Table 3.

Selected themes and representative quotes

Topic	Themes	Representative Quotes
1. Experiences with clinicians	Circuitous diagnostic journey	“I started off with the orthopedic, the one that told me first of all it was in my head, and then the spine doctor who told me that possibly I had cancer, and then just left me—between the two of them working together left me hanging and freaking out.” [Female age 48 years]
	Impressing physicians that something is genuinely wrong	“For me, I think what made the doctors pay attention was when I had some acute symptoms. So, I had muscle spasms in my neck to the point where the pain was unbearable, I could not move my head even a fraction to the left or to the right or up or down and the muscles would just go in spasm. And one time it was so bad, you know, I had to be hospitalized for three days because I couldn’t stand the pain… so, it made the point I'm not kidding, you know? This isn’t—it's not psychosomatic, I'm too old for growing pains, and, you know, something's got to be done because something's causing [it].” [Male age 66 years]
	Intermittent symptoms	“Because it would come and go… It would only be like once every other year where I had an episode that was, like, so bad that I was like unable to move … This is just, like, so much pain… I think sometimes it was just that they didn't know what—they, like, didn't have any idea. Like, they would ask questions, but nothing would emerge as a potential diagnosis.” [Female age 33 years]
	Participants feeling not “heard”	“So there's a fallibility with the doctors not listening to what you're telling them, not understanding that pain is actually pain, not just something that's annoying you, but it's a sign of something serious.” [Male age 73 years] “I'd see like all these different doctors and they kind of like were like oh, you're so young, you're just being dramatic, and they kind of made me feel like I didn't know what I was talking about, like I didn't know what my body was going through.” [Female age 21 years] “Listen to the patient and take them seriously….” [Female age 48 years]
	Complaint fatigue	“like, you've complained about this forever. And it—so, like, slowly you kind of stop talking about it… I did stop talking about—especially the joint pain, for quite a long while, just because of the lack of like taking it seriously, being diagnostic, stuff like that.” [Male age 34 years]
	Doctors give up	“They [my parents] went to a lot of specialists all over the country, and all of them told me that there was nothing wrong with me. And they even intimated that, you know, possibly it was in my head. And which was very aggravating, because I knew there was something really wrong.” [Male age 67 years]
2. Symptoms of early disease	Gradual onset	“But it just continued since my 20's is when it started, and I—I didn't actually know what it was. I thought, like, maybe I had pulled something, or there was chiropractic back issues. So and then it just kept going” [Female age 33 years]
	Dramatic symptoms	“My back used to spasm to the point where I would literally, like, almost leap off the bed in pain.” [Female age 41 years]
	Unusual gait	“I had people telling me like, dude, you're walking like a 90-year-old man, what's wrong with you? And I said I don't know, they say nothing's wrong with me.” [Male age 34 years]
	Curtailing physical activities	“I used to be active, I was a cheerleader in high school, you know, I started riding my bike, and all of a sudden, you know, at 19–20, I couldn't do certain things.” [Female age 65 years]
	Frustration and mental suffering	“It's frustrating and it's alarming, I mean, you don't know—I didn't know what, like, what the hell's going on, you know, you just keep—you know, and they couldn’t come up with anything.” [Male age 52 years]
	Early symptoms: pain	“There's so many different ways to describe it that you can't just pin down what type of pain. And that's what the doctors want you to do. They want you to pinpoint that pain and I'm like I can't. It's so many different pains at so many different times, there's no way I can tell you exactly what pain is happening at what time and when and exactly what's going on. I just can't do it.” [Female age 45 years]
	Early symptoms: stiffness	“I feel like it's like a brick wall and I have to like throw myself into the motion, kind of like what [participant] said, to even try to get the movement started and then just like what [participant 2] said, like, you regret it right after, like you're just in so much pain, and I consider was that even worth it, like, getting out of bed, going across the room, going down the stairs to do something, and—it's just painful.” [Female age 21]
	Early symptoms: impact on sleep	“And I woke up in the middle of the night… out of my sleep. I couldn't – my neck was just kind of like you're saying, very sudden. That was the most sudden thing. And dramatic, and I couldn't sleep. It's been a problem the last several months for me.” [Male age 47 years] “It was in my back and it was severe enough so that I really didn't sleep in a bed anymore, I would sleep on a short couch so my feet would be up on one end and my head would be up on the other end and then I could sleep through the night, and I still can't sleep laying flat.” [Female age 67 years]
	Early symptoms: impact on activities of daily life	“I can't run after my kids all the time, like, I'm a student teacher at school so it's just hard.” [Female age 21] “After grad school, I was kind of like—and I had entered the work force, I was like, I really have to do something about this, because it's causing me to take time off from work, and I only have so much time.” [Female age 33]
	Early symptoms: changes with weather	“Weather kills me, There's a storm coming in. It does. I mean, I get to where I feel so handicapped and in pain, my children have to help me… When the weather comes in, I'd say it [pain] goes to a 9. It's off the charts a lot of times. It'll be short-lived. It's barometric pressure coming in ahead of the storm.” [Male age 67]
3. Misdiagnosis	Didn’t fit the “typical” axSpA profile	“I think it was an immunologist, and finally I was diagnosed and he figured it out, even though I'm supposed to be a male, I'm a female and I had ankylosing spondylitis and I was HLA-B27 positive, so that's when—it took six years, 5–6 years.” [Female age 65 years]
	Orthopedic misdiagnoses	“So any time I complained about back pain, back issues, it was always attributed to, oh, well, you walk on your toes. So you just have to stop walking on your toes.” [Female age 41 years]
4. Self-Advocacy	Participants did their own research and challenged their physicians	“You know, went for a number of years with nothing. And it seemed like I was the one that was doing the research. I was the one that was doing the digging. I was the one that was doing the experimenting.” [Male age 67 years] “I'm like, you know, I'm trying to—I'm relying on my doctors—You want me to sit down? And that's the other thing. Part of it for me, it's in my neck. You want me to sit down at a computer for a few hours and research stuff that's already painful?” [Male age 47 years]
	Self-advocacy was seen as essential	“Doctors, I mean, they care, but they don't. like, if you don't just, you know, get to the point, be there for yourself, like, advocate for yourself, they're just going to then walk out the door and say nothing's wrong.” [Female age 28 years] “The best advice that I got through all this is you have to be your own advocate and I think you have to just be relentless. Like, no one's going to stand up for you, no one's going to call the doctor back and be like nope, it's still broken. So I think that's the biggest thing is, is having the courage to kind of stand up for yourself and be your own advocate and not depend on someone else to get to the bottom of what's going on.” [Male age 34 years]
5. HLA-B27	HBLA-B27 positive	“You know, like I said, my doctor tried different things but it ultimately, for me, and it sounds like for all of us, came down to the blood test.” [Male age 52 years]
	Advocating for wider use	“I would say do blood tests as soon as you hear people describing pain that's not associated with an injury. Just do it. I just went—like, I'm younger, and it took doctors—I'm talking about the last 5 or 6 years. One doctor did blood work. Like, why did only one doctor do blood work? Is it that expensive to do? It's not… Come on…” [Female age 33 years]

axSpA Axial spondyloarthritis, HLA-B27 Human leukocyte antigen B27