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An Identity Crisis for RA
A few suggestions to bring rheumatic disease the recognition and respect it deserves
by R. Franklin Adams, MD
Despite the numerous advances in treating rheumatic diseases over the past few decades, a major communication gap still exists in the community regarding the complexity and gravity of rheumatic diseases. The reality is that, in spite of the well-intended efforts of the ACR and the Arthritis Foundation (AF), the average lay individual still has only a limited concept of what systemic, inflammatory arthritis is all about.
Who among our citizenry believes that, on any given day in the future, he or she could suddenly wake up with a dozen or so hot, swollen joints radiating intense pain throughout the body, an inflammation which might literally continue for the rest of the individual’s life? Most healthy persons don’t realize such dramatic events even happen, much less that they have a conceivable risk for it happening to them. Instead, the wrong messages continue to permeate the public’s psyche. Virtually any day of the week, you find some reference in the media to “Avoid arthritis, take vitamins, and exercise!” How offended our patients with rheumatoid arthritis (RA) must feel when they see this deceptive advertising. It’s inconceivable that patients in this day and age should be made to feel shame or guilt for “having allowed” this devastating disease to happen to their bodies! In the popular culture of the day, RA hardly merits disease status, and is very often cast commonly as a stress-induced “condition” or a vitamin deficiency.
RA is so typically out of the mainstream consciousness that, whenever healthy persons do develop an acute inflammatory disease, their instincts lead them to believe that whatever is happening to them is far removed from “arthritis.” And typically, when given a diagnosis of rheumatoid arthritis, patients tend to be nonplussed and sometimes even irate. “No, you must not understand what I’m telling you. This isn’t rheumatism, I am in excruciating pain!” And so it goes—many times over.
Lack of Public Knowledge
Unless we plan on curing these terrible illnesses in the near future, I suggest we take a serious look at how to best inform the public and the entire healthcare establishment of the incredible seriousness of rheumatic diseases, and get as far away as possible from a trivial concept of “arthritis.” Our patients should receive the best possible care and treatment from us, certainly, but they also want and deserve, as Aretha Franklin said, “R-E-S-P-E-C-T” from their family, friends, and peers. It is we professionals, not the patients, who should be making clear to the public the severe, catastrophic nature of diseases such as RA and the toll they take on society.
To the extent we have not adequately done so, we have not been fair stewards to the very patients that we have dedicated our lives to serving. We should do a better public-relations (PR) job on our patients’ behalf, and also on our profession’s behalf. Indeed, the better the job of PR we do for our patients, the more prominent our standing as a profession becomes in society—a win–win proposition.
Language Lacks Impact
Standard rheumatology terms such as “inflammatory,” “erosive,” or even “rheumatoid,” add very little special meaning or understanding to the average patient’s concept of arthritis. People tend to associate “inflammatory” with infection, and “erosive” more commonly with corrosive, as in wear-and-tear arthritis. And while it is a major medical decision for the rheumatologist to classify a patient as “rheumatoid,” to many patients, the term still sounds like “rheumatism” and not what they want—or expect—to hear.
Indeed, after explaining to a recent patient that he did have RA, I was chagrined when he looked up and said, “I’ve never heard of any arthritis hurting this bad, and now you are telling me it’s incurable. Are you guys trying to keep this stuff a secret, or something?”
Newly diagnosed RA patients don’t want to have a catastrophic diagnosis like cancer, but they do expect whatever is causing their problem to at least garner some measure of understanding and respect from their family and peers. They want to hear an explanation for their suffering that is accountable not just for their misery, but also for their inability to function and to take care of their families and their careers. Their a priori concept of “arthritis” doesn’t fit this bill. To the uninitiated, the term “arthritis,” with or without the “rheumatoid” prefix, seems inadequate and understates their problem.
At the other end of the patient spectrum is the chronic, lifelong, RA patient. I am continually impressed with the fortitude that typical longstanding rheumatoid patients display, year after year. It’s incredible how tolerant and steadfast they become in dealing with their pain and misery. Perhaps they’ve reached the point where they feel that their complaints fall on deaf ears, and this is their dignified manner of dealing with a strange curse that nobody on the outside understands or appreciates.
Thus, both RA groups are frustrated: the new-onset, acute patient is incredulous that such a terrible disease goes unappreciated and unrecognized, and the chronic patients have withdrawn into a shell and a long, endless survival mode. Aside from all the pain, RA can also prove to be quite lonely.
In sum, I believe that we have not adequately prepared the public for the potential calamity of developing RA. Regrettably, the disease has very little identity unto its own. Despite all the good efforts and intentions of the ACR and the AF, the average individual still has very little appreciation for the vast differences between the two polar opposites: osteoarthritis (OA) and RA. There is no sense of proportionality between the two, no perspective. Only those stricken with the latter quickly learn to distinguish it from the former, the hard way.
Despite the numerous advances in treating rheumatic diseases over the past few decades, a major communication gap still exists regarding the complexity and gravity of rheumatic diseases.
Confusion of nomenclature remains, in large part, for this failure of insight. Surely, at some point, we should admit mission: impossible! The current classification is simply too archaic and uninformative to expect nonprofessionals to comprehend. Its one thing to teach medical students to distinguish between OA and RA, but its quite another to expect the media or the public to “get it.” It’s past time that we should consider making changes for the sake of clarity for both our patients and the public.
Verbiage and nomenclature certainly do matter. Recently, one of my more erudite golfing buddies asked me (with only a bit of tongue in cheek), “What is it you rheuma-tologists study, phlegm?”
We must face the reality that anything with “arthritis” as part of its name is likely to be relegated to a second tier of human suffering. And, as aforementioned, adding the prefix “rheumatoid” frequently adds little additional impact or insight. Looking back, I believe humanity would have been better served had our forefathers originally designated RA as “rheumatic arthritis” rather than “rheumatoid” (i.e., rheumatic-like) to distinguish it from rheumatic fever. The “rheumatic” connotation would imply a more dynamic and potentially serious illness and would have better distinguished it from OA. “Rheumatoid” sounds indolent, retiring, and yes, more like “rheumatism.”
A Humble Suggestion
As an initial salvo towards better understanding for all, I suggest it is time for some simple, but significant, name changes. The current nomenclature is simply too arcane and misleading. We are using 18th century nomenclature for 21st century bioscience. We are dealing with catastrophic disease here, under the guise of “rheumatism.” It just doesn’t make good sense, and I feel is no longer appropriate.
Its probably too much to ask to officially change the RA title outright, but I do hereby humbly recommend that we make a small step toward clarification by officially adding the descriptive prefix of autoimmune to the RA label: ARA. “Autoimmune” is one of the few reasonably avant garde terms that has caught some viable traction in the media. An additional option would be to faze RA into the more compelling rheumatic arthritis, (which has a precedent vis-à-vis psoriatic arthritis), or even a combination of the two descriptive nouns.
These type name changes—and I’m sure there are other possibilities—could help give distinction and substance to the disease, and give due justice to those who have suffered too long with too little empathy and insight under the bland “rheumatoid” label. The important goal is to make it quite clear to the public that we are not dealing with a condition here, but a disease, a rheumatic disease, and a very serious one at that.
Empower The Public!
Whatever the nomenclature, I truly get the feeling that the general public is anxious to learn more properly what autoimmune inflammatory diseases are about, and we need not disappoint them. Specifically, the public deserves basic knowledge to understand how rheumatic diseases are inflammatory, but not infectious, and that most types have been proven to be driven by an out-of-control immune system—not “too low” immunity, but an over active, autoimmune state. Also, we should be sharing and teaching some of our key operative phrases, such as systemic inflammatory, antiinflammatory, immune mediated, drug-induced, etc. with the public as well.
Patients surely deserve to be better informed about the basic process of their disease. We can’t have patients feeling guilt or shame for their misery and their inability to function in society. To avoid this, we need to better endow them with the basic knowledge of what is happening to their bodies, and to give them the verbal tools to be able to share this information with others. And, surely, to educate them and their families that they didn’t do anything “wrong” to deserve their fate.
Ultimately, these same messages are what we need to get through to the public as well. To wit, it’s a rare occasion when one encounters a treatise that genuinely attempts to explain to the public the intricate and serious nature of autoimmune and/or inflammatory arthritis and how, once unleashed, an autoimmune rheumatic process can lead to an unrelenting downhill course of pain and auto-destruction of joints and body tissues. Consequently, if the public and the powers that be (including third-party insurers) don’t have respect for the complexity and gravity of a disease, how could they possibly have respect for the profession treating that disease? And, yes, to cut to the quick, reimbursement for treating such unheralded disease is not likely to lead the pack.
Following this same construct, I feel it was a tactical error years ago when many rheumatology charities were lumped under the heading of the Arthritis Foundation (AF). I truly believe the AF has done a remarkable job, especially working under the generic label of “arthritis.” In retrospect, society might have been better served had “rheumatic disease” been the headline cause, as opposed to “arthritis” alone. This would be analogous to the field of neurology specifying individual foundations for its epilepsy, multiple sclerosis, and muscular dystrophy drives as opposed to a single “neuro” foundation.
It’s not that I don’t have sympathy for all types of arthritis, but I believe the singular “arthritis” title conjures images other than that which we are supporting. I suspect it might be easier to arouse more support for a foundation that also included rheumatic disease, and perhaps end up with more funds to distribute among all of the various types of arthritis. And, importantly, we would be putting the “rheumatic” name front and center in the nation’s conscience.
I hereby propose that we suggest to our dedicated and peripatetic sister organization, the Arthritis Foundation, that it consider extending its official title more specifically to include systemic diseases, hence to become the Arthritis and Rheumatic Disease Foundation. I know I am treading on hallowed ground here, but in the long run, I feel this name enhancement would prove extremely beneficial to this great foundation.
On a final personal note, I would like to add that becoming a rheumatologist was the best career decision I ever made, and I’m extremely proud of the accomplishments of our specialty. Rheumatology is one of the most challenging and sophisticated of all subspecialties of medicine, and is in large part responsible for having unraveled the extreme complexities of the body’s immune system and, in turn, autoimmune rheumatic diseases. We need to share both this complexity and the seriousness of autoimmune disease with society in general and attack the ignorance head on. We owe the public more clarity and respect. There is a thin line between fear mongering and informative counseling and, as a professional society, I feel we have erred too cautiously.
We need to stand up, embrace our profession, and explain its mission better to the public: Namely, that as rheumatologists we do treat “arthritis,” but it’s not our raison d’être. We are here to we treat systemic rheumatic diseases, and the world needs to know it! [Editor’s Note: The ACR will launch a public relations campaign next month to increase awareness and understanding of rheumatology for key decision makers outside of the subspecialty. Look for more on this effort in future issues of The Rheumatologist!]
Lastly, in the twilight of a 40-year career as a clinical rheumatologist, “studying phlegm,” I do hereby declare myself, with all due respect to my peers and associates, not an I.D. or Infectious Disease specialist, but an R.D.—a Rheumatic Disease specialist—for now and forevermore.
My thanks and appreciation to my co-workers, family nurse practioners, Patricia Arangie, RN, PhD, and S. Eden-Kilgore, RN, MS; and to Frances Downing Hunter, PhD, MFA, for their comments and suggestions.
Dr. Adams is clinical associate professor of medicine at the University of Tennessee Health Science Center and a clinical rheumatologist at The Arthritis Group, P.C. in Memphis.