A woman sits with a doctor who is showing her a prescription while she daydreams about pursuing a different rheumatologist for her axial spondyloarthritis.

I Switched Rheumatologists — Here's Why

When I walked into my first rheumatologist's office at the prestigious NYU Langone Health I really believed that I would find clarity (and, if my axial spondyloarthritis was confirmed and diagnosed) and maybe even inspiration or guidance for the future.

My rheumatologist: "you have no choice"

When I walked in, my doctor's bedside manner left a lot to be wanted. He cracked a few jokes to make me feel at ease — but people and patients aren't stupid. I could tell his humor was an attempt to settle me, but he didn't afford me the profundity or respect that I believe the moment deserved.

He did the blood work (HLA-B27 positive), a spine assessment, the X-ray, he looked at my family history (my dad and aunt both have AS), my history of uveitis, and he walked into the room and said, "I definitely think you have AS. Let's start you on Humira."

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When I told him I was scared of taking the medication, he said simply, "You really have no choice."

What about my other options?

There was no talk of my diet, exercise routines, or other lifestyle factors. No talk of other medication options. I was stunned, but at the same time, I wasn't surprised. I'd heard from dozens of friends that their doctors were also all about prescriptions and not conversations.

Sure, he may have patients come and go all day — probably rushed and in and out rapidly so they could bill for each and every one of us — but it wasn't a run-of-the-mill day for me. I'd dealt with years of uveitis, burgeoning pain, loss of mobility, and fatigue. I was slowly changing into someone who was sick, someone who had to make major life changes in order to keep up with my body's need to destroy itself. Was it so much to ask for a doctor who could at least feign some interest?

I should have advocated more for myself

I wasn't aware enough then to really advocate for myself. If I could go back in time, I'd ask all about AS, treatments, risks, and potential exercises or foods that could help mitigate disease progression. I'd ask about resources, support groups, what the literature is saying. I'd ask about up-to-date information. I'd ask every question I thought of. I'd write them down and make sure to leave with the answers.

But I looked elsewhere

After that experience, I sought a second opinion — not just to prove I had AS (I had no doubts about that), but to see what another doctor thought about my disease management route. In NYC, we're lucky to have the option to see other rheumatologists. I also had decent insurance at the time (I don't now), so I was privileged to have that option.

And it paid off

I saw another rheumatologist — this time a woman — at another major hospital: The Hospital for Special Surgery. Her demeanor, her team, her bedside manner — all of it was better. She took the time to get to know me, answered my questions, and had her team work with me to evaluate my needs. She said I should start Humira too, and I did. Her wonderful team coached me through tears as I learned how to inject myself. (I later went off of it for various reasons, including the fact that it didn't work and it made me get sick — although I'm not opposed to biologics in the future). This doctor also answers my questions via email and is communicative in a way that I appreciate. She's honest, clarifying, and takes her time.

It was really important to me to have a doctor that made me feel someone had my back. A doctor that didn't seem like I was just a number. Now, I realize no rheumatologist is going to be perfect. They're humans, after all, but if your intuition tells you something — listen. I am glad I did.

What changes have you made in managing your AxSpA?
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