There is a common wistful thinking among children who either dream or wish or even believe that they are secret offspring of royalty or rock stars or perhaps anyone who is cooler, richer, and/or more attractive than their real parents. It’s the “how can parents as boring/broke/mean like mine have a child as cool/beautiful as me” syndrome.
In the RA world, there is a similar contingent of people. We’re the RA negative group and the group whose labs come back solidly normal/perfect every time. We’re the ones where there is no hard evidence from a diagnostic tool aspect that we are anything but healthy. At the back of our beady little minds (or at least MY beady little mind), there is the haunting question of, “What if I really DON’T have RA? What if I have something else?”
My current rheumatologist didn’t diagnose me. I changed after I got fed up with the office practices of my original doctor and switched. I haven’t looked back, nor have I looked further.
So today was my regular follow-up visit and I asked the $64,000 Question. (For those of you who are younger than ancient, decades before “Do You Want to be a Millionaire”, there was a similar program called the $64,000 Question. Same concept, different pay scale for a different time.)
The question was, as she didn’t diagnose me, after treating me for more than four years, would she give the same diagnosis of sero-negative RA — particularly in light of all my tests being normal?
She explained that during her fellowship training, she worked with a senior physician who impressed upon her that labs and other tests are fine, but they’re just a piece of the overall puzzle. It’s important to spend time with patients and listen to them. Doctors must learn about the patient’s experiences with the disease — both mentally and physically. If a patient doesn’t feel like they’re doing well with a treatment, then they probably aren’t, regardless of tests. And that’s what she does.
In answer to my question, she pointed out that when I’ve been on the biologics I’ve felt better. When I’ve gone off (either by choice or because of surgery), I had issues with joint swelling, pain, stiffness, etc. After four years of observing this pattern and listening to me describe my symptoms (and my feelings about them), she said that she was very comfortable with a diagnosis of inflammatory polyarthritis. Is that the same thing as my original diagnosis of sero-negative RA? In the strictest sense, probably not, but the symptoms are similar and the treatment is basically the same.
And because she listens to me, I have confidence in her, and I feel confident that my treatment is in good hands. I no longer feel like I’m really the secret descendant of royalty. I feel like I’m where I’m supposed to be.
To me, confidence in your health care providers is a key component of anyone’s well-being. For anyone with a chronic illness — it’s critical. If you have anything less than that, then I would encourage you to investigate further. It’s in your own best interests to do so.
Thanks for checking in.