Epilepsy Talk

What Most Offends YOU About How People Treat Epilepsy? | September 20, 2021

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…

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31 Comments »

  1. Reblogged this on Disablities & Mental Health Issues and commented:
    Interesting read from someone with the condition. I’ve never named mine but your right ignorance & discrimination is common

    Like

    Comment by Kenneth — September 20, 2021 @ 10:59 AM

  2. Great topic, Phylis!
    You’ve covered so many of my experiences. But here is one that I constantly have to deal with. It’s that subtle lifting of one or both eyebrows when I gracefully tell someone that I have epilepsy and then they oh-so-politely back away and remember some appointment. After all I have been through, it used to anger me. Now it’s almost a form of entertainment. There are sometimes, however, that the anger will raise its head when they include the comment, “You just don’t look like someone who has epilepsy.” You know, I wonder what someone who has epilepsy is supposed to look like?

    Liked by 1 person

    Comment by George Choyce — September 20, 2021 @ 12:10 PM

  3. WOW !! I’m 61 now & have had seizures for all of 61 years. It all started at 5 months old, and i have been in doctors offices ever since, and where you have NO VOICE EARLY in what gets done for you, that more than likely WILL DETERMINE BRAIN GROWTH & HAVING A HEALTHY BRAIN after 10, 20, 40 & 61 YEARS LATER, YOU HAVE TO WONDER, What in the hell did they do to make sure you are a lifetime patient for neurologist to have JOB SECURITY & WEALTH with heavy wallets & purses, while you live YOUR SEIZURE LIFE with a very light purse or wallet, without the money in it, no job or career, & alike. Like the verse / line in the song says in COMFORTABLY NUMB ”The child has GROWN, the dream Is GONE. When I hear this song, it can fit in so much as a person from a child who has been having seizures and had been unconscious & in a seizure coming out of it NUMB but never comfortable but DEPRESSED & STRESSED from others never including you in the so called NORMAL WORLD, which where I am planning on being will never be like this world is going TO BE even as it is today. So never get use to what you are seeing & living now unless you are COMFORTABLY NUMB to it all. So yeah,, doctors could USE THEIR EARS MORE TO LISTEN TO ALL OF US, instead of using our brains as their toys and gadgets to abuse & torture while we live in a BONDAGE OF HELL & they could care less about that part at all, as they NEVER live or walk in our shoes. They can even try to imagine it when we see them 2 to 6 times a year. The younger you are, the MORE they need to abuse that brain, until you turn 50.

    Liked by 1 person

    Comment by James D — September 20, 2021 @ 12:24 PM

  4. I like your saying “stressed and depressed”.

    And yes, we’re considered to be both numb and dumb. After all, how could they say all those things about us, to our face, as if we were non beings?

    And as George said, many of us are considered and treated as non beings. People don’t want us to exist. We’re an inconvenience. More’s the pity for them.

    P.S. What happens after 50? We’re both well past that age!

    Like

    Comment by Phylis Feiner Johnson — September 20, 2021 @ 12:31 PM

    • Then you should know you are 1/2 way there or less to 100 years old, & they have less years now to treat you so they focus more at the under 45 year old crowd to get ALL their goals accomplished FOR THEM and the teens and younger that can do MORE damage to while their BANK ACCOUNTS for BIG HARMA & BIG GADGET INDUSTRIES & themselves grows like wild fires that you can never put out. I do not want to live to be 90 as my mom is now & I do not expect her to live to watch me die somehow, before she feels she can die knowing I may still have seizures when she’s gone. That’s why I trust God more than any neurologist with my life for the rest of my life. every one should read PSALM 118:8, as I am sure BIG PHARMA & MOST doctors hate that verse that reads,,, It is better to trust in the Lord than to have confidence in man. We who believe are to be the Holy Temple of Christ, not the property of the AAN, NIH, FDA & BIG PHARMA, who believe they can ABUSE our brain & brain chemistry for life.

      Liked by 1 person

      Comment by James D — September 22, 2021 @ 5:52 PM

  5. Real estate agent who was going to sell my house but instead gave me a seizure instead. After the seizure nothing no contact nothing

    Liked by 1 person

    Comment by Veronica Livermore — September 20, 2021 @ 1:09 PM

  6. It has been referred to as “the soft bigotry of low expectations”. People who act surprised that I managed to graduate from college at all much less get a PhD and then have a career as a professor. And then, when they are trying to not be totally insensitive, they heap praise on me for doing what I consider to be just the normal stuff of life (like going to college and getting a job) as if they are praising a puppy who has just mastered the art of house training. Such a good girl! You manage to live all by yourself!

    Liked by 1 person

    Comment by paleobird — September 20, 2021 @ 1:51 PM

  7. Excellent article…
    What hurts? Many things…
    This week; it’s the arrogance of many peoples ignorance. How can you offer what do to advise in something you’ve ‘never experienced’? I know you’ve studied the brain, neurology, looked at Lab studies, etc.
    But, please don’t tell me how to be me and that what i sense is not real (nerves have electric fields: true). Some people have “sensory awareness”.
    My recent psychiatrist said it is imaginary and based on anxiety; talk therapy will help.
    Really??
    I get more from guitar practice, silent moments, and physical activity.
    But then I’m just a client with Temporal lobe epilepsy.

    Liked by 1 person

    Comment by Robert S. — September 20, 2021 @ 4:05 PM

  8. 😦

    My talk therapist has been a saving grace for me.

    Through thick and thin. Bad drugs and suicide.

    If your recent psychiatrist isn’t doing talk therapy, just what the hell is he doing? Geeze, an epilepsy support group could do more for you than him.

    Dump the shrink and keep on playing your guitar! Obviously, it’s your own best therapy.

    Like

    Comment by Phylis Feiner Johnson — September 20, 2021 @ 4:50 PM

  9. interesting,have talked with many others on this but have not experienced a lot of it personally,To be different my own lack of knowledge on szs ,even though diagnosed I failed to read even a chapter on the condition! for over 15 yrs. This from someone who had 2 thousand books and read encyclopedias not comic books as a little kid, was my ignorance the same as some others?
    Have rarely if ever been offended,is also why I use the term sz. disorder instead of Epilepsy .If offended I suppose the general lack of basic knowledge with my neurologist at the V.A.,once I began knowing more his knowledge was very apparent, I had 3 back to back t.c. szs in his waiting room and had to be placed in a medical coma to stop them, WOKE THEM UP 🙂 was treated much differently after that and actually became friendly with him and discussed how I felt for the first time,it helped him more than me according to his nurse:)
    Have people hinting now I should not live alone 😦
    I usually underplay if asked about the amount of szs I have ,more to not scare them,and have been called a liar many times online if I tell someone the truth,
    Like many other medical problems I suppose just ignorance covers most of it. great imfo. as always thanks. “Peace Takes Practice” Rick

    Liked by 1 person

    Comment by wichitarick — September 20, 2021 @ 6:05 PM

  10. For most of them, they had to look like they knew what they were talking about before someone learned they were ignorant. When I saw some teenagers make fun of another kid having a seizure, I told them, “This only happens to him because his brain works twice as hard as yours.” That kept ’em quiet.

    At work, I heard a supervisor yell at my co-workers for standing around, doing nothing to help me. She said, “What are you waiting for? An invitation? Does the knot on his head not tell you he needs help? One later blamed me for getting embarrassed and I told him he didn’t need my help. I later talked the big boss into letting me train them and posting instructions in each unit.

    Liked by 1 person

    Comment by Ed Lugge — September 20, 2021 @ 7:54 PM

  11. I struggle a lot with imposter syndrome, as weird as that sounds. I have focal epilepsy and the meds take care of it, but I suffered many years believing they were panic attacks. I never got results on any tests so I often wonder if I really do have epilepsy. I have a schedule restriction at work and they often bother me about it, asking when the doctor will lift it. I feel so on the spot and uncomfortable; I feel like a liar because I’m the one who asked the doctor for the restriction, not the other way around; and because they never witnessed a seizure, I feel like a fraud.

    Liked by 1 person

    Comment by Hetty Eliot — September 20, 2021 @ 11:56 PM

    • Hetty, do you have auras? Because an aura is a simple partial seizure.

      Could you possibly have someone video you having a seizure?

      And as for EEGs. Many are not definitive because they only measure the surface of the brain.

      I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 21, 2021 @ 9:26 AM

      • I’m not sure if mine were classified as simple or complex partial. We never got there because the meds helped right away. I had the symptoms of the gastric rising, buzzing in my ears, losing awareness, deja vu and jamais vu. I don’t think there was ever anything to really see when I had them. I just had weird expressions on my face. After the 72hr ambulatory EEG when I had to go to work and show my face in public like that and had nothing happen, I’m never doing tests again.

        Liked by 1 person

        Comment by Hetty Eliot — September 21, 2021 @ 4:39 PM

  12. Never had a paid job with discrimination, what we now call hate crime in interviews, mobbed by joe publicwho panic at my seizures, with injuries and even broke my glasses once, mine’s uncontrolled and my neuros hate me as I’m a waste of time, I’ve been driven to suicideseveral times, don’t know how I survived, it’s difficult getting welfare benefits as they think as I’m conscious and functioning normally until I have a seizure I’m not disabled. At least my younger sis started seizures as a kid so our family was well used to it when I developed mine age 21 and supported me without mollycoddling me. I have cPTSD which could have caused it all but again, my neuros know nothing about it and won’t listen, it used to be linked to menstruation, told my male neuro who yelled me out of his office cursing about female fantasies!.. Help!!

    Liked by 1 person

    Comment by Gail Barry — September 21, 2021 @ 5:15 AM

  13. Oh Gail, and this too, which you probably know:

    Catamenial Epilepsy – Do You Have It? https://epilepsytalk.com/2021/05/02/catamenial-epilepsy-do-you-have-it

    Like

    Comment by Phylis Feiner Johnson — September 21, 2021 @ 10:11 AM

  14. This is my contribution from NZ.
    https://ewct.org.nz/we-are-removing-stigma-fear-and-prejudice-around-epilepsy/
    and
    https://ewct.org.nz/living-challenges-epilepsy/

    It appears that epilepsy is still a global problem because of the fear, stigma and prejudice in all of our communities around the world.

    Liked by 1 person

    Comment by Maria Lowe — September 21, 2021 @ 4:09 PM

  15. What bothers me is the job discrimination I have faced for more than 25 years. Almost every journalist job I applied for didn’t want to take me at first because I can’t drive. I paid for my own transportation just to show them that epilepsy doesn’t have to get in the way.

    Also, a huge pet peeve is when people talk slower to me once they find out. I am not mentally challenged; this is a neurological condition. I pulled back from taking assignments in one town when a “friend” asked if my boss has to type my articles for me. I replied that he wasn’t typing for me when I earned three college degrees and wrote for a daily paper in Phoenix as part of a national fellowship.

    I won’t even get into the job when my boss would provoke seizures by sneaking up behind my desk and pounding on it to induce seizures.

    Liked by 1 person

    Comment by Mary Ellen Gambon — September 23, 2021 @ 9:30 AM

    • GRRR…

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 23, 2021 @ 10:29 AM

    • Good Grief, Mary Ellen. Unbelievable what you have had to endure. Probably most of us have had to put up with what you have had to go through in one form or another. But you persevered gracefully. Way to go!

      As for the job you don’t want to get into, allow me to write that your former boss sounds like a total whack job and OFFENSIVE.

      Thanks for the way you have responded to your career challenges in such a positive manner. What an example.

      Liked by 1 person

      Comment by George Choyce — September 23, 2021 @ 10:30 AM

      • Thanks so much for your support. I know we all have experienced this, whether in the workplace or even by doctors. And yes, that boss was cruel. She would change my assignment while I was having a seizure so that when I completed the original assignment, she would tell the staff how stupid I was. I reported that, but I was told I should have gone to HR sooner if I had a problem. When I told them I was speaking to an attorney from the local Epilepsy Foundation branch, that’s when the action happened. I didn’t go through with a suit, but I let them know who was the boss, so to speak.

        Liked by 1 person

        Comment by Mary Ellen Gambon — September 23, 2021 @ 11:06 AM

  16. Mary Ellen, I’ll always have faith in you to do what’s right and stand your ground.

    You’re the best!

    Like

    Comment by Phylis Feiner Johnson — September 23, 2021 @ 11:09 AM

    • Thanks, Phylis! You have been such a source of encouragement as I have faced these struggles. I do have a positive thing about one of my present employers. We met at a community meeting. When he found out that I had been a reporter, he asked why I didn’t respond to his ad. I told him that the ad said “Must have car – no exceptions.” When I told him why I couldn’t drive, he said: I don’t give a SH*T is you have epilepsy! You’ve got chops! Send me your resume and three clips tomorrow.” Now it’s 4 years later, and I am still there. There is hope!

      Liked by 1 person

      Comment by Mary Ellen Gambon — September 23, 2021 @ 11:15 AM

  17. You sure do have your chops. Proven again and again.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 23, 2021 @ 11:43 AM

    • Thank you SO MUCH! It means the world to me!

      Liked by 1 person

      Comment by Mary Ellen Gambon — September 23, 2021 @ 11:44 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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