Hello all, there was a bit of a rant yesterday about a subject that we all know about and have experienced.
How many times have you been asked what you have only to be told "I have that too". Or what about "yes my granny has sore knees too". My favourite is "sure we all have a bit of that somewhere". Another one is "you don't look like you have arthritis". Then there are the helpful ones who ask you if you've ever tried cod liver oil? I'm from Ireland and I was once told that if I rub 'poiten' on my joints it will cure it (poiten is Irish moonshine that is still made on remote parts of Ireland). I wonder does Rheumatoid Research know about that one??
I could go on and on and I know for a fact that everyone of you could add to the never ending list of ignorant, unhelpful, sometimes caring, uneducated and down right hateful people that we have to deal with on a daily basis.......as if we didn't have enough to cope with!!
Dealing with these people can cause a lot of stress, can hurt emotionally and then there is that deep seated anger you feel when encountering such ignorance. We shouldn't have to put up with this as well as constant pain, disfigurement, stress, financial worries, family, children, keeping a home..............
Not too long ago I was looking for more information online about Rheumatoid arthritis when I came across a site from America called Rheumatoid Warrior. I immediately noticed that arthritis was a word that was very rearly used. In fact they made a point of not using it. Their mantra was that they had a disease called Rheumatoid Disease, full stop!
The group lobbied consultants, researchers, health insurance company's, local health authorities, GP's and anyone else who would listen to drop the word arthritis from the official name. They have succeeded in getting the top research group to rename the condition Rheumatoid Disease.
What they maintain is that we don't have arthritis, we have an auto immune disease. We don't have wear and tear, we don't have carpool tunnel, we have Rheumatoid Disease. Which is a different condition entirely. Before I go on I don't want to minimise what people with arthritis suffer and our hearts go out to them in their suffering but the two conditions are completely different and grouping conditions does no one any benefit.
I had a few welcome responses from the small introduction I made yesterday about this issue. I am hoping that more will get on board and that that we make a start here on NRAS and get the word out. If we start here and work onwards we might make a difference. From now on when your asked what is wrong with you.....tell them that you have Rheumatoid Disease, don't even mention arthritis because you don't have arthritis! Even here on this site if we stop using the word others will not use it.
Maybe I'm dreaming, am I? I was always a bit of a rebel, wanting to change things that weren't right or fair. Please post and tell me what you think.
I need to lay down now.......every time I get up on a soap box the same thing happens..... I start out all guns blazing and then slide into a heavy sleep.
Hoping to here suggestions, examples, worries, disagreements, helpful hints etc, etc, etc. XX
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jeanabelle
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That's great Phoebe, thanks for your support. I was standing looking out at my garden a minute ago and I was thinking that maybe I had lost the run of myself. But I think that if we keep at it we might just make a difference.......you know what they say about "from the tiny acorn the mighty oak tree grows"! Lets do what we can and see what happens. Thanks again. X
I totally agree with you and I am afraid every chance I get I am on my soap box discussing dropping the arthritis from the disease name. Lol.
I brought it up last week at the conference and the companies that were there , said it would cost a lot of money and confusion as most people refer to RA not RD and they would have to change logos and leaflets which would be costly. Eg even Nras would have to change their name!!
I said it could be one slowly too though eg when u change your leaflets change the name but there's loads of committees etc to go through to do hat.
But you could maybe be our British warrior and start the petition, I think you would get a lot of support! And me...I love rebels !
Good luck if u do, and don't fall asleep as u said lol
I know the challenges would be difficult but we have to start somewhere. Remember the campaign to get rid of the word spastic because of the connotations that brought up? Now I'm not saying we are the same but it can be done, very slowly but moving in the right direction and we can start here......... NO MORE RA.........IT'S RD FROM HERE ON IN WE HAVE AN AUTO AMMUN DISEASE NOT ARTHRITIS.
Now for the spanner in the works, how would you then describe others who have Auto Immune Disease, and part is stilled called Arthritis? Why not go back to the original wording of the whole lot and call it Inflammatory Arthritis/Disease, as this is what we all have, just different headings underneath the one banner. That way each and everyone of us would be covered by the same, treated by society as the same. As mentioned earlier society removed the term 'spastic' to become 'disabled' and this covers many conditions.
But then what would you call the consultants that deal with our disease Rhuematologists or Auto Immune Disease Consultants or Inflammatory Consultants. The list is endless in the changing of the word.
I feel like an outsider looking in now on this site with the current name, yet we all suffer from the same type of illness, Inflammatory Arthritis, but our conditions and branches are called different forms of the same tree.
Hello Georje, and thank you for your comments. you know I did think about people with infantile arthritis, psoriatic arthritis, juvenile arthritis and all the other conditions associated with it when i was posting and so i do take your point, unfortunately i had already sent the blog by then.
I agree that it's not an easy thing to sort out and that 'words' can be very powerful and so we have to be very careful how we use them. But it is because of the way words are used that triggered this blog. We as rheumatoid sufferers experience awful treatment from an ignorant public, some of it unintended and some not because of the inclusion of the word arthritis. It creates a mind set that is very difficult to address.
It is about informing people about exactly what it is that we have. I know how people with some forms of mental illness are treated......you don't look sick so therefore you are a malingering. I have suffered from chronic depression for the last 46 years so I know what I'm talking about.
I don't have an answer for you Georje but i do understand the predicament it places us in and it deserves to be looked at. In the mean time if we the people at the hurting end of public attitude can do something about it then I think we should, there is a lot of support for it on here. We can stop using the word arthritis when referring to our disease. We can stop referring to it as RA by using RD, we can educate other sufferers first and hope that we can influence others over time.
Thanks agin for your comments and you have introduced food for thought. X
Hi - you aren't the first person to blog on this matter so don't feel bad about the PsA and AS problems it raises. I raised it on the Arthritis Care "Living with Arthritis" site to see how people who use arthritis as the overarching name for all related conditions feel - giving a link to RA Warrior. This was over a year ago and the response was very mixed and pretty emotional. Younger sufferers of RA were the most in favour of a name change - then suggested as RAD by RA Warrior ie Rheumatoid Autoimmune Disease. The older sufferers - especially several with PsA became quite angry at the idea moving away from "old Arthur" - saying vehemently that pain is pain and all these conditions are all equally horrendous at their worst - a point I agree with.
They felt that if we divide up into our separate diseases rather than going for the overarching name then charities such as Arthritis Care and Arthritis Research will suffer. I think NRAS feel that this is probably true too - judging from their very diplomatic response last time this subject was raised on this site?
I think rebellion is so important and personally speaking. Rheumatology encompases diseases such as Lupus and Ankylosing Spondylitis too and they don't have Arthritis in their title. On the other hand I don't actually think people know any more about them than they do about RA.
But in answer to Geoje's point here are Psoriasis sites which include forums with many with PsA so people with this disease can also lobby to change their name to cut out the arthritis part if the general consensus is in favour? I think it's great that people with PsA are on this site because to me it's all one big family of autoimmunity and I include Lupus and AS in this too. Basically I think it's a case of whatever title is most politically expedient for sufferers - ie helps with funding, understanding, benefits, legal and educational issues etc. If a name changes helps to access and improve these then it should happen. But if the opposite is thought true by the major charities including Arthritis Research then probably it's best left to the individual to decide what to say about their disease.
For me personally I prefer just to tell people that I have Rheumatoid Disease - or Rheumatoid autoimmune disease and not use the word arthritis. My reason for this is that MTX and Hydroxy together gave me quite good control of the arthritis side of things although I do have OA in my hands as well as RA. I feel that arthritis isn't that relevant to me compared to secondary conditions that have come with it plus fatigue and general malaise so I don't want people to focus on arthritis for me. However, as Allanah says, I think RD still has a place under the banner of Arthritis because pain and suffering are just that and I like to see the focus on commonality as well as on the differences.
I sound like I'm hedging but I come from 3 generations of civil rights lawyers and I always play devil's advocate - especially with myself!! x
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I take your point on other sites for Psoriasis, Tilda, but having been on them and 'spoken' to them all they are interested in is their skin and not the PsA part. The talk in research is again geared towards the skin. Maybe I am too old hat having had it since birth that I do not want to continually talk about it. I have been through all the ugly mess and the way people look at you, and don't particularly want to re-visit as it was too painful mentally.
What I wanted was to speak to someone who understood what I was going through now, so when I was given Enbrel and part of that was a years sub to NRAS then I took it and 'dropped in' to see what it was all about. Part of the questions I was asked was what umbrella I came under, so assumed that it was OK to be on here. But I have felt in the last few weeks that maybe I should no longer be here, this is not the first that I have felt this, I felt this in my early days here, it has been for sometime, getting stronger as time goes on. So maybe it's time I bowed out.
This is not directed at you, Tilda, just a response in the messages that are here. You have always given me constructive advise, and been welcoming.
I can absolutely see where you r coming from George, and that is why what to " call ". an illness that has so many twists and turns and different parts of the disease is SO difficult.
I for one do recognise the difficulties in naming an illness , I do recognise the " arthritis " name and the need for it to be used , my comment was only to ponder the substitution of disease over arthritis and therefore I would hope this would cover ALL of our symptoms equally....maybe. It comes down to wording in the end though dont you think?
I think it's great people with all diseases whether they be auto immune or whatever, have a chance to just talk to each other about about how they feel. I know is said I personally dislike the wordings of the disease, but at the end of the day I don't mind the " label" as long as I get the correct care!
I do feel like you we r branches of the same tree particularly as I suffer from RA, asthma, diabetes, poly cystic ovaries syndrome, I suspect if I look at any of these sites our problem are very very similar. .
So I think we r all one big family of auto immune illness Georje and I hope the feeling that we can help each other with support will overcome any theoretical name changes to the illness, I do know what arthritis feel like, maybe I just want the "title "to reflect more than our pain? And of course this area is just discussion, it's just ideas, I prefer not to have arthritis in the title, others feel it is invaluable, thank goodness we have all of our professional bodies here to advise us, and isn't it good to have open discussions in an open forum. We don't all have to agree! But debating your point is very valuable and maybe arthritis/ disease is the way to go !
Gosh I am glad it's not a decision I have to make . I am glad this debate was sparked off , it shows me how many differing opinions we all have...and how many varied parts of the illness there is.
Have a pain free nite all.
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Don't leave Georje, not unless you really want to. I don't know for sure that I have RA ..... my Rheumy's not sure but tends to call it RA most of the time ...... the Rheumy nurse thinks it's some other inflammatory thing .... for 2 & a half years I've been mumbling 'Inflammatory Arthritis, probably Rheumatoid, might not be ....' when people ask me what's wrong. I've looked at other sites but this one works best for me.
Even people with a very certain diagnosis of RA can have very different symptoms & experiences. But overall those of us with inflammatory arthritis have a great deal in common & one of the most obvious common experiences is taking DMARDs or Biologics.
I think it would be a shame for us to go down the road of nitpicking about who should or shouldn't be here ..... I've hardly ever read a post that didn't seem to belong here (apart from the occasional person trying to flog some expensive miracle cure). You fit just fine, it seems to me.
Luce x
I think that this site would be much poorer without contributors such as yourself, Rattsarattus and Andy so I would really urge you not to leave. But of course it's got to be somewhere you feel welcome so if you don't then I understand Georje. I prefer to focus on the commonalities - especially because I think our diagnosis can change or shift and if you've built up a raport with people on a site then it would be so sad to give it all up. I am a member of the National Psoriasis Foundation forum because I feel I want to know more just in case my old eczema turns out to be linked with psoriasis. I hate reading posts on it mostly - although it was useful re my scalp. As you describe I find skin diseases so depressing - having suffered so badly as a kid and throughout adulthood until recently - so I completely see where you are coming from.
But returning to the subject of this blog - I also don't think that a name change would impact negatively on PsA sufferers or make your presence on this site any less valid? Jeanabelle is just opening the door for debate here and that's a good thing. There are pros and cons and reasons behind the name Rheumatoid Arthritis. Personally I think this disease is actually many different autoimmune diseases because that's what my consultant told me he believes. I think people are ignorant until these autoimmune diseases impact on them personally - whether through a friend or relative or acquiring one themselves. I now know a lot more about Crohns, MS and Lupus now from researching my own problems - but as I've said I don't think many people know much about them at all. Cancer is till the main enemy people fear and fund raise for and expend huge energies on and I'm not convinced that an official name change for RA would actually make things any easier for us overall. But I could be wrong about this of course so keep an open mind. Tilda x
I agree that I don,t like the word arthritis because of people's responses. I hope that the RA awareness week at the end of June will help to change people's ideas. I also feel that weather you have RA, PsA etc it does not matter what label you are given we all suffer similar problems to varying degrees over time and I started being told that I had RA then PsA but with no skin problems, now my lastest letter last month, sero-negative inflammatory arthritis.
George, from the very start of myself being diagnosed,you have always given me solid grounded advice,helped me with some questions I have asked,and on a lighter note we have discussed our cruise holidays.i for one would be very sad to see you go,so please don't.i value your presence here.it doesn't matter now what we all have,at the end of the day,we are all suffering with something.we don't need titles or labels,all we need sometimes are friends .thanks again for your support love michelle xxx
My own experience is that my Rheumy has always called my disease as being Inflammatory Arthritis, which makes a distinction from OA. I do like having "Auto Immune" in the name as this is the source of the problem. Therefore having a name such as: Rheumatoid autoimmune disease seems to be the best fit. Again, this is just a personal opinion!
Thanks for your comment. It seems that I have disturbed a hornets nest with the introduction. I will have to think about what this all means. When dealing with people, especially when these people are in pain and daily distressed by their condition and how we respond to them, we need to tread lightly.
Of course it is your disease and you have the right to refer to it and deal with it in anyway that suits you and I have no problem with that in any way at all. On this site we are all in it together and we gain much from other sufferers experiences, of that there is no doubt.
The meaning seems to be in the words.......which is were we started, the words that hurt and insinuate a meaning that is causing alot of distress.
An excellent idea, as no one pays any attention when they hear "arthritis". After all, we see a rheumatologist, not an "arthritologist". (Yeah, I made that up!). Anyway, I will begin using the new phrase here in the US and see how people respond.
Thank you Linde, I think that anything that helps has to be welcomed. If you use a term that suits you then we have succeeded in helping to get through your day with just a wee bit more ease and peace of mind. The last thing we need is an inquisition about the disease we suffer from.
Arthritis has been attached to rheumatoid disease for so long now that the two have become as one......and we are left to fill in the spaces in between the two, not a very pleasant task when you are asked to explain yourself!!
Thanks again for your comment and I hope you are well. Jean xx
Amen! we have all heard ,,,been told so much ,,,,those people cant & dont understand how we are feeling living with RA ,,,,some of those i come across anoy me so much ,,i wish i could swop bodies with them for afew weeks ,,,then they would truely understand ! kind regards x
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