What is the reason for the widespread ignorance about Rheumatoid diseases like RA (Rheumatoid Arthritis), AS (Ankylosing Spondylitis), JRA / JIA (Juvenile RA / Juvenile Idiopathic Arthritis), and PsA (Psoriatic Arthritis)?
There is plenty of good info “out there” on the web. Just search WebMD, eMedicine, Medscape, MedicineNet, Mayo Clinic, Cleveland Clinic, and any other reputable websites. And don’t forget the Arthritis Foundation.
There are lots of blogs that discuss inflammatory arthritis and autoimmune diseases – accurately.
FaceBook has several groups and pages devoted to RA, and autoimmune arthritis. Twitter has #rheum.
There are many discussion boards and fora that relate to these diseases.
So, why don’t people know about it? Why don’t they “get it?” Even some of the people I counted among my friends have demonstrated the vast “disconnect” – “Oh, you have rheumatoid arthritis? I have arthritis in my knee sometimes.” This particular disconnect is actually, I think a “mis-connect.” The person may (emphasis on **MAY**) be trying to identify with me, to develop a connection, however tenuous, with me. I would really like to think that, and I act on that thought. If I’m not too fatigued on that particular day and hour, I will go into some of the differences – not as a “one-upsmanship” kind of thing, but as a way to open up discussion between us.
But, sometimes, it really is a “one-upsmanship” kind of thing, and I have to drop the discussion and move over into another conversation.
But – why?? Why must there be the conflict – the disconnect?
I have no answer, except my own. I think it is a form of narcissism – both on my side and from their side. It becomes a question of “I’m worse off!” “NO! I’m worse off!” Once I realize I’m falling into this kind of narcissism, I try to put on the brakes and defuse the situation. I have no control over others, but I do have control over myself! So I try to exercise my control over myself by not falling into an argument with someone I care about.
In order to increase awareness, the “people” have to be willing and open to becoming more aware. That openness and willingness are absolutely necessary. So some “pre-awareness” kinds of activities need to be done. Walks, runs (yeah, like we can run!), fundraisers involving cupcakes (or other foods) with “pre-awareness” tags attached to them, candy sales — other ideas??
The true “awareness” will begin after a core group of people have been “teased.” We invite them to specific sites on the web. We put the RAWarrior’s PSA’s on TV (as well as the internet), we develop similar PSA’s for newspapers and magazines.
All these activities demands a group of workers – an organization. The question arises, can we rely on the Arthritis Foundation to support us in any meaningful way? Or are they just going to go on in their same old rut? If we want them (and I believe we absolutely NEED them), then we (as the RA “people”) have to “woo” the AF “people” – bring them along and bring them in.
Where is the disconnect? It is the name “arthritis.” It equates the diseases RA/PA/JRA/JIA with any old “arthritis.” It’s the reverse of “aspirin.” Bayer Company made the first Aspirin, and they named it “Aspirin.” But as other companies over the years began to manufacture acetylsalicylic acid, they demanded and finally paid to make the name “aspirin” generic. We need to either go backward from “generic” arthritis to specific arthritis, OR we need to rebrand our disease. Suggestions have already been made: autoimmune arthritis, autoimmune disease, rheumatoid autoimmune disease, autoimmune rheumatism etc. We, the “RA People,” need to settle, quickly, on one name. OR, maybe it’s the ACR people – whoever – that need to make that change. We can advocate for that change as we visit our rheum docs.
What will it take? Enormous effort by people who have autoimmune disease with incredible fatigue! We will HAVE to devote some time every day (some days, maybe, only 30 minutes) in an organized manner nibbling away at the problem.
Thanks to the following people:
and many others whom I do not yet know!