change the name

[lulul]

How many of you would like to see a change in the name , specifically to drop the word' arthritis ' of this disease?

[heatherp]

I totally agree! I don't think many understand the disease at all as there is a preconceived idea of what arthritis is...in fact I had that preconceived idea myself until I got the disease and found out what it actually is...

[Hidden]

Could not agree more. I have been thinking the same for some months now and was only discussing it with my RA nurse yesturday. Not too sure how one would go about impelmenting such an idea though....

Mel

[Hidden]

Yes, without a doubt! people automatically assume you just have an achy joint and same as heatherp, until I became ill, thought just that

[LavendarLady]

Yes I agree but I always make sure I say Rhumatoid A as so many people get it confused with Osteo A which is a totally different Arthritis and the comments I get are on the lines of "oh well we are all getting older, we have to expect this sort of thing!". In vain do I point out that RA affects even children and the usual age for diagnosis is 30 - 50! and Osteo A is wear and tear on the joints not your own immune system attacking you. Like everyone, can't think what else we could call it without downgrading it in some way. LavendarLady

[Gina_K in reply to LavendarLady]

Have to laugh at we are all getting older, nice come back is " a lot of children Have RA" .We could say we have an inflammatory condition of the joints - that sounds quite serious, rather than a casual hum drum RA? Or maybe we should just move on we can't battle the world of ignorance out there.

x

[Hidden]

Yes I agree, I generally just say "I have Rheumatoid!" as soon as the word Arthritis is mentioned that's it conversation finished. Because everyone as an achy this that or the other and they automatically think its the same, some people just don't realise it's a disease.

mandy xx

[Gina_K]

I think its called inflammatory arthritis by some people, so we will be keeping the arthritis bit. I always say its an autoimmune disorder, like psoriasis, underactive thyroid etc, body turns on itself, that initself implies, you have done something wrong, for your body to try and destroy its own joints.

I think I might blog about this later.

xxx G

[Gina_K]

There are other things , where the name should be changed, I hate to say it but suicide implies a crime, taking ones own life is a more appropriate description. Committing suicide think of it icide (infanticide) (patricide) they are crimes. Sorry but there are many descriptions of things that can have implications for others not intended. There is a campaign somewhere to change the previously mentioned. there must be a campaign somewhere in the world to change this conditions name.

Er I hope the above did'nt sound weird, it just occurred to me, and I know not the same, food for thought though.

Gina.

[lulul]

There is a lady on facebook running a campaign to change the name . Hope she succeeds. What would folks prefer?? Rheumatoid auto immune disease?? too long??

[Sheila_G]

Absolutely, in fact, I already have. I now say I have rheumatoid Disease and people say "Oh, is that arthritis?" and I then say "well, arthritis is just one symptom of it. There are so many other things involved." It is amazing how differently people react to that rather than saying RA. Like others have said most people think you mean OA. Sheila x

[emandedmum]

I agree, something needs to change. I hardly ever tell people I have RA (not that I would shout it out from the rooftops if it was called something different) but I get fed up of people misunderstanding and it really gets me down having to explain it all and then answer a barrel load of questions. Everyone knows the ins and outs of cancer for example, wouldn't it be a nice change for us if "Our Disease" was as readily accepted, discussed and understood by the wider world??

[Gina_K]

Systemic rheumatoid disease?, gosh that does sound awful scary!

[Hidden]

I totally agree with a change in the name because as soon as someone heres rheumaoid arthritis 90% off them have it either in there knee, little finger!!

[Hidden]

There are various factions out there trying for a name change and have been doing so for some years. The one most suited to the disease and more commonly used is as Sheila says "Rheumatoid Disease". It is to the point, says exactly what it is and stands well clear of the A word!

Lyn x

[Hidden]

Yep I'll vote for Rheumatoid Disease.

Sue x

[Hidden]

Hmm I nearly muted this idea some time ago, but like so many of you have said will it really make any difference. The ignorance of people against anyone who is not "normal" is a battle we shall never win, no matter what you call it. I have settled for Auto Immune Disease, and when (or if) they pursue it, I say it can affect my organs and joints. Even the medical profession seem to confine it to arthritis - just look at the DAS scoring? My nurse automatically looks at my hands. Well actually my hands are fairly ok now, but this god awful fatigue and depression etc etc gets on my whatsits - yeah right.... move on.

I know that it is called RA because it mainly affects the joints, but like everyone says it gets confused or people think it is just an old age thing and it makes you limp a bit! When I used to say I have OA if someone asked why I was limping, the reply was "oh yes I get that" It was usually someone who is about 103 and I used to think yeah but I am only 44! (at the time!) So I gave up then too....

So if I have to explain myself I just say Auto Immune Disease

Julie xx

[beaton]

But if you call it "Rheumatoid" where does that leave those of us with other auto immune/inflammatory illnesses?