We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Disease (RD)
Three years ago, I saw Rheumatoid Arthritis (RA) patients insisting that the name of the disease needed to be changed. They argued that until the “a” word is removed from the name, confusion about the disease will continue. When asked, I said that we could not wait around for that to happen; let’s work for awareness right now whatever the name is. And I did.
It seemed that changing the name of a disease is a decision that’s not in the realm of patients. We can’t do that. It’s a job for organizations. With money. Who already control things. Which are not working well for patients… hm.
What changed my mind?
1) You did.
Spending > 60 hours a week communicating with other people with Rheumatoid disease impacted converted me.
Without my encouragement, people continued to press the idea that the name change is necessary. There’s no way I could count how many people have told me that they see a name change as a key part of the awareness solution. I’m certain it’s a vast majority.
For a smile, click to see Nancy and I discussing how Rheumatoid Arthritis could become Rheumatoid Disease – and my talking with Tanya and Valeska about creating a foundation for Rheumatoid that would be the “RA foundation” people have dreamed of – and a few days later, Julie encouraging people to use RD instead of RA.
2) The facts convinced me.
The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.
As I objectively studied the problem, I pulled apart threads like tangled yarn. Examining the origins of the confusion about Rheumatoid disease leads to clear conclusions about what must be done to correct it. The word “arthritis” is one unambiguous thread. My learning process included writing > 600 articles for this site and other publications. For a quick overview, click here to see the list of 57 articles labeled Rheumatoid Arthritis Awareness.
3) An RA / RD foundation: the Rheumatoid Patient Foundation.
A few say we must first spend our energy convincing other organizations that they must change their ideals or goals to align with those of Rheumatoid patients and give us what we need. Do people with other conditions or causes wait to be given whatever change they need? No, they demand it.
A year ago, we created the Rheumatoid Patient Foundation which represents Rheumatoid patients themselves. Momentum was tremendous during our first year and people are eagerly telling us they want to help more! That support will only grow as people learn of the tremendous plans the Board of Directors has for the coming year. You are wanted and welcome to join us! Click here to read how to play a part right now!
More support for the name change of Rheumatoid Arthritis
While I could list links to comments, and quote emails and blogs advocating the name change all day long, I urge you to read about a rheumatologist’s plea to change the name of RA, Response to An Identity Crisis for RA by Dr. R. Franklin Adams. OK, here’s just one more remark supporting changing RA to RD from e-Patient Dave deBronkart with an important point of grammar!
What’s next for RD?
The RPF is bringing fantastic ways to make impact with the name change and for you to help make a difference! Please follow the RPF now by clicking here and here so you will not miss anything! We can all participate in creating the awareness of Rheumatoid Disease / Rheumatoid Arthritis that we’ve all longed for. You’ll be able to join in incredible events coming up including a video contest, RD petition, and more!
Recommended reading:
- Hear My RA Interview on KISS FM!
- What Can We Do About the Rheumatoid Arthritis Awareness Problem?
- Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
- Use the RA Info button for accurate awareness: Rheumatoid Arthritis (RA) Information
- Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
I’m the co-leader for a team called “Living With Rheumatoid Arthritis” on http://www.sparkpeople.com and the word arthritis in this autoimmune disease is a big problem for most of us on the team. That said, I just changed the name of our team to Rheumatoid Autoimmune Disease and posted a link to your blog about why I made the change. We have almost 1100 members on our team so I hope this helps with more people making the change.
Thanks for being so proactive and sharing your ideas with the rest of us with RAD.
MUCHmore on this soon Joanna. I’m pressed very hard for time as I said above. Please print out the link to the pdf in the link above & post that when you post the discussion w/ the blog link. Thanks for extending the discussion & we will definitely win this battle. Way to go for your boldness & I look forward to seeing more of what you’re doing.
I agree completely with the move to rename RA to Rheumatoid Autoimmune Disease. RA is so much more than just joint pain and unless you have RA yourself no one thinks that you have anything more than the pain of osteo arthitis. ( as in so I’ve got that too and I just don’t let it get me down) AARGH.
Thanks so much for bringing this to everyone’s attention!
Dear Molly thank you for your comments & please see my comments above to Joanna & Christil.
Thanks for your reply Kelly – especially under your current health circs and being robbed – sounds awful, poor you. I was only relaying the gist of a lot of responses I got from the Arthritis Care “Living with Arthritis” forum. I don’t generally use this forum a lot because there are so many users with so many types of arthritis that I lose track of who’s who and who has what. I just want people who can tell me more about RA which is new enough and big enough for me to deal with without having to get my head round all the other types of inflammatory arthritis and OA too. The NRAS site is great and there are a couple of contributors from the States currently – which enriches the discussion no end.
I don’t take the “pain is pain and arthritis is arthritis whatever type you have” view at all. I have only had RA for a year now, have it relatively mildly and am doing well with 15mgs of MTX so far – so I know luck when I’m staring it in the face.
But I do feel passionately about changing the way it’s perceived now I know so much more about it myself and I get really fed up with people saying “oh you look too young for that” etc. I will educate when I’ve time and inclination but I do curse the A word to a large degree because this disease is systemic and from my persepective it could be as bad for a person to be told that they have RA as to be told that they have cancer – depending on the nature of the cancer and the presentation of the RA of course.
We are expected to swallow some of the same immunosuppressant (sp?) drugs – albeit at a smaller dose – but for a much longer time in all likelihood. So why are we so frequently met with a shrug if we tell people we have RA and yet if we told them we had cancer they would look shocked, startled, worried, fearful, and most importantly sympathetic?! Sorry rant over.
I haven’t the time in the day to keep up with your site always as well as the UK ones although I try to read as many of your blogs as I can. But I think you are absolutely fabulous and when I do I almost always feel empowered. Many thanks.
Christil x
Thanks, Christil. Youve brilliantly expressed some of the most critical issues. I’m glad to have you fighting alongside!
It’s always good to hear “the meds are working” and I hope it continues & suppresses every kind of issue. It’s interesting you point out the long term chemo – I’ve begun tweeting, #WeeklyChemoForever as another way of helping strangers go “huh?” and maybe scratch their heads. Sure the rituxan, mtx, or whatever is a lower dose, but it’s also a permanent diet! No one but my kids seems to act like I’m sick most of the time, except other people with RA – who of course have an idea that just becuase I don’t mention it doesn’t mean I’m doing well.
Please do stay tuned when you have time. And we’d love to see your input in our rheum4us.org forum when it opens SOON.
Ten days later – that’s how long it takes me to get back to you Kelly I’m sorry. And thanks for your enthusiasm about my line of action.
Yes I think the MTX is working for me – but then again it might be all the exercise I make myself do daily (Nintendo Wii Fit and dog walking). Sometimes I think it’s all been a big mistake and it was just menopause or thyroid problems because I’m vaguely sero negative (a low positive RF) and other times I think the RAD is gnawing away at my joints quite delicately and that’s what’s causing the low level aches and pains in almost every joint just now. Perhaps the MTX is just keeping a half lid on it all.
It’s very confusing and the good old NHS leaves me in limbo most of the time because where i live (a group of islands off Scotland) there are no rheumy nurses, no experts, and the rheumy has shelved my planned appointment for a backlog of people who never got seen in January. So it’s just me on my own rooting around for answers, still wondering whether the disease is eating me alive very slowly or whether I was misdiagnosed by that time-pushed rheumy. But then that doesn’t explain why both my pinkies are sticking out of the side of my hands at a funny angle these days? Ah well I’ve lectured at least 3 people on why RA isn’t just arthritis in the past week so that’s something at least!
Hope you’ve had a better few days and yes I’ll look out for your forum. Take care, Christil
Unless a person knows what RA really is, do you know how many times I am confused with a patient that says to me,”oh it’s not that bad I have arthritis too” but they’re referring to osteoarthritis not rheumatoid arthritis. I suffer from both along with fibromyalgia and I agree,that we who suffer with this disease should fight to have the name updated.
We live in a world of pain. Not just our hands and feet, but joints,muscles,lungs,fatigue, and the list goes on. I hope that with enough of voices and signatures we can be successful.
I absolutely agree that Rheumatoid Arthritis is a total misnomer. Nobody understands (although everyone thinks they do). I 100% support the name change to Rheumatoid Autoimmune Disease (RAD!) and think it will make a big difference in how people view and understand this condition.
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I strongly agree the name should be changed to RAD. I have just been diagnosed with RA and have had the symptoms for 2 years. Thanks for the info and the helpful sit. Keep up the great work!
I’ve been in the dark about the name change it will be so nice now to explain I have RAD instead of telling people I have RA It was getting really old explaining that RA isn’t your typical Arthritis that one gets as we age but that it is an Autoimmune Disease So tired of listenign to people tell me I was to young to have Arthritis now maybe peopel will understand.
I was diagnosed at 22 and people seem to think they have the same thing as I do. Every time I see my uncle(who has arthritis) he tries to tell me how to “cure” my RA. Drink cherry juice, tense up your muscles as an exercise, eat less red meat. All things that I’m sure help his arthritis but I have found nothing to prove that will help RA. I love peoples advice and I take it into consideration. But I have told him before that it as an immune disease and he still sees the “arthritis” title and wants to help “cure me”. I LOVE the idea of changing the name!
I completely agree that the name must be changed! The name must better reflect the systemic nature of this disease! There is so much confusion in the pubic about what this actually entails. That same confusion leads to all the “helpful” comments people love to give like “just us a heating pad” “that’s all my grandma does” “Just go gluten-free” “That works!” “have you tried xxx?”
We’ve tried it ALL, people!!!
Perhaps changing the name and increasing awareness will reduce the confusion and then we can have real discussions about our pain, fears, and hopes!
How about all the commercials for RA meds?
I’m just putting it out here!
If I see one more ad with a supposed RA-ridden person smiling as they go about their day, I will scream!!!
This further contributes to the confusion. We need there to be real people with the real disease talking about the ambivilence of choosing a medication that is truly a poison to try to have some semblence of a life. A person who knows how difficult those decisions are, to let someone poke you for an IV medication that can kill you, who know how hard it is to talk to your kids about these things..Someone who can barely move about, someone who isn’t smiling while they are in pain, or riding a bike! I’m sure that most of us can’t do those things even on a “good day”! We need the truth, no matter how difficult it is to see! Then we can have real support!
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Well, it’s 2015 and sad to say we still see no progress on this front. I keep searching for petitions to sign but they are all closed to new signatures. I wish there was a bigger push for this. Nothing irkes me more than the line “RA is a more severe form of arthritis,” um NO IT IS NOT! As you so clearly said, arthritis is one of many components of RD. I have early onset but debilitating RA/RD, but no arthritis! This disease has turned my entire life upside down in a matter of two years and I just want to scream. We NEED to get the damn disease name changed!!!
Carolyn, can you contact me soemtime about this? kelly @ rawarrior.com
I’m about 4 months into a whirlwind romance. We’ve already grown insanely close. Anyhow, my wife to be, has a severe case of RA.
Admittedly, before we met, my best guess at what RA was, was a different form of OA. I just thought they varied slightly and thought both were considered fairly mild conditions.
I was surprised to learn RA was a full blown chronic disease that can cripple, amongst a whole other host of symptoms.
After I learned a bit, it became blatantly obvious that the name Rheumatoid Arthritis is a problem. When you reduce awareness you reduce funding, research, resources etc. And having arthritis in the name is misleading.
Like addiction, once they decided to call it a “disease”, help for addicts increased immensly. It started a small movement. The same thing needs to happen for Rheumatoid Disease!
That’s what I shall call it from this day forward. It’s such a complicated disease. It not only needs to change to help improve funding/research, but sufferers of this disease need their pain to be known to the world! It’s not fair to be swept under the rug, where auto immune disorders like MS, diabetes, and lupus are among the most researched diseases. Nobody questions the severity of them. I swear it has a LOT to do with arthritis in the name.
Best of luck to you and your wife to be. How blessed she is that you are concerned enough to read and comment.
HOw can i help get the name changed and raise awareness?
I have rhuematoid disease. It is severe and it isn’t arthritis.
Dear Cheryl,
There are steps to take printed out in my new book on rheumatoid disease, RA Unmasked. Over the next year, we’ll be talking about these here on the blog.
I completely agree with Carolyn – I found this page when Googling for a petition to sign. From the comments I gather that this is a UK-based site? Have NRAS not got anything to say about a name change?