What “RD” Means to Me
The first time I came across the term “Rheumatoid Disease,” which was in an article from RheumatoidArthritis.net contributor Wren Vandever, I did a double take. “What is Rheumatoid Disease?” I wondered. As there are over 200 different types of arthritis, with osteoarthritis by far the most common (affecting approximately 27 million Americans), and Gout (6.1 million Americans) and Rheumatoid Arthritis (1.3 million Americans) the second and third most prevalent types, I thought perhaps “Rheumatoid Disease” was one of the lesser known forms of arthritis. I also considered that it might be a general term used to refer to all rheumatic diseases. An internet search led me to the understanding that “Rheumatoid Disease” is the preferred term among some activists, such as our talented Wren, who are working to promote greater understanding of Rheumatoid Arthritis.
The term “Rheumatoid Arthritis” is rife with misconceptions. Most people immediately think of osteoarthritis when they hear the word “arthritis,” and assume RA is the same thing. Osteoarthritis is caused by wear and tear to joints, whereas RA is an autoimmune condition. Although both diseases involve pain and inflammation in joints that can be serious enough to require surgery, when it comes to causation and treatment RA actually has more in common with other autoimmune conditions such as Type I Diabetes, Crohn’s Disease, and Multiple Sclerosis. Like those diseases, RA can impact young people, there is no cure, and the symptoms can be life threatening.
I was diagnosed with Rheumatoid Arthritis 15 years ago when I was a 22-year-old senior in college. Since then, I have tried over a dozen medications, and am currently taking four maintenance prescription drugs with an additional three that I take on an as-needed basis. One of my maintenance medications, Orencia, is delivered intraveneously, meaning that I have to be hooked up to an IV every four weeks. Several of these medications are immunosuppressants, making me more susceptible to viral and bacterial infections. The RA symptoms I experience fluctuate, and at times have been so severe that I’ve had to take extended sick leave from work. This disease has had a huge impact on my life, far surpassing what most people would associate with the term “arthritis.”
This is evidenced by the comments I often hear after sharing that I have Rheumatoid Arthritis, such as, “Yeah, I’ve got that in my elbow from playing tennis.” While I never want to minimize anyone else’s discomfort, I don’t think the level of pain I experience throughout my body, the crushing fatigue, the enormous cost of expensive, sophisticated medications, and the potential impacts this degenerative disease might have on my joints, muscles, tendons, and even organs can be compared to a case of tennis elbow.
This is exactly the reason why many proponents of a name change think that “Rheumatoid Disease” more adequately reflects the severity of the condition than “Rheumatoid Arthritis.” While the average person may still not know what “rheumatoid” means (before my own diagnosis I was perplexed at what “rheumatism” was exactly, as it kept striking the older characters in the classic British novels I loved to read), the word “disease” automatically connotes a level of severity that “arthritis” may not. When I hear the word “disease,” I think of a chronic condition that requires treatment and may be very serious. If we replaced “Rheumatoid Arthritis” with “Rheumatoid Disease,” the general public might be thinking along those lines instead of immediately thinking of elderly people or sports injuries.
There are times when RA can be so severe that individuals are required to use wheelchairs or walking aids, or may require joint replacements or other surgeries and procedures, or may be rendered unable to work temporarily or permanently. Even when symptoms are more moderate, those of us with this condition often struggle with chronic pain, inflammation, and fatigue that make getting through a typical day challenging. I think coworkers, supervisors, friends, acquaintances, and family members might have an easier time wrapping their heads around our need to reschedule or cancel plans, use accommodations in the work place, take a seat at events where others are standing, etc. if the term “Rheumatoid Disease” was used in explaining our needs. A switch from “RA” to “RD” could lead to increased awareness and sensitivity to the complex challenges faced by those of us living with this disease.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?