Do you find the term 'epileptic' insulting?

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I can understand epileptic is often used in a negative way.
I have had most any neutral or otherwise lovely words being offensive when used in the wrong context, with sarcasm, or if I am feeling very defensive.

Language and its evolution is a weird thing. So many terms that are no longer acceptable mean the same thing that acceptable terms today do, they just do not have the acquired bad baggage they soon will UNLESS SOCIETY CHANGES IT VIEWS UPON THESE TABOOS.
Terms for people of African descent kept changing: nigger, negro, then black. These terms all mean the same if you look at the etymology as do: slow, retarded, mentally challenged, then mentally handicapped. Black became a widely acceptable term as society changed for the most. Society can change its view of conditions/people. Changing the word will not solve the problem.

I can be proud or accepting of "being epileptic/haircolor/nationality/ethnic group/class/whatever adjectival noun" and view a person who uses it in a bad or prejudicial way/ as limited in their perceptions. Maybe they need help with education and many things. The word does not need to change, these people who use it in the wrong way do.

I think this thread is closely related to the need to relieve the stigma associated with epilepsy.
http://www.coping-with-epilepsy.com/forums/f36/ultimate-way-promote-forum-22576/
 
Although the word Epileptic doesn't bother me, I don't use it either. When I talk about my seizures or the anticonvulsants I take people will sometimes say "Oh, are you Epileptic?" to which I reply Yes, I have Epilepsy hoping they will get the point.

What I find so objectionable is the word 'fit', it's vile and archaic in my opinion. I cringe every time I hear or read it.
 
Language and its evolution is a weird thing. So many terms that are no longer acceptable mean the same thing that acceptable terms today do, they just do not have the acquired bad baggage they soon will UNLESS SOCIETY CHANGES IT VIEWS UPON THESE TABOOS.

.............. Society can change its view of conditions/people. Changing the word will not solve the problem.

True, language and it's evolution is strange, what was once acceptable is no longer. But changing the wording can help with solving the problem, as what is not insulting, inappropriate to one, can be to another. So changing the word(s) will help solve the problem. Read on:

http://www.huffingtonpost.ca/epilepsy-ontario/epilepsy_b_5591039.html

There is compelling evidence that this shift in language usage has a significant impact on the stigma of epilepsy. Researchers Paula T. Fernandes, Nelson F. de Barros, and Li M. Li split study participants into two groups. Group A answered questions about "people with epilepsy" while Group B answered the same questions about "epileptics." Even though the two groups answered the same questions with the same information, Group A thought "people with epilepsy" had less difficulty with school or work and were rejected by society less than Group B did with "epileptics." More people in Group B admitted to being prejudiced against "epileptics" than Group A did against "people with epilepsy."

This suggests that simply shifting our language from "epileptic" to "person with epilepsy" can alter the way others think about those living with epilepsy. Employers, colleagues, teachers, and peers may think of their friends differently if we all start referring to "people with epilepsy" instead of "epileptics." People with epilepsy may face less discrimination at work or school, they may be less marginalized by their peers, and they may be able to start fully participating in our communities without the stigma of their disorder hanging over their heads.

These three small words can have a profound impact on the lives of people with seizure disorders. They might face less prejudice and they'll no longer have to confront a word that's often used as a playground weapon. If making a minor shift in the language you use would reduce stigma and shame surrounding epilepsy, why not make the change?
 
Good article/link Cint. Can't say I would ever get offended by someone describing me that way, and I don't believe I have ever used the word to describe me, it's always been 'I have epilepsy'. At least to the few people I have ever felt comfortable enough to share that fact with.
Pretty weird how.much peoples perceptions change just with the change of words.

Yay know all I can think is that referring to someone as an epileptic may imply a permanent condition, whereas saying someone has epilepsy may imply a temporary condition that could be controlled or perhaps even overcome.
 
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I think the issue of language evolution with regards to taboos is irrelevant to the discussion. It runs tangentially to what we're discussing, but it isn't really the same issue. Epilepsy is not a taboo word, and epileptic/epilepsy aren't words that changed as a result of language evolution. They're just modifiers.

The issue of using the word 'epileptic' has more to do with whether we want to be defined by our epilepsy. Do we have epilepsy or are we epilepsy?
 
To the extent that we allow words to hurt us or define us those words have power over us. Or, more precisely, the people who use those words in a hurtful or ignorant way have power over us. I won't let them.

If I happen to use "epileptic" in a conversation, when people think of that word they will think of "Matthew".
 
I have no problem with it anymore than someone who says "I'm diabetic".
 
Do we really need that over load of political correctness with some words.?. In my Daughters world it involves Epilepsy & Autism, she also has Intellectual Impairment...

So yes a person who has no sensitivity can call her an Epileptic Autistic Retard.. But you are ALWAYS going to get people who just don't understand or wish to understand because they either choose not to or by ignorance & fear..

I don't get offended by the words Autistic or Epileptic, but I don't like the word retarded..because.. She may not talk but can she listen & understand what you say & understand...yes yes yes...

So people should never ever assume & judge.

A label/ diagnosis provides the opportunity to get the appropiate help & do the best we can.
 
Retarded is one that is SOOOOOOOOOOOOOOOOO outdated and demeaning. My mother was a special Ed. teacher as we were growing up in the early 70's and she would get so upset at the use of that word. After that it became Mentally handicapped and is now called mentally challenged. I'm glad society is moving along!
 
If someone uses the epileptic to define I do get upset.
Epilepsy doesn't define me I'm a person who has epilepsy.

I'm an asthmatic and that doesn't bother me if someone calls me that.
People have told me not to have another spaz attack because of my epilepsy.My neuro has never called me an epileptic.I had a time breaking him from using the term spell and I'd say I don't have spells I have seizures.It took about 3-4 visits before he stopped.:agree:
 
terms

I agree with the being force fed political correctness. Some individuals live their whole lives around being offended. I have epilepsy, and I can not control what other people choose to label me as. Reference to a "spell" or "fit" is a tad barbaric. My Mother used to say, episode.She almost couldn't bring herself to say seizure, as if saying it somehow made it her fault! Has epilepsy defined me in some ways? Yes, and profoundly so.
 
Some individuals live their whole lives around being offended.

I think this is needlessly harsh, but I'll stick with the 'being offended' part.

You see, it's not about being offended at all. This is not a case of political correctness. It gets lumped into that category when a more precise view isn't sought.

I can understand why you might see it that way. Perhaps it's easier for you to live a life that isn't dominated by epilepsy. Some people's lives are constantly pushed and controlled and limited by the seizures they have on the job, while with family, while at the movies, while at parties. With daylight seizures, everyone is aware of your epilepsy. There is no getting around that. And seizures are dramatic, so people will talk about it a lot, and talk to you about it, and treat you differently based on a simple medical diagnosis.

For me, with so many people thinking 'Kirsten the epileptic' rather than 'Kirsten the epileptic who writes for a living, loves books, eats at the restaurant down the street, lives in that quiet cottage on the corner, and laughs at stupid jokes', it became well nigh impossible to see myself according to the latter definition rather than the former. When the name 'Kirsten' came up, it was about the family who picked me up off the side of the road after a seizure rather than the excellent cappuccino I made them yesterday. I have fought hard almost all my life not to have epilepsy at the surface of every thought and interaction. It has been incredibly hard work to get others to relate to me as a person rather than an epileptic. I've had to consciously be bigger than the dramatics of my medical situation. I've had to make myself more open, so that I could be more authentic, so that people would associate with me rather than my epilepsy when we spoke. It has taken years to change the way I think, so that I could see myself as a person who eats at the corner restaurant, loves films, and is a lazy worker, rather than an epileptic. Having achieved that delicate balance (which is threatened with every bad seizure week or drug crisis), when someone calls me epileptic, they're sending me back to the very thing I've been fighting for so many years, if only for a short while. After that, I have to fight my way back to being Kirsten, the lazy worker who likes movies.

I'm not offended when someone calls me epileptic, and I'm not needlessly living a life around being offended. I am living a life around being more than my diagnosis, and being called my diagnosis just means I have to do more work to overcome that thing in me that says 'you have seizures every day, right? The work you do has been chosen specifically because of your epilepsy, right? Your salary every month is affected by how many seizures you had this month, right? Your fiancee left because he couldn't bear dealing with seizure emergencies, right? And your family starts every phone call with 'how's your epilepsy?' right? You only go out if you have a good seizure week, right? Your day is formed around how much or little your seizures are affecting you today, right? So how does that make you anything more than a walking epilepsy diagnosis?'
 
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@ Penny, some times you do get rare horrid child that spits the words "autistic retard" especially at those who have high functioning Autism :) Other parents have told me of crappy experiences.

But yeah, fortunately most people have tolerance.

My Brother told me that some years ago he was on a bus & a guy was having a T/C seizure.. well the young lady next to him panicked & would not stop screaming..she was more worried about her shopping stuff that he inadvertently squished.
 
The only thing I don't like about the word is the stigma behind it. Long before my epilepsy diagnosis I knew an older woman with epilepsy. She grew up in a very small town and had seizures frequently. All of her classmates, teachers, and even relatives thought she was demon posessed so she believed it herself. I believe she passed away a couple years ago (not from E, but just old age really) and until her ladt breath she believed she was possessed. I tried to assure her she was not posessed but she eould never listen to readon, even when her R medication started working.
I don't tell anyone apart from doctors and very close family (and two close friends) about my epilepsy. Not because I worry that they will be posessed but because I know more often than not they won't see me as an average person but instead as a person with an illness that svares them anf that they do not understand. I also don't want the pity that goes with it.
 
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A very sad story about the lady from small town. My E explains lots about me and answers questions from my childhood. My family has not done the best job of addressing it, but its my life now to try to live to the best of my ability. Revealing my E used to feel taboo, now I just don't care! My highschool years were tattered with weird feelings and behavior that went unchecked. After my first tc at 11, then 3 years of phenobarbital, the doctors and my family thought I had outgrown E. Ha! The light bulb never went off that I was having partials...I was weird; hypochondriac; rebellious and so on. I think their denial was a huge factor. To this day my now elderly Mom will not have a discussion with me about it.
 
My Brother told me that some years ago he was on a bus & a guy was having a T/C seizure.. well the young lady next to him panicked & would not stop screaming..she was more worried about her shopping stuff that he inadvertently squished.

And I once witnessed a young nice looking young man having a TC seizure at a Barnes & Noble bookstore. An older woman sitting across from me stated that he was "probably taking some kind of illegal drug, since he went into that seizure." People who make stupid comments like that and have pre-conceived ideas about seizures are more insulting than anything. And no, he wasn't taking any illegal meds, he was taking AEDs, he told me after he recovered and was waiting for his ride 'cause I was keeping an eye on him afterwards.

The only thing I don't like about the word is the stigma behind it.

There is only stigma there if we allow it.


I don't tell anyone apart from doctors and very close family (and two close friends) about my epilepsy. Not because I worry that they will be posessed but because I know more often than not they won't see me as an average person but instead as a person with an illness that svares them anf that they do not understand. I also don't want the pity that goes with it.

I don't want pity, but I want others to know what to do in case they happen to witness a seizure, as has happened many times in my life. The more they do not understand, the more scared they will be. Knowledge is power!
 
I agree Cint, people need to be educated on the basics of first aid which needs to include what to do in case of a seizure. Even more so on education about E because of that very reaction the elderly woman had to the young man seizing. I think I have said this out loud to a therapist, but I have felt at times that I did something wrong, or my E was my fault. I have gotten that feeling from the medical community in the past also. Good post!
 
A very sad story about the lady from small town. My E explains lots about me and answers questions from my childhood. My family has not done the best job of addressing it, but its my life now to try to live to the best of my ability. Revealing my E used to feel taboo, now I just don't care! My highschool years were tattered with weird feelings and behavior that went unchecked. After my first tc at 11, then 3 years of phenobarbital, the doctors and my family thought I had outgrown E. Ha! The light bulb never went off that I was having partials...I was weird; hypochondriac; rebellious and so on. I think their denial was a huge factor. To this day my now elderly Mom will not have a discussion with me about it.

So sad about your mom, gigi. But I'm like you about E. I just don't care! It is my life now and it is what it is! I have no where to hide anymore, anyway.
In so many families, denial is a huge factor, unfortunately.
 
Kirsten, I totally understand that. I see what you mean.

When I was growing up, and into college I didn't think about epilepsy that much. Every month or so I would have a seizure at night, I fell asleep in class, and never got a license, but that was pretty much it. Hardly anybody knew. When I was diagnosed when I was 9 and found out I had a brain tumor, I decided that I wouldn't think about it. I don't mean that I wanted to avoid it, but I realized that I was no different before and after the diagnosis. In a way it was irrelevant. I wasn't going to let it define me. That was then.

About 2001 I couldn't ignore it anymore. Mostly that was because I was seizing all the time. My seizures were mostly just fuzzy feelings in my cheek, but it changed everything. I became aware that I had epilepsy 24/7. It was always with me. I was afraid of having worse seizures. I had to stop riding my bicycle, my only transportation. I had to start "taking it easy". I went from feeling "normal" to feeling like a sick person. Until you wrote what you did above I didn't realize how much I think about it. I think about it ALL THE TIME. Now, on my diet I think about it every time I eat. In a way it has become my defining identity. I wasn't able to make it as a musician, wasn't able to see my education through, and now I'm in a small town ready to go to trade school. I picked the school mostly because of my epilepsy. I have 8 1/2 years of college, but I'm painting houses for a living. I'm on medicaid. I'm seeing doctors frequently. The office of Rehabilitation will pay for my school (that's a good thing, for which I am extremely grateful). Tomorrow I'm going to my appeal hearing for some benefits. I just realized that I am now organizing my whole life around epilepsy, present and future. I have pretty much given up on marriage, etc.

And like you say, it has even begun to get between me and my old friends. When I meet new people, it's usually not long before I tell them about my epilepsy, and it seems like things are never the same. It may be mostly me, but I feel like it's the "600 pound gorilla" in the room. Well, maybe it's more like "Harvey" (the six foot tall invisible rabbit). In any case, I can't get away from it. Maybe I need to change that.
 
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