New City, New Rheumatologist

In many ways, your quality of life with ankylosing spondylitis (AS) depends on your rheumatologist. That’s why it was nerve-wracking when I had to leave my rheumatologist of three years and hand my spine over to a brand new one.

My rheum took my pain seriously

I was living in my university town when I developed AS and saw a rheumatologist who happened to specialize in AS and gave me my official diagnosis. Unlike some other doctors I’d seen, I felt like she took my pain seriously. When the first medication she prescribed didn’t work for me, she didn’t hesitate to prescribe a different, more intensive one to ensure that my pain was kept as low as possible.

Then, COVID led me to move back home, seven hours away from my university and my rheumatologist. Luckily, my appointments became phone calls, so it didn’t matter that I was far away. I knew that I might eventually need to be seen in-person, but I didn’t mind traveling occasionally, if it meant I could keep the same rheumatologist.

After nearly two years of phone appointments and one road trip for an in-person appointment, my rheumatologist’s office suggested that I switch to a practitioner in my current city. This suggestion didn’t surprise me — I wasn’t planning to move back to my previous city, so it didn’t make sense to stay with the same rheumatologist forever. I didn’t have to search for a new doctor — my rheumatologist gave me a referral to a rheumatologist she knew.

Still, the idea made me uneasy

My well-managed pain relies on a delicate balance of several factors — one of those being my rheumatologist. If that changed, what else would change with it? Would my new rheumatologist decide to change my medications? Would they really listen to me?

My first appointment was a much shorter drive from home. I found the rheumatology wing and sat in the waiting room. Many of us with chronic illnesses have some level of medical anxiety from past bad experiences — as I waited, I braced myself for the doctor to be dismissive or otherwise hurtful and prepared myself to self-advocate. Fortunately, the receptionist and nurse were very kind, which made me feel at ease.

Then, I met my new rheumatologist

I was immediately relieved that she was a woman, because as a young woman, I find that male doctors do not always take my pain seriously. Instead of skimming my chart and asking basic questions, she asked for an in-depth history of my disease, and she actually listened. When I told her that my current treatment plan was working well, she trusted me and said that she wouldn’t change anything unless necessary.

She still wanted to get a thorough understanding of my disease activity, so she sent me for x-rays and bloodwork. She also set me up with a virtual physiotherapy appointment, because she wanted to provide me with every avenue for pain management. Overall, it seemed like my new rheumatologist wanted to check every box to ensure that I received the proper care.

She told me that our next appointment would be by phone in six months, but made it clear that if I had a bad flare-up and needed to come in-person or be seen sooner, she would schedule me in. I left the appointment feeling relieved and confident knowing that I had the support of a good rheumatologist.

I think I’ve been lucky with my rheumatologists

I know that the odds of getting two good ones in a row are low. I wish everyone else could have the same experience. Living with AS is scary and stressful as it is, so we all deserve a rheumatologist who listens to and supports us.

If I ever move cities and have to switch rheumatologists again, I will use this experience as my standard. The transition was stress-free, and it is comforting to have a good rheumatologist closer to home.