Making Others Believe About RA

I spent a lot of time with my cousin, a nursing instructor, years ago. Around that time, my large joints were rapidly failing. Five of my large joints (both hips, both knees and a shoulder) were all replaced while I was in my mid 40’s and it seemed like I was either needing another surgery or I was recovering from a surgery for a period of 4 years. Those joints went that fast.

Suspicions

My cousin Sherry was mighty suspicious that I had something sinister going on but kept it to herself. I was happy to believe that it was an unfortunate fluke. I worked a very physical job with special needs students. At the time I had a few labs run by my family doctor and they weren’t noteworthy.

Eventually, it got bad so I went to see an RA doctor. Finally, it took until rheumatologist number 3, a 6 hour drive away, for an anti CCP lab to get ordered. My RF factor was only slightly elevated but the anti CCP numbers were over 200. I was diagnosed with rheumatoid arthritis. By this time, my hands were incredibly painful, with knuckles that frequently looked like walnuts. An ankle soon joined the party.

A Decade Later

Now over a decade into treatment, joint damage has not stopped but has slowed down. But RA sneaks into everything and I find myself needing to see an assortment of medical providers.

Some doctors understand RA and treatment. I appreciate them. Others, though, give me a blank stare when I talk about my illness. That, or they scoff at precautions, like holding medication after getting a tooth pulled. “You can go right back on your RA medication.” No, I can’t. I was prepared with a printed copy of a message from my rheumatologist with clear instructions to hold methotrexate and Cimzia until the extraction site was almost healed over. I get so tired of explaining. I get so tired of not being believed.

I’m now seeing an ENT, a rheumatology referral, because my voice is often hoarse and very weak. This ENT does not believe that RA can cause vocal problems unless nodules are present. I firmly reminded him that I was not there for fun. I had been referred because of RA and the possibility that inflammation could close off my airway. More explanations that fall on deaf ears. After all, he’s the doctor. I am a mere patient.

Living With Not Being Believed

Then I can hear Sherry, a gifted nurse and a trusted confidant, who told me “So often you have to make doctors believe.”

Over the years I am learning to take copies of tests, trusted web site documentation, my own detailed notes and even articles from this community to appointments. I am not trying to be difficult, demanding or bossy. I simply want to be believed.