Epilepsy Talk

Bullied Because of Epilepsy… | August 29, 2018

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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31 Comments »

  1. When I was in high school, a friend noticed my medic alert necklace. Looked at the necklace and expressed shock. She told me how awful it was that I was wearing such a necklace and that I always faked illness.

    Whew!

    Like

    Comment by Martha G — August 29, 2018 @ 1:58 PM

  2. hanging upside down on the horizontal bars in grade school; had one and fell to the ground; wonder I didn’t break my neck-teachers did not even ‘know’ what Epilepsy was; made me sit off to the side; thought I was just faking it………………………they should have been required to take a special class about Epilepsy- like I always say: wish I had a little ‘machine’ I could touch people with and it make them have a seizure so they honestly know what it is like

    Like

    Comment by Karen — August 29, 2018 @ 6:10 PM

    • That little “machine” or a magic wand would be wonderful.

      But, lacking them, we have to educate and advocate for ourselves.

      Easily said, but not so easily done, when you’re hurting.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2018 @ 6:52 PM

  3. Phylis, I enjoy all your articles. I wondered what you know about Trans cranial Magnetic Stimulation (TCMS) as a treatment for epilepsy, Complex Partial or otherwise. I have anxiety and different other levels of increasing phobias and depression. Today I learned that the Psychiatrist I see may recommend TCMS. So I thought I’d ask you what your experience, if any, has been with it or with others who have had the treatments. Thank you! Dixie Phillips

    Like

    Comment by Dixie Phillips — August 29, 2018 @ 8:40 PM

    • Transcranial Magnetic Stimulation

      TMS is a noninvasive type of brain stimulation which uses a strong magnet held outside the head to deliver electromagnetic currents to alter the electrical activity in the brain.

      This therapy has shown great promise for reducing seizures by reducing neuronal excitability.

      Some of the earliest studies found that transcranial magnetic stimulation can induce a prolonged period of protection from the types of electrical activity that cause seizures.

      Case studies have found that this technique can reduce seizure frequency by over 60% in some patients.

      In addition, researchers found that the TMS treatment also improved the mood of participants.

      Since depression is a common problem in people with epilepsy, this finding could have significant impact on the quality of life for people who suffer from the disorder.

      The most serious side-effect associated with transcranial magnetic stimulation is a headache, though there is a small risk of seizure during this treatment.

      However, this risk is low and this technique is considered to be safe.

      Dixie, I hope this helps.

      Like

      Comment by Phylis Feiner Johnson — August 29, 2018 @ 10:06 PM

      • SCENAR is another non-invasive stimulation good for both Depression, Epilepsy, and other disorders. My Functional Medicine aunt uses it on me. She has used it on my fiancèe too, who has mood issues, and a patient who had severe Parkinson’s. It helps a lot.

        Like

        Comment by trekkie80sgirl — September 5, 2018 @ 6:12 PM

      • WHAT is it? Please explain. I’m all ears!

        Like

        Comment by Phylis Feiner Johnson — September 5, 2018 @ 9:16 PM

      • It’s a type of biofeedback device it goes through the skin. Using your own body to help heal itself. It’s mostly used in Functional Medicine at the time, but you can go to the website for SCENAR about it and there is also a “health blanket” that helps people that is made along the same lines as SCENAR. My aunt gave my mother one and you wrap yourself up like a burrito with it, or at least the injured part if it’s like an injury or something else like a certain part of your body that needs that. SCENAR uses a cosmodic and my aunt plugs some ear ones into my ears that are made of volcanic ash to conduct the energy from the cosmodic. She does place them around the areas of the Vagus Nerve on the neck along with areas on the face that help with the healing. Here’s the website about how it works.

        http://www.scenar.us/cgi-bin/scenar/How_It_Works.html?id=VmfqcgV

        Like

        Comment by trekkie80sgirl — September 6, 2018 @ 2:13 AM

      • How neat! Thanks so much for the education!

        Like

        Comment by Phylis Feiner Johnson — September 6, 2018 @ 9:02 AM

  4. I was never bullied because of having epilepsy because being on-waking and nocturnal seizures I could hide it. Even now, 30 years later none of the people who currently know me, or the medics I see, have ever seen me have a seizure. But as a teenager the original drugs I was given (dilantin and phenobarb) triggered some dreadful mood and behavioral side effects, not something we were ever warned about nor were we ever told at the time it was the drugs- I was treated as a psych case-, and I was bullied and treated badly by my peers and the adults for that. So indirectly, yes.

    Like

    Comment by Katie — August 29, 2018 @ 11:28 PM

    • Dilantin made me a zombie. And I went toxic on it.

      That was in the days before checking blood levels and doses.

      As for me, epilepsy was my “dirty secret”. It wasn’t until I was older that I “came out of the closet”.

      Like

      Comment by Phylis Feiner Johnson — August 30, 2018 @ 8:19 AM

      • Phylis, oh yes, the toxic bit was fun, in the end I couldn’t take any more than 160mgs dilantin before my levels shot up. There just weren’t any other options at the time. Lamictal coming along was a lifesaver.

        Did you ever experience the mood/behavior side effects?

        Like

        Comment by Katie — August 30, 2018 @ 8:47 PM

      • Same with me!

        I’ve been on Lamictal for over 10 years and loving it.

        At first, the Lamictal made me hyper/crazy.

        But once I got over the initial “hump” and changed my bedtime dose to 6:00 PM, all was well.

        No side-effects and seizure-free for 10+ years.

        Like

        Comment by Phylis Feiner Johnson — August 31, 2018 @ 8:37 AM

  5. I guess being a late onset is a blessing! No bullying happened for this. In fact, I am eternally thankful every time for those who have assisted and kept me and my possessions safe. I have no idea who they are, but definitely angels in my books.

    Like

    Comment by Marlyn Borger — August 30, 2018 @ 12:12 AM

    • Angels are a blessing.

      So are those who help you when you were down.

      Unlike some of us, you were very fortunate, indeed.

      Like

      Comment by Phylis Feiner Johnson — August 30, 2018 @ 8:20 AM

  6. Hi I’ll be sharing my story in Boston Massachusetts and in Rome Italy 🇮🇹 at a International Conference! I’m very excited.I was Bullied by many people young and old ! This has to stop 🛑!! Epilepsy is a Disease!

    Like

    Comment by Deborah Harmon Ference — August 30, 2018 @ 10:51 AM

  7. I never had any events quite like these, but I’ve had to deal with some people who were afraid of Epilepsy and hide their fear in a way of physical or auditory bulleying. I’ve mostly had the auditory bulleying. But I just consider such remarks or actions as a sign of fear from that person, and do my best at trying to forget the events. But I would have to say that some have stuck in my memory, no matter what.

    Like

    Comment by David Jensen — August 30, 2018 @ 3:06 PM

    • Research featured in Harvard Mental Health Letter and published in The American Journal of Psychiatry looked at the damage that hostile words, and or yelling can have on a person.

      They found “words are weapons that can cause lasting wounds.

      The damage is sometimes more serious and lasting than injuries that result from beatings”.

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

      Like

      Comment by Phylis Feiner Johnson — August 30, 2018 @ 3:50 PM

  8. Some people a family member even doctors said and think I fake my seizures or yet make my self have a seizure. They even get mad when I get a seizure.

    Like

    Comment by Adela — August 31, 2018 @ 6:55 PM

  9. I went through lots of Bullying in school, and Epilepsy wasn’t my only health issue growing up. It’s been my longer-lasting health issue though. I had a desk shoved against my stomach by one of my classmates. A lot of the bullying was face-to-face verbal bullying though. My mother currently has been emotionally abusive with me. I haven’t been able to cope well with it living with my parents’ and brothers. I hope to move out soon though, as I have had physical reactions from the stress. My legs jerk occasionally, foot cramps, Raynaud’s phenomena, and more.

    Like

    Comment by trekkie80sgirl — September 5, 2018 @ 6:41 PM

    • All types of abuse — sexual, physical, and emotional (including verbal abuse and witnessing domestic violence) raise the risk of depression, anxiety and epilepsy-like symptoms.

      Research featured in Harvard Mental Health Letter and published in The American Journal of Psychiatry looked at the damage that hostile words, and or yelling can have on a person.

      They found “words are weapons that can cause lasting wounds, especially when wielded by parents against children. The damage is sometimes more serious and lasting than injuries that result from beatings”, say Harvard researchers reporting on a survey.

      And 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.

      Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress.

      As you may imagine, it’s responsible for several stress-related changes in the body which also may influence seizure activity.

      Negative emotions related to stress, such as anger, worry or fright, may also cause seizures.

      This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin.

      You’ll probably find that you have more seizures during or after periods of anxiety or stress.

      Like

      Comment by Phylis Feiner Johnson — September 5, 2018 @ 9:24 PM

  10. So sad that most people have lost their basic humanity.

    Like

    Comment by juniorsplaceofhope — September 8, 2018 @ 12:45 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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