I was diagnosed with spondyloarthritis in 2013. Before that, I had lived with undiagnosed symptoms for over thirteen years. On average, it takes 7 -10 years for a person impacted by spondyloarthritis to receive a proper diagnosis. So, my own personal journey is not an anomaly. Given the prevalence of delays, raising awareness becomes that much more important in helping others who have yet to be diagnosed.
It took well over a decade for me to be diagnosed because of a significant lack of knowledge and awareness about spondyloarthritis. For example, when my chronic pain began at a young age, I didn’t know the pain was representative of a bigger issue; so I internalized it, convinced it was growing pains. Then, as a college athlete, doctors said my low back pain was caused by a knee injury that had changed the level of my hips. I believed them. I believed doctors knew everything back then.
All my pain had an explanation that made sense, even if it didn’t really make sense.
Years later, when I was trying to figure out what was going on with my body, I reached out to my estranged dad, who immediately told me my symptoms sounded like the disease he had, ankylosing spondylitis. Everything about my pain suddenly made sense, especially after a rheumatologist officially diagnosed me, but I wasn’t relieved. I was 26 and everything about the future I had always imagined was suddenly murky. Suddenly, the only clear thing I could see in my future was becoming my dad, whose kyphosis had curved his spine so much that his organs were being crushed and he looked like a question mark.
I believed the odds were slim that the disease would cause that amount of damage to me because of new research and treatments. But that knowledge didn’t assuage my terror. I had never met anyone besides my dad who had this disease, and his disease had caused disability and severe permanent damage. His was the only representation of the disease I knew, and because of that I had no tangible proof that my future would be any different than his.
It was distressing that most of my doctors didn’t know what ankylosing spondylitis (now axial spondyloarthritis, or axSpA) was. Before reaching the “I’m so sorry you have this disease,” response from friends, family, and strangers; I had to define axSpA, share how it affected me with intimate details, and often share pictures of what it had done to my dad before people understood what I was dealing with. That hasn’t changed. To this day I’m still surprised, even baffled, when someone knows what axSpA is when I bring it up in conversation.
That needs to change. No one else should ever go through what I experienced — what many of us with axSpA have experienced.
I personally believe that awareness is the key to that change.
Why?
Lack of awareness across the board is why my diagnosis was delayed for over 13 years. It’s the reason doctors suggested I take anti-anxiety medications when I was finally seeking answers. They didn’t connect seemingly separate maladies to a single systemic disease so, to them, I was mentally compromised, even though I knew something was wrong with me physically.
Lack of awareness has other consequences beyond diagnosis. For example, many treatments for spondylitis have been acquired from treatments developed for rheumatoid arthritis. Lack of awareness has also contributed to how the disease is even diagnosed. There’s no single way to diagnose the disease or predict it accurately or assign a prognosis to each individual or know what treatment will work best for each person.
Lack of awareness also impacts priority for research. By comparison to some other diseases, there is not a significant amount of federal funding for SpA research and, ironically, the same lack of awareness is the reason we need that funding. Actually, the Spondylitis Association of America has privately funded a considerable amount of SpA research out there, especially through its Early Career Investigator Award. We need more research on a federal level.
Lack of awareness is why I found a lot of misinformation on the internet when I was diagnosed; information that I only later learned was incorrect. For instance, I read that spondylitis was rare, that spondylitis was a form of rheumatoid arthritis, and of course, “Only white men get it, don’t worry.” In fact, spondyloarthritis affects 3.2 million people in the US alone. That’s more than MS, RA, and ALS combined – and that’s 16 times more common than a rare disease. Spondyloarthritis is its own disease, completely separate from RA. What’s more, axSpA affects equal numbers of men and women, and affects many people of color and nonbinary people.
A lot of misinformation is still out there, unfortunately. If SpA remains relatively unknown despite its prevalence, then how can we expect information about it to be accurate? How can we expect the medications and treatments to be streamlined? How can we expect primary care doctors to know enough about it to refer a patient to the rheumatologist as soon as it’s clear they have signs and symptoms of inflammatory joint disease? How can we expect people to automatically respond, “Oh no, you have spondyloarthritis? That’s awful!”
These reasons, among many more, are why one of my life goals is to make spondylitis a household name. I believe that awareness of spondyloarthritis is the key to all else, leading to a trickle-down effect that will enhance research, treatments, access to specialists, medical school education, earlier diagnosis, and streamlined funding for projects the SAA supports. I also believe that awareness is central to enhancing healthcare policy; media coverage; advocacy & support from friends and family; workplace accommodations; and so much more.
May is Spondyloarthritis Awareness Month. It’s the perfect month to collectively unite across all channels with our stories and education about this lifelong disease to raise awareness with hopes that we unlock that door to more understanding of this misunderstood and widely unknown disease.
How can we make that happen? Here are some ways you can help raise awareness during SpA month and beyond:
I firmly believe we can reach a critical mass of awareness with our stories and education of spondyloarthritis. After all, there are 3.2 million of us. And counting.
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