Ignorance of Epilepsy in the United Kingdom!!!!

[Elaine H]

I have got to tell all you lovely people in CWE about what I saw yesterday in a national newspaper, here in the U.K!
The Sun newspaper featured an article yesterday, it was about Tonbridge Wells County Council, they had decided to strictly ban the use of the phrase "Brainstorm" and replace it with "Thoughtshowers" as they were worried that it would be offensive to "epileptics"!!!!!!!!!!!!!!!!!!!! I was totally incensed when I read it, and I got straight on line, and e.mailed the lady that wrote the article. I then got a BBC radio phone in to discuss it. I simply said, that as a member of Epilepsy Action, and The National Society For Epilepsy, and someone who had had epilepsy for 22 years, there is no way on this planet that I could take offence at the term "brain storm" and I took more offence at being referred to as an "Epileptic" a term I find extremely derogatory and degrading, aswell as archaic and ancient! I said that I was sure that I spoke on behalf of my fellow members of these organisations, and surely the world over people with epilepsy could not possibly be offended by a phrase that has been around for many many years!! I also pointed out, that it was articles and instances like this, that ostracize people with epilepsy, and get the public thinking that we want special treatment, or that we think we are special or whatever.

I would be interested to hear back from you guys, I really cannot believe that anyone could be offended, but let me know eh? I think it is political correctness gone mad!!

Many Thanks

Elaine H xx

[RobinN]

We have had a few thoughts on this subject:

Offended Epileptics...

I personally don't mind the word Brainstorm, and I hate the word Epileptic...
but then again I think it is too broad of a term anyways, and labels instead of finding the true cause.

[Elaine H]

Hi RobynN

I am so glad that you agree, I have never ever met anyone that has epilepsy that likes the word/label epileptic! I despise the word.

Good to hear from you, and keep it all crossed for my brain surgery next Thursday? I so want to get my life back on track again, and I am determined to be rid of my seizures for good this time!

I'll keep you posted, and thanks for your support!

Best Wishes

Elaine H x

[Bernard]

... they had decided to strictly ban the use of the phrase "Brainstorm" and replace it with "Thoughtshowers"

I agree with what you told them Elaine.

[TeeTees]

Hi Elaine,

As you can tell from my Avatar, I'm from the UK too.

I only noticed this when somebody on another (non-epilepsy) site brought it to everyones attention as being a complete and utter load of 'Politically Correct' nonsense.

I sent back telling 'em all about me, and that I had never even considered the term 'brainstorming' to have any link to taking the mickey out off people who have seizures.

Complete and utter rubbish from this Country AGAIN, I'm afraid. It does make you wonder whether all this other Politically Correct labelled nonsense has come from votes of the majority of the sufferers, or simply from people sitting on the back-bench at the House of Commons being bored sense-less and just wanting to stir things up again.

Nuff said

[haird18]

Elaine,
Have you ever heard of peoples first language go to the activist page and read it. If you are interested email me at my email address and I can give you more info. o.k. Also I have been praying for you and your surgery and that it all goes well. Just remember you have all of our support and I will also for the physicians to guide them through the surgery. And remember someone is always watching over you!!!
David Hair

[Elaine H]

Hi Tee Tees

Great to hear from you! I just can't imagine that anyone will write back in disagreement with us all surely? Yes, politically insane, this country is gradually getting worse, although from what I can gather from the other people in other parts of the world, epilepsy is as misunderstood abroad, as it is here in the UK, and I shall continue to do my bit to explode the myth that we are all bonkers, and possessed by evil spirits, I have encountered the most unbelieveable stupidity and ignorance over the last 22 years, especially in the workplace, I have my second lot of brain surgery next Thursday in London, and I can honestly say, even if I get a complete cure, I will continue to wave the flag for the cause!!

Thanks for your support! Isn't this website wonderful?!

Cheers

Elaine x

[Elaine H]

Hi Hon

No I have never heard of that, you must let me have more info. I hope you are ok, and thanks for your kind words. I am trying to be positive about next Thursday, but the more I think about it the more terrified I get!

My mum will be watching over me bless her, that's what is keeping me strong, that and the wonderful support from you guys, keep in touch eh?

God Bless

Elaine x

[TeeTees]

Hi Tee Tees

Great to hear from you! I just can't imagine that anyone will write back in disagreement with us all surely? Yes, politically insane, this country is gradually getting worse, although from what I can gather from the other people in other parts of the world, epilepsy is as misunderstood abroad, as it is here in the UK, and I shall continue to do my bit to explode the myth that we are all bonkers, and possessed by evil spirits, I have encountered the most unbelieveable stupidity and ignorance over the last 22 years, especially in the workplace, I have my second lot of brain surgery next Thursday in London, and I can honestly say, even if I get a complete cure, I will continue to wave the flag for the cause!!

Thanks for your support! Isn't this website wonderful?!

Cheers

Elaine x

This website is certainly the best

I find it hard to believe peoples ignorance at times, but I suppose when you're led by ignorance you become ignorant. It's a shame not enough is done to bring awareness to countries about what exactly is involved in epilepsy, and that it's NOT a disease, it's simply a hindrance at times.

I'll say a prayer, and keep my fingers crossed for you with your surgery next Thursday - I hope all goes well, and you can say bye-bye to the seizure's

[Loudmouth]

I read this as well and wondered how many people with epilepsy had actually complained??bet no-one had!it doesn't bother me.i thought it was so funny i phoned my nan to tell her!(she also has Epilepsy)

[Elaine H]

Hi There

No one so far has taken offence!! I just want to contact this particular council and see if they know anything about epilepsy, bet they know Jack.... about it!
Good to hear from you mate, and I'd appreciate you keeping it all crossed for me next Thursday when I go to London to have my right Hippocampus removed, gulp...! Take care!

Cheers

Elaine x

[Loudmouth]

My thoughts will be with you. How long will you be in there for afterwards?I hope you will have good results from this,and here's something for you...

[Elaine H]

Hiya

I was out after about four or five days last time, so hopefully the same again this time. I know the food was delicious last time too, but I don't think they will let me have any wine! I will keep in touch and let you know how it all goes, and thanks for my flowers! Take care and please keep in touch.

Cheers

Elaine x

[epileric]

I have to admit using the term "thoughtshowers" is just wrong. It does make me feel as though people have to use a "special" word because as though seizure is a dirty word.

That being said I have no problem being referred to as an "epileptic". It's the medical term used & I do have a respect for medical terminology. It's more specific & descriptive even if people do tend to turn proper medical terminology into offensive colloquialisms.

Also I respect others who may not like certain words or who like other words but I've always felt the less sensitive I am to words like epileptic the less I'm going to encounter silly politically correct substitutes like "thoughtshowers".

[Loudmouth]

Although i tend to say "I have epilepsy" rather than "I am Epileptic",I don't take offence at it any more than i take offence at someone saying that my son who has Autism is Autistic.Just my opinion,mind you.

[epileric]

Although i tend to say "I have epilepsy" rather than "I am Epileptic",I don't take offence at it any more than i take offence at someone saying that my son who has Autism is Autistic.Just my opinion,mind you.

I tend to agree, I also refer to myself as having epilepsy. Saying I'm epileptic makes me feel like I"m defining myself by my E.

[RobinN]

Perhaps it is something that just is in my head....
From all the jokes made, to the visuals on TV, to the people playing with the word and acting it out. I guess it is more difficult to act out the word Autistic... and as I think of it... Autism is a spectrum, so you have higher functioning or lower. Most have some sort of savant abilities that are hidden.
Curious though, if your son were recovered... would you still refer to him as autistic?
My son was diagnosed with Aspergers but as he grows older he is losing the characteristics. I am also helping him to heal in many ways.

If my daughter is controlled without medication and never has a seizure again, is she still epileptic?

I guess it is just the visual that was put in my head by the media, that makes me dislike the word.

[epileric]

If my daughter is controlled without medication and never has a seizure again, is she still epileptic?

I guess it is just the visual that was put in my head by the media, that makes me dislike the word.

Good question. My assumption is that if it still needs to be controlled then she still does have epilepsy (& hence is epileptic).

For epileptic Tabers Medical Encyclopedia only says "an individual suffering from attacks of epilepsy" so I would be very curious to see how the medical community would make that definition.

[TeeTees]

One thing I HAVE noticed that is different between the US and the UK with references to Epilepsy, is that you guys tend to use the term 'seizure', where over here it's more 'fit'.

Personally, I find the term 'had a seizure' to be less harsh sounding than 'had a fit'. So I'd rather go with you guys - sometimes the terminology in the UK just sucks....they really do need to look into these things alot more deeper and actually ask the people who MAY be offended.

[Nancy]

Right here in the rural middle of the USA - my husband tended to introduce me by saying, "This is my wife Nancy. She has fits."
If we were out somewhere eating dinner (that's rare) and I had a quiet partial complex, he'd happily yell, "Oh look! She's having a fit!!".
No matter how I begged it was always FIT and I was reminded that I had to learn to understand that something was wrong with my brain.