Do you find the term 'epileptic' insulting?

[arnie]

I'm a normal working woman who has seizures due to epilepsy.

You are nowhere near normal, Q, and thank heavens for that!!

 

[Dolores]

I am an epileptic. Epilepsy has changed my life for both the good and the bad. I realize I wouldn't be the person I am today if it weren't for having had to deal with my epilepsy. I had my first Gran Mal seizure at age 10. They are under control now but having to accept that at times I was not in control was at the same time completely frustrating and completely liberating. Having to deal with the side-effects of Dilantin has been challenging. But it allows me to live a somewhat normal life. Not that anyone's life is normal. The first epilepsy site I came across was run by a guy who called himself The Spaz. He said he accepted that he was an epileptic, that it was a very real part of his life. I so liked his attitude that I adopted it myself.

If people react negatively to the term epileptic then that is an opportunity to change their perceptions. If we don't then epilepsy will always have negative connotations. I remember going for pizza with a group of people and one girl was shocked when I took out my medications. Rather than be upset or embarrassed I calmly explained what they were for and what epilepsy was about. By the end of the conversation she was really cool with it all.

We aren't going to change perceptions if we ourselves "hate the terms". I have epilepsy and always will. I am one of the lucky ones - Dilantin & Phenobarbitol calm the electrical storm in my brain.

But I will always be an epileptic and I tell people to help change their perceptions.

Just my point of view.

 

[arnie]

Dolores, I see where you're coming from, but terms, when they have negative connotations or when they for whatever combination of societal reasons become outmoded or offensive, they will, and should, change. Thinking of only a few examples would be, of course, the "n" word, calling a physically disabled person a cripple, calling a developmentally disabled person a retard, using any number of formerly acceptable terms for ethnic groups (redskins, chinks, wops, etc.)
Now to watch some Olympics!

 

[kirsten]

We aren't going to change perceptions if we ourselves "hate the terms". I have epilepsy and always will. I am one of the lucky ones - Dilantin & Phenobarbitol calm the electrical storm in my brain.

But I will always be an epileptic and I tell people to help change their perceptions.

Just my point of view.

I don't think anyone in the thread has said they object to saying they have epilepsy, or to others calling them epilepsy sufferers. The term 'epileptic' has quite a different connotation, because it crams our entire identity into our illness instead of making room for all the other things that make us unique.

 

[kirsten]

The first epilepsy site I came across was run by a guy who called himself The Spaz.

Approaching the whole thing with a sense of humour is great but for me there came a point where I just wasn't allowed to forget that I had epilepsy when in social situations. In my twenties I lived in a different town and my friends there took to calling me 'sparky.' At the time, I thought it was great that they could have a sense of humour about it and took it to mean that they understood. Eventually, though, I found it incredibly stifling to be constantly identified according to my epilepsy. After I moved, I made sure to limit the number of people I told about my epilepsy to those who needed to know and who wouldn't identify me by it. It has been amazingly liberating for me. I prefer to be seen as another person rather than an 'epileptic.'

 

[Zolt]

The way I look at it is "sticks and stones can break my bones, but words will never hurt me"

Plus i've been called a lot worse names than epileptic. To me it's what the definition is, a person with epilepsy.

Now if someone puts negative connotation to it, then yes, i'd be ticked off, but then i would have a clearer understanding of the person saying it.

iano: op:

 

[nelly]

while I was at college I overheard my classmates in a conversation.
one gril said to the other "Did you know she has epilepsy?"
she replied "No! but, I thought something wasn't right about her. why is she in college?people who have epilepsy are retarted"

I was embarrassed for the girl they were talking about and myself too. I young and really afraid of what they might think of me, if I were to say I have Epilepsy too. I still am afriad to admit it sometimes.

 

[Bernard]

...
she replied "No! but, I thought something wasn't right about her. why is she in college?people who have epilepsy are retarted"

I was embarrassed for the girl they were talking about and myself too. ...

I would have been embarrassed for the one who made that ignorant comment. FYI - My wife has epilepsy and she also got her Masters Degree. Plenty of smart people with epilepsy. Plenty of dumb people without it too.

 

[Janus]

I actually say "I have epilepsy" to people. And they can do what they want with that. I am more put out by people because of my eccentric, overly dramatic personae. I think.

 

[kirsten]

my eccentric, overly dramatic personae. I think.

Your avatar says it all. :woot:

 

[Cloud9]

I like to say, "I have Epilepsy, but Epilepsy doesn't have me."

 

[jh2]

i do not so much mind the word. yet i sometimes have problems with the context and tone in which it is used.

 

[Matthew74]

Don't mind.

I don't use the word because I know that other people don't like it. However, it would be a whole lot more convenient than saying "person with epilepsy" all the time. It seems to me that prejudice comes from the condition itself, not the word we use. If we weren't afraid of the word "epileptic", perhaps people would get the idea that "epilepsy" is ok.

:scholar:

The ending "-ic" is the english version of the french "-ique", which is simply the ending you use for adjectives. It's just a substantive adjective, like "a diabetic", or "an academic". Grammatically, it's not much different than calling someone who drives, "a driver".

I think we tend to assume that old words are prejudicial. People may have had different ideas about things, some wrong and some right, but they weren't all hateful people.

It's like "handicapped", "disabled", "differently-abled", "challenged"; at some point it becomes nothing more than fashion. We all try to be sensitive about that stuff, but sooner or later we have to admit that it's not the word that bothers us, it's the condition. We are uncomfortable with the condition so we try to change the words we use to make us feel better. We keep changing the word, but keep feeling the discomfort.

 

[valeriedl]

I don't know if most people in general would know what the term 'epileptic' is? I always tell people 'I have epilepsy'.

The only problem I have is when most people hear I have epilepsy they think that I could fall to the floor at any minute and start shaking like crazy. They don't understand there are more types of seizures. I explain this to them and the types that I have.

They don't understand how it's treated either. If I tell them that I'm on a lot of meds and have a VNS they can't believe it. I've never had brain surgery but I'm sure if I would have people would wonder how I'm able to walk, talk and understand what they are saying.

 

[kaelieh]

I don't find epileptic insulting and I think it's acceptable to use as long as you're aware that some people might be offended by it. Around new people I try to sensitive to their preferences, but when it comes to me I'm pretty flexible with what people use. For me the phrases "I'm epileptic" and "I have epilepsy" have subtle differences of meaning. "I have epilepsy" states that I have a condition and provides information about the condition to another party but when I tell someone that "I'm epileptic" it's more personal for me. When I use that phrase I'm taking ownership of the medical condition and telling you something personal about myself.

 

[qtowngirl]

It's like "handicapped", "disabled", "differently-abled", "challenged"; at some point it becomes nothing more than fashion.

hi matthew, onder: not sure i agree with you on this one.

-'nothing more than fashion'... handicapped was taken out of the medical system for the intention of more public consideration for those who have it as part of their lives. back in the day it wasn't so medically realized how many degrees of 'a handicap' there truly was, then came more research and knowledge that showed it was no longer fitting.

from the National Disability Authority:

When writing or speaking about people with disabilities it is important to put the person first. Catch-all phrases such as 'the blind', 'the deaf' or 'the disabled, do not reflect the individuality, equality or dignity of people with disabilities.
Term no longer in use: mental handicap, Term Now Used: intellectual disability.

this process applies to diseases such as epilepsy as well. referring to someone as an epileptic greatly defines who they are, and just like the statement above, it is a term that more and more is becoming a 'term no longer in use.'
as i said in a prior post, epilepsy is something we have, not something we ARE. and just like an intellectual disability or issue with mental health, there are many different types of e and seizures. some deal with it on a yearly basis, some over and over every day. a catch-all 'name' for us who suffer is very inappropriate, and like anything that has to change.
how much attention do you pay to it in tv/movies/comedy etc.? when it is made fun of it's always a reference to an 'epileptic,' not 'someone with epilepsy.' the word epileptic makes a joke funny in the public eye, but has a total different reaction if it's 'so i seen someone who has epilepsy the other day.'

We all try to be sensitive about that stuff, but sooner or later we have to admit that it's not the word that bothers us, it's the condition.

please don't put us all in the same box, what you said is a very personal opinion, saying 'we' is out of line friend. the word epileptic IS what bothers me. and yes having epilepsy does too, but i don't 'try to be sensitive about that stuff'... i AM sensitive because i understand what living with it is like.

 

[SlimBlue]

I'd also like to stick my toe in and say I don't believe 'epileptic' should be used as a personal adjective.

A seizure/brain etc is epileptic, the person with that condition has epilepsy. It's not the same as say, 'academic' which can relate to both people/objects etc.

To me it's a lazy misuse of a non-personal adjective- which is what bugs me really, the term itself- meh, there are worse things to be called..

It's a lot easier than typing 'person with epilepsy' though, so I do still use it now and then (no English master to ruler my knuckles now lol).

Why make life harder for ourselves?

 

[kirsten]

I think we tend to assume that old words are prejudicial. People may have had different ideas about things, some wrong and some right, but they weren't all hateful people.

sooner or later we have to admit that it's not the word that bothers us, it's the condition.

It's not the word or the condition that bothers me in the sense that they change the fact that I am not the sum of my epilepsy. Obviously, epilepsy has a profound affect on my life practically and physically but when it comes to feeling put out or insulted or crammed into a single definition, being called 'an epileptic' affects me on many different levels. It's true that when those of us with epilepsy become the butt of jokes, the word 'epileptic' is always used and not the word 'epilepsy.' Maybe as a guy you haven't heard the worst of these jokes; I don't know, but I've had men tell me I'd make an excellent living as a prostitute because I have epilepsy and that 'epileptics' used to make their living that way in the past. I think those who spout this bs would think twice if the word epileptic was socially unacceptable, because they'd be forced to use the words 'person with epilepsy' which would make it hard for them to depersonalise us. It'd also kill their jokes pretty solidly, which is only a good thing.

 

[Matthew74]

qtowngirl: I'm sorry if I offended you. When I said "we", I meant we, as in "most people", including myself among them. It certainly seems that illness and disability do make a lot of people uncomfortable! However, it's not for me to say how the word "epileptic" makes anyone else feel. You are fully entitled to your feelings and opinions.

I did want to make the point that as long as people are uncomfortable with epilepsy, we can call it anything we want, but they will still be uncomfortable. But I also thought that, perhaps if we don't make an issue of the word "epileptic", it might help people to be more comfortable with epilepsy. Just my opinion.

How I feel: Personally, I can't stand the word "seizure". I don't like the sound or spelling of it. I wince every time I say it. I'm not that crazy about "epilepsy" either. If you ask me they're both ugly words. You'd think they could come up with something that rolled off the tongue better, or at least blended into conversation better. Honestly, I can barely talk about it in public. We all have our thing. My Dad, who survived five or six open heart surgeries, and all of the bloody stuff that goes along with it, could barely stand to watch someone getting their blood drawn. We each have our own sensitivities.

Kirsten: I was not aware of the prostitution thing. That's terrible. I'm sorry you had to hear that. I take it you are saying this was not just one jerk. I was also surprised to hear about the "sparky" nickname, but I could see that happening among kids (although I don't know when that was).

I grew up in, and have lived in a number of places all over the US. I have heard the "like he's having a seizure" joke, complete with demonstration, and there is of course the obligatory "seizure" scene on a TV drama. I have noticed that on the news that famous people have a "seizure", history of "seizures", or a "seizure disorder", not "epilepsy", as if it's ok to have a seizure, but not epilepsy. However, I can honestly say that while I have to some extent been "discriminated" against, especially by having my abilities questioned, I have not experienced any real ridicule or insult because of having epilepsy. Whenever I have a seizure in front of strangers, they inevitably are either genuinely concerned, or simply ignored me to avoid it. When I tell people about it they are invariably genuinely concerned or sympathetic, although in some circumstances I can tell they somehow think less of me at the same time.

While I have heard the term "retard", or other such things used as insults, in my experience "epileptic" just isn't a put down or insult. For the most part people just avoid "epilepsy" or "epileptic". It may be different elsewhere.

 

[qtowngirl]

I did want to make the point that as long as people are uncomfortable with epilepsy, we can call it anything we want, but they will still be uncomfortable.

i couldn't disagree more, on the above or below statements.

perhaps if we don't make an issue of the word "epileptic", it might help people to be more comfortable with epilepsy.

the comments pretty much contradict each other - on one hand we can call it whatever and they'll still be uncomfortable, then, not to make an issue of 'epileptic' and maybe they'll be more comfortable with epilepsy. i thought that no matter what it was called they'd likely be uncomfortable...?

the truth is that in the general public, esp. with those that have never dealt with it or know anything about it, it will stay status quo until everything from definitions to stigma are changed. and who's going to put effort into that? for the most part it is epilepsy societies that do things based on today's medical respect, and people like us.

i fully understand your issue with the word seizure, it's not exactly pretty, however there is a large difference here. the brain actually seizes, this is a true action of one of our body parts. referring to someone with this neurological disorder as an epileptic is simply name calling. it's old school, it's rude, it proves the stigma, and greatly disrespects the person. name calling (hence it being the word used in jokes like kirsten and i said) is supposed to be over with in your highschool years if not sooner, depending on maturity. imo there is no grey area here. calling someone an epileptic is ignorance, flat out.