Epilepsy Talk

The Isolation of Epilepsy | April 5, 2022

You’re reluctant to go out.  Because having a seizure can be so unpredictable and embarrassing.

You think: “What if I have a seizure?  What will people do?  What will they think of me?”

Those and many other self doubting questions run through your mind.

Even if you’ve only had a few seizures, there’s always the fear that silent (or not so silent) enemy may strike again.  So why chance it?

Social Stigma

The history of epilepsy is in a sense the history of stigma, which is deeply discrediting and can reduce a person with epilepsy from a whole and unique person to a tainted, discounted one.

Stigma carries a sense of shame associated with being “epileptic” and the fear of discrimination.

Fear, misunderstanding and the resulting social stigma surrounding epilepsy can result in social, and sometimes even legal discrimination.

All over the world, the social consequences of epilepsy are often the cause of more suffering than the seizures themselves.

Problems are especially felt in the fields of education and employment, personal relationships and sometimes, even law.

These attitudes undermine the treatment of the condition globally.

A fundamental part of ridding the world of the stigma, which has cost people with epilepsy so dearly for so long, is to raise public and professional awareness and to change the legislation which reinforces this fear and discrimination.

Stress

Just the stress of dealing with society’s often hostile attitudes toward disability in general and epilepsy in particular, can cause you to hide your condition so you won’t be stigmatized.

And there’s the possibility of being “found out.”

So isolation becomes preferable to social interaction.

Confidence and self-esteem plummet, replaced by feelings of helplessness and depression.

Then there’s the added emotional baggage of fearing recurring seizures.

It’s like a cloud hanging over your head, or impending doom.

The loss of control, embarrassment and humiliation, strike again.

Contemporary western culture has glorified the image of the controlled and independent adult.

The unpredictability of having a seizure, as well as the obvious loss of control during seizures, doesn’t exactly fit this image.

And by “failing” to meet these standards, a person’s sense of self-worth is affected.

In one study, participants anticipated that their self-perceptions and self-esteem would be more positive if they didn’t have epilepsy.

Self-perception turned out to be one of the most important predictors of successful social relationships in people with epilepsy — even more important than seizure frequency, severity, or other medical factors!

Limitations

Lots of people with epilepsy have physical disabilities which also limit independence.

Like not having a driver’s license and being stuck — except for rides from others or public transportation, which isn’t available everywhere. (Like here!)

So the ability to do simple things like grocery shopping, errands, getting to a doctor’s appointment and just socializing in general are stymied.

Plus, with many there’s the stress of not being able to commute to a job.

Or not having a job at all.

Which means no insurance, the agony of social security and whatever other financial assistance is available.

More than 50% of people with seizures are either underemployed or unemployed.

That’s a staggering statistic. So there’s the economic strain of sustaining a household, not to mention the added expenses of anti-seizure meds.

Adjustment

The impact of epilepsy can be devastating and debilitating, if you choose it to be.

But, it’s is also very manageable with the love, support, acceptance, openness and understanding of family, friends, peers and the community.

With education, shared information, more self-knowledge and acceptance, you can gain a greater sense of mastery over both your fears and your seizures.

That way, YOU take control.

Remember: Knowledge is power.

And epilepsy is just a condition.

Ultimately, you are in charge of your life!

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Resources:

http://neurologyasia.org/articles/20073_010.pdf

http://www.charge.org.uk/htmlsite/about_txt.shtml

http://ninascourage.org/psycho-social-aspects/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200035/

https://epilepsyottawa.ca/epilepsy-and-social-isolation/#:~:text=People%20with%20epilepsy%20experience%20social,fully%20participating%20in%20their%20community.


11 Comments »

  1. What can be worse than what you said here Right ? & Right, as there is 1 thing maybe 2 when OTHERS believe they have their right/s to control your life if they think that you can not think logically about HOW you want to live your own life. I think back of the PBA that I always wanted to had been a part of, and that never happened, and no doctors when i was a kid ever helped me to be supportive for me to LIVE OUT MY DREAM, but instead for the most of them with parents were they always TOO PROTECTIVE as they wonder what CAN HAPPEN, never thinking HOW if you can live out what you want to do, that seizures may had been LESS THAN MORE, by not being able to even pretend you are like so many others who never knew you had seizures AND IF you wanted to remain that way, you do not tell them about it. But as always, THERE WILL BE PEOPLE who puts you in that invisible prison that THEY DO NOT LIVE IN nor do they see it or even care to because their life is not effected the same way as they are not the person who has seizures & their life, lives with those thoughts AFTER a seizure & who gets effected being in that invisible prison that they do not live in. WHAT’S WORSE is when you trust God to take it all away, & the seizures still hangs around for most of your life, maybe until death from a seizure or something else. THAT IS NO LIFE, as I told God after my 61 year MARK of the years I have had seizures, i said to him 61 YEARS IS ENOUGH, as so far maybe he’s now allowing me to stay seizure free through some help from XCOPRI, but that still is not God healing me which I expect God to heal me, & not to control my symptoms of all that can make seizures happen. Some CANCER can be healed, HEART problems can be healed from more things than Epilepsy, which has not been proven to be healed, so God can heal, where drugs & devices can not heal the seizures. Seizures & Epilepsy is why I have the hope in the rapture of Jesus to come anytime, as most drugs I have ever been on seems to only work for a season or 2 maybe 3, then it’s like you are taking small ice cubes for drugs. Hoping & praying that XCOPRI is not 1 of those ice cube drugs, even as there is a difference, ( not just between generic & brand names ) in the MGS tablets & what is in them,, that you can be taking that works better than others.

    Liked by 1 person

    Comment by James D — April 5, 2022 @ 10:16 AM

  2. I agree that knowledge is power and it’s our life. People just don’t want to listen and care. With that in mind, it makes it very hard to be around family and friends unless I just don’t pay attention to how they react.

    Liked by 1 person

    Comment by Laura Cernick — April 5, 2022 @ 12:43 PM

  3. I perform onstage with my band. lights-a-flashin and such as we do a progressive rock thing. (no green lights though – green and white flashing equals problems)

    I say this so people realize that I am not easily frightened in front of a crowd.

    But standing in line at a convenience store, feeling that aura come on, is truly terrifying. Trying to gauge how deep it will be… can I stand, locked in position for 30 seconds or so, or will I lose consciousness, drop, and look dead to everyone around me – hopefully not striking my head. Well I chose the lesser of two evils. Auras for me are a blessing – they give me precious seconds to act. I sit down. I keep a chair near if I can, the side of the stage when playing out for example, or I’ll sit on the floor.

    So far, I sat on the floor once at a Quiktrip… no one said a word, it’s not fair for me to conjecture why, but it passed, I got up and went about my business a little clumsily maybe – but better than a whack on the head woulda left me. While hiking, I have had to stop and sit now and then when I see a vista spread out before me. At least I get postical bliss. If I have to take some brain damage, at least it results in heavenly visions and unnatural, unjustified joy.

    The point being, I can live a good life AND I can avoid judging others though they may be judging me. I don’t mean from a large world view perspective, but it’s not like I am immune to the fear of the unknown (though I try) I can’t expect anything from others, for all I know, I may be their 1st encounter with an epileptic and they should be confused and concerned if it’s a new experience to them. It’s not like most people would be in a position to help us anyway, they would just be bystanders or worse, in the way, and I would rather those people just go about their business.

    Liked by 1 person

    Comment by Bill — April 5, 2022 @ 5:50 PM

  4. Bill, you are one intrepid being. A wonderful inspiration for us all.

    Bravo to you for your attitude, perseverance and bravery!

    Like

    Comment by Phylis Feiner Johnson — April 5, 2022 @ 6:05 PM

  5. Imagine being banned from the public library you paid your tax dollars for most of your life for having too many seizures & creating “public nuisance”?
    Imagine joining your friends in a coffee shop for years to only end up having a grand mal seizure one day in front of the very friends you had been associating like a butterfly for decades?
    Imagine the beautiful evenings you had been enjoying for most of your life turning into glaring lights triggering your seizures?
    Adjusting & readjusting to life with Epilepsy going through the difficult times to survive seizures, I had come to learn Epilepsy is a whole lot more confining tragedy than I had ever anticipated to be.
    Feeling hostage to invisible ghost which can strike anytime of the day anywhere you happened to be, is certainly haunting experience to live with.
    Thank you for addressing the most tormenting phsycological trauma of epilepsy, greater than the physical torturing experience of the seizures.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — April 6, 2022 @ 12:02 AM

  6. Public library = public nuisance? What’s wrong with this picture?

    Along with friends who choose to abandon you just when you need them most.

    Sometimes one must look through a very narrow lens to see the beauty of the world with epilepsy. I know you can.

    Like

    Comment by Phylis Feiner Johnson — April 6, 2022 @ 9:16 AM

    • Yes Phylis, The going had been tough but the tough must keep going, empowered by the will to live.
      Therefore, thanks for your selfless commitment to serve the Epilepsy community, this forum had been therapeutic remedy to save our lives from the deep trauma of the Epilepsy we have learned to live with the hard way.
      Keep up the great work. 👍!
      Gerrie

      Liked by 1 person

      Comment by Gerrie — April 6, 2022 @ 11:15 AM

    • I only told the people that I was hanging around with after finally getting diagnosed with Epilepsy, that I had Epilepsy.
      Why it was my choice and after the all mighty “the number you have called is no longer in existence. Please hang up and call the number again. This is a recording!”
      Et Cetera just to find out that they were Not my friends at all, after all the time!

      After being told that by a mother that her son was not coming to the phone he’s gone to wherever too many times … Even she asked me what was going on I told her. She said that if her son was doing that to someone who he called a friend? I was better off without him and walk away and forget him. The guy’s mother knew more about Epilepsy then her son!
      So I tore the phone number up and slowly made new friends.
      Some that knew that I lived with Epilepsy and many that did not. Then there were many people who found out by “wow, is she ok?!”
      When I went out in a police cruiser. I was assistant coach for a few teams that hadn’t played that day and a person that I knew and her child then were playing and that was the first time they saw me have an Epileptic seizure. It wasn’t anything to worry about then. I lived at home.
      Always in touch with my family and friends.
      Exercising or dancing daily and singing always!
      My parents always had the radio on and equal to MTV was MuchMusic and videos and latest conversations about video games, movies, concerts and outdoor concerts like the 3- day concerts(?)

      My biggest pet peeve is that where I am the police don’t care!
      I went to ask a question the cop flipped out at me. I was calm before he flipped at me then he kept needle me about “what are you doing for your mental health!”
      Every question because I said that Epilepsy word!

      I was only born in this city why I was forced here,
      1. To prove that I am not a certain person. Which I shouldn’t have to do in the first place! I was in my apartment long before with my Fur baby that heresy was taken away from me because of religious reasons said for the longest length of time!!
      2. I spent too much?
      On what? Groceries who doesn’t every so often, weather permitting?!

      Because I have been living independently by 2013 I was hoping to go to school for computer studies with help from my employment counselors and finally get a Seizure Response Dog that I was already prepared to live with and work with when the time came with my fur baby in another city unknown until the time came.
      People stole my snail mail from my apartment “it was there yesterday, but not there today!”
      As was my dad’s envelope torn in half left in my apartment for “lurid reasons” these whatever’s stole my belongings and Cat’s. Even if I was in the hospital or volunteering. Never while I was in workshops or courses!
      I even was yelled at for donating my art, to VWAP close to where I lived or survived because they helped me so damn much when I was going through HELL!!!
      Even when I was being followed right to the point the males were waiting for me in the VWAP underground parking lot! I was told what to do for my safety.

      They picked the wrong women and wrong day!

      I was even was swarmed in a food court told that I spent too much and they( a bunch of teenagers (hoodlums in the making)) telling that I grew up in the slums ( I heard that in school me being called a “farm girl” because my family like that of most of that I knew tried to grow our vege and fruits in backgrounds.
      We shared for what we had the best of! At least when I still lived and was close to Seizure free all those years ago!! Then we had a close to a good neighborhood and Community Watch in my city. Lots of animals. Cats were indoor only, like mine!

      I’ve been trying to survive through hate Mongering especially especially since…..

      I can’t even phone my aunt and uncle! I don’t have my brother’s or any of my friends email addresses because of people who stole from me!!
      And make me wish that I had my WAVE bag and gloves to beat the crap out of it!! I don’t hurt people but they hurt me!
      It was the best way to get my stress and Anger out on the bag!!
      I’ve been growling for it for over 4 years now and my fur baby et cetera!!
      It’s been said out loud that I’m not that person so why was my fur baby separated torn away from me after I cleaned him, fed him, put a new collar on him that animal control cut off his neck with me watching because of a Freak that stole from my apartment claim my fur baby to be his … I heard the woman in the apartment want to destroy the walls to make my apartment and the last apartment to be one and to be hers only.
      Couldn’t do that without destroying the entire building!!
      She also said that she wanted to destroy my drum!

      When I was coming out of Epileptic seizures I heard,
      “Don’t call emergency unless you see blood!!”
      “If she doesn’t come out in 5 minutes it’s not an Emergency!!”
      From people who I don’t know! But it was said a lot outside of the apartment I was in & paid rent (how could I be there for that long without?! Someone still accuses me of not paying rent!)

      There is no anyway!

      Before I stopped traveling outside of my city I lived in, I was spending more time with my fur baby watching our “Cat” tv programs and movies before someone blew the bulb on the tv!
      (Someone spread a rumor that I was rich! But I am still being followed around and had a lot of my clothes(most just bought!!), backpacks(just given from police before Covid-19, or bought with wallets insides) my AEDS, inhalers, photos and photo identification.

      If this writes as well as a VIS
      It probably is because I have already written and read my own.

      I’m being victimized again because I have Epilepsy.

      In the year 2022 there is nothing that I can find about any law around Epilepsy in any website of any country.
      Yet there is a law to protect anyone who has a disability visible or non visible.

      Why is that since Epilepsy has been known as long as Cancer and almost as many people living with Cancer are people who live with Epilepsy.
      So campaigns and contests for Cancer 4 to 8 times a year.
      There isn’t anything campaigning for Spaying and Neutering in animals to prevent Ovarian Cancer (among FEvL and veterinarian regularly scheduled visits and to raise awareness about the above for prevention and a beautiful long life!)
      My lil fur baby was going to be scheduled for his annual visit but the animal control refused to let me take my fur baby even though his microchip had MY name attached to his!!
      I still wasn’t allowed!!

      My seizures were lower with him as were my belongings that I used to connect to the Internet as this is Australian Rules Football season right now.
      I played games as you mentioned Lumosity I used to play that daily until someone locked my iPad and stole my iPod in 4 years ago in this city that police look at me as if I’m an alien than say the lastly words that sound like “why don’t you go and take your pills and just go away!!”
      Without answering the question I originally asked! Or don’t want to be bothered with the question that I have to ask..

      Two cops said that to me.
      Never happened before 2015 when I only volunteered in this city, or took a class or drummed, danced and sang with other people.

      They knew that I lived with Epilepsy and a few knew that I took a subway train home and a bus.
      One drove me back to my apartment building!
      Sorry off track… But can you catch my drift?!

      Like

      Comment by T — April 6, 2022 @ 5:45 PM

  7. I’ve been self-isolating since my first ever seizures (and resulting injuries) on Feb 2nd. Oh, and revising the injuries turned up stage 1 Renal Cell Carcinoma. A lot to absorb all at once.
    I’m on Keppra, which is interfering with me doing my job (fatigue, cognitive issues) so that’s a concerns as well. I’ve had some feelings that might be auras (feels like I’m watching live experiences on a video) but I’m reluctant to tell my neuro.
    I feel like I’m isolating myself because I really don’t want to talk about all of this, and I don’t really want people to ask. And I think the Keppra has increased my once-controlled depression.

    Liked by 1 person

    Comment by Lee Archer — May 8, 2022 @ 12:24 PM

  8. First of all, you should tell your neuro EVERYTHING. How can they best treat you, without knowing what you’re going through?

    As for Keppra, it’s a real game changer. Here’s an article, you might find interesting:

    Keppra — What People Are Saying https://epilepsytalk.com/2021/03/11/keppra-what-people-are-saying/

    Like

    Comment by Phylis Feiner Johnson — May 8, 2022 @ 12:56 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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