|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
|
As soon as you say arthritis to someone...you get the sodding response "but you're too young to get that..its for old people.."
Frankly wish it were called cancer of the joints..I know that sounds bad but it might help people get it first time!
Darshin
- PS sorry about the moan.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
|
Hi Darshin
Don't apologise for moaning on here - it is what it is for. I agree - people have no idea what RA is - I'd never heard of it until I was diagnosed, so it's not surprising others don't. They just hear the word arthritis - which they think only affects 'old' people!!!
I've taken Jenni's advice on here and now tell people that I have a serious autoimmune disorder (in fact I have 3 - but 2 major ones). I tell them my immune system has been attacking itself and destroyed my joints (the RA) and my nerves (the guillian barre). I also have an underactive thyroid (the 3rd) - which I only tell them, if they get really interested - or want to know why I get free prescriptions!!
You could try that... it certainly opens up the conversation - and I know longer get the silly comments! I am 49 now - and do get funny looks when I park in disabled spaces!!! They also only think 'old' people are disabled - until I try getting out the car! I have learnt that it does help to have a sense of humour when dealing with people! One supermarket assistant said 'would you like help packing?' - there was me on my crutches at the time - bit obvious I though, that I want help!!!
I know when you are in pain, a sense of humour is lacking, and my patience is certainly very thin. At those times I tend to stick close to friends, who don't make such stupid comments.
Hope that helps and that your treatment starts to work soon.
Anne
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
You are right Darshin, I have heard 2 consultants call it cancer of the joints.
A lot of doctors now call it Rheumatoid Disease and I think in time that is what it will be known as.
Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
|
My consultant now calls it rheumatoid disease too.
I used to get really fed up with the comments but now just let it wash over me.
Maria
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Doreen and Maria,
yes i like that idea of calling it Rheumatoid disease,
if you mention Arthritis then you get the usual ohhh i've got a bit of that in my knee and it's giving me jip etc !!
yes i do have Osteo in both my knee's but RA is totally different and to be honest before i was diagnosed all i really knew about it was that youngsters can get it.
Darshin you're allowed to moan on here,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Using phrases like long term chronic auto immune disease usually shuts them up pretty quick, I've stopped telling people.
Sara
|
|
|
|
Rank: Member
Groups: Registered
Joined: 6/21/2010
Posts: 26
Location: Wales
|
I think calling it cancer of the joints (which I have noticed in a few places) would have everyone assume that you had (as my grandfather put it) 'The Big C', and that would come with its own set of assumptions as to what state your health was in!
You might be left with quite a few explanations to make as to what your type of cancer does!
On a personal note - I tend to try and correct the assumption that its osteoarthritis by explaining that my immune system overworks and consequently messes up ALL my joints (rather than just ones which are overworked) so I take meds to knock it back.
Then I tell them my meds (MTX) are the type they give to cancer patients - with a different dosage. More often than not - the words "meds" and "cancer patients" in the same sentence make people look very taken aback.
... And if they continue on the too young front - I mention my friend's mother has had the condition since she was three. (Her diagnosis/treatment was the kind of thing that would give anyone nightmares. But that's another story)
They tend to ask more questions after - but usually by then - they've realised that what I have IS NOT what their gran had from what they think was too much knitting.
~wanders off to try and ring her helpline again. stop putting it on answer machine! *shakes fist*~
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
|
I think I will call it Rheumatoid DISEASE as well..and if some one is still unsure/irritating I might use the cancer word!
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 1/27/2011
Posts: 68
|
I'm quite suprised at the response people have given.Can I just say that most of us here on this forum have lost a dear family or friend from cancer.WE who have unfortunatley been given this horrible factor in our lives will live on and It's a case of copeing with it what else can we do? As for naming it why is not just RA acceptable ? If anyone asks what that is there in the dark ages.It's touch a nerve with me this comment and we should not be for a long shot being compared with cancer sufferers.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
|
Hi Mags, I tend to agree with you, I lost my dad to cancer just 9 weeks ago and I hate that word. Lets hope we NEVER have to say we have that. Lorna 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
I lost my mum to Cancer just before Christmas 2009 , she died suddenly overnight and in hospital without friends or family around her after a 20 year fight. If people are comparing it to Cancer then they haven't a clue about it or it's effects and treatment.... in the same way some people haven't a clue about Rheumatoid Arthritis. Showing ignorance about Cancer and it's effects then expecting people to know about RA is a ridiculous reality and concept. The diseases are so different , that to hear that consultants are stating this is very worrying indeed. Is it the uncontrolled division of abnormal cells in joints on the body ? No .. It is RA. The best way is to generally educate people into what exactly RA is , and what it's effects are , not to change it's name. What good would it be telling people you had "Cancer of the joints" when this is not true. If it's a friend .. then they will take time to listen to an explanation .. if it's an employer then it is in their interests to listen... If it's a stranger then firstly.. why tell them?.. and if you do, examine your motives for telling them. I think Rheumatoid disease seems to be becoming the term in vogue , as it covers a whole gamut of types of the disease and includes associated conditions of the disease, and i am happy with that or RA. Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
|
Rank: Member
Groups: Registered
Joined: 6/21/2010
Posts: 26
Location: Wales
|
Hi all,
Apologies if my comment came across as crass or insensitive. It was not intended to be in any way. I do say that MTX is used for cancer patients as it can indicate how challenging this condition is - albeit in a very different way to cancer.
I call it what it is - RA - and hope that gradually my explanations as to what this horrible condition is will help people to understand the condition more.
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
|
To me RA is bad enough as it is without making it sound even worse by suggesting it's potentially cancerous, so I would absolutely hate to have that label attached to me. And also having other friends who are sick with one form of cancer or another I know their suffering is pretty immense at times, and I really wouldn't want to tempt fate by putting myself in the same category.
But on other hand it is infuriating that there's so little knowledge of RA until you get it of course. I certainly look at everyone who is moving stiffly, or gets on & off buses slowly, with a lot more sympathy than I used to. I just tell people I have a painful bone disease that is incurable and can only be kept under control with v strong medicine that has horrid side effects. 'Nuf said usually. Polly
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
|
I've never felt the need to call it anything other than RA. I do get the odd comment here and there, however, on the whole, it is accepted that this arthritis is very different from osteo. People who know me well know the difference as I was reasonably active before diagnosis and they also understand my frustrations. I have told my best friend that there is a professor who calls it cancer of the joints, but for me, that is a reality I don't want. If asked, I do tell people (not random strangers, but co workers etc) that the drugs I take are chemo drugs in their lowest form hence increasing their understanding about the severity of the disease. However, I also tell some people (and yes random folk) who see me walking with a stick and inevitably always say to me "what have you done?", I say "I haven't done anything". And that usually lets them know I have no desire to discuss with them.
It is what it is, RA.
Nina x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
|
Reading some of the recent replies particularly from RichC and others that really I need to be very careful about using the C word.
Medically its not the same. its not a terminal disease, its treatment is not as drastic clearly.
Its just the terms "rhuematoid", "auto-immune" seem like jargon to lay people and the lightness with which the word "arthiritis" is often treated.
I think the way Felix just described it is better... or perhaps rhuematoid disease is a "Joint wasting" disease for which there is no cure and only strong medicine to delay the effects.
Darshin.
|
|
|
|
Rank: Member
Groups: Registered
Joined: 4/15/2011
Posts: 19
Location: Orpington, Kent
|
I'm going to call it rheumatoid disease from now on. People only hear the word arthritis and say their "Nan has that in her knees and is having a knee replacement" etc etc. I wouldn't say cancer of the joints, osteosarcoma is a whole different horrific disease. One that I'm certainly thankful that I don't have!
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi
I don't like the word cancer to describe RA because it isn't. I do like rheumatoid disease though. Like most of you have said, it saves having to explain that it isn't osteo etc.
Sheila G x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
I usually say rheumatoid disease. When I told someone I had an autoimmune disease, they linked it to AIDS, probably because that's the disease that affects the immune system that is most commonly discussed/reported on.
Julie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
Well Im going to be a bit contraversial I know but here goes!
Once a Dr told me RA is "like a cancer" in the way it behaves and therefore the treatments are very similar. Certainly my rheummy will tell you the survival rates in modern care for certain cancers are very comparable with RA.
It should be viewed, I think, on the same footing as other autoimmune disorders like MS, AIDS etc AND certain cancers.
I dont like calling it RA because people hear the word "arthritis" and immediately say "oooh you are YOUNG to have that" and regale me with long winded tales of great aunt whatsit who had it in her toe once but liked her gin, or my nanna had that in er hip when she was 90 until the op, or to try and stop eating grapefruits etc
they have NO idea how very serious it is for some people.
there is, with all these things a spectrum. I met a lady recently in clinic who had no comprehension how or why anyone could ever be admitted into hosp with rheumatoid arthritis. she has had it in 2 fingers and gets the odd tired day for the last 20 yrs.... Once her foot hurt after she had been on a walking holiday for 2 wks to spain....
I smiled at her!
yet there is me. admitted 8 times in the last 12 mths and just come home again!
I understand why NRAS like the term rheumatoid arthritis as it joins us with a statistically large number of people in the "arthritis" group. I think this is wrong and we should align ourselves with the haematology/ immune disorders as people "get" the severe nature of things more readily.
Jenni xhow to be a velvet bulldoser
|
|
|
|
Rank: Member
Groups: Registered
Joined: 6/21/2010
Posts: 26
Location: Wales
|
Quote:
It should be viewed, I think, on the same footing as other autoimmune disorders like MS, AIDS etc AND certain cancers.
Sorry - but I cannot agree with you on that. I think there is a heck of a difference in being told "I'm sorry you have Rheumatoid Arthritis" in comparison to "I'm sorry you are HIV+" or "I'm sorry, you have terminal cancer".
|
|
|
|
|
|
|
