Epilepsy Talk

The Isolation of Epilepsy | April 4, 2019

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://psychcentral.com/lib/2006/embracing-the-challenge-of-life-with-epilepsy/

http://www.ucb.com/_up/ucb_com_news/documents/Epilepsy_and_Quality_of_Life.pdf

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/

 


25 Comments »

  1. The last part of this article really is the bullseye, where the other areas you mentioned are real & powered by others, who believe that they know better. They can reject us any way at all, even family will do that, with their own ego & status that they have, which I would not want. They also live in ways where God is not needed or important to them, where a person like me is always looking up for the answers of WHY, & WHEN will this ever end. As Jesus said that he has overcome the world,, we can to with his help, by his words, & hand to guide us. Who in this world will do that for us ? No employer will, no job placement organization, no college, no PTSD’s Public Transportation System Drivers, & no so called friends will help either. It’s all about the SELFIE and WHAT DO I GET OUT OF IT WORLD, with having the BIG EGO with the rest of the world to go with it for ”their approval”, when at the end, all that means nothing. But if anyone of them would have a seizure, Who would they think of 1st ?

    Liked by 1 person

    Comment by C D — April 4, 2019 @ 1:21 PM

  2. When one has epilepsy yes at the time of the seizure one is out of control , and life at times is a challenge and really doesn’t matter what others think yes it’s easier to say this than to actually live individuals with epilepsy better understand it. Thank you for your post and educating others .

    Liked by 1 person

    Comment by elena — April 4, 2019 @ 2:12 PM

  3. I’ve been ‘lucky’ in a way- my tonic clonics have always been first thing in the morning or nocturnal so I’ve never had one in public (so far/touch wood) but I’m so acutely aware of how sz patterns can suddenly change for no reason that I’m always aware of the possibility every time I step foot outside of the house. I’ve noticed that since my sz frequency has got worse in recent years so has my confidence. I’m spending more time at home (impossible for me to hold down a job so I stopped trying years ago) and when I do go out it’s mostly because I have to- appointments, supermarket etc. Some of that is having to spend more time recovering, some of it my injuries making walking harder, so I don’t do it for pleasure much anymore.

    A couple of days ago a family member offered to pay for me to take an overseas trip. I’ve been lucky enough to be able to do some travel before my epilepsy/injuries became more debilitating, but I’ve just had to turn down the opportunity for a trip to a long-haul destination because I know that physically/mentally I can’t do it anymore because of this stupid brain of mine. There’s still the possibility of going somewhere closer to home but I feel too scared to leave my country anymore. I don’t even want to make any plans since I no longer feel confident I can get travel insurance 😦

    Horrible enough that the actual seizures are, I still think it’s the collateral damage that’s more of a problem. The mental/emotional/psychological/physical impacts that can’t be seen, and are impossible to explain to anyone who doesn’t have epilepsy.

    Liked by 1 person

    Comment by Katie — April 4, 2019 @ 9:05 PM

    • Oh Katie, I couldn’t agree more. It’s the collateral damage that causes the deepest pain.

      Invisible as it is, it’s there, every moment, ready to rain its doubt down on you.

      Like

      Comment by Phylis Feiner Johnson — April 4, 2019 @ 9:26 PM

  4. C D- a masterpiece- just hope enough people read it; oh, and if they have the intelligence to understand what it’s all about. (a lot think they’re smarter than an epileptic)

    Liked by 1 person

    Comment by Karen — April 4, 2019 @ 9:14 PM

  5. Thanks so much for posting this, Phylis. I have had issues over the years, and even recently. They have run the gamut from employment to homemaking to housing even getting to church! It is so difficult to be intelligent but underemployed. Then there are the ancillary disabilities such as anxiety, depression and the isolation of people not even trying to comprehend. Or they offer their ideas of solutions, like, “Oh you’d be fine if you just took marijuana, got a support dog, etc.” Unless someone has walked in my shoes, in my chronic pain, near death twice, shut up! I just want someone to listen with empathy, as I have listened to them. My friend told me to lower my expectations of people. I just want people to treat me with dignity. I don’t want people to treat me like an invalid, talk slower, or ignore me. I just want to be like everyone else – have a “normal” home with a “normal” income and a “normal” life. Peace.

    Liked by 1 person

    Comment by megambon2164 — April 4, 2019 @ 10:55 PM

    • Oh, I think we all want “normal”.

      But normal to us is a contradiction.

      One that unfortunately few understand.

      Except those who are truly our nearest and dearest.

      Like

      Comment by Phylis Feiner Johnson — April 5, 2019 @ 10:58 AM

  6. It’s like a double edged sword. If you don’t talk about it, people forget you have it and are angry when you avoid situations that can place you or loved ones in danger. “No, I’m not going to go to the casino for dad’s birthday. Those lights aren’t good for me.” “You got your driver’s license back? Oh, good. You can drive my family on holidays with our 89 yr old dad for two days while I ride my motorcycle. I’m sure you’ll be fine.” I think I’ll go with my own family, thanks.
    While we want as normal a life as possible, we will always have that fear hanging over our head.
    I have a volunteer position that I’d probably lose if they found out. My part time day job knows because I’ve had a seizure walking to work and they’re very supportive. I’ve missed days for apts and tests with no problems.
    Some family members are understanding and others … you guessed it. I speak up for myself and I’m ruining their vacation.
    I don’t think I’ve been stigmatized but I fear it. My biggest problem is with ignorance.

    Liked by 2 people

    Comment by Marlyn — April 5, 2019 @ 2:04 AM

    • Marilyn, you couldn’t have said it better: It IS a “double edged sword!”

      My parents treated me like a pariah, so that nothing was expected of me.

      But where epilepsy was my “dirty little secret,” I felt bound and gagged to do everything expected of me. Whether I could or not.

      Of course, my body rebelled with seizures, so I had to “confess,” but nothing really changed.

      I was still the girl who had something “wrong” with her. And I kept plodding on.

      Like

      Comment by Phylis Feiner Johnson — April 5, 2019 @ 10:33 AM

      • Phyllis, you are an inspiration. Your parents might have needed a reminder of the golden rule: Do unto others as you would like done to yourself”.

        Liked by 1 person

        Comment by Marlyn — April 5, 2019 @ 8:45 PM

      • They needed more than the golden rule.

        They needed honesty, empathy, intelligence and compassion.

        Grrrr….

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 5, 2019 @ 9:03 PM

  7. Reblogged this on catsissie.

    Like

    Comment by catsissie — April 5, 2019 @ 5:03 AM

  8. Having a seizure can be a very stressful and at the moment u experience it it’s a form of hell. Who in their right mind would want to experience this behavior around unknown people, let alone known people. When i have one i just want to crawl into my little hole and face the devil alone.

    Liked by 1 person

    Comment by Zolt — April 5, 2019 @ 8:18 AM

  9. It’s sort of like hell makes a house call, but you never know when. 😦

    Like

    Comment by Phylis Feiner Johnson — April 5, 2019 @ 10:45 AM

  10. The point is not being afraid of what others think if the danger of having one and falling on a hard surface and hurting oneself plus not remembering where one is at the moment. The other part is when one is not receiving any disability benefit so your funds are limited just because one has epilepsy doesn’t means you get any qualify for disability benefits. I had a episode last night on a hard surface so my body is injured and still recovering.

    Liked by 1 person

    Comment by elena — April 5, 2019 @ 11:06 AM

    • Oh Elena, I feel for you.

      Worrying about what others think and the unanticipated seizure in their presence, makes it a double jeopardy.

      And the potential for physical damage is downright scary.

      Plus the disabilities, both physical and financial stink.

      Have you considered getting a lawyer?

      Like

      Comment by Phylis Feiner Johnson — April 5, 2019 @ 11:19 AM

  11. Ever since I came to know Epilepsy & started getting knocked out & down with unpredictable seizures, I feel a hostage of invisible demons I can not escape from, stricking anytime, anywhere & everywhere for the whole world to see.
    The dreadful humiliating experience had robbed me of the very freedom I treasured, the jovial social & independent economic status I cultivated for most of my life.
    Therefore, desperately trying to avoid the unwanted attention & humiliation connected to/with my seizures, turned into keeping distance from the very family members I dearly love, lifetime good friends, coworkers, acquaintances & neighbors I used to socialize, leading into
    tormenting isolation, waiting for another seizure to strike but avoid the public humiliation that is going to attract unwanted attention.
    As they say, everything comes with it’s own territories.
    So true, if only seizures had timetables to set those territories.
    Thanks God, we got each other & EpilepsyTalk to eliminate the tormenting isolation we’ve learned to hide deep in our hearts, minds & soul.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — April 5, 2019 @ 5:03 PM

    • The territory is treacherous and scary. Full of unanticipated landmines.

      And you’re right. Only we can navigate them.

      Sometimes together. Often alone.

      Like

      Comment by Phylis Feiner Johnson — April 5, 2019 @ 8:19 PM

  12. May I please say something? 🙏🏼😨. If so thank you 😊

    Like

    Comment by Kathy S.B — April 5, 2019 @ 8:32 PM

  13. Reading through this thread, this is the reason why sites/blogs/forums/support groups are absolutely vital for us. All of us with epilepsy can read these posts and instantly understand, and most importantly if they’re new to epilepsy, or haven’t had any or much contact with others then just reading that there’s so many others out there that feel just the way you do- that’s big!! To know what you’re feeling isn’t ‘crazy’; that in context it’s actually perfectly rational. That you’re not imagining things.

    I can read all these above posts and completely understand where the posters are coming from, even the experiences I haven’t personally had to deal with. But that’s because I have epilepsy. I just wish it was possible to make everyone else understand how it is from our perspective. I know many try to but I really don’t think it’s truely possible to. The same way I can’t pretend to understand what it’s like to have any other chronic health condition, except the broad reality of living with a chronic condition.

    But at least we have each other 🙂

    Liked by 2 people

    Comment by Katie — April 5, 2019 @ 9:56 PM

  14. Eloquently said Katie.

    Beautiful. And so very true.

    We are a family.

    Here to help, comfort, guide and accept each other.

    For all that we are. And all that we are not.

    Blessings to you.

    Like

    Comment by Phylis Feiner Johnson — April 6, 2019 @ 8:24 AM

  15. I am Epeliptic and i dropped and have several seizures in my town centre,and AFTER 45MIN A NEIGHBOUR RECOGNISED ME AND REALISED I WAS FITTING AND CALLED 999

    Liked by 1 person

    Comment by Anthea — April 11, 2019 @ 9:26 AM

  16. OMG Anthea. Have you found a neuro and been tested and diagnosed?

    Thank goodness for your neighbor!

    It sounds like Atonic Seizures (Drop Attacks) to me.

    Without warning, a person will abruptly lose consciousness, collapse and fall to the floor.

    Your head may drop suddenly, your eyelids may droop, your head may nod, and you may drop things.

    This is caused by sudden loss of muscle tone.

    Although it’s not usually associated with loss of consciousness and there is no convulsion, it’s possible to bang your head as you fall.

    Recovery occurs after a few seconds. You regain consciousness, and can again stand and walk.

    Like

    Comment by Phylis Feiner Johnson — April 11, 2019 @ 10:55 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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