Ask the Non-Radiographic AxSpA Advocates: Self-Advocacy and Finding Community

As we learn more and more about axial spondyloarthritis (AxSpA) and ankylosing spondylitis (AS), we also learn that many people live with AxSpA symptoms, yet have no evidence on their imaging tests. Community members find themselves asking: "Why do I have ankylosing spondylitis symptoms, but my doctor says my X-rays look fine?" These folks may be living with non-radiographic axial spondyloarthritis (nr-AxSpA), a subtype of AxSpA.

We asked our advocates Jamie, Dyana, Arden, and Sarah, who are living with nr-AxSpA, to share a bit about their journey with the condition. We also asked them about their struggles in getting diagnosed and the challenges in finding accurate information and community. Read on below.

Because you did not have the typical X-ray evidence, how did that impact your patient journey? Do you think it required you to self-advocate more with your doctor and ask for proper care and testing?

Jamie: "As my diagnosis journey progressed, the constant negative tests certainly grew worrisome. At every turn, I expected something to come back with an indication of what was wrong because I could definitely feel like something was amiss. The saving grace was 1 blood test – post-diagnosis – which showed elevated inflammation (CRP levels). It allowed me to qualify for a biologic by the narrowest of margins."

Dyana: "By not having typical X-ray evidence, it absolutely impacted my patient journey to find a diagnosis. I had various symptoms spanning over 16 years, but it took a solid 6 years of actively going from specialist to specialist. The first 2 rheumatologists wrote me off because of the fact that I had no radiographic evidence and because I was female...I absolutely believe I had to be my own advocate, as evident of seeing 3 different rheumatologists over a 6-year time frame, in addition to other specialists to rule out other conditions...I long felt I had some unknown autoimmune disease that hadn’t been diagnosed up to that point."

Arden: "Yes, I did have to self-advocate more. When I first started having pain, I went to an orthopedist and started physical therapy. My pain did eventually get better with physical therapy. I was pain-free for about 4 months until my pain returned. It was different this time with the newly added symptom of stiffness. Thankfully, my physical therapist had seen axial spondyloarthritis before and suggested it. I made an appointment with my orthopedist and told her what my physical therapist said. She did not seem convinced, even though I was in tears telling her that how I’m feeling is not normal for a 29-year-old with no traumatic injury. I frankly asked her, “Do you think I have arthritis?” That was enough to get her to order an autoimmune blood test and an MRI. At my follow-up appointment when she checked my labs and read the radiology report, she was visibly and audibly surprised. She then moved quickly to get a referral to a rheumatologist. At that appointment, I did not have to convince my rheumatologist at all."

Sarah: "The thing that really had me torn during the entire process of getting diagnosed was wishing I had positive labs or imaging so my doctors would believe me and I would have answers versus knowing with my medical knowledge that negative tests and radiology WERE a reassurance that I wasn't in any immediate danger. It's difficult to find yourself hoping for an abnormal number or something wrong on an X-ray – you don't WANT to be sick, but you also don't want to be in the dark anymore. Repeatedly being told everything was coming up negative had me second-guessing my lived experience and making it tougher to advocate for myself. I did have to push for more in-depth evaluation and press for more "rare" things to be checked because at the end of the day I was in pain, and it was holding me back even if the imaging disagreed."

Was it hard to find information and/or find a community related to non-radiographic axial spondyloarthritis?

Jamie: "When I first heard the term non-radiographic axial spondyloarthritis, I was completely confused. I remember frantically writing the words down as my rheumatologist said them to me and not having the first clue what it meant. I was already fairly well-versed about ankylosing spondylitis because my mom had gone through that diagnosis process a few years before my diagnosis, but the new terms definitely sent me for a bit of a loop. The month of my diagnosis was definitely a whirlwind of mental confusion between the learning curve and follow-up appointments and medication trials (and mostly errors). Finding information was fairly straightforward because I was able to use my existing knowledge of AS and add to it. Finding community has been a lot more difficult. I don’t know anyone in my personal life with the same diagnosis as me...The only people I’ve connected with are other advocates on here – and they are awesome! But doing it virtually has its limitations, that’s for sure."

Dyana: "It wasn’t necessarily difficult initially to find information online about nr-AxSpA, though there wasn’t a ton of it. There were a lot of resources for ankylosing spondylitis but not as much for nr-AxSpA. In regards to community, it was hard to connect with others online initially. I did connect with others using various hashtags on Instagram and have since formed connections and friendships with others with nr-AxSpA and AS. It was using various hashtags that got me in connection with site leads who launched this site and I am so thankful for that! I’m thankful to not feel alone because at the time of my diagnosis, I didn’t know anyone else who had it and it was a very isolating feeling."

Arden: "It was confusing when I first started out because it’s unclear if nr-AxSpA is the same as ankylosing spondylitis. Is it a totally different disease or is it the same as ankylosing spondylitis, just before spinal fusion has happened? Spondylitis Association of America has a lot of great resources, so that is where I found most of my information."

Sarah : "Absolutely. Before I was diagnosed, every time I searched my symptoms I would have to use ankylosing spondylitis as a yardstick against which to judge my presentation. So if you don't know how to search for the exact symptoms of nr-AxSpA, it is hard to "happen upon" it online. After learning about nr-AxSpA I was still only able to find a few resources, and they tended to be sponsored by pharmaceutical companies or literature not based on my specific age group or assigned gender. Since the rheumatological community has been talking about this condition more this past year, it has slowly gotten easier to get more information. Community is still lacking, and I think this page is one of the few I have found that is consistent/has more patient-centered goals."

In part 2, we will ask our advocates about the changing spondyloarthritis diagnoses and whether or not they worry about progression. Stay tuned!