Epilepsy Talk

What Most Offends YOU About How People Treat Epilepsy? | September 1, 2018

I call epilepsy the “stealth disease,” 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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66 Comments »

  1. The horrified look on other people’s faces and their talking to you as if you’re somehow to ‘blame’ should they witness a seizure; even medical professionals. Other’s decisions to keep you out of their lives. Being wrestled to the floor by an RN whilst I couldn’t speak and having her force a tongue depressor into my mouth. I reported her to the PCP, who had called an ambulance on me and changed doctors immediately.

    Like

    Comment by Judy Browne — September 1, 2018 @ 1:14 PM

    • A tongue depressor in your mouth?

      Where did her degree from? A Cracker Jacks box?

      One would think that, of all the people, she should know better.

      Wrong! 😦

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 1:46 PM

  2. My son has had E since he was 7 and at first he only had small episodes that were not noticeable. He would just lose his words sometimes and then start back up where he left off. When he turned 13 he began having simple partials and then at 15 began having full on nocturnal seizures. It has been a challenging road for him.
    Often when his friends saw a seizure they would go out of their way to not be around him anymore. They didn’t want the responsibility of helping him. He lost some of his friends along the way which was hard for a mom to watch.
    Some of his friends have really been a blessing and we are grateful for those special ones!
    He just started college and is making new friends which will hopefully be more mature and understanding.
    Having E doesn’t mean you are weird or stupid or a psycho, it is unfortunate that they are treated like that way too often.
    Praying for a real cure for all who are affected by E.

    Like

    Comment by Tami — September 1, 2018 @ 2:09 PM

    • I think the avoidance is fueled by fear and ignorance.

      And the truly bright, brave ones are those that stick by us.

      More easily said than done.

      But I’m glad to hear he is prospering among those who are mature and wise enough to understand.

      As you said; sometimes it’s just a matter of growing up.

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 2:18 PM

  3. Phylis, thank you for once again taking on the issues associated with epilepsy that so few will bring out into the open. The “Invisible Disability” portion of epilepsy for me is the part of our condition that is so difficult. “You look so healthy that you can’t possibly have epilepsy,” is what I have been told over and over. This usually follows on the heels that seizures are so often portrayed negatively and inaccurately through some of the entertainment media. For example, the recent movie “After the Party” has a character named “Seizure Boy” who others make fun of. I experienced this as far back at 2009. When I began to have complex partial seizures in public, no one knew what was going on. Once it was medically diagnosed that I had epilepsy, one woman I knew asked, “George, would you want your children or grandchildren to see that?” It’s almost as if we can be talked to or treated as second class. Even this past week – though the details are certainly not completely available – the actress Vanessa Marquez was shot and killed by police after she had a seizure … as if that was acceptable.

    Like

    Comment by George — September 1, 2018 @ 2:51 PM

    • “Would you want your children or grandchildren to see that?”

      At least you’re not like Chris — whose parents threatened him with a vasectomy, if he dared to have another child.

      Small comfort. But true.

      You don’t LOOK like you have epilepsy.

      Maybe we should wear a scarlet “E” on our forehead, so everybody knows and can get out of our way.

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 3:57 PM

      • I tattoed myself a purple Star of Life at my wrist with the E word and an emergency number, but while some poeple find it useful, some people have laughed about it…

        Like

        Comment by César Ocampo-Ramírez — September 4, 2018 @ 2:31 AM

      • I think it’s a matter of choice.

        If they laugh at you, that’s their problem.

        Like

        Comment by Phylis Feiner Johnson — September 4, 2018 @ 10:24 AM

  4. I know about the friend situation as my mother went behind my back and told every moving creature to watch over me and as a result, everybody thought they were superior standing beside me. Are families can be our biggest enemy.

    Like

    Comment by Jill Whiting — September 1, 2018 @ 3:10 PM

    • My parents treated me like a pariah and wouldn’t even mention the “E” word.

      My step-father (who was a surgeon) said I had “uneven brain waves”.

      My step-mother (who was a therapist) kept yelling: “what’s wrong with you”?

      And these are those who are fabled to love us most.

      Not that it’s any better than being treated like damaged goods, as I guess you were.

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 4:02 PM

  5. The fact that some people think Women with Epilepsy shouldn’t have kids too, my fiancèe’s family did suggest I get my tubes tied or he have a vasectomy when they met me, people have had perfectly healthy babies while living with Epilepsy. I don’t need birth control or anything that goes against God’s will in my body. I don’t believe in any form of abortion, chemical or otherwise. It goes against my Catholic beliefs.
    Also all the misconceptions often bother me so I have tried to get rid of the stigma as much as I can when I can educate people about it.

    Like

    Comment by trekkie80sgirl — September 1, 2018 @ 4:29 PM

    • To try to dictate someone’s having children is unforgivable, regardless of what your beliefs are.

      But you’re taking the high road — to advocate and educate — and I think that’s the thing that’s so noble.

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 4:49 PM

  6. Being told I cannot stack shelves in a shop due to being a risk to the public. Told I cannot go swimming incase I upset someone. Having people walk away rather than just be with me and that’s not even for full on seizures. Fighting the system for years for help. Pip people assuming I can do everything all the time when I can’t. Ignorance in the workforce on the train on the street.

    Like

    Comment by Sarah murray — September 1, 2018 @ 5:06 PM

  7. I live in south suburban Chicago and professionals in law enforcement and human services are so ignorant that my guess is all epileptics are on a watchlist. They view epileptics as mentally ill and, possibly, use them as targets in training exercise along with those who are truly mentally ill.

    Like

    Comment by Susan — September 1, 2018 @ 7:33 PM

    • Now THAT is sick.

      Happily, my local Epilepsy Foundation has a program where they go to schools, hospitals, human services and public services (not so much for public services, where they are seldom invited) to educate them about epilepsy and first aid.

      But, I must admit. They’re a remarkable group.

      Like

      Comment by Phylis Feiner Johnson — September 1, 2018 @ 7:56 PM

      • The employees at the Epilepsy Foundation in Chicago do whatever law enforcement/human services tells them to. Many anti-convulsants, such as Lamictal, are also used for psychiatric disorders. Chicago law enforcement/human services include epilepsy with those disorders. Beware of the drugs you take.

        Like

        Comment by Susan — September 2, 2018 @ 2:13 AM

      • That’s sad.

        But thanks for the tip.

        I hope it’s not like that everywhere.

        Like

        Comment by Phylis Feiner Johnson — September 2, 2018 @ 10:35 AM

  8. What really bothers me is when people are simply afraid to ask questions, and learn more.

    Like

    Comment by Paul Harris — September 1, 2018 @ 7:55 PM

  9. Today my thoughts along these lines are the ignorance, stupidity and blindness of the sorry cop that shot the woman having the seizure who had a BB gun. Lord I hope they turf him off the cops after taking away his gun. I am not an anti-gun person – it is not about that. In fact I have a BB gun, rifle and shotgun. The BB gun looks like neither of them in any way.

    Like

    Comment by Kate Jacques — September 1, 2018 @ 9:57 PM

  10. After having a break-thru seizure at work after becoming overheated working on a very hot summer day and getting dehydrated, I got to enjoy my co-workers making jokes about “giving me something to bite down on”, or “shouldn’t you be wearing a crash helmet or something?” At the time I worked at a commercial construction job with a mostly male crew, so you can imagine what they offered up for me to “bite down on”.

    Like

    Comment by Jennifer Barrington — September 3, 2018 @ 9:49 AM

  11. Not being promoted at work because it would put me more in the public eye and I might have a seizure!

    Like

    Comment by Mark Thompson — September 3, 2018 @ 11:50 AM

  12. I find that the side effects of my medications caused my personality to completely change my personality. Keppra rage is just one case in point. Wow, I became a raging person looking for an argument with almost anyone especially the medical community because deep inside I knew something was wrong but didn’t know how to fix it. Thank God I learned about the problem and was put on a different medication. Still other meds caused other issues. Finally, I am doing really well with what I am taking now.
    I feel like I’m back to being more of who I really am. Still deal with seizures and cancer, sadly even Christian “friends” who I hoped to find support and encouragement have turned their backs. They just can’t deal with the my disability. I have found a wonderful support system elsewhere. Wishing for the kingdom of God to grow in the Body of Christ.

    Like

    Comment by Nancy — September 3, 2018 @ 12:59 PM

  13. Phylis, your insight into some of the Christian community’s view on epilepsy – or disability for that matter – is quite revealing of the Christian community. I can write this with the integrity of being a priest in the Episcopal Church. I have often had to undo the damage of slander that Christians have given to those of us who have seizures. When I tell my story of having epilepsy, that is where that line “you don’t look like you have epilepsy” always arises. Glad that Nancy has found a support system elsewhere. Sad that it was outside of her Christian “friends.”

    Like

    Comment by George Choyce — September 3, 2018 @ 5:16 PM

    • George, I know about your background and commitment. And I feel this is probably against everything you believe in personally and encourage your ministry to do.

      But you are a remarkable Christian and not everyone can follow your example.

      Like

      Comment by Phylis Feiner Johnson — September 3, 2018 @ 6:12 PM

  14. I feel sad that my daughter’s fiancee won’t let me keep his daughter overnight even though my husband would be home with us.So I fear if they had my grandchildren he wouldn’t let me keep them either.I feel like children should be taught how to help someone are get them help.

    Like

    Comment by Angela carter — September 3, 2018 @ 9:59 PM

    • What an insensitive jerk.

      He’ll teach them ignorance and discrimination.

      Is that the kind of future HE wants?

      Furthermore, I strongly feel that the special bond between grandparents and grandchildren is irreplaceable.

      And to deprive someone of that special relationship is criminal.

      (Can you tell I feel just a little bit passionate about this?)

      MY grandfather was the only one who believed in me.

      He was the one who told me I could be anything I wanted to be and didn’t treat me like a pariah.

      Without him, I feel I would have perished.

      Or, at least, not turned out to be who and what I am.

      Like

      Comment by Phylis Feiner Johnson — September 3, 2018 @ 10:59 PM

    • I hope your daughter realizes what kind of a man he is. My exhusband was alot like that. My kids enjoyed a wonderful relationship with their step-grandparents, much to his chagrin.

      Like

      Comment by Marlyn — September 7, 2018 @ 12:16 AM

  15. That ignorant coworker that accuses you of faking seizures to get out of a closing shift, or just to get out of work early. Management doing literally nothing about it since they didn’t see the incident first hand.

    Not being able to progress and climb the ladder at work, despite multiple degrees that I’ve earned and a vast work experience. Oh no we can’t have an epileptic on the floor!

    Absolutely infuriating

    Like

    Comment by Sierra — September 4, 2018 @ 2:36 PM

  16. I play gospel music and sing at a church had a seizure and the preacher tried to drive a demon out of me i wont go back to that church

    Like

    Comment by Marsie neal — September 5, 2018 @ 5:19 PM

  17. When other people with epilepsy treat me like my condition is “less” than theirs because I choose to be, work towards and am successfully high functioning. When other people with epilepsy don’t believe I have epilepsy because I “do things”.

    Like

    Comment by Tremors — September 5, 2018 @ 8:13 PM

    • That’s why I call epilepsy the “Stealth” disease.

      It creeps up when you’re least expecting it and nobody else can see it.

      (Until, of course, the seizure begins. Then, they often run for the hills.)

      But “you don’t look like you have epilepsy.” Because you’re successful and an achiever.

      Can-do is you and to hell with the rest of them.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 5, 2018 @ 9:29 PM

  18. A husband divorces you a year after your first seizures diagnosed as idiopathic after 15 years of marriage and tells your parents that he doesn’t know how to help you. You find out many years later from your parents that he told them this…

    Like

    Comment by Andy — September 7, 2018 @ 4:51 PM

    • Sigh. So much for “for better or for worse..” 😦

      Like

      Comment by Phylis Feiner Johnson — September 7, 2018 @ 4:54 PM

    • Another part of the “sigh” to go along with what Phylis wrote – “in sickness and in health … ” There is no asterisk in that part of the marriage vow when it comes to epilepsy.

      Like

      Comment by George Choyce — September 7, 2018 @ 8:41 PM

  19. My biggest gripe is still with employers, even though I’m now long out of the job market. I can remember the days when disability discrimination was still perfectly legal and once I was sacked specifically for having epilepsy. These days they have other ways to get you, despite not legally being able to ask directly on job applications they word it in such a way that if it’s found out later they can sack you for lying on the application. But of course, say E and you’ll never even get an interview.

    There’s still the odd person around who, when I tell them I have E suddenly look at me like I’m going to fall flat on my face there and then! I’ve had one encounter with a Fundy Christian about 30 yrs ago who tried to exorcise me (she was so indoctrinated there was no reasoning with her) but otherwise I’ve never had any real problems aimed directly at me. I have got pretty angry at people thinking they’re being funny spouting off epilepsy “jokes” (especially sitting next to me and not knowing I have it), or joke about any disability, and I will always make it clear to them that is not acceptable.

    My ongoing gripe is the way epilepsy is often treated in medical dramas/soaps. The number of times an “known epileptic” is rushed into ER and it’s ALWAYS been because they stopped taking their meds. I’d love to know who these show’s medical advisors are because that is for the most not reality.

    Like

    Comment by Katie — September 7, 2018 @ 10:46 PM

    • Katie, you might find these articles interesting:

      Epilepsy, Employment and the Law

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

      Epilepsy in Movies and TV

      https://epilepsytalk.com/2017/05/23/epilepsy-in-movies-and-tv/

      Epilepsy in Twitter Times

      https://epilepsytalk.com/2012/06/04/epilepsy-in-twitter-times/

      Like

      Comment by Phylis Feiner Johnson — September 8, 2018 @ 10:11 AM

      • Thanks for those Phylis. The movies & TV link was interesting. Would you believe that after 30 years and even spending time with a lot of people with epilepsy, I’ve yet to see a tonic clonic seziure in real life? Plenty of other sz types though! because of that I always assumed for years the acted ones were quite simliar until a nurse friend told me they weren’t even close, and a lot of them are overacted for dramatic effect. Because I have TCs I’ve deliberately never watched videos of real ones because I’d still prefer not to know what I look like if I don’t have to.

        Like

        Comment by Katie — September 8, 2018 @ 6:33 PM

      • The first time I witnessed a tonic clonic was on a train platform in Penn Station, NY.

        I was with Mary Ellen and people were standing around wanting so badly to help, but not knowing what to do.

        We swiftly went into safety mode, while telling someone to call security and 911.

        Security was wonderful as we ministrated to the poor (homeless) woman who was trying to get up (while her eyes were rolling back in her head).

        It was terribly frightening, even with us knowing what to do.

        And it gave me some insight into why people ignore, walk away or other less savory things.

        Anyway, Emergency Services from Langone Medical Center came (probably one of the best epilepsy centers in the US).

        And I was over joyed as I watched the medics with their kind attitudes and behavior.

        Like

        Comment by Phylis Feiner Johnson — September 8, 2018 @ 10:09 PM

  20. Imagine having epilepsy and being on the autism spectrum at the same time (having some speech, but not enough to describe anything in detail, or carry on a conversation). My biggest complaint is the isolation that occurs for those who have disability in the family. No family members ever invite you for Thanksgiving, Christmas Eve, or any other events. You do everything alone, or with other families who have disability. Many of you have had unkind words expressed to you. With autism/epilepsy you won’t receive any words at all from your family.

    Like

    Comment by Martha — September 8, 2018 @ 12:01 PM

    • The isolation is pure ignorance and fear of the unknown.

      But that can’t replace the effort of trying to understand. And the reason to accept and embrace.

      Like

      Comment by Phylis Feiner Johnson — September 8, 2018 @ 12:57 PM

  21. Someone at my workplace made a joke about a flickering light setting me off (even though I don’t have light sensitive epilepsy) He quickly got slapped down by fellow co-workers.

    Mostly my experiences have been positive, friends and family were a bit over protective when I first got diagnosed, but now they rarely mention it, mainly because my seizures are well controlled, I suspect.

    Some people assume it’s a mental illness but I really don’t care about their opinions, anyone who is negative towards me gets cut ruthlessly out of my life. I’m very lucky I suppose that the people I care about most in my life, are completely accepting of my condition, so I don’t have to make the choice to avoid them.

    I feel really sorry for people whose own families are not supportive, that must be so tough.

    Like

    Comment by Shelly — September 10, 2018 @ 5:20 AM

    • I love the part about the joker being slapped down by co-workers.

      You do indeed have an “aura” of love and acceptance surrounding you.

      And that, as you know, is a blessing.

      Like

      Comment by Phylis Feiner Johnson — September 10, 2018 @ 10:54 AM

  22. My doctor told me ptsd where i have died so many times just another. Promble to deal with

    Like

    Comment by Marsie neal — September 11, 2018 @ 7:18 AM

  23. The one thing I hate the most is when I’m going into a seizure in public and can overheat someone saying “she must be on drugs” and I am unable to reply because I’m about to black out into a Tonic Clonic. Or having family members tell me it’s a spiritual religious issue and not a health issue. Thank you for posting. It means a lot to me. Be sure to check out my new blog if you don’t mind. It’s called “That One Girl” and it’s an interesting point of view on my life as a person with epilepsy, pre and post brain surgery, developing Bipolar I Disorder due to that, and much more. “That Girl Behind Me” by That One Girl https://thatonegirlmandy.wordpress.com/2018/09/26/the-girl-behind-me/

    Like

    Comment by Amanda Krzywonski — September 26, 2018 @ 7:26 AM

    • I just finished reading “That Girl Behind Me” and it’s brilliant.

      The way you take readers to the scene and into the person’s head at the same time, as she seizes…

      To be both places at once and be able to describe them, is a rare talent.

      And to actually explain epilepsy at the same time is amazing.

      You’ve really turned epilepsy on it ear. From suffering, to talent, and I admire you.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 26, 2018 @ 9:45 AM

      • Thank you so much for the feedback and I am happy that you see my main goals of speaking in third person for this writing. It seems as if we are running out of ways to show this world what is truly going on during the event of a seizure. If we can somehow catch them in these situations and teach them what is truly happening, maybe we can make a change. I look forward to hearing from you in future posts and I am definitely going to be following you!!! I wish you a beautiful weekend 💜.

        Like

        Comment by Amanda Krzywonski — September 27, 2018 @ 9:18 AM

      • Once again, BRAVO to you!

        I was so impressed by your article that I told my husband about it.

        (He’s a writer, too.)

        Like

        Comment by Phylis Feiner Johnson — September 27, 2018 @ 10:27 AM

    • This is sad, I had to face a simmilar situation when I was at the university and I started to feel auras once, I told to my teacher and they took me to the medic center of the university, and althought I told them I was already diagnosed with epilepsy, they made me take this urine test drugs… at the moment I didn’t realise what was going on, luckily my family arrived and took me home (i had a grand mal in the car).

      After that I started to wnder why would they make me take a drug test… and the weirdest thing is I remember they told me I gave positive for all drugs…

      Liked by 1 person

      Comment by César Ocampo-Ramírez — September 26, 2018 @ 1:01 PM

      • You might have shown positive for drugs because of the meds in your system. Some have secondary uses, like benzos.

        That being said, I can’t even imagine the indignity and embarrassment of being dragged off because of a seizure. 😦

        Like

        Comment by Phylis Feiner Johnson — September 26, 2018 @ 9:09 PM

      • I completely understand. I had my first noticeable tonic clonic (grand mal) at the age of 12, and I remember how the friend of mine’s father rang my house’s doorbell and left me laying on the front porch. He thought I was doing drugs and never wanted me around his daughter again. My parents even thought the same thing. Took me immediately to the family doctor and asked for tests. The nurse on staff happened to be a neighbor as well as the mother of another neighborhood friend. So she wasn’t allowed to speak to me either. The results came back negative, and my parents felt so bad. And I remember the feeling of being helpless with no friends in that day and age. I completely understand what you had to go through and I pray more people learn to understand this illness that we are fighting. God bless and I look forward to more of your blogs!

        Like

        Comment by Amanda Krzywonski — September 27, 2018 @ 9:22 AM

      • Some people say they don’t know which is worse: being a cast-out, fear of having a seizure, or the seizure itself.

        Like

        Comment by Phylis Feiner Johnson — September 27, 2018 @ 10:30 AM

  24. How to tell ER doctors or nurses that Valium does nothing for stopping your grand mal seizures when it is the only med in the ER protocol for such use.? (Too many such bad experiences in the past)

    Like

    Comment by Andy — September 27, 2018 @ 9:28 AM

  25. Reading through all of the comments people have left on this article have just reminded me how lucky I really am. I work for a large corporation and my boss, instead of trying to figure out how to get rid of me after I was off work for 3 months 2 years ago after a series of seizures actually worked at creating a whole new role specifically for me. My wife, who I celebrated 19 years of marriage with this year has stood by my side when I have had multiple seizures, and multiple other issues and is sitting right by my side as I write this.
    My friends are always asking after my health, as are my work mates. Always making sure first and foremost I have everything I need and that my family have all they need to care for my needs.
    I am not sure how I managed to be so lucky to be in a place where everyone around me is so supportive and I am able to also make people aware of epilepsy, and how it impacts my life as well as the lives of others.

    Like

    Comment by Paroxysm in my Brain — October 1, 2018 @ 6:40 AM

    • Oh you are blessed.

      It’s so uplifting to hear your story!

      Like

      Comment by Phylis Feiner Johnson — October 1, 2018 @ 10:22 AM

      • Thank you. It really did make me thankful for all the people I have in my life. I have lived with epilepsy for 26 years now, and apart from the first couple of years when my grandmother advised me to keep it quite as you never know what people may think, I have never had to hide it, never had to be anyone other than who I am.

        Like

        Comment by Paroxysm in my Brain — October 1, 2018 @ 4:53 PM

      • Unfortunately, epilepsy was my “dirty little secret”.

        I told no one and my parents treated me like a pariah. 😦

        Like

        Comment by Phylis Feiner Johnson — October 1, 2018 @ 8:18 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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