Getting Back in the Driver’s Seat With Axial Spondyloarthritis

Like many people my age, I grew up with parents and grandparents who saw doctors as the ultimate authority.

It never entered their heads to question anything a medical professional told them. They nodded, took the drugs, and lived out their prognosis as they were told they would.

Early on in my AS diagnosis I did the same

I knew the specialist who spent 11 minutes with me in that first appointment had trained for years to get where he was. I’d waited nervously for months to see him and it clearly wasn’t my place to waste his time with my own questions once we came face to face. I left with a leaflet, a prescription and a feeling I’d just been on some kind of production line. His parting words to me were: "Come back when the medication stops working."

I took the drugs, exercised as best I could through the pain, and tried to stop reading the depressing information online about progression. Initially the medication offered enough relief to sleep again and some normalcy returned to my life. But it didn’t last. The pain returned, accompanied this time by miserable digestive problems and psoriasis.

The doctor didn’t have much more to offer

He changed me to a different NSAID and added in an additional medication to protect my stomach, neither of which did much good. I wasn’t yet eligible for any higher level medication, I’d just have to tough it out.

Coming home from that second appointment marked a turning point for me. I knew the doctor wouldn’t give me a second thought until I appeared briefly in his office again. And yet here I was placing all the responsibility for managing my health in his hands.

It was the first small step in what would become one of the most important processes of my life; learning to take back my autonomy and proactively self-manage my health.

I started educating myself on every aspect of AS and joined communities online

There I tapped into the combined wisdom of wonderful people who’d been doing this for way longer than me and were often willing to answer my questions and share ideas.

In these groups I found understanding and emotional support, which took away the sense of isolation and gave me some hope. I came across new strategies and ideas on how to support my body, ease symptoms and feel optimistic about the future.

My eyes were opened up to the bigger world of people living real lives with AS

It gave me the courage to start trying different approaches for myself. Some worked well, some didn’t, but there was always something new to explore.

Bit by bit I began to get on top of my symptoms and ultimately formulated the unique plan I’m still following today. It’s a combination of various lifestyle strategies which also leans into conventional medicine as needed.

I now see a different, very supportive specialist who encourages me to keep doing whatever I’m doing as he can see it’s working well for me. He reminds me that no one knows me better than I do, and there’s no one-size-fits all with AS. He’s a big believer in what the research has repeatedly shown; empowered patients involved in their own treatment experience better health outcomes.

Two unexpected things have come from my decision to get back in the driver’s seat with this disease. Not only am I in better health than I ever could have hoped, I now have a fulfilling career supporting others to self-manage their own AS so they too can work toward better health outcomes.