Do you ever wish it was called RD( rheumatoid disease) instead of RA.?
It's at that moment when people ask what's wrong with you and you say R Arthritis. They come back with oh yes arthritis I've got that too. I've had well what do you expect at your age we all get it. NO YOU DONT my head is screaming out. I think if it was called RD and dropped the Arthritis it might be taken a little bit more seriously by those who haven't got a clue or think they know. What's your views if you have any?
Lol. The number of times this theme has been posted on here. Been there, had that, perhaps we should get a T-Shirt 😏
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I've not been a member for so long so I didn't know this had been raised. Sorry if it's boring you 😀
No sorry. No offence. I'm with you on being fed up of people doing the 'I've got arthritis too, etc, etc'.
It is not boring at all-- I sent a message to nomoreheels this afternoon on the exact same subject. I find it helps to tell people ( who ask why my hands are really swollen) , that I have an auto immune disease that can hopefully be controlled, but not cured. I only say that to the people who give me their own version of the treatment I should be on etc!! I always use the term rheumatoid disease- as do my consultant and RD team. ☺x
If we wrre yo say I suffer with a auto immune disease I think they might be a bit stunned but its true.
No not boring a valid point. And it does get on your nerves. The oh well everyone gets arthritis syndrome.
As NMH said everyone's cat has it as well!!
I've been calling it RD for about 2 years Jackie & not once since have I had the come back of "I have that" or "next door's dogs mother just takes paracetamol for that", you know the ones! It's really helped understanding that it's not OA I think that's the thing, though I do have both....that's not to say that OA isn't blinkin painful if not well treated it is just that it's not the autoimmune disease with added comorbidities that RD is. I explain as much as is needed, how much is asked of me & been thanked for doing so. My Rheumy & her team also use it.
Oh yes indeed a number of people on here already refer to it as RD and I fully support it.
I have tolerated the snide remarks in work such as " Oh yes I have a touch of arthritis too"---they haven't got a clue have they?
Only last week my line manager said "Mary Berry has what you have and she still cooks on tv"--what a dipstick !!! (Team leader not Mary Berry)
I rest my case.......
Crusee
XX
Ask the person do they have ra/rd Crusee and then tell them what you go through everyday and what drugs you take. Mind you i don't much of that and if they they did they would soon be told the difference darling.xxxx
If she was meaning or mistaking it with OA I'm not sure she's even right about that, I'm pretty sure it's having polio as a child that affected her back, arm & hands.
NMH
I regoogled Mary Berry yesterday and you're right she did have polio as a child which affected all those parts.
I will save that little gem of info to impart to my line manager when I meet her again soon.
Thanks for the info.
Crusee
XX
There you go! She may have OA as well given her age I don't know but that's the reason for the curvature of her back & left hand thumb being as they are. x
I can relate to Crusee. After a day pushing a client around in a wheelchair, I was asked to do so again the next day. I said that my hands and wrists were still sore but would be happy to do other tasks. The Team Leader said ' oh don't be silly , today's a new day!!! 😤
Imagine if we could go to bed and wake up cured.....
Trouble with the word disease is people then think you have something that's catching and they screw their faces up and look at you as if you are unclean or something. That's been my experience. There is just not enough awareness still out there.
If they are going to change the name autoimmune should be in the title to clarify what this disease all about.xxxxx
I often use 'inflammatory arthritis' as many people have not heard it referred to as such and don't jump to the same conclusion as when I say rheumatoid. When you say rheumatoid many answer - Oh yes I got a bit of rheumatism in my finger etc/granny had that. Farm
I tried calling it Rheumatoid Disease,but the response wasn't much better. "Ah, rheumatism. Do you find it's worse after gardening?" Depending on the situation, I call it "an auto-immune disease" . If I do say Rheumatoid Arthritis, I try to find the opportunity to explain that RA is substantially different from OA. Telling people that young children can have it seems to help.
I totally agree, everyone thinks it's osteoarthritis no one realises the difference and when you try to tell them they think your making it up. No one knows about RA and the effect it has on the lives of the people suffering from it. It really should be called something I Nguyen different to shoe that it is an autoimmune disease.
I use the "I have an auto-immune condition" - answer "What's that then?" or blank look and turn away. IF it's the first then I can briefly explain and see light dawn, if it's the latter, then at least I'm spared the "Have you tried a copper bracelet?" !!!!
I've been on this site for quite some time now and every few months this same topic pops up but no matter how infuriating sufferers are about how their disease is minamilised nothing is ever done about it and I've come to except that it never will. Sorry but that's just the way it is. Seems that for RD to be used instead of RA would require a huge amount of money that it is argued would be much better used on research and treatment. They may have a point but I understand completely the blood boiling reaction many of us experience when we are told about Granny's sore knees.....and I'm not deminishing the fact that Granny has Austio arthritis and is no doubt in pain but it is not the same as RD. All we want is acknowledgment, that all.
I totally agree with you Jean...this subject will go round in circles until sometcmajor awareness is done and unfortunately that seems unlikely...we shall continue to fight our corner however with this very misunderstood condition!
I know exactly what you mean and I agree it should be called R disease people do not know what RA is all about, good luck
I find that saying I need low levels of chemotherapy drugs helps some people understand the severity. People are distinctly odd, though. The idea of a disease that isn't real to them unless the treatment is appalling.
Beautiful plumage, though.
Bats (the batty)
Hear, hear!!!!
It is awful that we have to explain ourselves to people all the time. I have started handing the little card I got from NRAS to anyone who asks it shuts them up completely. It explains about the disease.
For anyone who's interested this is what Saskia's referring to nras.org.uk/publications/wh...
Yes! It can be so annoying - but over 40 years I've learned to smile and ignore (along with all the miracle cures/diets!! ) During the agonies of crippling pain and emotional stress when first diagnosed (aged 24) I was told by a work colleague that I "just needed to take more exercise, it can't possibly be arthritis at your age."
People's kindness
Good pain threshold -what is it ?
Rant
Will they change my biologics?
Brave? I wish!
