The recalibrated compass: Finding my way after an AS diagnosis

For the first year after my diagnosis, I dreamed almost nightly of my healthier self.

In the depths of rapid eye movement sleep, I was sprinting across the soccer field, jogging down the paved roads of Central Park in New York, even shuffling my seventh-grade students through the subway as we rushed to make it to their basketball game across town. When I opened my eyes, the throbbing in my lower spine reminded me that these activities were no longer part of my life, and another kind of pain would hit me: a deep sense of loss from no longer being able to do many of the things that I loved.

I was diagnosed with axial spondyloarthritis (also known as ankylosing spondylitis) at age 26 after a last-minute X-ray revealed damage in my sacroiliac joint. This led to an MRI, which showed more evidence of long-term inflammation. After months of searching for reasons behind the pain in the palms of my hands, arches of my feet, and, most noticeably, my lower back, I felt relief at having arrived at what I thought was an answer.

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Despite starting a biologic medication, managing a new chronic illness forced me to let go of many things I loved. I quit my soccer teams and running clubs and eventually resigned from my position as a teacher. Letting go of these activities was a major manifestation of my disease — one that wasn’t talked about during my 15-minute rheumatology appointments.

With the help of a therapist, I came to understand that this heaviness was a form of grief. Since losing my mother to a rare disease in high school, I thought I knew grief well. But this was a different sense of loss; I was struggling to find direction when my sense of self had been stripped away. Sports, activity, and being constantly on the move were the primary ways by which I regulated myself. Without these things, I felt lost.

Recalibrating

There was no one I wanted to talk to about this more than my late mother, a writer and teacher, but mostly, the person I always turned to for help. On days when I’m especially missing her, I like to turn to her writing to hear her voice. One Sunday afternoon, I decided to crack open her book “Shedding Constraints,” the last piece of writing published in her name. I found myself reading the last chapter (which has since been permanently dog-eared), titled “The Recalibrated Compass.”

In it, she wrote, “The future rarely unfolds in a straightforward path. Often it’s more like a zigzag or something even more confusing. Sometimes we go forward and backward at the same time or in close succession.”

Since my diagnosis in 2021, it often seemed like I was going backward more than forward: failing medications, having surgery as the result of a treatment side effect, fighting with doctors and insurance, and losing friends who didn’t understand why I wasn’t the same. For months, it was difficult to see a way out.

With a lot of practice and patience with myself, I found ways to pivot. Though I could no longer play soccer, I started swimming and biking, and prioritized afternoon walks across the Williamsburg Bridge. I switched to a job in education that enabled me to work remotely. But the biggest change was how I allowed myself to have bad days and accept that flare-ups, pain, and overall uncertainty were part of the ride.

There are many times that my disease makes me angry. But if I’m able to take a step back, despite the stiffness that haunts my joints, I realize that my illness has empowered me to be flexible in ways I never thought possible. It has forced me to recalibrate my compass as I find new approaches to make meaning in my life.

Writing has been a huge part of my recalibration. When I write, I can create a narrative about something that often feels out of my control. This column will attempt to do just that: share pieces of my challenges, victories, and everything in between. In the process, I hope I can give you some insight into ways you can shape your own path, most likely with some zigzagging along the way.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.