Something needs to be done

[drarvindr]

Dear all,
Sorry for not posting regularly for the last few months. Work has been hell. Anyhoo, the purpose for this post is that i met a patient who was diagnosed with a seizure disorder in his mid 30s. Watching his face when we told him he couldn't drive any longer untill his seizures got under control , i had a bad feeling that this dude was thinking " Bull s**** , i'm driving anyway". His wife was totally uncooperative. She refused to believe he had epilepsy and was willing to accept the possibility of a stroke , a tumor , anything but epilepsy. I tried to calm her down and even ( in private) broke my rule about never telling anybody in a hospital setting about my condition. I told her I was an epileptic and probably will be on anti-epileptic drugs for life. She just looked at me weird as though i was lying to her just to make her feel better. Then she asks the consultant later in the day if he was ABSOLUTELY sure it was epilepsy since (she believed) most seizure disorders manifest in childhood and whether any test could rule out epilepsy.

My question is : why the irrational fear ? is it such a big deal ? I would rather have epilepsy any day of the week than a brain tumor or other lethal diagnoses. We have made progress , yes. We are no longer hunted as "witches" or the like , but are we any further ahead?. Educational programmes don't seem to work with the general public because frankly they don't care untill it hits home (this case being a classic example), and then they run from pillar to post trying to prove that their loved one Doesn't have E.

When a kid gets glasses , no one cares . When a husband gets cancer people are supportive. I've seen parents who were willing to accept all kinds of diagnoses about their children. But E is a different matter altogether.

What we need to do is to start the educational process from the grass roots level - perhaps an epilepsy day in school where locally famous (they're a dime a dozen) epileptics can discuss the disease and remind the next generation (i've lost faith in the current one) that all is not lost when you hear epilepsy from your physician's mouth.

[skillefer]

I totally agree. The sad thing, is that e is still the "hush hush" disease. The relatives that we never talk about....you know? And because we don't get bombarded by TV ads for anti-epileptic drug's like we do for meds for asthma, prostate problems, ED, diabetes, and the like, most people never think of epilepsy or even know that it doesn't always present itself as the stereotypical grand mal. Parents don't want to admit to their child having E because they automatically think it reflects on them...either they did something wrong, or it was their genes that caused this problem..their faulty genes. And sometimes, they just automatically assume that if their child has E, that they will never be able to do well in school, get a job, find a spouse, or raise a family. People who are diagnosed later in life probably are fearful that they won't be able to support their families, and fear that they have automatically passed this "flaw" on to their children. They still think of it as the taboo disease and can only picture being ostracized. Pretty ignorant, I know...but hey, we don't get much press....except of the negative sort. so unfortunately, it's understandable.

part of your patients response is probably also cultural....My friends from India have arranged marriages...perhaps the family fears that if the parent has E, the number of prospective marriage partners will shrink. The E being seen as a flaw. an aborration.

by the way, here in America, there are still parts of the country, and certain denominations teach that epilepsy is actually demon possession. don't know how it is in India, but the lack of compassion shown by certain religious groups is truly amazing.

[Junebug]

Sounds to me that she has thought in the past that all people with E are freaks. I've experienced this in the past so where do I sign up?
If she thinks that it is anything but E like a stroke, tumor or something else that the general public is well informed about she needs to be educated, especially if she's thinking too that only children develop.

She needs writeen information on this so any pamphlets you can give her would help I'm sure. That's the best advice I can give you. Sorry.

[forward2007]

Maybe she can't deal with the fact the her husband will have something for the rest of his life.

[Cint]

If a dr. would have told me in the hospital setting that he/she had epilepsy also, it certainly would have put me at ease when I was diagnosed as an adult. I never thought of E as a "freak" disease and I never understood why others do either. If I could start having seizures out of the blue, then anyone could.

When my two children were growing up, I was one of the mothers who did volunteer reading to the classes, so I made a point to tell the children my story about epilepsy every year at a young age so my kids wouldn't be ashamed, afraid, etc. When my son made his speech his senior year in high school, he had the whole class in tears because he told everyone about his mother and her struggle with epilepsy and how proud he was of her.

We as individuals with the brain disorder are the ones who can educate the public, but it isn't easy. The stigma is still there. I had an EEG tech say to me several years ago that "you don't look like you have epilepsy." I felt like saying to her, "you don't look stupid!" But I kept my mouth shut.

[Nakamova]

One reason for an irrational response to a diagnosis of epilepsy is that a lot of people associate epilepsy with mental illness (in part because the two conditions are often conflated in the media and popular culture). People are scared, not only because of the physical issues, but because they think someone with epilepsy is somehow "crazy". Both epilepsy and mental illness are unfairly stigmatized of course -- we've come along way in educating the public, but there's still a long way to go...

[flinnigan]

I really think it may be in the way we approach it ourselves. So far I've not had one bad experience with the general public, but I kinda feel likes this is no big deal and I think I send that vibe to others. A few times I've made sure people know why I can't drive. I don't want them to think I'm drunk driver.

My friends and family have all been so helpful and supportive, except my own mother. I haven't spoken to her since last July. She's part of that generation that sees it as shameful I think. Though she would never admit it. My father had untreated E and she claims he wouldn't talk about it but I doubt they ever discussed it.

I'm having surgery in two weeks and my friends are throwing me a big pre op party. Now that's support.

I'm hoping to get out there and help educate others after I get on my feet. ElaineH has been a great inspiration to me.

[Bernard]

Hey Doc, great to see you are staying busy.

Irrational reactions are generally symptomatic of a learned response. What's no big deal for one person can be devastating for another. Each inner child is different.

That said, I'm guessing that the patient has a family history of epilepsy and the legacy is a source of shame or hardship for them. He doesn't want to be the next chapter in that book.

[alivenwell]

And because we don't get bombarded by TV ads for anti-epileptic drug's like we do for meds for asthma, prostate problems, ED, diabetes, and the like, most people never think of epilepsy or even know that it doesn't always present itself as the stereotypical grand mal.

They don't have to advertise our meds. They're already making major profits!

In my area, the Epilepsy Foundation was drastically slashed financially.

What's wrong with that picture?!

[skillefer]

*chuckle* true..the pharmaceutical companies make big money off of us....but the thing is, by seeing the ads on TV for those other medical conditions tends to desensitize people and help them to see that those other conditions are treatable...they don't freak out as much when they see an asthma attack or if someone they know has a diabetic reaction. Why? because they know it's treatable and not contagious. what I'm suggesting is that maybe our meds should be advertised too...if nothing else, it might help to educate people and make them less likely to panic.

[TempusFugit]

I have thought long and hard about the questions posed here. I can see it from both sides of the coin, as it were.

Perhaps the initial reaction upon being told this news was a 'knee-jerk' reaction. I suppose my reaction was something similiar too. Being told that you have a condition, where let's face it - there is a lot of stigma attached to it and it is life changing is pretty daunting.

Epilepsy to me is a big deal at the moment - simply because I have to make adjustments and changes that I don't particularly want to make. I know I will get my head around it eventually, but a bit of time and support is all that is needed to come to terms with it.

I suppose everyone reacts differently, but I do feel some empathy towards this man and his wife. Acceptance is perhaps the hardest part and can only come from yourself.

(Just my two cents worth )

[brain]

Throw a huge canvas out and slather it with multiple colors
of paint. To you, it would look like a sloppy job that some
pre-schooler had done it.

However that canvas represents "Epilepsy":

• Some people will view it as a multi-million dollar piece of art, and some one will shell out a fortune for it
• Some people will view it as a waste and scoff at it; and my gosh, some would even go out on a spree to balk at the "tax-payers" waste of money (even if it were a privately owned object?)
• Some will sit for hours to ponder and view the beauty of it
• Others would sit and ponder and criticize it to death and find fault

These are just a mere examples of what one would find
on a simple huge painted canvas; no matter how one views
it - you are always going to get a differing reaction, response,
attitude, and so on ... the negative, neutral, and positive aspects.

Amazing isn't it? All from one simple canvas, no matter how you
turn that frame, everyone will view it in an entire different aspect.
Open-minded, Narrow-minded, Closed-minded, Skeptical, Awestruck,
Disgust, Analyzing, etc - from all various angles and nature; no matter
what background they hail from.

Epilepsy - it exposes itself and yet it fights within itself. (I know it
is a tought phrase to figure that one out, for one must truly sit
down and ponder on that sentence alone to come to realize the
truth that I have expressed indeed imparts within itself.)

[tripletdad]

It is a Hush Hush disease and there is quite a bit of stigma associated with this. I dont get it. I was diagnosed when I was 9 and lived with it for over 30 years. I can drive (knock on wood), have a great career and 4 beautiful healthy children. I know how lucky I am. That being said, growing up with E never really bothered me, it was just something I had to live with and cope with.

I have a former employee whose young daughter was diagnosed with epilepsy and my repeated attempts to contact them and offer guidance were ignored. When I finally ran into him, he simply said "...we really dont want to talk because you still have it...we're just hoping she will outgrow it."

I was flabbergasted at how selfish that statement was. That attitude will stigmatize her condition and do more harm than good.