Epilepsy Talk

What Most Offends YOU About How People Treat Epilepsy? | August 28, 2017

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…


  1. Phyllis, we just have not had any of those negative experiences with our son’s seizure history. Maybe we live in an especially enlightened part of America. But seizures are so common now, and I think most people know that. Everybody gets “something” in their life. Some get it when they are young, others when they are older. None of us are getting out of here alive.

    The thing that bothers me most about neurologists is that they are not interested in side effects as long as a medication is preventing seizures.

    Liked by 1 person

    Comment by Martha — August 28, 2017 @ 2:09 PM

    • Neurologists are not interested in much. (My humble opinion.)

      But I love your attitude: “None of us are getting out of here alive.”

      And I’m happy for your positive experiences…


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 2:13 PM

    • So true, my seizures have changed for the worse since taking Keppra. My neorologist will not allow me to go back on Gabapentin, insisting that I should try a higher dose which, she says, would help control the seizures.


      Comment by Maria Scales — September 2, 2017 @ 2:49 AM

  2. My daughter was getting bullied on her 7th grade basketball team, and I asked the coach if we could bring in someone from the local epilepsy foundation to give a presentation to help erase some of the stigma and help bond her with the team. She said we could have 5 minutes at the end of the season. Disappointing.

    Liked by 1 person

    Comment by Beth — August 28, 2017 @ 2:13 PM

    • Sort of sounds like my Lion’s Club lunch presentation. They gave me 15 minutes and everybody just kept on happily chomping away.

      You could barely hear me through the clatter of knives and forks.



      Comment by Phylis Feiner Johnson — August 28, 2017 @ 2:16 PM

    • Everyone in the school (not only sports teams) should have a presentation about epilepsy. Epilepsy Foundation in my state (NJ) will go anywhere to provide a presentation suitable for each specific audience. Teachers and school nurses need to know how to recognize seizures too (and not only the obvious tonic-clonic ones). I wouldn’t leave this up to the basketball coach to decide. The school administration needs be involved.


      Comment by Martha — August 28, 2017 @ 2:21 PM

      • Our Epilepsy Foundation (Eastern PA) goes around to schools (students, teachers, nurses, administrators), EMT people, ER doctors, nurses and other personnel, police officers, firefighters and any public official you can think of who come into contact with epilepsy.

        They’re very pro-active!


        Comment by Phylis Feiner Johnson — August 28, 2017 @ 2:31 PM

  3. My experiences have not been bad, but you make a good point. I have never seen a seizure either! I finally found it on YouTube..


    Comment by Kate Jacques — August 28, 2017 @ 3:19 PM

    • I never knew what a seizure looked like either. And I wasn’t bright enough to look at YouTube. (Of course in 1969, there was no such thing!)


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 3:47 PM

  4. People with a visible condition such as blindness walking around with a white cane and sunglasses are never questioned about the need for their service dogs.
    “Stealth” conditions such as epilepsy often lead to officious desk people (at hotels or restaurants) asking you to somehow “prove” that you actually need the service dog. I’m sorry but I can’t have a seizure as a “command performance” just to make your manager feel better.
    I keep a copy of the relevant portion of the ADA on hand to put anyone who starts being a jerk in their place but I shouldn’t have to do that.

    Liked by 1 person

    Comment by paleobird — August 28, 2017 @ 3:19 PM

    • Paleo, that’s brilliant — but sad — keeping a copy of the relevant portion of the ADA to “prove” your point.

      This might sound horrid, but it’s like in the 60s when black people couldn’t go into venues, because of their color. And we’re not allowed in because of a DOG?

      How crazy is that?


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 4:19 PM

  5. People don’t realise how you have to deal with it and what your long term side effects are (you yourself don’t know because you’re not clearly told; only when it’s obvious; then they try to find some other reason first) What takes them 5 mins to comprehend takes you 30 –
    60 mins and your brain is so tired after that you need a rest! They think it is you being rude and impolite, trying to make excuses and constantly take advantage, wanting to be lazy! They see you at different levels at different times and think it has nothing to do with the epilepsy – expecting you to be on the same level of awareness all the time. They then take offence because they think you are taking it out at them. It’s not that! It’s you being desperate to be understood- but how can you explain yourself properly when you don’t clearly understand your own self, being changed on medication all the time! And change doesn’t happen overnight – like changing your clothes! I feel I desperately need some psychological mental help! Please -Help! This is from my heart! Please, I need an advocate over here in the UK!


    Comment by Robert Poloha — August 28, 2017 @ 3:37 PM

    • I live in the USA, but have found this UK organization very useful for obtaining information: https://www.epilepsy.org.uk


      Comment by Martha — August 28, 2017 @ 3:43 PM

    • I do not have epilepsy but my almost 17 year old son does and I can relate to your post so much this is how I feel no one understands there is so much more than just the seizures it breaks my heart


      Comment by Angela Obrien — August 28, 2017 @ 4:25 PM

    • Robert, the drug side-effects seem to be the center of your problems and I really feel for you.

      Who can’t identify with the frustration of being in a haze, lost for words, “slow on the uptake”?

      It’s a problem that doesn’t seem to go away (except with a miracle med mix, which I was lucky enough to find) and so you trudge on.

      Please know there are many of us in the same boat as you. I’m no therapist — although I AM in therapy and it’s done me a world of good — but I’m here to talk, vent, or anything else you want to express.

      God bless.


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 4:29 PM

    • Omg! This is terrible.Please keep looking for the help you need and deserve. Best of luck to you, I know where you are coming from. In the U.K. there are agencies like Epilepsy Action that might be able to send you in the right direction, depending on your geographical location, transportation, etc. Here in the US the help is easy to access for the most part, again, somewhat depending on where you live, etc. Please keep in touch.


      Comment by Lydia Alexander Moon — August 29, 2017 @ 11:29 PM

  6. My 16 year old son has complex partial seizures is medication resistant he has started having them again and is in football he was just punished last week for missing a day and a half of participating in practices due to seizures now granted he showed up had a seizure which are not visible to others unless it’s a really bad one had to sit out due to the draining him of all energy so his punishment was he barely got to play in the game. Then this morning Coach called a 5:30 am practice due to back to school night we’ll as you all know sleep is a big deal to epileptics so first thing at 5:20 am he had a seizure we are half way to school and he forgot his back pack had to turn around he then was late by 5 min coach told the kids to raise there hand if they were late at roll well when he asked who was there he didn’t raise his hand because he started having a seizure again coach called him out in front of everyone saying weren’t you late I told you to raise your hand after he explained to coach what happened he apologized but I feel like they don’t get it I want to ask for a meeting with all of the coaching staff so I can explain the situation and. Condition but I don’t want it to look like mommy coming to the rescue this kid loves football it’s his life and it’s the one thing that keeps him going any input would be great


    Comment by Angela Obrien — August 28, 2017 @ 4:41 PM

    • The Epilepsy Foundation has an excellent program where they will come out to speak to teachers, staff, school personnel, EMTs, police officers, firefighters, nurses, doctors, ER staff and just about anyone you can think of to educate and inform them about epilepsy.

      I suggest you call your local Epilepsy Foundation now and tell them your story and ask for help clarifying the situation. (You might get some of the school personnel involved too. Along with the students themselves.)

      It could be a positive learning experience for all.


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 4:49 PM

  7. My daughter was almost expelled from her undergraduate degree program, Even though there was facilities at the school to accommodate such students, she was being side lined. It was only my insistence that she was readmitted. Thank God she has managed to be even doing better in her academics, maintaining a B+ average. After returning, especially one member of the faculty constantly reminded me that her situation will be evaluated after 6 weeks! While the seizures are still there they are less frequent. She has managed to be strong but parents like myself just have to strong for our children, this will help them to be strong themselves.

    I am in Jamaica , West Indies


    Comment by Angella — August 28, 2017 @ 5:25 PM

    • God bless her.

      Evaluate her “situation” with a B+ average? Most professors would kill for students of that calibre!


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 5:29 PM

    • I am so glad you continue to fight as do I we need to support and be advocates for our children my son to has a high GPA in school last year he managed to pull off a 3.8 first simester and a 3.5 second he has an IEP and wonderful teachers I just hope this year goes as good. I wish you and your daughter all the best and tell her to keep up the great work we are in California


      Comment by Angela Obrien — August 28, 2017 @ 6:37 PM

      • Advocacy is the name of the game. For ourselves and our children. If we can’t be strong, we can’t be strong for them.


        Comment by Phylis Feiner Johnson — August 28, 2017 @ 7:03 PM

  8. The key is stealth, us epileptics do not like to be seen in public having a seizure, so we hide. Coming out when necessary. Luckily for me, i’ve retired to a 14 acre, old walnut ranch with a year round creek in the back of the property in Sunny California. Having the time of my life, doing what i want, when i want. It’s reduced my seizures tremendously. Just brought 4 orange trees today and have a few other fruit trees (cherries, almonds, apples, peach and pears) that i planted at the beginning of the year. I have them on a drip irrigation system. Will be getting some chickens and pigs and cows soon. 🙂 Doing what you love, is the best type of job there is. Health wise and mentally. Positive attitude also always helps.

    As for the person above with the child that plays football, isn’t that inappropriate for someone with seizures. Especially with all the head injuries. My skull being opened for the removal of a baseball size tumor, i would never think of doing any physical sports that could involve head injury. I know she said that is what he enjoys, but there must be some other sport he may like, like baseball or basketball. My 2 cents.


    Comment by Zolt — August 28, 2017 @ 5:59 PM

    • I know most feel football is a dangerous sport as are most sports he does want to try track and field also in the spring but football is his passion he has his own top of the line helmet and has been cleared by his neurological team and he’s very in tune with what he can and can’t handle and steps back when need be I know there a lot of difference of opinions on this but for my son this is very important to him and as long as the Drs are on board then we will support him thank you for your concern I appreciate your input.


      Comment by Angela Obrien — August 28, 2017 @ 6:33 PM

    • Zolt, can I come live with you? A positive attitude has its own rewards. (As you know.) Besides, the place sounds like heaven on earth.

      As for sports, they’re all dangerous. If you’re bopped on the head with a baseball, you’re in deep trouble. If you swim, you may drown. I did something as innocent as figure skating and some (asshole) tripped me. I went into the boards, down for the count and voila, epilepsy reared its ugly head.

      I know where you’re coming from. Having a baseball-size tumor removed from your skull makes you think three times about what you do. And you should.

      But everybody has their own dreams and are perhaps less risk averse than us.


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 6:59 PM

  9. For me it’s the fact that I can’t drive and live in a really rural area where Wal-Mart is 30 miles away, and the local store is nearly twice the price. This has brought me and my son to live with my parents, among other things (I’m a young widow). I hate how nobody close to me, including Dr’s, believe me that my seizures are caused by low blood sugar and/or mold allergy, so what’s the point in meds with horrible side effects anyway?


    Comment by Andrea Bertrand — August 28, 2017 @ 9:52 PM

    • Toxic molds produce chemicals called mycotoxins that can cause rashes, seizures, respiratory problems, unusual bleeding and severe fatigue. And if your docs don’t believe that, send them to https://www.oshmanlaw.com/toxic-tort/toxic-mold/ (As lawyers, you can believe they’re aggressive on the matter.)

      Not driving in a rural area is the pits. Is there any grocery delivery service near you? (For example, we have a major chain, Giant, (not fancy) that delivers.

      I’m so sorry for your living condition. It must be difficult at best.

      But don’t give up on the meds. Some DO work.

      I kissed many frogs, before I found my magical med mix — Lamictal and Klonopin. I’ve been 99% seizure-free for 10+ years!


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 10:24 PM

      • Oh yes, I’ve researched the mold allergy deeply. The only thing left to treat it is allgists and allergy shots. Which means, needing transportation far away, and my mother is not a goid driver. I don’t want my son orphaned.. I think I’ve got it narrowed down to hypoglycemic episodes with nervous system overtaxed with mycotoxins causing my episodes. My family thinks I’m crazy and makes fun of my low carb diet. It’s seizure prevention! Anyway, thanks for letting me vent


        Comment by Andrea Bertrand — August 28, 2017 @ 11:34 PM

      • The diet, I believe, you can sensibly take care of yourself. But, can you at least consult with an allergist and see what other options you may have?

        As for epilepsy diets, this article may interest you (or reconfirm whatever you already know!)

        Three Anti-Seizure Diets That Could Change Your Life…


        I find the Modified Atkins Diet (MAD) to be most user friendly.


        Comment by Phylis Feiner Johnson — August 29, 2017 @ 8:02 AM

  10. Yes, this is my slice of heaven/campsite/ranch/ park. Well if you were not married, i may consider it. 🙂 Lot of nice sunshine although it’s a lot of work. Maybe more then i can chew. But the way i look at it what will be will be. Fruit trees are top priority, since they need longest to grow. I start slow, then move just as slow. The rest will come eventually. The way i look at it, i work till noon, then i relax or work more, or do whatever i want, like go skinny dip in the creek. I have a pool, but it was turned into a coe pond. And big concrete chunks were tossed in it. So it’s been one hell of a job to get it back to a pool looking. Still not done. I was hoping to get done by the end of this summer, but doesn’t look like it. Long ways to go, and with temps in the 100s, one does not feel like doing much physical work. I’m like 30 miles from the nearest town, so i have to be careful. Hundred and sixty years ago, you didn’t have health insurance and the nearest docs or hospitals were no where close.

    Back to the football issue, hopefully his seizures are not bad, but what if they were to get worse, then nothing to look forward to but misery, for what, to play. I personally don’t think it’s wise, but that is my 2 cents worth. Well alright more like 4 cents now. 🙂


    Comment by Zolt — August 28, 2017 @ 9:55 PM

    • Zolt, I would consider your 2 cents to be worth 4 cents. And I would happily accept your offer, were it not for the fact that I’ve been happily married for 37 years (which in my family is like three marriages)! 🙂

      But, I still love you anyway.


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 10:16 PM

  11. Zolt, it does indeed sound like a piece of paradise you have there — fruit trees, chickens and even the skinny-dipping. I live in the ‘burbs in Texas but my backyard is fairly well treed and have a pool with enough privacy to enjoy a bit of what I call chunky-dunking as skinny dipping just doesn’t apply in my case lol…..it’s quite relaxing — especially once I fixed the gate so as not to be surprised by the meter reader again (oops!). I am the one in my family with the seizures…..so glad it isn’t my child in this case. Those of you with children who have seizures are doing an amazing job of advocating for your kids. It’s so important to stand up to the school districts, coaches, teachers, etc. and to educate them. My children are grown. My eldest was born with a health issue — a complex heart defect that was an issue for his school career. I remember only too well the fight with school officials; the bullying my child faced because of his differences; the shock and fear the day he turned very blue at school and they had to call an ambulance…. We do all that we can for our kids and we teach them valuable lessons in standing up for themselves as they become adults.


    Comment by Ellen LaFrancis — August 28, 2017 @ 10:27 PM

    • All you can do is advocate, teach and set an example. Which is a LOT. From that, your children are sure to learn.


      Comment by Phylis Feiner Johnson — August 28, 2017 @ 10:31 PM

  12. Diagnosed with Temp Lobe in 1986, I set out to learn about it, and gained my NVQ in Epilepsy Management through Leeds Met University in 2008.
    I’m a firm believer that we must all learn about our epilepsy not only for our own good, but so we can educate others, the ignorance in society is incredible. I’ve been dismissed from eight jobs and lost out on many more on application, in the U.K we don’t have to declare our epilepsy, but why should I hide it, I’m not ashamed to have it, although I never have or would refer to myself as ‘epileptic.’ The word itself is linked to so many myths and legends connected to epilepsy, or as was known ‘The Falling Sickness.’ In past centuries, people were spat on, rubbed with coral, mistletoe and mole’s blood to ‘cleanse’ them. Strong links to witchcraft, insanity, demonic possession etc are what stick to the word epileptic, and society is ignorant and scared of it not understanding all the complexities of this condition, and still connect people with epilepsy to madness, purely because it’s a Neuro condition, my own father thought I was mentally ill.
    I’ve given talks to companies, various organisations and colleges, the most enjoyable were colleges, the kids are fascinated and wanted to know more. always asking an array of questions after I’ve spoken. We have to raise awareness nationally, through tv and radio, in the U.K. there is very rarely word of it and I’ve never heard Purple Day get a mention. I’ve done tv and radio talks, House of Lords, written articles etc, but we’ve all got to do it or the following generations will suffer the same ignorance and prejudice that I still do, I can’t bare the thought of that.
    Despite the prejudice I’ve endured, I remain upbeat and positive about my epilepsy, it lives with me, thanks to a wonderful new med regime, regular exercise, and a busy life, I’ve been controlled for four months, good for me. I’m never negative about epilepsy,self education and strength of character make it more easy to deal with, I just want my experiences to have been worth it, and help newly diagnosed people, or potential candidates for surgery.
    Thanks for this group Phyllis, keep up the good work.👍 Regards Elaine


    Comment by Elaine Howell — August 29, 2017 @ 3:47 AM

    • WOW! You’ve done a ton of awareness advocacy. Hats off to you Elaine!

      I don’t think the world will change in one day, but with your type of efforts and with advocacy for ourselves, it can change (however slowly), one person at a time.

      Congratulations on your four months of controlled seizures.


      Comment by Phylis Feiner Johnson — August 29, 2017 @ 8:23 AM

    • My last 2 nursing positions (RN) were eliminated because of my seizures. My 1st position I didn’t know I was having seizures. I would instead have negative personality change, passed out at times and all the hospital wanted to do is get rid of me. My 2nd position I tried hiding my seizures but my boss found out and said I can’t work for her . I eventually quit my last job since I was treated like I had a contagious disease. The reason for telling what happened to me is to show that even healthcare personnel do not understand epilepsy…I am a RN with teaching degree; maybe God is opening doors for me to develop a program for healthcare personnel?


      Comment by Deborah Harley — September 13, 2017 @ 9:41 PM

    • BRILLIANT ,,, Keep Standing up to the wicked society, taking pleasure in dehumanizing people living with Epilepsy, while compassionately caring for people having heart attacks or strokes & mental disorders.
      After bearing centuries of maltreatment, it’s time to challenge the society for failing to accept, recognize & treat the medical condition, as any other medical condition.


      Comment by Gerrie — September 14, 2017 @ 6:25 AM

  13. People presuming that I am drunk when I get one in a restaurant or a bar. ! People thinking that it is my own fault. And and once told me I was bound to be left on my own if I continued to act this way. And yes you have me thinking about it now We never ever see a simple or complex partial on TV. So hence there is absolutely no words about it It’s all or nothing


    Comment by Anne Marie Kearney — August 29, 2017 @ 6:19 AM

    • That’s right, it’s all our “fault”. We shouldn’t be having those nasty seizures.

      Perhaps if people were willing to take their heads out of the sand and learn a little (even by asking one question), the ignorance could be abated.

      If not the whole world, at least one person at a time.


      Comment by Phylis Feiner Johnson — August 29, 2017 @ 8:30 AM

  14. My 13 year old daughter has epilepsy. When I inform some people of that she could potentially have a seizure, I am surprised by their lack of knowledge. Some seem to assume that she has very low level IQ. I then inform them that she is in Pre-AP classes as an 8th grader and she wants to become a doctor. She often makes hundreds on tests without studying at all. I had one teacher tell me that she could go outside of the classroom by herself if she felt like she was going to have a seizure!!! My daughter is so brave, smart and beautiful. She has a very wonderful, supportive pediatric neurologist. I do have hope for the future. I am a teacher and I talk to my students about what they need to do in case someone has a seizure. These teens seem more empathetic than most adults. If we continue to talk to children and young adults about what they need to do and what it is like for someone with epilepsy, society will eventually change. Thank you for all you do to inform people.


    Comment by Trish L — August 29, 2017 @ 10:26 AM

    • Your daughter sounds like a whiz and someone to be very proud of.

      And you should be proud of yourself, for all you do to advance epilepsy knowledge.

      I do agree with you, understanding starts at the most basic level, where there are open minds, curiosity and therefore hope.

      If we can influence the way these youngsters approach epilepsy, we’ve done a great service to society’s future.


      Comment by Phylis Feiner Johnson — August 29, 2017 @ 10:32 AM

  15. Looking up Epileptic noun in the dictionary it says a person with epilepsy. This is what i refer to it as and i don’t have any problems calling myself that. One has to remember that epilepsy itself in general (back in the days of ignorance) was considered evil with all the annotations that the person mentioned mentioned earlier. Like a lot of health issues have the ic attached to the end of it, like diabetic is a person with diabetes. Personally I’m not ashamed i have epilepsy, i mention it to people I deal with on a regular basis.

    My pet peeve is when people us it as an adjective and put the word fit next to it and use it to describe a person that has an emotional outburst.

    Now if you want social stigma, i’ve noticed people still consider having a brain tumor as someone who is definitely mentally ill/retard. I think that is slower to lose it’s misconception than epilepsy. After my brain tumor was removed, at 38, i wanted to retire, but had little money to do so. I told myself i will retire in 5 yrs, well it took 10 yrs and i’ve finally done it. That’s more than i can say for my friends without a brain tumor.

    Going back to football, practice means a lot and if one misses practice, then that person may not get back on the same page as everyone else. Where by making the team look bad, like the weakest link in a chain idea. But anyways maybe it’s a way for the couches to discourage the young man about a football future. I hear that the docs are onboard, but docs are not gods, nor are they seers of the future. My general doctor couldn’t deduce that i had a brain tumor and didn’t take the proper steps to find out. They are only human, dealing with the same issues that normal people have. And of course way overworked to the point were they don’t have the time to fully diagnose someones situation. Interestingly my ex girlfriend made the right call on what should happen and that was for me to get an mri. Although i was nervous about that at the time, not sure why. But it took a visit to the emergency room after a grand mal before they knew what was going on. What a story that was, but that will be for another time.



    Comment by Zolt — August 29, 2017 @ 10:30 AM

    • Your girlfriend is a blessing.

      As for “fit,” I’ve seen many people who have epilepsy describe it as having a “fit”.

      And the “epileptic” issue, in my opinion, is a semantic one. As you pointed out, we call someone diabetic instead of “someone who had diabetes”.

      The social stigma of a brain tumor is almost unbelievable. Is it because it’s something people can’t actually see? Because they’ve never experienced it? Because they don’t have a clue what it is or what it does?

      As for the docs, I agree. No one is a God, nor can they see all and hear all. But a little more time and care spent would benefit us all.


      Comment by Phylis Feiner Johnson — August 29, 2017 @ 10:43 AM

  16. About the brain tumor, probably all of the above. It’s that idea that one is not playing with a full deck. But as long as the brain is not to injured, it can find ways to reroute important connections.

    This morning I was having coffee next to the tool shed, and I saw a bee land near my foot, i shewed it away and it went straight into the black widows spider web where the roof meets the tool shed. It was struggling to get loose, but the black widow came a running down and started to spin a web around it. Then it backed off and came back to what looked like it was drinking it’s insides. That was a trip.

    Two days ago at the same place another bee landed near my foot. I tried to scare it by moving objects close to it, but it wouldn’t budge. So i let it be since it was a honey bee and they are endangered. Well after about 15 minutes it went along on it’s merry way, but walking instead of flying. Well it walked about 10 feet away and right before i was to loose site of it, a 3 in lizard came and sucked it up. Then walked away.

    My take on all this, it sucks to be a honey bee.


    Comment by Zolt — August 29, 2017 @ 5:07 PM

  17. I know this is wrong in so many ways, but these days I don’t tell any one who already does’t know that I have Epilepsy. Let them just think whatever they want- In my experience some of the people I’ve told in the past had made too much of a big deal out of it, and I felt that some saw me not as a as a person first but rather as the disorder and then, maybe, as a person. And something else: I do not like being the center of attention ever, for anything.I know I’m not advancing the cause with my attitude,and I wish I could change that. But at this stage of my life I just want to lay low and do my own thing, whatever that is. I still have yet to figure out what that is.


    Comment by Lydia Alexander Moon — August 29, 2017 @ 11:20 PM

    • I call epilepsy the “stealth disease”. Because it comes along when you least expect it and others rarely see it.

      It’s scary. Like walking with a big black cloud over your head. When’s the storm coming? Where’s the thunder and lightening?

      Some people think you’re crazy, others don’t want to know you. So I understand your reluctance to disclose your epilepsy.

      But Lydia, remember always, you are a person first. Someone who has epilepsy is secondary.


      Comment by Phylis Feiner Johnson — August 30, 2017 @ 9:03 AM

      • Thank you, Phylis for reminding me of this.And thank you for your awesome column.


        Comment by Lydia Alexander Moon — September 2, 2017 @ 7:49 PM

  18. Having tried the exhausting courteous & cordial engagement to enlighten society the unfortunate conditions of Epilepsy, isn’t it about time for the EPILEPSY FOUNDATION & advocates of the medical predicament to LEGALLY hold accountable, the very public institutions who are established, paid & claim to “serve & protect the public” interest, for wanton discrimination, torment, harrasment, abuse & maltreatment of epileptic patients, struggling to survive the war against Epileptic seizures & medication side effects?

    While the ages old humane consideration for just another human being in desperate condition may have gone long time ago, “civilized societies” persecuting the people suffering from epileptic seizures is just too hard to fathom, accept & respect.

    Now, imagine being handcuffed to bed for two days by the Police, Emergency rescue crew & the hospital for having grand-mal seizures, until your friends showed up at the hospital emergency room & threatening the hospital for MEDICAL MALTREATMENT for refusing to release the epileptic patient, free to go home?

    One wonders that, what makes having epileptic seizures a crime?

    Then again, hospitals holding epileptic patients HOSTAGE in bed, does provide a whole lot of money for the “health industry corporate empires” to make a whole lot profit.
    Ain’t so???


    Comment by Gerrie — August 29, 2017 @ 11:44 PM

    • Being held hostage in bed because of epilepsy is probably a very profitable business. As you know, from your own experience.

      Surely that’s about the strongest offense I can think of.

      And yes, it would be wonderful to have someone like Michael J. Fox stand up in our defense and tell the world that epilepsy’s not so bad. In fact, maybe you should learn a thing or two.

      But no big luminaries are knocking on the door. So, we’ll have to pound on John Q. Public’s to be seen and heard.


      Comment by Phylis Feiner Johnson — August 30, 2017 @ 8:55 AM

      • As Epileptic seizures are not tormenting enough, adding an insult to the injury being tormented by the establishments who claim to serv the best interest of the public is outright criminal medical malpractice.

        Therefore, it’s long overdue to fight back the criminal institutions tormenting Epilepsy patients in their desperate time of medical needs.

        Thanks to some proactive Lawyers, I’m already in the middle of Legal process, holding accountable the very “establishments”, who abused their responsibility & authority by illegally “prosecuting” Epileptic patients for having grand-mal seizures.

        Something good had to come out of this tormenting experience.
        Again, thanks for your devotion serving the Epilepsy community for I’ve learned a whole lot about my own Epilepsy from ALL remembers of this community sharing their experience, more than I’ve known ANYTHING about Epilepsy.

        Wishing the best for all the community members, experiencing & surviving the everyday ordeals of Epilepsy.


        Comment by Gerrie — August 30, 2017 @ 5:07 PM

      • Gerrie, many people in official and medical capacities should be held liable for their actions. Sadly, society turns their head, feigning innocence and acting like WE’RE crazy. (Sigh.)

        I’m glad you’re taking legal action, but I would expect no less than that from a pro-active person as you. And I KNOW you will emerge the victor.

        Thanks also for being such a caring and compassionate member of this community. I wouldn’t be the same without you.


        Comment by Phylis Feiner Johnson — August 30, 2017 @ 5:19 PM

  19. when I have seizures in the public, people panic and mob me, I’ve been hurt and had my specs broken once, and being treated like an incapable idiot who’s too dangerous to employ, I’ve never had a paid job and the insults I’ve had in interviews could only be called verbal abuse


    Comment by Gail — August 31, 2017 @ 5:19 AM

    • Those people who mob you must be very frightened or looking for a cheap thrill. (Sorry, I couldn’t resist the sarcasm.)

      And I’m sure in the interviews, the people feel free to say what they please because you don’t “understand”. (Grrr…)


      Comment by Phylis Feiner Johnson — August 31, 2017 @ 8:59 AM

  20. Some of us can hear people during a seizure but are unable in that moment to respond. I was a freshman in college and had a seizure in the science lab for my Zoology course. The whole time I could hear a great discussion about what exactly people thought of me and how “she was doing it for attention.” Seizures are embarrassing, painful, and exhausting. For several years now I have wanted nothing more than to NOT be the center of attention as i flop in the floor. Better education and awareness would greatly help our community.


    Comment by Megan — August 31, 2017 @ 10:45 AM

    • Better education and awareness would certainly help our community. Add to that compassion.

      I remember being in high, school flopping all over the floor, while students actually walked OVER me. 😦


      Comment by Phylis Feiner Johnson — August 31, 2017 @ 12:43 PM

      • I have heard of instances where my daughter’s class mates ran away whenever she has an episode, Thank goodness there is always a few who remain to assist.


        Comment by Angella Robinson — August 31, 2017 @ 2:20 PM

      • I guess she was a little luckier than me. (Not much.)


        Comment by Phylis Feiner Johnson — August 31, 2017 @ 2:56 PM

      • My husband took me to a local hospital because I had more than one seizure and need IV medication. When he got to the ER he was told it will be a 5 hour wait. Well I changed that to minutes by having grand mal seizure by stop breathing and turning blue. They asked my husband what needs to be done. My husband ran the code while doctors and nurses ran to get what needed to be given to revive me…Interesting since I would have passed on to be with God so I need my husband to keep me alive…This no first time he thought this would be it. I use to sit in the whirlpool but not without my husband since he had to revive me once from drowning because of seizures. I have numerous times where my husband revived from seizures along with injuries. Right now I am recovering from clavicle fracture due to hitting the kitchen countertop from seizures. I remind myself things can always be worse and more challenging. Praise GOD and love him forever…


        Comment by Deborah Harley — September 13, 2017 @ 10:07 PM

      • Sounds like you’ve had a rough time.

        But the one thing that sticks in my mind it that YOUR husband had to tell the ER what needed to be done. Why do we have an ER and doctors?


        Comment by Phylis Feiner Johnson — September 14, 2017 @ 8:32 AM

  21. Phyllis this is so true ! Ive accomplished so much .I thank God for the person I am today


    Comment by Debi Harmon Ference — August 31, 2017 @ 9:48 PM

  22. I’ve not had major problems that I hear others complaining about from non family members, but, the burden/problem of a chronic disease on my family sometimes makes me feel like I’m less. For instance, my son and husband were going out of town. When my son found out I wasn’t going with them he said, “what about mom?” I felt like I was less, or much younger than my 18 year old. I’m not a baby, and my epilepsy would allow me to be alone.


    Comment by Cindy — September 1, 2017 @ 1:35 AM

    • It’s tough when you feel the toll that epilepsy has on other family members.

      Sure they’re concerned, because they love you. All you really can do is to reassure them by example.


      Comment by Phylis Feiner Johnson — September 1, 2017 @ 10:04 AM

    • Great to have a very caring son, concerned about the wellbeing of his mother left behind at home, alone by herself.


      Comment by Gerrie — September 3, 2017 @ 6:32 PM

  23. It really bother me when people say “at least you don’t have “bad seizures” just because I don’t have convulsive seizures.


    Comment by Donna Jones — September 2, 2017 @ 10:20 AM

    • A seizure is a seizure. What do they expect, for you to roll around on the floor?

      I have absence seizures and drove into the garage door. So much for those “little” seizures.


      Comment by Phylis Feiner Johnson — September 2, 2017 @ 10:22 AM

  24. The first thing that happened to me is a good example of what is offensive. I first started dealing with epilepsy at the age of 18. Scared to death with no idea what was happening, I went to my doctor and tried to explain what I was experiencing. He promptly referred me to a psychologist, who just happened to be his wife…


    Comment by Deb — September 4, 2017 @ 12:07 PM

    • I smell something fishy here… 😦


      Comment by Phylis Feiner Johnson — September 4, 2017 @ 3:37 PM

    • Being young & had no idea of the medical condition you were facing, you may have taken the Doctor’s recommendation to the heart & see his wife for unrelated mental disorder.
      Your case is clear example of the very corrupt system, many people are ending up being exploited in their desperate time of need for medical attention.
      Any wonder the health industry keeps losing credibility & trust from the very people who need the medical attention the most.
      I hope you are in better hands now, with Doctors who care for your wellbeing more than for exploiting your medical condition.


      Comment by Gerrie — September 4, 2017 @ 6:11 PM

      • Thanks for your words of care and concern, Gerrie. I hope Deb gets to read your words of wisdom.


        Comment by Phylis Feiner Johnson — September 4, 2017 @ 9:13 PM

      • Thanks (at last), Gerrie, for your comment of concern. Fortunately I had doubted that a psychologist would be of any help, but I paid “visits” to her for about six months anyway until I had a more serious seizure, at which time I begged to be sent to someone else. She said, “Okay, but you could stay with me to work on your shyness.” Ummm—no! “I can bring an end to my shyness right in this very moment if you don’t let me go!” 🙂 I’m in better hands now (years later), but as you say it’s hard to have confidence in the health system—or even our doctors. Last time I had an appointment and described a recent aura, my neurologist suggested that maybe I should be more careful with my health so as not to instigate a seizure. Seriously?! I would have changed my lifestyle long ago could I find any connection between my seizures and my diet/sleep/etc.


        Comment by Deb — September 7, 2017 @ 3:46 PM

  25. Deb, “Shyness”? That’s a new one. Guess she wanted to keep you in her clutches badly. “Badly” being the operative word.

    Yes, and snap, you can get rid of your auras too!

    These docs must be on drugs. (No comment.)


    Comment by Phylis Feiner Johnson — September 7, 2017 @ 3:55 PM

  26. Deb,
    I’m glad you got better understanding of Epilepsy & the medical “establishments” now, more than when you started having seizures & desperately trying to figure out the causes of your seizures, seeking help for your medical condition.
    I know the tormenting experience for I’ve been in your shoes, ending up in hospital emergency rooms & intensive care units, knocked out with grandmal seizures out of no where, to only end up shipped from the ER Doctor to another PRIVATE Doctor, whose only interest seem to be financial gains more than medical treatments.
    After endless appointments & examinations with as many Doctors & Neurologists as I can count, I ended up researching
    the basic informations of Epilepsy on my own & desperately FINALLY asked,,, “Do you know how to do Brian Surgery”, to the last emergency room Doctor I was being treated for another seizure.
    The Doctor seemed shocked by my question & asked me “Are you sure you want to do that, it’s a very serious procedure”.
    Fortunately, I finally got someone to hear me out & recommended me to stay in Stanford University Hospital for a week, recording my two grandmal seizures on video & MRI, for deep examination of my brain activity to find out the root-causes
    of my seizures.
    Honestly, watching myself having grandmal seizures on video, was the greatest shocking moments of my life.
    But the experience helped me end, the run-around from the medical establishments, chasing Doctors after Doctors for answers, to only end up scheduled for more appointments, obviously aimed for financial gains.
    Thanks to Stanford University, the brain surgery I sought to stop my seizures was better stablized by prescription drugs more than by surgery.
    At the end of the day, I learned asking DIFFICULT QUESTIONS get better answers, more than taking the establishments for what they claim to represent or recommend, knowing the desperate predicament people are cornered to survive.

    Having each other to share our experience & having survived this far to beat the odds, we are ALL in better condition than we started with.
    Thank you for sharing your experience & wishing you all the best.


    Comment by Gerrie — September 7, 2017 @ 5:37 PM

  27. If you’re talking about neurologists, they seem to have their own favorite type of condition to treat, where the patient is 100% with them. Just be a little different from your neurologist’s way or ways of thinking, then you will suddenly drop on their priority list, where ”others”may have a seizure life for the rest of their life, and your life & seizures continues, no matter what seizure pattern you have. So it’s AGREE with doctors & everyone or else. Even as you know what you may agree to will not work for you, that never effects them. For me it’s getting worse by the day, when I SEE what is happening to ALL the food supply since THE DARK ACT has been the law in 2017. That never seems to be important enough to WARN all who have seizures what can be the ROOT causes for seizures in 2017 more so than any year before. What I can not believe is how people will totally ignore what has been happening to foods since the end of WW 2 & life just goes on, because no change in diet will make no difference for anyone else but me. It’s ALL brain health that is effected, not just epilepsy & seizures. What are the odds this gets talked about in ANY neurological office? Sooner or later,one day, we will have to starve to death or fast 100%, so no seizure will happen.


    Comment by C D — September 10, 2017 @ 7:24 PM

  28. I agree with you about our food 100%. My list keeps getting longer and organic is the solution for now but I’m also concern about the future supply. I see more and more adults with Parkinson’s, Alzheimer’s and other brain health affected by their food consumption but will not acknowledge its coming from their food and medications…


    Comment by Deborah — September 14, 2017 @ 2:57 PM

    • Ah, but is it organic or natural?

      A good example of the difference between “natural” and “organic” is a prepackaged fruit bar.

      If the bar contains only certified organic ingredients it may be labeled as 100% organic.

      If it contains 95% organic ingredients, it may also be labeled as organic.

      If the bar is 70% organic, it may be labeled as “made with organic ingredients.”

      Anything below this, however, does not have the right to be labeled “organic” or carry the USDA seal.

      Interesting, eh?


      Comment by Phylis Feiner Johnson — September 14, 2017 @ 3:55 PM

      • Phylis you are correct. I do wonder how accurate the labels are with ingredients. As for just the fruit, vegetable and meat if they are clean enough to be labeled organic/natural? The best way to know is grow my own vegetables/fruits and raise chickens. I have the property but lacking my green thumb this year….


        Comment by deborah — September 14, 2017 @ 5:20 PM

      • The United States Department of Agriculture (USDA) does regulate use of the word “natural” when applied to meats, poultry, and eggs, stating that a “natural food is a product containing no artificial ingredient or added color and is only minimally processed”.

        Although consumers purchasing natural meat, poultry, and eggs can be confident that there are no artificial ingredients or colors added, it’s important to note that “natural” does not necessarily mean hormone-free or antibiotic-free; these are separate labels, also regulated by the USDA.

        Organic food is produced using approved organic farming methods that foster cycling of resources, promote ecological balance, and conserve biodiversity.

        Specifically, synthetic fertilizers, sewage sludge, irradiation, and genetic engineering may not be used to produce organic food, meaning that organic food products are not genetically modified and have not been treated with synthetic pesticides or fertilizers.

        Good luck with the chicks and veggies! 🙂


        Comment by Phylis Feiner Johnson — September 14, 2017 @ 5:43 PM

  29. What Defends me the most is when people tell me I shouldnt be driving, even tho I am 21 yrs sz free and they reply you still shouldnt drive. Well I do and will continue driving,
    But its ok for a drunk to still drive after he kills someone,


    Comment by Terry — September 21, 2017 @ 10:22 PM

    • If the Department of Motor Vehicles and your neuro say you can drive, I don’t think it’s any of their business.

      Ask them if they drive after a couple of drinks, or if they have a Designated Driver.


      Comment by Phylis Feiner Johnson — September 22, 2017 @ 8:47 AM

  30. Please look at my blog, but in the meantime I will share my experiences. I have lost family, friends and relationships with men due to (what I believed to be a curse). I was considered to be a burden by employers and every job would get rid of me after two weeks one finding out I had epilepsy. I was believed to go on disability by others because I could not hold a job and I was taking so long to graduate, all the while everyone was not taking other circumstances in my life as possibilities for me being so overwhelmed. While trying to get my degree, my mother was diagnosed with cancer and needed help, I was also trying to get my medication regulated so that I could stop having seizures at night. The stress affected me so badly that to this day both my shoulders dislocate due to how many I have had in my sleep. But I powered through and told myself NO DISSABILITY, I don’t care how many times I fall or how bad my shoulders hurt. I will get my degree! I had seizures in class and lost friends, my mother died, and I came in to class the following week knowing she was right next to me. I wanted to prove that having epilepsy made me stronger!!! Who cares what people say or think, I’ve lost too much, I will forever prove them wrong.


    Comment by Veronica Monahan — October 7, 2017 @ 4:38 PM

    • Bravo to you! You are an inspiration to us all. A true “warrior”. One who’s been through more than her share of wars.

      I’m sorry for your struggles. I’m sorry for your pain. But I’m proud to see the person you’ve emerged to be and will always be!


      Comment by Phylis Feiner Johnson — October 7, 2017 @ 6:29 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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