What’s In a Name?

Unfortunately, many RA patients know all too well the confusion of hearing, at a young age, the diagnosis of arthritis.  After educating ourselves on this unwelcome news, we then check in with friends who wonder if the doctor had any answers for us.  On sharing the devastating diagnosis with friends, we hear callous responses such as:

  • Just take an Advil; it’s not that big a deal.
  • Arthritis? Oh, my grandma has that in her pinkie!
  • You’re too young for that!

In search of a solution, some are starting to push for a name change.  Since the confusion centers on the word, “arthritis,” perhaps eliminating the offending word would also eliminate the offensive responses given by those who don’t know better.  Should rheumatoid arthritis  become known as  rheumatoid autoimmune disease or just rheumatoid disease?

To date, I’ve been inclined to keep my opinion to myself.  However, a few people have recently asked what I think about this, so I’ll weigh in.

Telling people that you have “rheumatoid disease” might avoid any confusion that arises when people hear the word “arthritis,” but it doesn’t tell them anything about what you’re dealing with.  They still don’t know what you have.

If we want people to know about our disease, then we need to tell them.  It’s quite simple to say, “My immune system is attacking things it’s not supposed to.  One symptom is that the little fluid sac which provides cushioning to joints gets inflamed.  This is quite painful and could eventually cause my fingers, wrists, and toes to be deformed.  It also affects other joints and can cause cartilage to erode, which could lead to the need for surgery for shoulder, knee, and hip replacements.  In addition to attacking joints, this disease can affect the eyes, the tendons, the lungs, the heart, the liver, the kidneys, the pancreas, the GI tract, the ears, and probably other stuff I’ve forgotten.  There is no cure, and I’ll be on medication for the rest of my life in hopes of slowing down the damage.”  This doesn’t take long to say, and tells friends what we are dealing with much more clearly than the technical name of our diagnosis.

The problem is bigger than a little confusion about the distinction between OA and RA.  What about those who have ethesitis-related arthritis?  Will there be a campaign to change the name of that disease, too?  What about systemic onset juvenile idiopathic arthritis?  What about oligoarticular juvenile arthritis?  What about polyarthritis?  There’s also psoriatic arthritisThe confusion isn’t limited to RA.  It’s widespread, and I don’t believe that a name-change is the solution.