally ended up wearing medical ID card & emergency contact number like a necklace, proving helplful so far.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — February 29, 2020 @ 11:26 PM

    • I know we’ve heard your story before, but it’s an enduring reminder of the cruelty of the medical establishment.

      You were a prisoner of those who have pledged to help you. Abused with no consideration to your condition or your rights.

      It’s a joy and a miracle that your friends were there to advocate for you and rescue you.

      I’m afraid not so many have friends or close ones ready to call into action at this perilous point in time.

      Good that you now have medical ID. Let’s hope it helps prevent future instances.

      Like

      Comment by Phylis Feiner Johnson — March 1, 2020 @ 10:57 AM

  8. I’ve given up on dating anyone. I’ve been left in restaurants because when I take my medications, they say, ‘Oh couldn’t you just skip it for tonight? You don’t really need that shit all the time do you?’ and when I tell them I do, they make an excuse to ‘go to the little boy’s room’ and never come back. They just leave me at the table and the manager of the restaurant shows up at my table with a cordless phone, telling me that ‘I’m sorry to inform you but your date isn’t in the bathroom, he’s left you here. Is there somebody you can call to pick you up?’

    After this happened more than 3 times, I stopped dating anyone… even when I was allowed to drive again and met them at the place – and they still didn’t want to know me because of my medications and I’m stable now. So, I’m on my own, and better for it.

    Still people who have no idea what it’s like to have to take medicine twice a day every day for the rest of my life still think they know better than I do. They think brain surgery will ‘fix it’. They think CBD oil will ‘fix it’… nothing will with Epilepsy – it’s not curable.

    Liked by 2 people

    Comment by Lynda — March 1, 2020 @ 8:47 PM

    • I had a date who asked if he could f**k me while I had a seizure. Someone who took me to a disco with flashing lights (that’s how old I am!) and ask me to dance.

      There were those who said I was just like an orchestra conductor when I shook. A person who left me for dead when I had a violent seizure.

      But then I had a flaming seizure on my first date with this one guy. He asked if he could help me. What could he do to make me feel more comfortable.

      I couldn’t believe it. He was being nice to me. Why? Because his best friend had epilepsy and he had been through the seizure land mines many, many times.

      This month, and many seizures later, we will have been married for 40 years.

      There is life beyond epilepsy.

      Like

      Comment by Phylis Feiner Johnson — March 1, 2020 @ 11:33 PM

      • Lucky you Phylis, You got a hero for a husband.
        Arthur had to be the most precious lifetime treasure you can ask for.
        Holding strong for 40 years through thick & thin, you got a gem millions of people would love to have for true friend.
        It’s pleasing to know there’re few good guys out there, in this cruel world.
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — March 2, 2020 @ 10:55 AM

  9. I was bullied even starting in pre-school. I was bullied the most in 6th grade, not just because of my Epilepsy, but my kidney disorder as well. One boy shoved his desk against mine that it hit me in the stomach. Most other classmates were verbally bullying me(and getting all up in my face). All the bullying I went through was why my mother started teaching at the school I went to (a Catholic grade school where she taught Kindergarten/K-5 for many years then did K4 and K3, now she’s semi-retired and subbing for the lower grades). I think part of my Anxiety now is because of all the bullying I went through. A lot of my experiences though taught me more and made me smarter/ more knowledgeable about everything though, so I use it to help others and teach people about Epilepsy more.

    Liked by 1 person

    Comment by trekkie80sgirl — March 2, 2020 @ 1:09 AM

  10. Congratulations. You managed to turn lemons into lemonade.

    Despite the abhorrent behavior of others, you persisted, even in the throes of anxiety.

    And you managed to turn your fear into a beacon for others in the same boat of ignorance and fear.

    I admire you.

    Like

    Comment by Phylis Feiner Johnson — March 2, 2020 @ 10:06 AM

  11. This just in! March is Brain Injury Awareness Month. For all of us who are on this page due to brain injuries, look for events at your local hospitals and medical centers.

    Liked by 1 person

    Comment by HoDo — March 2, 2020 @ 10:45 AM

  12. Sadly, I’ve been through this as well. I still go through with it. I have a service dog, and as I go through public I have gotten comments that I shouldn’t need a dog to help with my seizures. In school, I had so many kids bullying me that I got to the point of cutting myself and struggling with many mental health problems, including suicide attempts. I have also been raped – as an adult – while I was having a seizure.

    Liked by 1 person

    Comment by ultimatemisfit953630528 — March 2, 2020 @ 9:41 PM

    • OMG. I don’t know which is worse. Rape or suicide.

      Someone wanted to “rape” me while I had a seizure. Nice guy.

      I tried to kill myself. Believe me, it’s not a pretty place to be.

      Two heart attacks, an induced coma, 5 days in the hospital, followed by 10 days in rehab.

      It was hell. (No pun intended.)

      I hope that service dog guides you to better days ahead.

      Blessings to you.

      Like

      Comment by Phylis Feiner Johnson — March 2, 2020 @ 10:25 PM

  13. One time I VERY QUICKLY went into the mall with my youngest daughter (13 years old at the time) to buy my oldest daughter a Christmas present and my husband waited outside in our vehicle for us. As I stood at the counter the T.V. (Was a new very flashy television was on) and I kept telling the man “PLEASE HURRY!! Or please shut off that T.V.!!!!!”. He never shut it off fast enough and I had a seizure. When I was coming out of my seizure there were workers, security staff and police questioning me at to what I was on? Or what I took?! I told them “nothing I’m an epileptic and I couldn’t handle that television and HE WOULD NOT HURRY UP!!!!!!”. Only because my daughter told them the same thing on the other side of the store they let us go!! I felt SO BAD FOR MY DAUGHTER AND YET TOO EXHAUSTED to explain why we took so long to my husband as he waited just outside the doors! I couldn’t believe what happened to me or the humiliation and fear my daughter had to endure watching me as they apparently pinned me down! As for hospitals the ONLY WAY I WILL GO IN is if my husband and children PROMISE THEY WON’T EVER LEAVE ME ALONE THERE!!!!!!! Yet even they have to suffer the consequences of me having a seizure and then fear getting blamed by doctors or nurses!! YES THAT HAS HAPPENED AS WELL!! Which was actually what led me to want to JUST WORK WITH ANIMALS INSTEAD!! They just bite, squeal, kick and on and on but NEVER HUMAN VIOLATION OF ME BECAUSE I HAVE/HAD A SEIZURE!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — March 3, 2020 @ 12:28 AM

    • Unfortunately, many people accuse us of faking it. But pinning you down would just cause more harm, not to mention the abhorrent behavior.

      I do feel badly for your daughter, but at least she was there to advocate for you and “save” you. Sometimes the harshest lesson is reality.

      Animals can’t talk, which is a good thing. And they can’t accuse you of something you have no control over.

      Which is more than I can say for many hospital ERs.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 3, 2020 @ 9:15 AM

      • I COMPLETELY AGREE WITH YOU!! Thank you Phylis 😊

        Liked by 1 person

        Comment by Kathy S.B — March 3, 2020 @ 7:16 PM

  14. There is a relevant article by Hahna Yoon in today’s (March 4th) New York Times online about how to respond to microaggressions. Bullying is mostly macro, but not always. The article makes a number of useful points.

    Liked by 2 people

    Comment by HoDo — March 4, 2020 @ 9:14 AM

  15. Again, thank you so very much.

    Like

    Comment by Phylis Feiner Johnson — March 5, 2020 @ 9:38 AM

    • Yes and your own family is the worst they use the epilepsy to put you down

      Liked by 1 person

      Comment by lanceminnis — March 5, 2020 @ 6:33 PM

      • That was then. My parents were toxic and treated me like a pariah

        This is now. I’ve been married to a loving, supportive, caring husband for 40 years.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 5, 2020 @ 6:45 PM

  16. People would be shocked if they REALLY KNEW HOW AWFUL SOME OF OUR FAMILY MEMBERS TRULY TREAT US!!!!! In fact NOBODY WOULD BELIEVE US BECAUSE THEY CAN’T HANDLE HEARING THE TRUTH!! I was in the same boat with my “BIOLOGICAL REPRODUCER”!!!!! In fact still am, but I just mind my own business and stick to my husband and children 🙏🏼🦅💝😘

    Liked by 1 person

    Comment by Kathy S.B — March 6, 2020 @ 10:21 PM

  17. Sad that your own birth mother couldn’t come to terms with your condition.

    Maybe she thought she was the cause. Or there was something wrong with her?

    Like

    Comment by Phylis Feiner Johnson — March 7, 2020 @ 9:25 AM

  18. I have some students at our school in Sierra Leone, West Africa with epilepsy whose parents were uneducated about epilepsy and believed he was posed by evil spirits.

    We were fortunate to have some medical group that came from England to hold epilepsy clinic in our city. I had the parents and my staff attend the clinic and after that, my students are now on medications to control their epilepsy.

    We still need a lot of education to remove the stigma.

    Liked by 1 person

    Comment by juniorsplaceofhope — March 10, 2020 @ 1:52 PM

    • You might find this article interesting:

      The Stigma of Epilepsy…

      https://epilepsytalk.com/2018/01/14/the-stigma-of-epilepsy/

      And yes, I agree. The world, at large, needs a lot more education to remove the stigma of epilepsy.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 10, 2020 @ 3:24 PM

    • Globally, epilepsy has been the most castigated mysterious illness through out human history.
      Therefore, widespread global educational awareness is needed to eliminate the social rejection & harassment of the helpless victims of epilepsy.

      Liked by 2 people

      Comment by BahreNegash Eritrea — March 11, 2020 @ 8:45 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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