Epilepsy Talk

Bullied because of epilepsy… | July 14, 2022

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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  1. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — July 14, 2022 @ 11:08 AM

  2. My blood is boiling, my heart is racing…my fists are clenched, as well as my jaw. My son, 20 years old, has had epilepsy, uncontrolled with many medications for 7 years. Yes, he lost most friends, some classmates teased and taunted. For anyone who has to suffer from the ignorance of others, epilepsy or not, my heart breaks for you. For those who suffer with epilepsy, it’s personal and it breaks so much more than my heart. To those who are grotesque enough to commit such horrific crimes, I beg you, BEG you to stop and lend a hand to those who need it, be kind and give help when you have the strength others simply can’t.

    Liked by 1 person

    Comment by Christine — July 14, 2022 @ 12:42 PM

  3. […] Source link […]


    Pingback by Bullied because of epilepsy… – My Blog — July 14, 2022 @ 1:11 PM

  4. […] Source link […]


    Pingback by Bullied because of epilepsy… – Richard Pearce — July 14, 2022 @ 1:17 PM

  5. This was horrific.

    Liked by 1 person

    Comment by Flower Roberts — July 14, 2022 @ 2:43 PM

  6. Presumed intoxicated & lost my mind from illegal drug overdose I’ve never indulged myself before, imagine being handcuffed to Ambulance & hospital bed for a whole day long by the Police & emergency crew because of & while I’m having grand mal seizures, until a dear friend walks up to the hospital intensive care unit & find out my unfortunate predicament & demanded that the hospital doctors & nurses to uncuff me from the bed & release me from the hospital to his care or face complaints being reported to the state medical board & lawsuits from the state attorney general for medical malpractice?
    The tormenting experience had taught me very hard lessons I could NOT have imagined possible in million years.
    As if our lives has NOT been radically altered by seizures, it’s daunting to know that bullies come & go in all shapes, forms & colors to torment our lives.
    Fortunately, it’s pleasing to know that there are few heroes who stand out to save our lives, challenging the vultures who pray upon our misfortunes.

    Liked by 1 person

    Comment by Gerrie — July 15, 2022 @ 1:44 PM

  7. I was bullied in grade school (first through seventh grade) at the private school I was attending. At first, every one of my classmates were picked on by one student that was in my homeroom – he had a disability. This student was in all of my classes, to include homeroom, through the end of sixth grade. It seemed that I received most of the bullying though, even before my seizures were “noticed” by my parents. I don’t know exactly when i started having seizures.

    When I was in fourth grade, each of my classmates started to ignore me both inside and outside of the classroom – but especially when we were supposed to complete assignments/projects in groups or pairs. At this time in school, students were allowed to participate in extracurricular activities, sports, etc. and I sat alone at lunch everyday. Around this time my mother started to notice my seizure activity, yet my teachers didn’t realize or do anything about it.

    Over the next few years my father was deployed with the military, and I found it harder to learn and remember the content I was taught in school. I was diagnosed with epilepsy and a brain tumor in ninth grade, during his third and final deployment. Right before I was diagnosed, I switched to Cyber School because I was able to learn and complete assignments at my own pace.

    Liked by 1 person

    Comment by Gwen Soergel — July 15, 2022 @ 1:56 PM

    • Gwen, was the brain tumor removed? Or was it the source of the seizures.


      Comment by Phylis Feiner Johnson — July 15, 2022 @ 1:59 PM

      • The brain tumor was/still is one of the areas my seizures are coming from – although some doctors don’t want to admit that. I had a partial resection of my brain tumor in high school, about 14 months after diagnosis.

        Liked by 1 person

        Comment by Gwen Soergel — July 15, 2022 @ 2:07 PM

  8. On a small, local street, I pushed the car ahead of me across an intersection, leaving the driver’s car with a bent rear bumper. No one hurt. Long story short, I was taken away in handcuffs by the police and placed in a solitary confirment cell at the police station. No questions, no doctor, “can we help”, or any such thing. I was treated no differently than a violent criminal. No fun being locked behind bars for 5 hours in a room approximately 6 feet x 6 feet in size. Yep, lost most of the few friends I had left from previous seizures. While the few I still had left from this event, I no longer got invited to their social events. It’s likely they didn’t want others to think they hung around with a criminal. To others like Gerrie, I still have faith that there is a positive reason for us having to go through life with such unfairness.

    Liked by 1 person

    Comment by Roy Anthony — July 16, 2022 @ 7:04 PM

    • Yes Roy,,, Just like gold is mined, tested & minted by fire, thanks to Epilepsy I’ve learned the hard way on what it takes to survive the tormenting experience of injustice, harassment, rejection & alienation from the very sources I was expecting to stand by my side when I was down & knocked out by seizures.
      In the whole process of surviving seizures, it’s great to know the deep uncompromising loyalty of my dear friends who would stick out their neck to stand by my side when it matters the most.
      I hope & wish you the same.

      Liked by 1 person

      Comment by Gerrie — July 16, 2022 @ 10:46 PM

  9. No wonder people call us “Epilepsy Warriors”.


    Comment by Phylis Feiner Johnson — July 17, 2022 @ 12:11 AM

  10. I didn’t have seizures when i went to school, but i was still bullied. It’s sad part of life but it’s part of most living things. Even my cat will bully his brother around. My neighbors cat comes around and beats up my cats. I know when i saw someone bullying others i’d step in and stop it, when i could. Sometimes bullies are nothing but talk, i confronted one and found him to be a coward when it came to a fight. Also there are 2 types of bulling physical and emotional/mental. In both cases one has to stop it at the start. Or just avoid them as best as possible.

    Liked by 1 person

    Comment by Zolt — July 18, 2022 @ 1:24 PM

  11. I agree with you. Many bullies are sheep in wolves clothing. Nevertheless, it doesn’t make their physical, verbal or psychological abuse any more acceptable. Abuse says just what it is. And it must be stopped.


    Comment by Phylis Feiner Johnson — July 18, 2022 @ 1:45 PM

  12. Well into my 50’s now, I have had over a decade to live with epilepsy and reflect on its influence in my life. First, I probably need to make my confession. There was certainly a part of me as a student who teased those with epilepsy. It was not physical abuse, but it was emotional. I was living in ignorance and found that any kind of teasing of others could help me to be more accepted, perhaps “cool”.

    It was not until my 40’s that I had my first seizure. It was in public. And it embarrassed my parish. You see, I am an episcopal priest and will not hide what the church did to me. Even they, as adults, acted in ignorance and “forced” me to resign. But that is a whole other legal story.

    Unfortunately, it has still labeled me as someone who has epilepsy. Essentially, I am an untouchable – kind of like a person with leprosy. Up until two years ago, I would try to get an interview to either be part-time or a volunteer priest at a church, but they all wanted to know if I “had my little problem under control.” Talk about emotional/psychological bullying!!! I gave up and do not even go to church at all.

    I do, however, come to groups like this who give me support. The Epilepsy Foundation has been an incredible source of encouragement, as well. Our situations as bullied adults with epilepsy are not hopeless. We all have to get over any pity parties and go forward. You just never know what is out there.

    Liked by 1 person

    Comment by George — July 19, 2022 @ 1:06 PM

  13. Because of me having a seizure infront of my superintendent of my apartment building who just happened to be someone that I knew from high school, she started to avoid me like the plague!
    The Maintenance woman did the work that she was supposed to.
    I even heard her voice shout outside my apartment that, “she didn’t tell me that had Epilepsy in HighSchool!!!”

    Several more occasions where she was unprofessional with her job position!!
    I’m still trying to ask questions about who triggered me to go into Status Epilepticus then a Coma once after being in the hospital for EMU, then triggered me to go into that again multiple times once after I was Raped a year later for which the police of the badge that was to investigate it, had recently told me “You have Epilepsy? Why don’t you to the hospital and take some pills!!!”
    First time after leaving a hospital after getting wound care from hospital! Both times trying to find answers about my Rape investigation!!
    It seems I’m in a part of a large city that has a uncivilized mind or a backwards mind that a woman without a man or with her man is “allowable to be Raped” because that is their mindset!!
    You’ve seen in Human Rights documentaries or heard or read stories of girls and women being Raped because they’re girls….
    Only because of that!

    Even Cyberbullies take pot shots at people living with disabilities because they can!
    Hiding behind the computer screen makes them into whoever they want… That’s why FBI.gov, amber alerts.gov and canadamostwanted.org and the americanmostwanted.org are still on their on their toes and watching the Internet for Cybercrimes and criminals stealing money from persons with disabilities, because they assume we’re not fully aware of what’s going on the world and the bills, rent that we pay every damn month!
    The worst I was in hospital a few years ago for Epileptic reasons and my fur baby was inside my apartment when I returned back the lock of my door was changed!!
    I couldn’t find the superintendent but 3 teenagers knew that I couldn’t get back into my apartment in unison said, “If YOU want to get back into YOUR apartment call the police or the security!!”
    I was panicking I phoned a wrong number yet the person was helping me none the less.. Told me what I what I going was against MY Human Rights, and because of this I should be back in my apartment with my fur baby within a month.

    That was 2018!!
    I’ve been called derogatory names by adults some older then myself! I’ve even been told “why don’t you go back your reservation!”
    Some have repeated that and called me a derogatory stereotyped Indigenious word for woman starting with an “S”!!

    Because I love music, Felines, my family if I could talk to them again!! Hand drumming, singing, volunteering and attempt at learning languages
    Just being me, unlike being a town gossip with legs open and police record from when I was ??
    This is expected of me?!
    What kind of city am I in that excepts that as “ok Joe, you’re ok! I’ve got a an apartment for you!”
    Knowing full well that community could be put in danger by putting that person there, and no one disclosed it!!

    I’ve also learned that what my doctor and Neurologist were for me marijuana has side effects, mine that they trigger Epileptic seizures when my fur baby was with me he was sick a lot!!

    These hospitals where this city is have complaints especially, “I don’t know about Epilepsy!”

    What the famous one for being known around the Dionne Quintets??
    They still don’t know about Epilepsy! Emilie Dionne should have been that hospitals WAKE UP and get knowledgeable about Epilepsy!!
    But they did not, and have not!!

    If I want to sing, Bon Jovi’s song, “Who says You can’t go home?”

    Or …

    Thanks letting vent some people told me that it’s wrong to vent! It’s “Mental Health” to vent!
    How screwed up is that?!

    I was better before they made havok and tore my fur baby away under bogus reasons.
    Besides them breaking&entering and stealing since the day I put some boxes in my second apartment!


    Comment by Tabitha — August 1, 2022 @ 7:13 PM

  14. Another thing akin to bullying, not as overt as physical abuse or perhaps even intentional, but still quite debilitating: People close to you, friends or family, who use your epilepsy to explain away, for themselves, things unrelated but that would otherwise make their lives more difficult.

    For example: One time, I was dealing with cigarette smoke infiltration from a neighbor – and recall just how debilitating cigarette smoke exposure can be – but instead of helping me deal with the neighbor, someone close to me decided that I had “smell of burning” type epilepsy and my complaint was entirely my own epileptic auras, shaming me that I should “just admit the truth.” No medical doctor believes nor diagnostic indicates that I have that kind of epilepsy, yet this person was absolutely convinced, and pro-actively made sure other people believed it as well. It was simply easiest for this person to use my epilepsy as an excuse and justification/rationalization for their refusal to help, than to actually help someone they’d otherwise be expected to.

    That was a particularly extreme example, but there are many other cases in which people who are nominally colleagues, friends, family use your epilepsy and their poor- or mis-understanding of it, to explain away unrelated difficulties and put unrelated burdens on you, simply because it’s easier for them.

    I’m speaking entirely of a world of adults as well. I can’t imagine what schoolchildren must go through, not from other students, but from ignorant and lazy teachers, administrators, and so on.

    Liked by 1 person

    Comment by StopYourSericulture — August 31, 2022 @ 4:37 PM

  15. These ignorant people should be ashamed of themselves. Projecting YOUR condition and then trying to take ownership of the answer. That stinks.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 31, 2022 @ 4:50 PM

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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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