Just as important is the sense of guilt that accompanies rheumatic disease. A few years ago, I ate some Jif peanut butter contaminated with salmonella. A week later, I had to miss an advocacy conference in Washington, D.C., one of the great highlights of the year for me. I couldn’t help but feel guilty—I should have known better than to risk my health. Of course, it’s a misplaced sense of guilt, but one that hit deep nonetheless. Even with the advanced knowledge that has come through my training, I still feel as if there is some bad karma that has resulted in my weakness. When a flare comes on, my mind immediately drifts to “if only I had done this, or if only I had done that.” It makes me wonder whether I deserve what I have. What I wouldn’t give to rid myself of this burden. In those moments, I have to step back and reflect on the fact that is a matter of the balance of my cytokines, not the balance of my soul.
Finally, there is the sense of dread. I am fortunate that these flares last only a few weeks at a time. But what will happen in the future when osteoarthritis kicks in and this sort of pain and disability becomes a part of everyday life? Will the inflammation that defines my body be the source of its own demise—in the form of accelerated cardiovascular disease? I recently had my blood pressure taken and found out that I am prehypertensive. Although that may not seem like an issue, it left me crestfallen, fearing an inevitable decline. When I was being wheeled by my medical student in clinic that Friday afternoon, was that a foretaste of my future 20 years from now?
We are fortunate to live in an age of accelerating discovery when such outcomes are not preordained. That’s particularly important to me because I now have young children, and just like my father, I wonder if our family history will one day become their fate.
How Many More RDAMs?
As a rheumatologist, I recognize that we only have 30–60 minutes to talk with patients at a given time. Many practices allot even less, to maximize revenue and increase access. My experiences as both a patient with a rheumatic disease and as a rheumatologist privileged to treat those with rheumatic disease reminds me of how valuable every moment is in these interactions. We can only scratch the surface of what illness means and how pervasive the effects of rheumatologic disease are on the life of individuals and their families.
