The 15 Year Diagnosis Journey I Didn’t Know I Was On
Fifteen-ish years. That’s how long my diagnosis journey lasted. But I’d be lying if I said I knew I was on a journey toward a diagnosis that entire time.
It was only in retrospect, after I had some semblance of an understanding of my condition, that I was able to piece the true length and arch of this journey together. And only once I finally began to cope with my diagnosis and assemble my diagnosis journey did I realize the significance of the diagnosis story. In a way, a diagnosis story is much like an origin story because ankylosing spondylitis now affects every facet of my life and many of the choices that I make.
High school back and joint pain
It all started during high school, which seems like another lifetime ago. At some point, I started getting back pain and stiffness, but I blamed it on soccer or basketball. I had trouble sitting in the hard, unsupported desk chairs at school, and at night I would have trouble falling asleep from back pain.
Then, during my junior year of high school, I suffered two weeks of intense joint pain and weakness in my knee (something I still experience today), with no injury to blame. The knee pain kept me on the bench in the middle of basketball season, sporting a fabric knee brace that provided just enough support for me to walk from the locker room to the gym. According to my school’s athletic trainer, I suffered from a lack of muscle around my knee.
The back pain continued as well. During my senior year of high school, my mom took me to a chiropractor. When I think about it, I can still summon the excruciating pain from when the chiropractor tried and tried and then was finally able to pop my back. Needless to say, I now have a lingering distrust of chiropractic treatment methods.
The doctor dismissals of my early 20s
My 20s were a decade of frustrating encounters with medical professionals. I suffered moderate to severe back pain from years of working on my feet, and constantly self-medicated with NSAIDs. On several occasions, I sought out advice from my physician, only to be told one of three things:
You’re too young to have back problems.
Your lower back pain is due to your poor posture.
You strained a muscle. You’ll feel better after a few days of ice and rest.
These were the doctor dismissals of my 20s. Even when the back pain landed me in the emergency room on several occasions, I left with the above advice, along with a side of prescription pain medication. No one took back pain seriously in a relatively fit and active 24-year-old woman.
At some point, I began listening to that collective, expert medical voice telling me that nothing was wrong. I believed that everyone had aches and pains, and that my back pain was nothing out-of-the-ordinary.
A rheumatologist referral and spondyloarthritis diagnosis
Finally, the year I turned 30, I received my first referral to a rheumatologist. I was in the most stressful year of my Ph.D. program when both my right hand and my right knee began to swell. With a positive ANA test, my primary care physician guessed I had lupus and referred me to a rheumatologist.
I am forever grateful for that first rheumatologist for taking my symptoms seriously. During my first visit, he asked about the pain in my hand and knee. After deliberating with his team, he returned to ask me (out of nowhere, or at least it seemed that way to me) if I experienced back pain.
From then on, my visits, my x-rays and MRIs, and my treatment focused on my back. Within a few months, my rheumatologist diagnosed me with ankylosing spondylitis (the HLA-B27 antigen surely helped) and swiftly started me on a DMARD and a biologic.
It took 15 years
I spent about fifteen years searching for the cause of my back pain. I now know that’s not an uncommon length of time for people to wait for an AxSpA diagnosis. As much as I’d love to confront all of those doctors who told me nothing was wrong, I know that medical professionals are simply people, and people make mistakes.
But that doesn’t change the fact of gender bias in the medical field, nor does it change the fact that women wait longer than men (on average) for an AxSpA diagnosis. For now, I’m content with adding my story to the stories of many others here, in hopes that someday, with enough anecdotal evidence, more medical professionals will stop dismissing back pain, especially in women.
Can you tell when a flare is coming?