Epilepsy Talk

The Isolation of Epilepsy | April 14, 2018

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/

 


14 Comments »

  1. It’s true what you say that Epilepsy & having seizures is a condition, & not a disorder as so many neurologists like to label us with. That alone with their labels of disorder/s, proves to the fact that they do not relate to most of us who believe having seizures is a condition. Some that believe it’s a disorder they have need to get another neurologist that will not treat their condition as such. Tell me WHY as I have been asking for over 50 years, as to WHY the seizures I now have today, did not happen as a teenager or younger kid, but i FEARED this all would happen to me after 30 years of life & kit sure did, that the MSG & other food toxins we have in all foods do trigger GRAND MALS in my brain today. <<< All of that is a condition, to the point if it were ever a DISORDER, maybe seizures would happen more often than they do to me now after over 57 years living with this HELL ON EARTH seizure life, that neurologist, just see me as CASE # 6937251 out of over 65,000,000 who has Epilepsy. They say I have had Epilepsy, but WHO makes the calls of WHO decides it is EPILEPSY or '''another condition''' that causes seizures ? When DX at 7 months old in 1961, the future changed for me then, even as I had NO POWER to change things then, & not much more power or the OPTIONS to change what the doctors has done to my brain over the past 57 years, that THEY are never held accountable or responsible for damaging, as the drug industry have the same rules for them too. So yeah we have the STIGMAS, thanks to all doctors that have labeled us all as to how they THINK OF US by the way the TREAT US. I know there ARE CURES for these CONDITIONS,, that they have never told us about because the loss of MONEY for them would be less if they let us know what seizure cures may help us. THAT IS A TORTURE TO EVERYONE OF US IN IT'S OWN WAY. So thank you CDC, NIH, FDA, EFA, CURE & AAN that YOU ALL have caused the numbers to go up from 10 MILLION in 1975 to over 65 MILLION & more with seizures today. None of you have ever been on OUR side. So have a DIET drink, eat a BIG MAC, & other foods, Why would I care ?

    Liked by 1 person

    Comment by C D — April 14, 2018 @ 1:01 PM

  2. I do know how you feel about the attitude of a large number of the population – it can be very disturbing indeed. I’ve had late onset epilepsy for about 12 years now I have found that I deal with this in several ways – and I have, in general, managed to deal with it. First of all, I try to “educate” them – as I am fairly sure that it is a total lack of understanding of what epilepsy really is is what causes their reaction; they are actually very nervous and scared of how to respond if one of us has a seizure beside them and they deal with it by being condescending and shutting us out.
    I try to be totally open about having epilepsy and make it sound as if it is something that is a complete and utter pain in the proverbial but just something I have learned to deal with as best I can. i then find that lots of people ask me what they should do to help if I have a seizure; there we go again – fear, nervousness! Once I’ve explained that there is very little they have to do – apart from keeping me safe etc,(you know what I mean) they usually relax and we start to have normal social conversations. I send Epilepsy Action Christmas cards and carry Epilepsy Action pens!
    I do small things like carrying an “Epilepsy Action” canvas shopping bag – the lettering is large and colourful – I’ve even had doctors remark on me having the “courage” to carry it!!!!!! If they react like that, what should we do!
    So, I know it doesn’t make our seizures go away but it does help me with dealing with it all on a daily basis and definitely feeling a lot less “weird” than I used to.
    I hope some of you who don’t do that just now, can take a deep breath and give it a try – you don’t have a lot to lose, do you!!??

    Liked by 1 person

    Comment by Margaret Hay — April 14, 2018 @ 2:46 PM

    • I have Epilepsy Talk pens and various t-shirts and I send out Epilepsy Awareness Christmas cards!

      But Margaret, aside from that, I think you have a good point.

      In their heart of hearts, people want to help. They just don’t know how. So the ignorance spirals into fear, because of lack of understanding.

      If they only knew what to do when we’re having a seizure, it would be so much more simple and productive.

      We don’t have leprosy nor are we contagious! 🙂

      Like

      Comment by Phylis Feiner Johnson — April 14, 2018 @ 3:31 PM

  3. It really seems like from what I’ve read the medical profession doesn’t have a cure or solution and just pushes AEDs that most of time have zombie like producing side affects. A Ketogenic diet could be a natural attempt although lack of enough fruit and grains can impact your fiber intake and digestive system. Neil Young mentioned the use of ‘personal stability’ since the AED’s side affects can make one not feel good.

    Liked by 1 person

    Comment by goodoldrebel — April 14, 2018 @ 6:41 PM

  4. Thanks so much for the timely and sincere response. It’s great to find a site like this where sensitive issues like these can be discussed in real life terms.

    Atkins sounds good and less extreme than going into ketosis full time.

    As far as the topic of isolation (for the most part) it can be a free and satisfying experience for a well adjusted person since we are all alone with ourselves and our thoughts most of the time in life and interacting with others like neighbors, customers while shopping etc. can be fun and appreciating these little moments in life are good experiences for a socially oriented person. If a symptom occurs while outside the real risk is that an uninformed bystander, meaning well but without sound judgement can create harm by helping with inappropriate action.

    The grass isn’t greener somewhere else. Having a routine and sticking to it regardless of medical condition is the way to live.

    Liked by 1 person

    Comment by goodoldrebel — April 14, 2018 @ 8:53 PM

  5. I get most of my fiber from greens which is not a whole lot of that if you don’t eat the daily. WATER is more needed when fiber intake is increased. I do have to ask that when no fiber is in the diet, Does a GOOD BACTERIA ENZYME such as Acidulphulous help all seizure condition or just some, to where it helps all the brain / nerve endings work better ? The top neurologist at the NIH back in 2000 told me the 2nd brain is in the gut in how the nerve endings from brain activity & nerve signals acting as they do, affects the brain in how it can be calm & relaxed to excited & fired up to where seizures can happen, and strokes or whatever. If fiber has been in a diet, & no water has been in the diet, excitotoxins can be trapped into the digestive track, making fiber not a popular thing to have, where no water has been had, plus if MSG, ASPARTAME & etc… never gets through the body, be alert what could or will happen. Last I looked at labels of ATKINS FOOD it did have MSG’s in it.

    Like

    Comment by C D — April 14, 2018 @ 9:21 PM

  6. I love your blog. To me this is the most accurate post regarding personal epileptic struggles aside from seizures themselves. Awesome piece! 🙏

    Liked by 1 person

    Comment by Micci Mane — April 15, 2018 @ 1:39 AM

  7. Thanks Phyllis,
    You brilliantly described the true nature of the costly social price many of us had to pay to survive our unpredictable seizures & yet, had difficult to openly admit it.
    Learning how to accept, cope & survive seizures & facing the eventual price of social stigma, deprivation, isolation, maltreatment & discrimination related to Epilepsy are the most dramatic radical changes one could write volumes of books about the everyday struggle under the constant shadows of Epilepsy.
    Starting from total ignorance of the unfortunate predicaments of Epileptic seizures, thanks to ALL members of this forum sharing their experience, I learned to survive 20 years of epileptic seizures & the dramatic social consequences of the unfortunate predicament, I desperately tried to hide & cover up from my own family, friends & coworkers to only end up struck with grand mal seizures for the whole world to see.

    Knowing what I learned from Epilepsy now, it would be difficult to judge society for failing to understand the deep traumatic experience of Epileptic seizures, resorting to paranoid reaction avoiding another drama, as much as the victims of Epilepsy concern to avoiding the social integration once was simply available for grant, by the fear of another unpredictable episode looming in the back of their heads.

    Fortunately, openly discussing the true nature of our medical difficulty & bridges to social integration would certainly help to overcome the barriers of facing, coping & living with Epilepsy while still maintaining the social relationships we had built for a lifetime.
    Best Wishes for all.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — April 16, 2018 @ 8:52 AM

    • Gerrie, thanks for your eloquent reply.

      This group has also gone a long way towards helping me understand epilepsy and those who have it.

      I just wish the world wouldn’t turn their backs in ignorance and fear when the subject of epilepsy — or a seizure itself — comes up.

      But, it turns out, that’s our job.

      Like

      Comment by Phylis Feiner Johnson — April 16, 2018 @ 11:43 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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