Epilepsy Talk

The Isolation of Epilepsy | July 9, 2010

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

Like all of life’s challenges, epilepsy can be handled as a tragedy, or as a problem to be solved. Epilepsy doesn’t have to mean the end of “normal” life. You can find love, friendship, employment, hobbies and meaning just like everybody else. But to do so requires a “can-do” spirit and a willingness to work with the problem instead of running away from it.

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!

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://www.aboutkidshealth.ca/Epilepsy/Epilepsy-and-Social-Adaptation.aspx

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

http://www.epilepsymatters.com/english/lwebehavioural.html

http://www.epilepsynl.com/news/healinganddealing.html

http://www.entrepreneur.com/tradejournals/article/205906634.html

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


20 Comments »

  1. I have the epilepsy fear of having seizures when going for walks or doing other things.

    I think that is why I kept cancelling my colonoscpy, fear of having seizures. It did happen and the doctor took control and gave me medicine and less anesthia. It was a success and I have no polyps or cancer.

    That helped me to learn not to fear having seizures. I have a long ways to go in conquring it. I have started and I believe I can start taking control of my life.

    Like

    Comment by Ruth Brown — July 10, 2010 @ 3:55 AM

  2. BRAVO for you, Ruth. Hats off to you!

    Like

    Comment by Phylis Feiner Johnson — July 10, 2010 @ 4:54 AM

    • EXACTLY,,, Point by point, every line of the article to what makes EPILEPSY very difficult for the patients, families & society to acknowledge, accept & threat.

      Imagine ,,, In human history, Epilepsy is a whole lot older under-treated heath problem than AIDS, CHOLERA, MALARIA, TB, DIABETES,,, etc.

      Therefore, there had to be a better way to make EPILEPSY totally as common as any other health difficulty, needs to be treated commonly.

      Thanks for your devotion to this website, some of us have learned the hard way on how to acknowledge, accept, cope & live with this infamous menace.

      Like

      Comment by Gerrie — May 12, 2012 @ 5:07 AM

  3. Something sad happened last night. We were having dinner with friends we’ve know for 15 years and Deb mentioned a famous epileptologist in NYC that she thought I should meet. (That’s not the sad part!)

    Then Alan blurted out from nowhere that he had an aunt who had epilepsy. Oh yes, and he had a cousin too.

    In 15 years, he had never mentioned it, even though he knew I had epilepsy and I had become an epilepsy advocate.

    Was he so ashamed that he “forgot” to mention it sometime during the last 15 years???

    Like

    Comment by Phylis Feiner Johnson — October 9, 2010 @ 9:57 PM

  4. Phylis, it does not sound to me that he was “ashamed to mention it.”

    You know him better than I do. It sounds to me like Alan was just responding to what Deb said. If Deb had not brought up epilepsy, Alan would not have either.

    Like

    Comment by Ruth Brown — October 10, 2010 @ 2:29 AM

  5. In conversations with others, I would not want epilepsy brought us all of the time. Wow, how boring if that was the only thing that we had to talk about.

    There is so much in life that we can talk about with our friends.

    Like

    Comment by Ruth Brown — October 10, 2010 @ 5:04 AM

    • I’m so caught up in this (6-8 hours a day!) that it’s like all things epilepsy, all the time.

      I must say, I’m afraid I bore people to tears. 😦

      Like

      Comment by Phylis Feiner Johnson — October 10, 2010 @ 5:36 AM

  6. Phylis, you make everything so interesting and educational that you never bore us, at all.

    When I am on the computer to long, it is epilepsy all of the time. That gets to me too. I feel isolated at those times.

    I am learning not to stay on the internet as long. I am taking breaks and doing other things every day.

    You need to take a break everyday. You can do what I am starting to do. I leave a topic and then I wait for a few comments to go back to it. You do not have to answer every comment.

    My son is trying to get me out of the house everyday now. Maybe, I will start. It will be good for me.

    Like

    Comment by Ruth Brown — October 10, 2010 @ 10:51 PM

  7. Oh Ruth, you are always the source of such great insights!

    I do try to walk every day with my walking partner. But it seems like I’ve given up lunches with friends and other social stuff to rush back to the keyboard and look for people in trouble. It’s almost an obsession.

    My shrink and my husband are afraid I’ll burn out, but I have so many ideas and so many articles I want to write. I can hardly find time for anything else!

    Like

    Comment by Phylis Feiner Johnson — October 11, 2010 @ 12:18 AM

  8. Phylis, it is an obsession. I know I can wait when I am in trouble. My problems are not as bad as yours right now.

    If you burn out, you will not be able to write the articles and do the research you want to.

    Go out and eat lunch with your friends. That is an order, my prescription for the day.

    Like

    Comment by Ruth Brown — October 11, 2010 @ 2:56 AM

    • Ok, Mom! How about on Wednesday? (I have a standing lunch date with a friend.)

      Thanks for looking after me!

      xoxoxoxo
      P

      Like

      Comment by Phylis Feiner Johnson — October 11, 2010 @ 9:30 PM

  9. I am your friend, not your Mom!! I do care about you.

    Wednesday is a great day for you. Sorry, I have not been around for a couple of days for everyone of my friends.

    Our family has had the flu shot. My son had a reaction and went to the ER. He was out in about 20 minutes with a prescription. He is fine now.

    I had a reaction, too. I did not go to the ER. I just felt rotten and took care of myself. I am over it now.

    When my husband went to get his flu shot, I told him to get a prescription for an allergic reaction. I had to force him to go and fill it. He did not need it. I was so glad.

    Have you had your flu shot?

    I am depressed because of it. I hope to get over that soon.

    Like

    Comment by Ruth Brown — October 13, 2010 @ 6:00 PM

  10. I really don’t believe in flu shots because the stuff they inject into you is so toxic. Plus it’s usually developed for a flu long gone and doesn’t address the current flu.

    No attack meant here…just my personal opinion.

    Like

    Comment by Phylis Feiner Johnson — October 13, 2010 @ 7:20 PM

  11. Everyone has different ideas on the flu shot. That was not an attack, just your idea. I wonder when that topic is going to come here. It always does this time of year, get everyone’s ideas about the flu shot.

    We are having great warm weather. When we do though, the air quality becomes unhealthy. I have asthma, so that is bad for me. That keeps me isolated.

    Like

    Comment by Ruth Brown — October 13, 2010 @ 8:23 PM

  12. The neurologist I see for my epilepsy says, in response to my query “will this affect my life span?” “No, it will not”. Can this be true?

    Like

    Comment by meesher — May 23, 2012 @ 7:48 PM

  13. I (imho) totally agree with him. This is NOT a matter of life or death.

    As I said before (and maybe my beliefs are biased because I spent 10 years writing about alternative medicine), I really don’t believe in flu shots because the stuff they inject into you is so toxic. Plus it’s usually developed for a flu long gone and doesn’t address the current flu.

    Like

    Comment by Phylis Feiner Johnson — May 24, 2012 @ 9:54 AM

  14. To Whom it may concern My Name is Tawny Shepherd, I am 47 years old and I have Epilepsy. in the end of sept of 2013 i had open heart surgery. A Triple bypass was attepted and also un nessasary. The Surgeon was full aware of my seizures and sent me home unprotected and without a brace. He gave my family members the impression that he did not believe that i was epileptic because i do not take traditional medicine for it . so he dismissed my handicap that i have had to live with for so many years Gran maul/photosesitive/statis seizures. They recomended that i go to cardio rehab which is standard to all heart patients . they recomomended 3 rivers health track which is five miles from my home and i do not drive because i have epilepsy so this would work out great for my driver. however when 3 rivers health track finally made the arrangements to see me when we were in the intial interview ,I informed the gal that i have epilepsy and have seizures sometimes but that i did not want a ambulence called and i would sign any paper they needed me to sign relieving them of injury suit if i should have a seizure there well i said that because of her responce which i get the look alot . so she said she had to talk with her supervisors and get back with me . this was after she told me how great the program was and how much benifit it had for your heart and how just the comodery of it all helped with the depression and then after my walk thru she walked me out and said they would be in touch after the holidays so weeks went by nothing then finally a call from the gal saying ” we can not enroll you in the cardio rehab here because you have epilepsy we can not accomodate you or except risk im sorry have a nice day .”…. um um wait a sec ? they are on the very campus of the Three rivers hospital they are even called Three rivers Health Track how can they turn me away based on my disability and how can they not refer me to home health rehab or anything ? and now guess what its march of a new year 6 months later and ive been confined inside and just went back to the heart doc, not the surgeon ,he does a new heart cath and ultra sound tells me i shouldnt have had open heart at all tells me the discrimanation was wrongfull is now sending me to U of M heart specialist because the open heart was done wrong and was not needed and nothing was fixed. im still in bad shape and if i hadnt been discriminated against right after my original surgery when in fact i did have seizures and fall and cause new injury to chest and collar bone so i dunno i need some help ? I truly feel in my broken heart that as much courage as it takes me to get thru a normal day and as hard as i fight to get thru another day just to be let down by a bunch of people because of my disability …have seizures in public is so very hard to live with let alone then to have my issues used against me to stop me from recieving normal care hurts me deeply. i feel had i had the cardio rehab including all the programs they avail then i would not be in this sitution with my heart. please someone answer me ? help me figure this out?

    Like

    Comment by Tawny Shepherd — March 20, 2014 @ 12:45 PM

  15. Tawny, a doctor once told me that a hospital is a place for procedures. And I think, unwittingly, you were a victim to that surgeon’s ugly grab for money. (Cut and paste.)

    In the case of my driver’s license being seized, I went to my neurologist and then he sent me to a cardiologist to rule out any heart problems.

    I don’t know what doctors are available to you and what their specialties are, but someone definitely took advantage of you.

    But at least you’re on the right track now.

    As far as rehab is concerned, it’s often about insurance and money. (And, of course, CYA)

    My PT ladies are great because I’ve had so many injuries due to the seizures (I’m wearing a knee brace now) that they see it as their mission to make me better coordinated, centered and to try to curtail all my falling.

    One thing I would suggest, if you haven’t already gone to your neurologist, get an evaluation from him/her. (And a scipt for PT.)

    And I do think you can find a less paranoid PT service to do for you what my wonderful ladies are doing for me.

    (Unfortunately, I haven’t seen them in a while because I have no driver’s license and the fact that I’m suffering from the gap of their care is evident in my endless falling again.)

    Tawny, please don’t panic. What you need is the right kind of care from people who care about you.

    I have faith that you will find them. You’re already on the way…

    Like

    Comment by Phylis Feiner Johnson — March 20, 2014 @ 2:40 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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