Is E Being Spoken About More?

[seagull]

I was thinking I really hate word epileptic it not what am it what I got.Should we reclaim the word.To me it like the n word or c word.There school of thought that say if you use the words sting is taken out it goes into volcabary as everyday word automatically no one thinks anything apart from it medical condition.
I think it that word ppl are afraid or horror judgments.It like lepprosy and lepper assocated with colony only going back early 80s there was place in Essex on main entrance it said st faiths epileptic colony it got changed to epileptic village.It got closed people who spent most of lives there flung into psyatric hospital.When I was at school the kids who had e got put in special schools men could have marriage annulled if woman said had e..This was still in law medical and nursing books in 1970s our kids born 70s80s are just generation from that cruel misguided generation

 

[Fedup]

acshuman

I never said or inferred anything about Epilepsy Foundation of Minnesota or any other, I am simply saying, telling people what they want to hear does not educate people no matter how much support you have. People may pay attention while that person is speaking at the time but unless they keep speaking, keeping letting people know about E, one time is no good. You cannot make a person stronger if they do not want to get stronger, the first and most important steep on that ladder is believing in yourself, this applies whether or not you have E. The first thing you need to do if you have E is accept it, if you can do that then you have started to get stronger.

The amount of important or well known people who speak for E are few and far between, there are many who have come out and said something about a child or relation with E but that is where it ends.

 

[skyfire322]

For me, I believe E, although a very complex disability (just like most other neurological conditions) is starting to be more widely accepted.

For the longest time, people with E seemed to be "shunned" from society because not many people fully understand the complexity. Historical documents state that people with E were thought to be possessed, and up until the 30's, people with E were treated like sideshow animals with some pretty prehistoric treatments. I actually wrote an article about this on my personal blog.

That being said, with the advent of more medical journals being released on it, medical advances (be it medication, surgeries, alternative therapy) and heck, in the past few decades, and most recently the ability to share on social media, has definitely helped raise awareness.

Like I said earlier, it's still a very complex disorder, and there's still a lot to learn, but I have hope that there will be an upward trend in the near future. Those of us who do have E just need to rally together (so glad I found this support group) and also inform those who really don't know much about it. Be it friends, family, employers.... Anyone with an open ear.

 

[Frink]

Should we reclaim the word.

I am all for "reclaiming" the word epileptic, it has never bothered me in any way. Words only have as much power over us as we give them.

 

[skyfire322]

I am all for "reclaiming" the word epileptic, it has never bothered me in any way. Words only have as much power over us as we give them.

:agree:.

I personally have never been offended when called epileptic, but I can see how it may be a derogatory term to some. In all reality though, it's what we have and unfortunately it's the nature of the beast.

Some people still judge me when I tell them, but since I've pretty much come to terms with everything, I just ignore judgement, and move forward with my life. It is disheartening, especially after having a big seizure, but I remind myself every day that I'm alive and in the end, that's all that matters.

The big thing we all must remember is that even though it's an unfortunate part of our life that we have to deal with, it absolutely does NOT mean it defines WHO WE ARE as people and we shouldn't let it dictate our lives. Luckily, with forums like this, we really don't have to worry about being that outside judgement since almost everyone else has to deal with it in some shape or form.

:hugs:

 

[acshuman]

Use of Epileptic

I would have no problem if Epileptic were used again. It is only a word used to describe someone who has E.
I could answer to Epileptic much easier because the person saying it would not have to be thinking 'Am I saying this correctly, is it seizure disorder or ?, I don't know what to say). HA HA

ACsHuman

 

[rock and roll]

I find that E is being shown more on TV in recent years, the only problem I have is that they keep up the assumption that only Tonic-clonic seizures count as Epilepsy.

 

[StrongerThanEpilepsy]

+1 with rock and roll's answer
A lot of them also don't look realistic to true epileptic tonic clonics. I do realize that it's difficult to mimic, but it still annoys me.
That House MD show annoyed me. When he was dealing with patients, he automatically ruled out epilepsy with patients with normal EEGs and the patients usually had to be light sensitive (or noise in one episode) in order to have seizures. It adds fuel to the fire. Considering that there are medical consultants on these medical drama shows, I expect these shows to be more diverse with epilepsy.

 

[Garbo]

Historically, epilepsy and other diseases have been severely stigmatized, often resulting in isolation and criminalization. I believe Plato wrote a treatise on how if an epileptic slave was discovered to be epileptic, he had to pay his owner double his fees. Crazy stuff. Not to mention, some radical Christians perpetuated a lot of fears about Islam by spreading rumors about Muhammad's epilepsy. I think epilepsy's history is actually incredibly interesting, especially in other countries where it's viewed quite differently (Mongolia, for example). I think that stigma is certainly changing, but for example I had a friend who firmly believed I was demonically possessed, which that view is entrenched in medieval fears and superstitions. I thought that was so funny (I still crack jokes that I'm demonically possessed), but the more I read the more I realized epilepsy's shameful past. Granted, it's due to people's perceptions and not the disease itself. And that history is not linear. Hippocrates tried to reduce the stigma, but then people were, like, "Nope! Demon possession! Witchcraft!" I think some of that still exists even today, although certainly not to the degree it was even fifty years ago, and as several people mentioned above, education is so important. Most people just don't know what epilepsy is so they sometimes say silly things without understanding the disorder.

If anyone is interested, I highly recommend the film The Witch, which I think goes into the roots of these stigmas without vilifying anyone. The little boy even develops a seizure-like disorder.

 

[Sabbo]

I also think that epilepsy needs to be spoken about more--it does, after all, affect more people than many other neurological disorders do. I agree that it still seems to be a "taboo" subject & term, since they often refer to it as "seizure disorder".
I still recall how classmates bothered me when my simple partials weren't diagnosed, saying I was faking feeling sick to get out of doing things. Some didn't believe it even after my diagnosis--to them, seizures were only tonic clonics.

 

[Garbo]

I am all for "reclaiming" the word epileptic, it has never bothered me in any way. Words only have as much power over us as we give them.

Plus reclaiming is such a fun idea.

 

[girlwithadog]

I don't have cable so I don't know about that aspect but I have noticed more people with epilepsy more willing to share their experience, but maybe that's because I have epilepsy as well and am willing to share.
I do know the general understanding of it is in serious need of help. I was guilty as well until I was forced to understand it. And even now my husband is just finally starting to understand.
I don't think most people have the understanding they once did about possession (at least not in first world countries) but the idea that only tonic clonic seizures are important enough to document needs some serious clarification throughout the world. Understanding serizures and seizure types needs work.

I've been testing and bringing my dog with me places (training him as a seizure dog) and am happily surprised to not have any complaints so far even though he doesn't look like a typical service dog (he's a pom/Yorkie) so that is a definite plus. I just get frustrated when people assume I don't have epilepsy because I don't drop to the ground shaking and foaming daily. I've heard so many times "Get a second opinion" "I don't care what they say you don't have epilepsy" "Well you're not having real seizures" "You haven't had a real seizure in 8 months, you wont have another" etc. If only it was that simple and easy!
ugh.
I try to inform them but they never seem to understand, and don't really want to. When I explain it to them they get that glazed over look where they are clearly ignoring everything I'm saying.