Epilepsy Talk

Bullied Because of Epilepsy | January 30, 2016

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?

References:

http://epilepsyassociation.com/epilepsy-patients-tell-of-horrific-bullying/

http://talkaboutitorg.ning.com/profiles/blogs/bullying-has-to-stop-we-have-to-help

http://www.ncbi.nlm.nih.gov/pubmed/19631586

http://www.aboutkidshealth.ca/en/resourcecentres/epilepsy/athomeandatschool/epilepsyandqualityoflife/pages/epilepsy-and-social-adaptation.aspx

http://my.epilepsy.com/node/969952

http://www.ct-ea.org/personalstories.html

http://www.healingwell.com/community/default.aspx?f=23&m=2429218

http://www.epilepsyfoundation.org/give/paulrothbein.cfm

http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/backtoschool.cfm

http://www.ncype.org.uk/all-about-epilepsy/your-stories/11279-jonathan-solomon-story

 

 


27 Comments »

  1. Another form of abusing those who suffer epilepsy remains quite secret, and subject to major damage control, and concealment. That other form of abuse being, the exploitation of children for unauthorized classified lobotomy and brain implant experimentation, without informed consent, nor parental knowledge, while under the guise of treating epilepsy, (ie-“scar tissue removal”) I was only 14, on Dec. 9,1969, when bullied into a operating theater and subjected unauthorized lobotomy, along with the trespass of 43 metallic implants in the cerebral cortex. This information not only correlates with Manchurian candidate developmental research, according to The Mind Stealers by Samuel Chavkin, and The Mind Manipulators by Alan Scheflin, it also correlates with the CIA MK-ULTRA project of psychosurgical and brain implant research upon unwitting subjects. Those subjects being myself,and other unwitting children who suffer epilepsy at the Toronto Hospital for Sick Children. Butcher Neurosurgeon Dr. Harold Joseph Hoffman is noted for having 15,741 children under his care between 1964-1998. It would be fair to suggest that anywhere between 20-75%, have been subjected to unauthorized brain surgical research. (3-10,000 children) Such children, that have no access to the courts, nor advocate to address such breach of the criminal code, and international law such as the Nuremberg Code. More disturbing, on how this assault and battery is acceptable with our Epilepsy Associations. How is it, when it come to abuse of those who suffer epilepsy, the greater harm and mutilation by our medical profession, is subject to major damage control and concealment? It’s hard to sleep, when I have a HSC Patient Advocate inform me of a “on-going problem”. Terry http://www.thewhyfiles.net/mkultra4.htm#update

    Like

    Comment by hscguineapig414895 — January 30, 2016 @ 8:08 PM

  2. OMG. Such abuse is not new to my radar Terry, not that it’s a comfort.

    Take a look at the article “Who’s at Fault?” and you may find people who have been in the same boat as you.

    Sinking swiftly.

    https://epilepsytalk.com/2015/12/14/whos-at-fault-2/

    Like

    Comment by Phylis Feiner Johnson — January 30, 2016 @ 9:13 PM

  3. lost friends because of seizures ans also they told to go back where i come from which is Canada. so now nobody talks to me even my own son.

    Like

    Comment by jeannine lavigne — January 31, 2016 @ 9:54 AM

  4. It’s so painful, their ignorance and your helplessness.

    I’d say find real friends, but you can’t find a new family.

    Like

    Comment by Phylis Feiner Johnson — January 31, 2016 @ 10:06 AM

  5. I was bullied by my family when I had epilepsy my mom would ground me for having a seizure and she even accused once of faking it. I have since had a brain operation and am doing well but my realtionship with my mom has never been good. In my 30’s I had flash backs of a women shaking a little baby. I know I was that baby and my mom was the person shaking me. I could not see a face in the flash back but my gut feeling is pretty strong and accurate.

    Like

    Comment by Jill Whiting — February 7, 2016 @ 5:54 PM

    • Basically, abuse releases a cascade of stress hormones which produces a lasting effect on brain signals.

      Experiments at McLean Hospital, for example, show that patients with a history of abuse are twice as likely to show abnormal electrical activity as non abused people.

      And this abnormal electrical brain activity, in turn, resembles a seizure state, but doesn’t actually produce epilepsy.

      Hippocampal Sclerosis

      This is a very common (but often unknown) feature of temporal lobe epilepsy.

      Changes in the hippocampus — the part of the brain that deals with stress, learning and memory — can be caused by hormones flooding the brain during and after a stressful episode.

      But the BIG question is whether hippocampal sclerosis is the consequence of repeated seizures, or whether it plays a role in the development of the epileptic focus?

      Like

      Comment by Phylis Feiner Johnson — February 7, 2016 @ 7:13 PM

  6. I had a teacher my junior year in high school who would tell my classmates, according to a friend, that I was “doing the attention dance again and please ignore her.” As if it weren’t embarrassing enough to be having the seizures, she had to make them worse. To this day when I see the teacher I cringe and have to turn the other way or else I will vomit.

    Like

    Comment by Lenalou — May 12, 2016 @ 4:56 PM

  7. Vomit ON her. She deserves it!

    Like

    Comment by Phylis Feiner Johnson — May 12, 2016 @ 5:10 PM

  8. Being bullied is an awful experience! Having Epilepsy and being bullied is also awful! I got bullied at my job. I worked at a non-profit, taking care of people with special needs. My assistant director called me a retard! In front of the individuals we work with. She got me upset for using the word! And where she said it. There was a big fight. Yelling back and forth. I called my boss and told him what happened. Another staff tried to come in on it. I asked her to leave the room and she said I pushed her. I taped her to leave room. They called police and made me leave work. I was going to be fired but I told them I would sue! They put me out on Short Term Disability then laid me off. So I got Disability. I have also been bullied online in the Epilepsy community. I try to keep my groups bully free!

    Like

    Comment by epilepsyadvocacyblog — July 5, 2016 @ 5:40 PM

  9. Bullied at a non-profit, taking care of people with special needs. That’s incredible. Sometimes truth is stranger than fiction.

    The only time someone said something derogatory on this site, I decided to publish it, just to shame the guy.

    He was talking about some stupid “Jew” doctor and I replied that there would be no racist, denigrating, negative name calling tolerated at this site.

    Then, I calmly told him I was a “Jew”.

    You should have seen the other members jump all over him.

    My Epilepsy Talk family. They rock! 🙂

    Like

    Comment by Phylis Feiner Johnson — July 5, 2016 @ 5:58 PM

  10. I am sorry to hear of all the horrible bullying and stigmatisation it makes me very sad.I have epilepsy since a baby from a brain tumor I was born with. I was bullied in my job after a bad seizure I was put into a room on my own and not allowed out on to the office floor to mix with others. Nobody would even look at me or speak to me i was totally isolated for months until I got bad anxiety and was fired on sick leave. People do not understand epilepsy especially complex partial seizures.The media paints a particular image of epilepsy. People have this image and often label other people as drunk or mentally ill if they have seizures. I was fired from my job even though I was good at it they said ” i did not want to work there”. It is also an ongoing challenge and endless battle to educate people about epilepsy and its only AFTER a seizure that people’s behaviour changes towards you and you get insidious remarks . People think you should be able somehow to control it . Somehow you have to prove yourself as worthy of being treated equally…. but people say OH NO THATS ALL YOU ..stigma does not exist whilst their comments and actions smack of discrimination , stigma and ignorance. I have had it with stigma and bullying.

    Like

    Comment by Claire — July 17, 2016 @ 6:05 PM

    • That is a job for a union even if you not a member you can still ask their advice or an outside body like citizens advice or some other organisatition like it the epilepsy society may have literature they can send legal literature out to you

      Like

      Comment by Sharon — March 9, 2017 @ 1:27 PM

    • yes Claire i was even fired from a job .found out there were others on the job ,not only with epilepsy, but some with heat attacks , diabetes , you name it , asked if they ever told/ wrote down on application for hire , all said no , none of the companies business ..even the boss’s husband had a heart attack while working .. never fired . went to “Fair Labor board ” & won my case .. they ended the business .. but , was working Retail , for about 8 yrs , during this time frame , i told them of my seizures , had a few on the job .,. but during the job , went to full time assistance, in jewelry , went by the book , too , one day was assisting one customer , had a seizure , dont remember putting anything on hold but they fired me for a discounted item . prior to a sale .. i told them flat out , never remember putting nothing on hold ..never went back to the store ..heard the boss of that dept , wanted me out from another supervisor

      Like

      Comment by Cathy Flowers — April 2, 2017 @ 10:01 AM

  11. Claire, what did you do when you were fired from work? By law, they can’t simply fire you because you have epilepsy.

    Epilepsy, Employment and the Law

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

    Yes, I agree, the way epilepsy is depicted to the public (TV, movies, etc.) only fuels the fire.

    Education is the key. But, as you say, it’s easier said than done.

    The only thing I’ve been able to do is try to explain what a seizure is when I have one, tell people how easy it is to help and try to use the circumstance as a means of education.

    And watch to see who heads for the hills. 😦

    Like

    Comment by Phylis Feiner Johnson — July 18, 2016 @ 9:38 AM

    • Thank you for your reply its very supportive.

      I agree ,people seem to be able to sense a vulnerability and often use it against you whether it is for power or pure malice but there is always a motive.

      Epilepsy just hands people a weapon which they would not otherwise have at their disposal.

      I have sought legal advice and they also refused then to give me reference i.e an oral one .

      I will keep you informed.

      I agree the key is education and for people to speak out.

      i plan to speak out when this is finished .

      thank you for your message Phil.

      Like

      Comment by Claire — July 18, 2016 @ 9:50 AM

  12. Claire, please pursue the legal angle and, if possible, seek out legal consul.

    FREE Legal Resources

    https://epilepsytalk.com/2010/09/19/free-legal-resources/

    If necessary, consult your local Epilepsy Foundation for a referral. I think they’ll be able to help you at least that far.

    And please do keep me posted…

    Like

    Comment by Phylis Feiner Johnson — July 18, 2016 @ 10:42 AM

    • Thank you for your message. I will keep you posted and i think your website is great.

      Like

      Comment by Claire — July 18, 2016 @ 11:04 AM

  13. Claire, Anything I can do to help…any time!

    Like

    Comment by Phylis Feiner Johnson — July 18, 2016 @ 11:58 AM

    • Thank you so much , I will keep in touch with you.

      Like

      Comment by Claire — July 18, 2016 @ 1:16 PM

  14. Please do, Claire.

    Like

    Comment by Phylis Feiner Johnson — July 18, 2016 @ 2:15 PM

  15. Joy’s school wouldn’t feed her because her mom put her seizure meds in her food.

    Like

    Comment by Sherry Kendall — March 9, 2017 @ 9:11 AM

  16. IT wasn’t so much my epilepsy though they did call me retard spastic mental & mong , but it was my stammer I used to be mimicked my hair pulled spat at the teachers witnessed all this but chose to ignore it was not until a dinner lady told my mum as I was threatened with worse torment & beatings up if I told any one I hated school it carried on in the work place npby people who should know better manager supervisors etc they soon learned if I swear or get angry I don’t stammer really good when people are unjustly are laying into you verbally or physically I don’t take it any more i tell them very fluently to P—S Off

    Like

    Comment by Sharon — March 9, 2017 @ 1:19 PM

    • Sharon, what an ordeal. Glad you “fluently” got to tell people to “P–S Off”. That much they should understand.

      Sounds like you’re not one to be trifled with! 🙂

      Like

      Comment by Phylis Feiner Johnson — March 9, 2017 @ 4:17 PM

  17. Erased.

    Like

    Comment by Phylis Feiner Johnson — March 9, 2017 @ 4:19 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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