Off the Spectrum

I never really knew where to place myself on the spectrum of rheumatoid arthritis. When I was a small child, I didn’t know anyone else with RA so I couldn’t compare. Then later I met teenage and young adult peers with RA who always seemed to have the disease with less severity. I started to wonder where my experience fit.

Throughout the years, I suppose the evidence piled up. I encountered various people with RA and none of them with my level of joint disease. Once I saw a man at the doctor’s office with a motorized wheelchair. And I slowly realized that I’m part of a small group who has had RA for a long time with an especially aggressive form of the disease.

I think because I live every day with this disease, I lose sight of the spectrum of RA. I’m too busy managing my illness and living my life to worry about the big picture.

Then, the other night I’m watching television with my husband and see yet another ad for medication for people with “moderate to severe rheumatoid arthritis” and it hits me—I’m off the charts. I turned to my husband and said: “If they are talking about moderate to severe RA, then my arthritis must be the bat-shit crazy kind because it doesn’t compare to the people in those ads.”

I’m able to laugh and poke fun, but I’m also being serious. The ads are not made for people like me, the outliers.

Years ago I met some peers with RA grappling with the disease. I felt their discomfort and know that we didn’t become friends because my experience with RA made them afraid. Seeing me made them fear eventually needing a wheelchair, worsening joint deformities and the difficulty of managing increasing disability.

I understand the feeling, as I fear my own disease. I also understand that portraying the real pain and challenges of RA in advertising probably wouldn’t help sell medications that are aimed at making people feel better. The ad must show hope of improvement and recovery. I get it.

But I also more clearly recognize that my RA doesn’t belong on the usual spectrum of understanding—that I am truly off the charts in unmapped territory.

It helps me to laugh at my RA, to ridicule what I cannot control. I do have times when I feel sorry for myself and need a jolt out of that thinking, because it leads down the road to helplessness and resignation. Calling out my disease and noting the differences between the idealized reality of advertising and my true experience of the disease helps to steady myself.

What does it mean to be off the spectrum? For me, it means that my disease is not represented in ads. It means that my doctors are making it up with me as we go along. My RA doesn’t respond well to medications and bestows various complications in its wake. So each visit we’re just trying to navigate a path where no clear direction is given.

My hope is that my journey can help other RA patients find their way, hopefully with less joint damage and pain.