Epilepsy Talk

The Isolation of Epilepsy | August 6, 2021

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!

To subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom box of the right column, enter your email address and click on “Follow”

Resources:

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/


27 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — August 6, 2021 @ 12:15 PM

  2. Another great article!! Yes the fear of having seizures is real, since one doesn’t know when it will happen and in my case before taking gabapentin, it would happen at the worst possible time. It’s not that i’m afraid to go out but if i dont’ have to i’d rather not. When i’m feeling good enough to go out, i’ll make the outing as short as possible, no window shopping, i go in and get what i need and get out. Now that i’m retired, i can choice when i feel good enough to go outside.

    Seizures are not something i want to share with people. When i have one i prefer to be by myself in the safety of my own home, which i’ve made as much seizure proof as possible. Therefor when i’m not at home i’m out of my elements and a seizure could happen in a dangerous circumstances. Like driving. Fear is real but sometimes u need to take a chance and roll the dice and hope for the best.

    Liked by 2 people

    Comment by Zolt — August 6, 2021 @ 12:38 PM

  3. Ditto to everything that Zolt wrote. Also, I experienced isolation in the first years of my diagnosis with epilepsy – no driving due to the uncontrolled seizures. Family and friends had their own lives to live, yet they would take me to “important” appointments. Getting out for a quick errand was simply not important enough to ask for a ride. (Anyway, that became my interpretation of the situation.) Additionally, you would think that being introverted would ease the situation, but I found that even I as an introvert needed some sort of social stimulation. A trip to Walmart just to get that literal gallon of milk and carton of eggs went way up on my priority list. But even in those situations it still was in the back of my mind that I could have a seizure right in front of all these people or on the security camera. Epilepsy became that Catch-22 for me, until what you wrote in your article “Ultimately, you are in charge of your life!” I began to put into practice. I wasn’t pretty – and still isn’t – but it got me out of the house. And now it’s time to go to CVS and pick up yet another (sigh) prescription.

    Liked by 1 person

    Comment by George Choyce — August 6, 2021 @ 1:43 PM

  4. Is CVS a SEIZURE TRIGGER in your town/s ? It is so unpredictable anymore to think that you have a doctor who CALLS IN a prescription, only for you to be told it wasn’t called in OR another CVS store has it, which I KNEW was not the case today. Yesterday for some reason the CVS store wasn’t open & the prescription that I wanted was on their VOICE MAIL TODAY, & NOT READY for pick up unless I went to the next closer store to me to get it, where 1 month ago I had to EXCHANGE my vimpat for the right tablet, where I was given the wrong VIMPAT MG TABLETS. And with every refill I am always signing to get it & they will not refill it but within 2 days before I take my last that I have. So what happens when you are away from home for a few weeks & you need MORE OF IT than that 30 day supply before you come back home ? All pharmacy’s I believe do nothing but add S T R E S S to your life, where they know why you are taking the drugs you get, and if they believe they can play HAVOC with your brain chemistry, then they have no problem to do just that. Example for the WINTER MONTHS my doctor writes out for a 90 day supply, knowing that roads here in WV can be more slick & risky to drive on, so if you have a 90 day supply for the winter season, then you need NO refills from Dec to March. But you never get their thinking brain cells to work that way at any drug store, and if the weather gets bad & you are out of your AED’s you can forget any mail service coming to you for VIMPAT or any other AED’s that is considered to be a so called ”controlled substance”. And in the winter i am more at risk for seizures, that I am in Spring Summer or Fall.

    Liked by 1 person

    Comment by James D — August 6, 2021 @ 2:35 PM

  5. I hear that George, i lost my license after i had a grand mal on a busy highway. That was horrible, because i’ve always loved to drive and not being able to is like taking a kids bike away. While my license was in limbo i payed my friend to chauffeur me to and from work. I was happy and he was happy since he was unemployed and needed the extra money. I was happy as a clam to get my license back, but i don’t abuse the privilege whereby i try to drive only if absolutely needed. I leave fear behind and just go, even tho it does loom over my head and it’s in the background always, it’s not at the front of my thoughts. If it was i’d forget half the stuff i went for. 🙂 Now the most important thing on my list of places to go is basically the store, when i run out of either milk or bread it’s time to go to the store. I will stock up so i don’t need to go for a while since the nearest store is like 25 miles away.

    Liked by 1 person

    Comment by Zolt — August 6, 2021 @ 2:36 PM

    • I have to admit that I was rather timid after losing my license for 8 months. (I drove into the back of the garage wall.)

      Of course, during those 8 months I had to “rely on the kindness of strangers” to get meds, milk, go to appointments and anything else you can think of.

      I think the fear is very palpable. Wherever, whenever you have have a seizure. It’s a fearful event. Whether it’s in front of people or alone. It’s just plain scary.

      I don’t care how resolute or strong you are. The unknown is enough to keep you isolated and others at bay.

      Not because you want to. But the feeling that you MUST, for self protection.

      Like

      Comment by Phylis Feiner Johnson — August 6, 2021 @ 3:30 PM

  6. I moved to Oregon approx. 2 years after I was diagnosed….. what a great state to have a debilitating condition like Epilepsy! I highly encourage anyone thinking about moving, to give it a ponder!

    Not only is it beautiful, but OHP (Oregon Health Plan) is available for anyone who cant afford “regular” insurance….. it covers medical as well as dental….. it covers my AED’s (zero co-pay), it covers not only visits to my GCP, but also the Psychotherapist visits if I choose to start that again, as well as regular visits to my Neurologist! There is also a company called Ready Ride which is completely covered by OHP, and for me living out in the middle of nowhere, its a 40min drive to my doctors office! They just require a 24hr heads up…. no problem!

    Not to mention SNAP (Supplemental Nutrition Assistance Program) being available for added food assistance!

    Even though my EX-wife hated it and left me and Oregon 6 weeks after we moved here from California, I truly believe its been the best thing I ever chose to do!

    There are ways to make a living/income through at-home means, especially these days! I have found companies out there that WANT to hire someone with a certain condition, simply because times are changing and companies want to represent the helpful side of life and want to represent those with debilitating conditions like Epilepsy, just keep trying and keep believing!

    Finding friends that have experience with Epilepsy and seizures is truly a helpful deal because they understand and know how to help! Using the internet just as we are here can introduce you to neighbors and friends you had no idea were there!

    If you own a home, consider renting a room out to someone that can help you when you need to run to the store or run a quick errand! Take rent off of their monthly if they will do things like clean the gutters or weed eat the yard! If you can grow your own vegetables you can have fresh food during certain seasons that you don’t have to make a trip to the store for! Buy yourself a fridge for the garage and try to buy in bulk so that you can have stored food for more than just a couple weeks or a month!

    In Oregon you can even grow recreational cannabis in your backyard…… 4 plants are legal and done the right way, 4 plants can yield plenty to keep you stocked for over a year! Trimming Cannabis is a MUCH needed job in the right areas and a lot of growers like to drop it off, whereby allowing you to do the work from your own living room in peace, quiet, and safety! Providing a good income and you don’t have to go anywhere to make a living! And its all completely legal!

    Like has been said a few times already, taking control of your life and creating a life that works for you should be the goal and there are plenty of people out there that want to help you do that!

    Believe in yourself and your Universe and you just might realize you’ve got a great life ahead of you!

    Good luck and blessings on your journey!

    Liked by 1 person

    Comment by Aaron Holmes — August 6, 2021 @ 3:14 PM

    • Aaron, any houses near you, for sale? 😊

      Like

      Comment by Phylis Feiner Johnson — August 6, 2021 @ 3:28 PM

      • There are ALWAYS places for sale around here Phylis! We even have an amazing Email network run by a local named Jo….. she’s run the network for over 10 years….. offering food, work, assistance, plants, free goods, animals….. you name it, people have it, or help us to get it!! It’s called JoMail and its ALL locals…… an amazing asset for the locals when we need something, or are offering assistance with something else!

        Liked by 1 person

        Comment by Aaron Holmes — August 6, 2021 @ 3:45 PM

  7. Absolutely!! I hate having a seizure, its scary, it causes damage to body parts which can be painful or debilitating in its own way, or even just causing oral damage from biting on cheeks or tongue, which then prevents eating! Taking showers scares me for sure!

    Even if I had my license, driving scares the crap outtuv me and I never wanna do it unless I absolutely have no choice! And the worst part for me is that all my docs believe that my episodes are brought on by stress and anxiety, so just the concept of getting behind the wheel causes me that which can trigger my seizures, and that in itself becomes a vicious cycle of fear and stress!

    I’m also the type of person that absolutely cant stand asking someone for assistance HAHA…… but just as much as people need to learn and be aware of epilepsy, those of us who deal with it daily, also have to learn to understand that no one gets anywhere without assistance! It definitely takes a village!

    Sometimes its just those of us that learn to work together, can provide knowledge and understanding for others, *wink wink @ Phylis* hehehe…… keep up the great work Phylis, you are a wonderful asset in this community, and more of us need your knowledge and assistance!

    Thanks again!

    Liked by 1 person

    Comment by Aaron Holmes — August 6, 2021 @ 3:37 PM

  8. I worry about that every day that why I don’t like to go anywhere by myself I feel better if someone else is with me

    Liked by 1 person

    Comment by Donna gilson — August 6, 2021 @ 3:57 PM

  9. I can’t say epilepsy stopped me from trying anything but it limited my activity in certain fields. As a second line of work, I used to umpire and officiate. Then when the heat involved indoors and out started causing seizures, I was afraid I’d be paying too much for ambulance rides so I quit. Well, that and one more thing – I saw a local MLB umpire get smacked in the side of the head and this was just after my surgery.

    Liked by 1 person

    Comment by Ed Lugge — August 6, 2021 @ 4:52 PM

  10. It cost me $1,200 to go five blocks by ambulance. It was “out of network.”

    (Well, gee, when someone is dying, are you supposed to find an ambulance — if there is one — that’s “in network”?)

    It you want to play (NOT), you’ve got to pay. 😒

    Like

    Comment by Phylis Feiner Johnson — August 6, 2021 @ 5:04 PM

    • I went into status epilepticus within the first week of moving in and my ex had to call 911…… we had just moved in so she wasn’t working yet and I didn’t even know about OHP yet….. I was charged over 7k for the 30min drive to the local hospital and they put a lien on the house!…… like you said Phylis, “Gotta pay to play!”….. its taken 12 years, and I’m finally free of that lien…… just don’t give up!

      Liked by 1 person

      Comment by Aaron Holmes — August 6, 2021 @ 5:25 PM

      • OMG! And I thought I had it bad. Isn’t there new legislation pending about “surprise medical bills”?

        (Not that it helped us.)

        Like

        Comment by Phylis Feiner Johnson — August 6, 2021 @ 10:22 PM

  11. I deal with the same issues as everyone, here. Unless I had a seizure in public, I never revealed this medical menace for 30+ years. About 3 years ago, I offered to volunteer coach middle grade football athletes. I had moved from a different state and didn’t know anyone. After being approved by this state-sponsored organization, I was ecstatic for the opportunity to meet and help other people and have fun. For the 1st time in my life, I decided to share my health condition with the program director since I would be around children. Within 1 day, the director called and babbled for over 5 minutes on the phone as to why I wasn’t qualified, after already having been approved. She never gave me the opportunity to educate her. I will never again voluntarily share my condition with anyone, unless I’m put in a life or death situation. As a noted personal development coach said…” 80% of the people don’t care and the other 20% are glad it’s you” Just another example of how people who know nothing about our health condition can be so incondiderate and ignorant. Thanks to all on PJ’s link for sharing their experiences.

    Liked by 1 person

    Comment by Roy Anthony — August 6, 2021 @ 6:10 PM

    • I used to call epilepsy my “dirty little secret”.

      I only confided in people very close to me, or people in certain strategic positions.

      (Like work. So they wouldn’t think I keeled over, in the middle of a meeting.)

      It’s not until I “grew into my own skin” that I became more confident and then assertive.

      Who would have thought I’d become an advocate?

      (Almost dying helped.)

      Like

      Comment by Phylis Feiner Johnson — August 6, 2021 @ 10:27 PM

  12. I have focal epilepsy and wasn’t diagnosed until age thirty. Up until then, I thought I just had epic panic attacks on steroids and was so ashamed of them. I was afraid of it happening in public because I was terrified I’d not be able to escape a room and collapse. I have a license but have never driven alone and haven’t driven at all in thirteen years, so my transportation is very limited and I don’t go anywhere alone because of that plus the fear. The fear caused me to cramp my life and miss out on so many opportunities because I was too scared to go. I hated the embarrassment of whatever facial expression (or lack thereof) I must have had during episodes. Even though my meds control it (although they bring a host of side effects which make me dumb and slow as hell), I’m still in the habit of restricting my life.

    Liked by 1 person

    Comment by Hetty Eliot — August 6, 2021 @ 9:02 PM

    • Hetty, you’ve got to do what’s in your comfort zone. But you also have to have a little faith in yourself and reach out.

      I understand the part about not driving. I’ve been there.

      But being afraid of your facial expression? That’s a little over the top.

      Perhaps if you structured your life around people you like/love/trust, it would be better for you.

      Reach out. There are people who are there for you. If only you ask.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 6, 2021 @ 10:34 PM

      • Thanks Phyllis. Things have gotten better since I understand more now. When I say being afraid of my facial expressions, it’s just that my whole life I was mocked for looking like I’m “in a trance,” “drunk,” or “on drugs.” Or just plain being rude and ignoring people. But it’s not that bad anymore, thankfully.

        Liked by 1 person

        Comment by Hetty Eliot — August 6, 2021 @ 11:23 PM

  13. I loved the UKs complete lockdown last year, there wern’t crowds outside who might mob me and injure me so I enjoyed finally not being in danger of the public, my epilepsy doen’t faze me, and I felt like I was saying ya ya ya ya, now you know what the life you imposed on me really feels like, isolated staying indoors, you are dangerous, a comment I still get

    Liked by 1 person

    Comment by Gail Barry — August 7, 2021 @ 8:20 AM

  14. The fact that it costs so much in America to get an ambulance ride to the hospital is disgraceful. That just adds to the economic woes of living with epilepsy! As for the stigma! It is no wonder that many people hide in their homes and out of sight of the public. A dirty little secret?
    Please know that there is a global push to make the world a better place for everyone living with epilepsy but, I suspect that it will take time, especially when there contiues to be a lack of real understanding of what it is life to live with epilepsy by many including those working as medical professionals.
    Epilepsy is just a seizure, right?

    You are all so wonderfully brave!

    Liked by 1 person

    Comment by Maria Lowe — August 8, 2021 @ 6:10 PM

  15. Also not helping is the Medical Professionals that either dont know or dont say anything to their patients about the Eplisey Foundation in or around that area you live in ( like Pittsburgh,Pa) I wasn’t told until this year . 8 years to late.

    Liked by 1 person

    Comment by Elaine Carol Friend — August 8, 2021 @ 9:54 PM

  16. I’m sorry it was 8 years too late. Because Foundations can be tremendous sources of strength and support, awareness and advocacy

    I am lucky enough to be affiliated with The Epilepsy Foundation of Eastern PA. I couldn’t hope to meet a greater, more caring, more compassionate group of people.

    The monthly support groups are manna to the soul. A place of caring and sharing. Where everyone is free to speak their mind.

    I couldn’t be luckier!

    Like

    Comment by Phylis Feiner Johnson — August 8, 2021 @ 10:19 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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