Please let me know your views on the use of the word, do you care how you are described, do you view the word "epileptic" as a derogatory term? Your thoughts much appreciated. Many thanks
Do you have a problem with the word "... - Epilepsy Research...
Do you have a problem with the word "epileptic"? There is debate about the use of the word. Do you prefer someone with epilepsy instead?
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Cathygr
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'Epileptic' makes me cringe and I find it quite offensive, whoever uses it. There is something about it that seems derogatory and outdated, I say 'I have epilepsy'.
Epileptic has become a derogatory term, so "I have epilepsy" or "I have seizures" are much better terms.
It is not the word 'epileptic' I find a problem, but the stereo image Joe Public comes up with as soon as it comes off our tongues. I never see Joe Public treating my diabetic colleagues at work as if every one of them had Type 3.
I myself do not use the term epileptic I tend to say that I have epilepsy, however if somebody was to sSy I was epileptic I would not be offended.
Words ending 'tic' often tend to be rather derogatory, eg heretic, or mean very nervous states like antic or frantic. Therefore it's best to use the term epilepsy rather than epileptic.
I dont mind because its merely a way of describing something like she has epilepsy or she is epileptic no doesnt bother me in the least
This is pathetic folks! What on earth going to happen next? 'Epileptic' is simply a word that in one way or another describes a condition. If it was being used out of context and in a derogatory manner such as the word spastic was during the 1970's and early 80's then I could understand people being sensitive about it. You don't find people being offended by being called a christian rather than 'a person who has an unexplainably naive belief in a supernatural life force' neither do 'persons who uphold the law' mind being called a police officer.
The problem here lies in people trying to sound cool or trying to find issues in life with which they can complain in order to attract attention to themselves.
My advice (for what it is worth) - get a life and enjoy it instead of finding things to moan about. As a collective of people who suffer/tolerate/learn to live with epilepsy, there are far more important things in life to sort out.
Life is too short as it is for normal people - oops, sorry, people who hare of a majority disposition (don't want to offend them do we!), so lets just get on with making the most of it. Sticks and stones may break our bones but being labeled epileptic will never hurt me!
Have fun, be good and sleep knowing that you have been and are a good person 
(alternatively, wast your time ploughing through forums finding things or creating things to get offended about and have a good winge)
To be honest, you seem to be doing more complaining in this discussion than anyone. It's not a new thing that some people don't like the term epileptic, and I think it is sensible to have a discussion to see if there really is a foundation for such a dislike. I'm sure people on here wouldn't get upset by someone using the word "epileptic" unless they clearly used it in a hateful way.
Hi AmyBadd, I'm not normally this verbose, but it does get my goat when people get all tetchy over a word. However I am willing to concede that we all find some words more offensive than others and indeed some people find words inoffensive that I find very offensive. The danger is that it is very easy to blow things out of proportion: take for instance ethnicity. I was born Cornwall, but in ethnic surveys I am classified as White British. What if I preferred to be referred to as Cornish - the Welsh and Scottish would have a fit (sorry bad pun) if they had to be called British, but the reality is that we are all citizens of the United Kingdom, but there isn't a collective noun for that and every body tends to take some pride in their origin so what should we do?
Personally, I think that nobody should be ashamed of their origin, sexuality, medical condition or anything else. So we should all be Epileptic And Proud! Anybody want to start up a clothing label with me?!
see also additional post below
Sounds like it's you who needs to chill out or get a life love!
The collective for the UK is British I thought. You prefer Cornish when for a lot of counties in the UK (Cornwall is classified as a county although I do know they that Cornish people claim a country and a flag) there is no collective word other than derogatory.
I prefer to say I have epilepsy and have epileptic seizures.
However the common misconception is that a person labelled 'epileptic' will fall to the ground thrashing around like a fresh caught fish (appologies to those who get tonic clonic no offence meant) where as epilepsy is so individual and the seizures different for each of us and often well controlled with medication and/or lifestyle choices. Epilepsy as a word, I feel, tends to more accurately infer the condition has a wider spectrum.
I've recommended some earlier replies but have to say I am not offended by the use of 'epileptic' but will tend to politely tell those that use it I prefer a person with epilepsy who has epileptic seizures and why that is.
This seems to have become an extremely long thread about what is a word rather than discussing ways to help awareness and acceptance from the general public. Getting too caught up in the use of one word is more likely to isolate rather than integrate.
My rant over now
Sporan
I couldn't agree more, I just wasn't brave enough to say it!!!
Sorry I meant I agree with Pterodactyl
In common with others, I don't have a problem being referred to as being epileptic. We are in grave danger in this country of drowning in a sea of political correctness!
I don't have a problem with the term as folk are so ignorant and miss informed of the condition ,,But I do have a problem with the term FITS........
where the devil dos that term come from...?
I find the word 'epileptic' offensive as it defines the person by their condition. My son has epilepsy and I would cringe if someone referred to him as an epileptic. He's a little boy with epilepsy.
I agree as I suffer with epilepsy myself and I find if I say I'm "epileptic" many people take rather a large step backwards! 
Where as if I descibe myself as suffering with mild epilepsy, they tend to accept this more easily?
I think it's really down to the general public having little or no understanding of the condition,so it's not really talked about..... rather a taboo subject!
This is very sad as maybe if children were taught more about disabilities/conditions at school,things might be more acceptable and happier for one and all !!
It's totally daft to get offended by any medical term unless it is taken out of context and used in a derogatory manner such as Spastic or Thalidomide from previous decades. If you have epilepsy then you are epileptic - like it or not, and a member of the epileptic community. The word is purely a descriptor that allows us to communicate to people in a very succinct and simple way that we have seizures of a particular nature. If I were to suggest that we use the word 'flogaveiki' instead would everybody get offended by that? It's icelandic for epileptic by the way! A little silly you might think, but it proves a point - there is no need to get on our high horses and get so petty over just a word that is very useful.
My son is also epileptic and is autistic too. Should I get all upset if people call him 'an autistic' and 'an epileptic'? Of course not, it's the truth so just get over it!
My two younger sons of 4 and 2, can be really horrible when they get tired and grouchy, but I don't hear any noises being made about calling children grouchy, or little sods. I hear other parents in the park, and have seen it on television documentaries too, where the language they use is highly abusive, but a court of law has ruled that if it is everyday language being used then it cannot be deemed offensive. The whole world is upside down with much bigger issues, so why don't we concentrate on them instead?
It is about whether you use the word as a noun or an adjective. Do I want to be defined as a condition or say I have a condition, very much the latter.
The world does have lots of issues, but this is one that is important to some so they can concentrate on it and you can feel free to concentrate on all the other world ones that are of concern to you right now. Thanks for your contributions - they are much appreciated.
• in reply toPterodactyl
I wouldn't normally do this but I truly feel its an important point.
You say debate with augments for and against. That is different to confrontational arguing. You do make an interesting point regarding the use of British and the affect it could have on individuals from Wales or Scotland. The problem there is that being a part of the Uk does make you British, this extends out to territories of shore that fall within the British crown. Canada isn't America but it has British heritage and associations. The general upset comes from calling a Scottish person English. Separate countries within the same island. So it's about the correct name, not just the name. You mentioned about calling children grouchy or little sods, funny as that may have been can you honestly tell me that during a conversation if someone has called you a name you haven't become offended? And I will be honest if someone met my child for the first time and said is he autistic rather than does he have a form of autism I would be a little out out. Just because a court of law states that no historical or social precedence is set to qualify a word as offensive doesn't mean it isn't. The shame for me is that so much time is being spent by individuals in this site actually defending their own right to refer to themselves however they wish without the feeling that someone else thinks its daft to care. Every person point of view counts towards how they feel. It is belittling to those who dislike the term to be told there are more important things to worry about than a name. I could list a series of surnames that the moment you hear it, conjures a specific image and in some cases a judgment. To agree it could be be improved is to agree something isn't wrong. Still as you say adding a lighter to the conversation can help so at least when I say I have Epliepsy to new friends and they aren't sure how to react, it always helps to say 'its okay, it's been years since we have been committed to an insane asylum and tortured for having the devil in us, so it's safe to say out loud' context is context, opinion is opinion. Everyone is different as they should be. Debate don't argue, make a point but not by dismissing the feeling of others. As a last comment, when referring to non-epileptics that does of course include husbands, wives, partners and children etc that have to cope with and deal with a catastrophic event occurring in from of them that may just scare the living day lights out of them.
I'm done now. Signing off
GM
Pterodactyl• in reply to
You have a point, and everybody's opinion is valid no matter who agrees or disagrees with it. For me the point is - so what? why are we getting our knockers in a twist over somantics?
In answer to your question, I very rarely get offended, language is a very strange beast that can be used in all sorts of ways. When you have lived with an autistic you start to understand language in a very different way, and the way people use it. You can change the whole meaning of a sentence by just changing the position of a comma. Who would ever have thought that the word 'book' would actually now mean 'cool'?
The way that people use words is often part of their cultural heritage so if someone says something that I don't like then I have to be man enough to listen to what they see and determine the meaning and intent of their language rather than fluff myself up and get all hoity toity.
The consultant who told me that my son was not playing with a full deck of cards didnt mean to offend or insult, it was just a turn of phrase that he felt conveyed a message in a succinct way. His background din't leave room for the fact that it might offend anyone. therefore there was no intent to be nasty, so why should I get offended - it was the truth after all no matter how much that actual information hurt.
The problem we have here bleeds over into the realms of social thinking and influence which then becomes politic. I think it is a shame that this happens rather than individuals thinking for themselves and being an individual rather than the product of mass sheepism.
I don't really have a problem being called an 'epileptic' at the end if the day, you have to accept that you have a condition. I completely understand why people don't like being labelled as a condition, because you don't want to feel like epilepsy is your life, you want epilepsy to be a small part of who you are. However, I've spoken to so many people who use the term 'epileptic' but the majority if the time they're concerned about my health and showing sympathy. In the grand scheme of things, I've been labelled and told a lot worse things than 'epileptic'. I think you only realise how insignificant being named an 'epileptic' is when you've had a lot worse said to you
well said
I totally agree...
I haven't logged in for a while but what a topic to come back to. I hope that this creates no less and no more discussion than is already going on. I don't feel offended by the terms Fit and Epileptic but conversationally it acts as a full stop. I don't mean the conversation stops and the person walks away, I mean that it conjures an instant image (sometimes informed, sometimes ill informed) that halts discussion. Right or wrong people have an idea of what Epilepsy is. If I said I'm an Epileptic, the response I get back is 'Oh' but when I have said I have Epilepsy it's is open ended in a way that has lead onto someone asking what happens or are there different types. Same with Fits or saying I have seizures. Without trying to muddy the conversion waters, should a person say they have diabetes, they get asked about insulin or diet. If someone has a dog they get asked what breed. So I simply find that saying I have Epilepsy leads to an open discussion. I don't consider those who haven't experienced Epilepsy as ignorant. That term is fairly harsh and best kept to circumstances where all the facts are presented and chosen to be ignored. If you don't know, you don't know. This site is filled with people who don't know a lot about Epilepsy and they are being tested for it. When all is said and done i choose not to describe myself as Epileptic because it is a limiting term for a very involved condition and set of symptoms. The same again with the word Fit. It just doesn't describe what happens to me at all. It is an outdated generalised term that does nothing to describe what it was originally assigned to. As I said at the beginning this has always been a sharing and supportive place to gather and I hope that my personal opinions and views, though possibly shared and disagreed with wont set off any kind of negative response.
Regards to all
GM
Dear all - thanks so much for your responses - I'm glad this question has created some debate. All your contributions are valued and relevant. Thanks for taking the time.
I have re read a couple of the previous posts and comments on here. Sorry to say that they come across rather aggressive and overly sarcastic. Seems to be a them and us tone running through a couple of the threads and its a little negative. I am not coming down on any one side, mentioning any particular posts, entering into a debate over tone or seeking to create a reaction. I just feel that what a few months ago was a supportive place to everyone is now somewhere not so. If someone found this site or rather this thread and wished to find out more about people with Epilepsy because themselves or a loved one was new to the condition it would be a rather sour introduction.
One voice out of many
GM
Kantey• in reply to
I agree. We were asked our views, not to have arguments. How I feel about myself matters. I also thought posts weren't supposed to be aggressive. Rather sad.
I'm sorry if you find my posts that way, but this is meant to be a debate in which arguments are put forward. I like to give a more humorous tone to my thoughts by invoking images too. If you find the post slightly aggressive then you have merely picked up on the passion that I have for people fulfilling their lives with events and experiences that are far more meaningful than this. I know that importance is often a matter of perspective and relativity, but you have to admit that compared to many other things going on in the world, this has very little relevance.
I personally hope that by speaking up in this way that it will help anyone coming across this thread that there is more to life than letting epilepsy define who or what we are - it is only a medical condition. Yes, it might give us limitations, but we are alive and can enjoy life better than some others with different medical conditions.
The moment you start taking offence in this way then that is the moment that you have allowed other people and their opinions to matter more than your own. We should all stand up proud and be brave enough and confident enough to not care what other people think about the way other people describe our condition or the way we do that ourselves.
Ghost memory has an interesting point in the way that we can better engage in conversation with non-epileptics. But that is a contextual element to the argument, giving a good example where there is an advantage to modify the language we use. It also shows hoe you can quickly get rid of unwanted attention at a party
I hope that some readers might have a little chuckle at my previous posts (the sarcasm was aimed at lightening the gravitas of the post) and I hope that everyone reading any thread on this site will understand that life is for living but it is up to us as to what we make of it. And weather or not we like the word epileptic, in the scheme of things t is not going to that big a difference.
Good karma to you all, have a great life and don;t let anything stop you from having the best life you can achieve. xxx
• in reply toKantey
Thank you for bringing up this point. What has turned out to be a request for other's opinions, has turned basically into a "row"! Grow up people!
I don't find anything wrong with the word epileptic.I have had epilepsy for 50yrs. If you have diabetes then you are a diabetic, so what difference does a word make. It only defines your condition. It's other people's perception of something they don't understand. If you had broken your arm then it is noticeable, and maybe others are afraid of the "unknown" that is the problem.
what a load of rubbish having had epilepsy or beng an epileptic for 46 years i really don't care what it is called I would just prefer not to have it! But after having every drug given to me and the op! I give up call it what you like it is still there! Stop worrying about the word you use and enjoy your life!!
hear, hear
I am a Voluntary Editor and Panel Member for Epilepsy South Africa, who send out a bi-annual magazine to all our members and people with epilepsy. The request was made by Epilepsy South Africa not to use the word "epileptic", as many people get upset with this word. In all our articles and stories which are collected and edited, change of grammar is made to "a person with epilepsy". The magazine stories are all done by "people with epilepsy". I, as an Editor, will stick to this motto.
Cathygr• in reply to
many thanks for your reply - it is a good policy and I feel your approach offends no one nor does it create a stigma around the condition. Good luck with your work.
• in reply toCathygr
Thank you, Cathygr... Our bi-annual magazine is called Epinews. Issues are done twice a year, i.e. Summer and Winter Editions. I have been the Editor for almost 4 years now and love supporting the Epilepsy community. Please see my Page on Facebook: facebook.com/lesdonn should you be interested in a more positive approach to Epilepsy. Have a wonderful day!
I honestly don't mind what I'm called. I think the problem is not the word, it is how us people with epilepsy feel about the condition. Let's face it folks, none of us want the condition and we all wish that non-epileptics (sorry) understood it better but hey, we have it, we live with it. How we react to the fact we have epilepsy is more important than what we're called. Personally, I would rather be known as Ali than anything at all to do with anything I have or don't have.
The most important thing is that we are willing to discuss the condition with people and remove some of the fear or misunderstanding of the condition. My colleagues had a major panic attack when I had a partial on them, I just know they'd have a dicky fit (excuse the pun) if I had a full blown seizure on them.
Also, why is it that the only person who knows how to deal with any condition is often the person who lives with that condition? In work I'm the only person who knows how to deal with me if I have a fit - very handy seeing as I'm the only one who won't have a clue what's going on if I have one.
First Aid ought to be taught at school so that things, like epilepsy, are less scarey to people.
Sorry, I know I've gone a bit off track but hey, it's a word at the end of the day - saying one or the other won't make a difference to anything at all.
Take care & try to stay happy!
you have put that so much more eloquently than I did - couldn't agree more Ali
I totally agree with you, as I have had epilepsy for 50 yrs. My 37yr old so, and 43 yr old niece also have it, as also did my father. We learn to live with it, as people with any other condition do. My son was lucky to have the part of his brain removed that caused his epilepsy, and and since the op has been seizure free for 3yrs. Mine is well controlled by Lamotrogine andPhenytoin, but they have not found a drug that will control my niece's. She had all the tests in London like my son, but was found unsuitable for op for certain reasons. We all stick together and help each other out, and all I can say is I am thankful for my drugs, as for the first 20 yrs they were horrendous. Best wishes to you all
We just say 'living with epilepsy' I prefer the word seizure to having a fit.
who cares about the word - i tell people my condition and watch them wince, and they wince because of Ignorance to the condition not the label; people think i will immediatly spas out at a mere flashing light or fit on the least profficaton, so i inform them that most of my life is just as dull as there's..............and stop been scarred I AM NOT A MONSTER just someone with a dull (yes dull ) condition and they need to get over it. ITS a LABEL
The majority view
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There is no doubt that most people with epilepsy reject the term 'epileptic', in the UK and the US at least. The evidence for this is that the main Epilepsy charities have pages which clearly state that using the term 'epileptic' to describe a person is no longer appropriate. If there was not a consensus and a dominant view on this, then the advocacy organisations would not have this position as a matter of policy.
*
The minority view
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There is a minority view that the word 'epileptic' is just a word and hence does not matter. There is another minority view that we need to reclaim the word, to prove that we are strong and if someone else is prejudiced, that is their problem.
On the latter: I support someone's right to re-claim the E-word. It is not my place to go against that, just as it is not right for me to object to certain communities using the N-word between themselves. Some people feel passionately about reclaiming the word 'Slut', because they feel it is wrong to imply that a woman should not have sex. If they want to express this by calling each other 'slut' when they are together, then great. But if they hold this position and take it that one step further, and say that all women should not object to being called sluts - well, slut remains a very nasty word. Just because some women have no problem referring to each other as 'slut' or 'bitch', because they feel empowered, it does not mean that it is OK to call everyone a slut or a bitch in every circumstance.
For me - and for the mainstream Epilepsy charities, I guess - there are many reasons why it is more than just 'political correctness' to object to use the term 'epileptic' when referring to 'people with epilepsy'. Why 'epileptic' is more than just a word.
The first reason is the sheer size of the public problem. Illnesses like epilepsy, cerebral palsy and mental illness - are different from those like diabetes in the sheer magnitude of the prejudice that people with these conditions have to face. Historically, when we used 'epileptic', 'spastic' and 'lunatic' to describe these conditions, people could be locked up, prevented from marrying, and subject to hundreds of de-humanising treatments from the public and the medical establishment. To a much, much greater extent than people with other conditions ending with -ic that carry no or little stigma. In the UK, before 1970, if you had epilepsy it was actually illegal to get married.
Do a search for 'epileptic' and prejudice in Google and you will get 1,640,000 results - three times as many diabetes. In contrast, the term 'epilepsy' and prejudice gets far fewer hits.
We don't use the word 'spastic' any more. We don't use the word 'lunatic' any more, either. We choose not to use these words to demonstrate that we respect the person and recognise that the historical treatment - and current prejudice - is not right. We choose not to use the N-word for the same reason.
Where there is less prejudice in the world, the term is less cringeworthy, so there is not as much motivation to remove the word from our lexicon.
Even today, surveys show that only 40 per cent of the employers think they could employ someone with epilepsy. Bear in mind that this figure is not just the proportion saying that a person with epilepsy could not do a specific job. Rather, it is the proportion saying that there is not ONE job in their company that a person with epilepsy could do.
No wonder the academics who did the research said that there are still "medieval misconceptions" about epilepsy.
Saying 'person with epilepsy' or 'they have epilepsy' recognises that the person is a human being with skills, knowledge, interests and foibles just like everybody else. It is just that they have epilepsy too. As one other commenter has said, it keeps the conversation going. It says 'OK, what else is there to talk about as well?"
Like the other commenter says: person with epilepsy opens up a conversation between equals. 'Epileptic' or 'epileptic patient' just shuts it down.
Person first. Illness second.
Yes I have a problem with the word "epileptic".
I am a person with epilepsy. The word epileptic was used in hushed tones and with great embarrassment in the house I grew up in.
I am a person. I have epilepsy. It is a part of me not all of me.
I don't find it offence, at all. To be honest my focus is more around controlling my seizures and raising awareness rather than Symantecs... Just my opinion though..
In addition something that does annoy me personally is when people shy away from using terms like Seizure and call them attacks for example. Especially medical professionals. I feel like saying i'm the one who is living through this, calling them attacks is not going to lesson me any more fear or pain.
Although we are aware that my 19 year old son has epilepsy for about 3 years now, we avoid calling it "epilepsy" for his sake and prefer labeling it a seizure disorder to spare him the stigma of the word epilepsy.
The problem with the word "epileptic" is not that is that offensive to people with epilepsy it is what joe public thinks when they hear it because it carries a lot of the stigma with it.
Saying "I am epileptic" is the same to them as a person with a psychosis saying "I am psychotic". They are going to think of a person laying on the floor convulsing and foaming at the mouth, but we know that many people with epilepsy never have a tonic/clonic seizure in their life's. Then there is the fact that "epileptics" were forced to live in colonies like lepers, burned at the stake for being witches, put into insane asylums up until the 1700s, and even not allowed to get married in 17 states until 1980.
The use of a global stable attribution to describe people is always dangerous. Any time you take a single word and describe a group of people, that abuse runs the risk of change within common culture. Blacks, negroids, handicaps, psychopath, schizoid, idiot, faggots, were global stable terms from previous era describing people that were not always intended to cause harm when they started. The term Epileptic runs the risk of the public attaching global stereotypes on a group and stable attribution on an individual if they satisfied with the term epileptic and don’t think beyond. The danger is that two terms match quickly without much attention. The term epileptic can be matched with other single word attributions in parietal structure of the common joe. A couple of terms can match quickly leading to stereotypes and associative error. Thinking of a person with epilepsy is the other half of that where someone must attach more than a global term to something they don’t see everyday.
He .he .he!!….Epileptic??
Who cares?? it's only a meaningless 'black & white' label in an oh so Colour Filled World
for them that wants to see!!??
Personally I use the Word,(descriptor), ...Epy!!!!
When I am asked ")h my god! What will I do if you have a 'Fit'??…..my reply is always;-
"Throw me in a Bath with your clothes and I will wash them!!
pull the plug and I will spin dry them for you!!"
if they cannot see the absurdity of their Question in the first place then the Problem lies with them and their strangely 'wrapped' brain/perceptions ' not with the people saddled with a condition they never asked for anyway!!??!!
YES?? NO??
Brothers and Sisters!!.. We are who we are!!
Humanities Best!!
Doesn’t really bother me but personally I find calling it the curse is more apt. When on occasion someone is derogatory about it I just tell them ah well it just means my brain is trying to work way faster than yours lol
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