Epilepsy Talk

The Isolation of Epilepsy | October 18, 2020

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/


18 Comments »

  1. “But, it’s is also very manageable with the love, support, acceptance, openness and understanding of family, friends, peers and the community.”
    Yes, my particular community, city and state provide an immense amount of resources to me. I am both astonished by it and profoundly grateful for all they do. However, family, friends and peers are a different story. Receiving an epilepsy diagnosis is an acid test to see who is going to accept it, and you-or not. They either step up, step off, ghost you, or even demean and disrespect you- literally-because now, you are now ‘defective.’ Or, my favorite, they think you are faking it to get attention?! Yes, I blew up my life just to be fawned over like a crazy martyr.
    I am truly blown away by those who love me unconditionally- and don’t consider epilepsy to be a stigma-and they are not embarrassed by me or this disease. It’s a non-issue for them; and at this point, for me as well in terms of even caring about what other people think anymore. It’s none of my business what other people think of me-only how they treat me. That, gives me some peace & power, as well as acceptance, in this war with my brain.
    I guess to add to your point, it’s the physical and mental vulnerability I fear. Every time I dare to venture out, which is rare, I risk putting myself in the hands of people whom I might frighten; or who might abuse or neglect me-strangers that are well-meaning, or not so well-meaning. I try to give others the benefit of the doubt, not necessarily because I belive them to be ignorant; but because our society as a whole doesn’t promote education and understanding about epilepsy. Ironically and sadly, that “sensitivity training” needs to start in the medical community and health-care facilities. I have done my part to raise my voice to each and every health-care system, their patient advocates; and yes, even to their executives, whose employees have mistreated me.
    Finally, I do give a brief explanation to ‘new people ,’ so they will know what to do and not to do should a seizure moment arise. I say it with a light and positive attitude, so they are put at ease. I find humor to be the best way to deal with it all, with self and others.

    Liked by 1 person

    Comment by Diana D — October 18, 2020 @ 1:27 PM

    • Diana, how beautifully said.

      Yes, I think that family, friends and associates form the backbone of love and acceptance we all crave.

      And in my heart of hearts, I do believe that people would like to help, they just don’t know how/what to do. That’s where education comes in. And sensitivity training.

      Awareness is a two-edged sword. There’s the self-awareness of who you are and how you feel about your condition and yourself. Then, there’s the awareness that others may hurt you, reject you or just plain gaslight you.

      (See previous article: Gaslighting — What to Do When It Happens To You https://epilepsytalk.com/2020/10/15/gaslighting-what-to-do-when-it-happens-to-you/)

      All together, this takes strength and understanding. To balance what and who you know. I praise you for your attitude of peace and power and acceptance. I’m sure this carries you far.

      You are a magnificent example and an inspiration.

      Like

      Comment by Phylis Feiner Johnson — October 18, 2020 @ 1:42 PM

  2. Phylis, You are part of my impeccable community that offers understanding, compassion and wisdom. You inspire me and comfort me. I am so very grateful to you. You are a vanguard who lights the way in the darkness of epilepsy. You are a powerful voice for us all. Thank you so very much.
    PS: Thank you for the Gaslighting article. It is a chronic personality disorder or disease among many physicians and clinicians.

    Liked by 2 people

    Comment by Diana D — October 18, 2020 @ 2:09 PM

    • I’m pretty much overwhelmed by your compliments. Especially from someone as singularly strong as you.

      But, I’ll accept them with grace and thanks.

      Like

      Comment by Phylis Feiner Johnson — October 18, 2020 @ 2:22 PM

  3. I like this article. I must say I’ve had my embarrassing moments but thank gosh for family and friends who have helped me believe in myself and supported me through challenging times. Very few people have been stupid with me. I’ve educated them upfront and they respect me more I believe.

    Liked by 1 person

    Comment by Janet deardorff — October 18, 2020 @ 2:35 PM

  4. Knowledge is power. The more you share, the more they tend to care. And appreciate who you are.

    Like

    Comment by Phylis Feiner Johnson — October 18, 2020 @ 2:39 PM

  5. Been there, done that. Twelve years of discrimination and mistreatment from someone at employment thinking they knew everything, but apparently totally uneducated about Epilepsy. Only to have a mild spell that involved being unable to answer a question- a boss was forcing me numerous times every day to ‘discuss the problem’ (in private- of course so no one else would be aware how he was treating me- which did no good, simply because he was not patient to let me explain situations, nor was he even intelligent enough to know what I was talking about- ‘the more you share;, they appreciate you, the more they care,’- it sure would have been nice..

    Liked by 1 person

    Comment by Karen — October 18, 2020 @ 4:34 PM

    • It is actually a HIPPA violation and illegal for your employer, supervisor and co-workers to discuss you health issues in the workplace. It is a violation of employment law as well. You feel compelled to allow your boss to lecture you about epilepsy and seizures because he is in a position of authority. The dialogue takes place under duress-despite it seeming voluntary and mutual. I have been in this “rodeo,” and experienced the boss who violated my privacy, as well as discriminated against me. I am not a litigious person-but years later, I regret not suing the company. It was blatant and humiliating. If someone feels uncomfortable with a situation like this, they have the right to report it confidentially without fear of reprisal. It should be documented by HR. Im so sorry for what you have been through. I know, sometimes people use transparency and honesty against us.

      Liked by 1 person

      Comment by Diana D — October 18, 2020 @ 6:18 PM

    • Karen, Diana has the ultimate answer above, but I thought this article might interest you:

      Epilepsy, Employment and the Law https://epilepsytalk.com/2019/02/20/epilepsy-employment-and-the-law/

      Like

      Comment by Phylis Feiner Johnson — October 18, 2020 @ 6:39 PM

  6. Isolation comes with epilepsy i think. Epilepsy is like having a boxer shadowing u and if u make a wrong move or twitch, it may come with an upper cut and knock u out. So if u are outside and alone the last thing you would want is to be knocked out. This looming over our heads, the want to go away from our safe place, home, is not very appealing i think.

    Liked by 2 people

    Comment by Zolt — October 18, 2020 @ 9:39 PM

    • Good analogy!

      I call it a storm cloud over your head, waiting for the lightening to strike.

      Who wants to be out in a storm? You have to have a pretty strong umbrella.

      Like

      Comment by Phylis Feiner Johnson — October 19, 2020 @ 10:24 AM

  7. Striking at any given moment, seizures are certainly unpredictable & disruptive to social wellbeing, forcing ordinary people to panic in fear therefore avoid the medical drama & shocking tragedy from disrupting their lives, making Epilepsy difficult for ordinary people to maintain normal relationship with the patient.
    Thereby, the deep fear of the tragic medical incidents & misunderstanding over the unpredictable seizures becomes the root cause of social isolation, losing too many friends, coworkers & family members to epilepsy.
    Adding the patient’s concern over another seizure striking again restrains the social relationships of all the people associated with the patient, turning the patient into hostage of Epilepsy.
    But providing technology & social media can help maintain distant relationships closer, technology has broken down the impact of isolation of the patient, making the isolation easier to bear than it has ever been before.
    Therefore, it’s encouraging to know that the bondage of isolation under epilepsy can be torn apart by technology.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — October 19, 2020 @ 1:42 PM

    • And now, for a little idealism:

      “I want people with epilepsy to know that there are ways in which they can play a role in their own recovery. It’s all in how they approach what is happening and how they can use that as a catalyst for their own growth.

      If there’s one thing that I’ve learned, it’s that people are willing to embrace you if you share your story.” Danny Glover

      True or False?

      Like

      Comment by Phylis Feiner Johnson — October 19, 2020 @ 2:21 PM

      • I’ve come to know & admire a man who lost two of his legs & one of his hands on car accident, moving foreword & backward on wheelchair with one hand turning the wheels of his manual wheelchair going all over town everyday.
        Watching his willpower to move on unhindered by his crippling condition makes me to think, there are people out there who refused to be victims of their medical difficulties.
        Therefore. I totally agree with Danny Glover that once people come to know, understand & realize that you’re a whole lot more than the medical difficulties you got to live with, I believe people will come to accept you for who you are & NOT for the medical hardships you’ve been going through.
        After all, your medical condition does NOT define your personal character.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — October 21, 2020 @ 4:48 AM

    • Profoundly expressed and written.
      Thank you Gerrie.

      Liked by 1 person

      Comment by Diana D — October 19, 2020 @ 3:15 PM

      • Diana, You’re very welcome.
        As you can see that EpilepsyTalk forum making it possible for all of us from all over the world to come together to freely share our experience out in the open air, the walls of isolation due to epilepsy have fallen down, replaced by open discussion on how to cope & conquer epilepsy.
        Thanks to technology, we’re NOT hostages silenced by epilepsy anymore.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — October 21, 2020 @ 5:22 AM

  8. No matter how bad off you think you are there is always another who is worse off than you ! If you live with this knowledge life is much easier. Wally

    Liked by 1 person

    Comment by Wally — October 25, 2020 @ 4:48 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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