Epilepsy Talk

What most offends YOU about how people treat epilepsy? | April 14, 2023

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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  1. Hi Phylis your posts are superb as ever and very helpful for people with epilepsy and very truthful. Go raibh mile Maith agat. Ó Ciaràn

    Liked by 2 people

    Comment by Ciaran — April 14, 2023 @ 2:31 PM

  2. Very, very counter-intuitive, but the way in which we’re not allowed to have a legitimate mental illness i.e. the professional psych community offers nothing to us, and the greater community has no idea how to accommodate the cognitive quirks and miseries which are not always tied to seizures.

    Liked by 1 person

    Comment by Jeffrey Lee Hatcher — April 14, 2023 @ 4:59 PM

    • I was at a functional medine doctor office and started having auras. My husband was told to take me to the car ASAP .

      Another time I was at doctor office and had a seizure. The doctor did quick assessment and told my husband to take me to the car ASAP.

      My last employment was an office job and when I started having seizures my boss said since I can’t drive I won’t be able to meet my job requirement??

      When people at church found out I have seizures they treated me differently as if the devil took over my body

      I believe people do not understand epilepsy and witnessing someone having a seizure is very frightening.

      I remind myself there are worse diseases and physical illnesses that are more disabling.

      Liked by 1 person

      Comment by Deb — April 14, 2023 @ 7:29 PM

      • So poetic. And pathetic. Your words bring light yet glare at the same time. Reminding us that often our talents are buried under a mountain of misunderstandings and miseries.

        Thank goodness we are at least here for each other.


        Comment by Phylis Feiner Johnson — April 14, 2023 @ 9:44 PM

      • The funny thing is I worked as a nurse for over 30yrs then started having seizures in my early 50s. The interesting thing is healthcare doesn’t understand seizures and also afraid of it. One time in the early years my husband would take me to the ER and we had to wait for hours for me to have another seizure for them to treat me. Once I had a seizure the doctors asked my husband what to do?? We don’t go to ER anymore unless my husband tried everything to control my seizures. In the ER they look at me as if I am drug seeking?…OH WELL …I’m retired.👍

        Liked by 1 person

        Comment by Deb — April 15, 2023 @ 7:48 AM

  3. I have had many experiences over the years having epilepsy. Some were good, and some were terrible. In human nature, it is the bad experiences we remember the most. When I was working, I am semi-retired now. I came face to face with people in the workforce that were not sympathetic to people with epilepsy. I struggled terribly with holding down certain jobs. In most cases, and it was probably a determent to me, I told the H.R. where I worked that I had epilepsy. In some cases, it definitely helped me during my employment, but at other times, it seemed to put a stigma on me. I believe there wasn’t much expected of me. Sadly, some of those jobs didn’t work out. There were a lot of companies though, that really went out of their way for me, and I always appreciated it. Thinking back on it now, I wondered if I had made the right decision about informing my employers of my disability. After talking to several people involved with epilepsy, I believe I made the correct decision. It is truly sad how many people I encountered during my history of employment that just didn’t seem to care. Holding a steady job during that time was extremely difficult. Phylis is right, there is a lot of discrimination against people with epilepsy. I know, because I lived it, and still do.

    Liked by 1 person

    Comment by phoenix286da08ec323d — April 14, 2023 @ 5:01 PM

    • Phoenix, I had this quasi game of deception I played at work.

      “Deception” was an especially appropriate name for the game — because I was in advertising!

      I told one person in each situation that I had epilepsy.

      (I didn’t want to repeat a long-ago teen party when I passed out and everybody freaked out, thinking I was dead.)

      So I told a Marketing VP. It turned out, his son had epilepsy.

      I told an Art Director. Her husband had just had a seizure in the airport, the night before.

      I told someone in Finance. His cousin had just been diagnosed.

      Coincidence? You really think you know your coworkers. You really think they know you.

      Maybe. But that damn alien epilepsy can get you every time.


      Comment by Phylis Feiner Johnson — April 14, 2023 @ 9:56 PM

    • I also wonder if it’s better to not tell HR or your boss but it would be uncomfortable situation If you had seizure while working. My question is if a person had several heart attacks or other health problems that may interfere with work…Do they tell HR or their boss ? Would you be hired if they knew about your seizures or other health problems in advance? 🤔

      Liked by 1 person

      Comment by Deb — April 15, 2023 @ 5:24 PM

  4. WOW !!! This should be an ALL NIGHT COMMENT, but the reality is, You believe in God & Jesus Christ, you will be 1st JUDGED, 2nd PERSECUTED, 3rd MOCKED, 4th POKE FUN AT & HARASSED & 5th TOTALLY IGNORED from everyone for life. I have seen all of that happen over 55+ years even from the many who have epilepsy, where if they need NOTHING FROM YOU, don’t expect 1 thing from them, especially when you say what you started believing in as a kid, raised by others in your family to LOOK TO God & Jesus Christ, & Heaven FORBID !!! in those days if someone did not want to be around you, where family & friends you had then, were NOT there for you, as my GRANDMOTHER who I lost 43 years ago today, ALWAYS had my back & was a phone call away living 1 hour from me, BUT I did not have that problem, as my mom who’s now 91 was always there, & STILL IS as we talked about my grandmother today. Besides all of that neurologists, who like the 1 I have, TAKES ALL THE CREDIT for me being seizure free now for 17 months, YET if I AGREED to his wants & all he wished I had chosen to do, I’d be living with a RNS & maybe not been 17 months seizure free, BUT I MADE THE LAST DECISION & decided for XCOPRI, that HE BELIEVES he is accountable for all my success with 17 months seizure free, as I asked him that day on 3-30-23,, Who’s taking the XCOPRI that YOU wanted me to have the RNS ? He then went silent, as I gave him the credit for making XCOPRI my other choice. THEY DO NOT LISTEN to all the other struggles of LIFE IN GENERAL, even as you are living for HOW LONG ? a seizure free life, BUT 1 never knows when or WHY a drug may stop working for whatever reason, as for THAT I have never been promised a BACK UP DRUG or some other plan to make me seizure free to start another string of seizure free months IF A SEIZURE still is determined for me to happen. Then they will say A RNS, BRAIN SURGERY & anything else after something bad will happen BUT I ASKED Can I have an EEG done since being on XCOPRI for 16 months So to see if I have a normal EEG ? He did not say YES or NO, which tells ME they do not care about that IF I have a normal EEG maybe for the 1st time ever in the past 40+ years. THAT alone would give to me peace of mind maybe to think MY BRAIN IS WORKING BETTER & NORMAL since taking XCOPRI, and WHY would not any neurologists want to know that as I do as well ? Besides all of that above,, NOBODY LISTENS & NOBODY really cares WHAT we want to have in life, but maybe God & Jesus Christ & parents & grandparents who really would had traded places with me as they told me that in the 1970’s & 80’s until I learned to deal with it all the best I knew how, which was to LOOK UP for answers. Psalm 118:8 makes that clear to understand anything,, where people will never help or care to in any way at all.

    Liked by 1 person

    Comment by James D — April 14, 2023 @ 7:16 PM

    • Deb, actually by law, you are not required to tell a prospective employer that you have epilepsy. Nor can they deny you the job because you have epilepsy.

      However, many agree that it’s best to tell your employer after hiring.

      I disagree. See my little tale of deception, above.


      Comment by Phylis Feiner Johnson — April 15, 2023 @ 5:32 PM

    • AMEN. All we have to do is accept Jesus Christ/God into our heart/soul and ask for forgiveness . There will be an eternal place in heaven.No more sadness and no more pain. We will rest in peace forever. YEAH 🙏

      Liked by 1 person

      Comment by Deb — April 15, 2023 @ 5:35 PM

  5. I paid time and money for my first uni degree, teacher, epilepsy started half way through the course, but I finished with good results though I found that teaching and epilepsy don’t mix, age 32 went back for what the UK calls post graduate diploma, adding more skills to a specific part of your degree, I sailed through, finished top of the class, tried Masters, but the work place thought I was an idiot who couldn’t keep a job, use computers, dangerous, even voluntary charity shops, just before Covid, wouldn’t touch me, one manager told me I’m too dangerous to be left with the staff while he was off

    Liked by 1 person

    Comment by Miss Gail Barry — April 15, 2023 @ 2:04 AM

    • Successfully completing all of those degrees and then no work? And then, even worse, no respect? You deserve to be admired!


      Comment by Phylis Feiner Johnson — April 15, 2023 @ 11:11 AM

  6. Does anybody know where all the “donation” money goes relative to various epilepsy foundations in this country? I’ve yet to see anything on T.V., commercials, etc. I know some local organizations hold running races, cake sales, etc. But we need to have the national public learn about this life-altering medical condition.

    Liked by 1 person

    Comment by Roy Anthony — April 18, 2023 @ 5:21 PM

    • I agree with you completely.

      A lot of the Epilepsy Foundation money goes to educational resources, lobbying and advocacy.

      There’s a tremendous amount of competitive research.

      There are also support programs for just about anyone you can think of…general…kids…parents…public.

      I know that I help run a general support group and it’s invaluable for what it brings in the form of sharing, resources, problem-solving.

      I know many are not as lucky as me. But with the right local foundation, you can get help with finding a doctor, lawyer, educational program…etc.


      Comment by Phylis Feiner Johnson — April 18, 2023 @ 5:51 PM

      • Thanks for responding. It seems we’re not doing so well on lobbying. Other medical conditions get so much more. I think epilepsy is about 32%

        Liked by 1 person

        Comment by Roy Anthony — April 19, 2023 @ 5:00 PM

  7. People act as if they have never heard of Epilepsy.
    They will watch horror movies but then they are more freaked out when I have a seizure.
    Even when taught how to help they forget when they see a seizure.

    Liked by 1 person

    Comment by Bonnie — April 18, 2023 @ 6:59 PM

  8. Roy, in answer to your statement:

    There are 150,000 new cases of epilepsy diagnosed each year, and a total of more than 3.4 million Americans are affected by it.

    Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).

    In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.

    Pharmaceutical investment in epilepsy is less than in Alzheimer’s and Parkinson’s, and it’s expected to decline further over the next several years…

    The government invests $140-160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders…

    Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient from nonprofits.


    Comment by Phylis Feiner Johnson — April 19, 2023 @ 5:05 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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