I don’t have a diagnosis date

“When were you diagnosed?” It’s a common question among people with chronic illnesses. I’ve heard it asked of my diabetic partner, and I’ve been asked myself. But when you’ve been diagnosed with spondylitis, or any disease that’s difficult to diagnose, the answer doesn’t tell the whole story.

I was diagnosed?

I was never formally given a diagnosis. Doctors threw around “arthritis” a lot, but that’s not a specific disease. I was never sat down and told, “You have spondylitis,” so it wasn’t the big “Ah-ha!” moment, for good or bad, that some people have. My partner remembers when he was diagnosed with diabetes. My friend knows exactly when she was diagnosed with Crohn’s disease. I don’t even remember the visit where spondylitis (or spondyloarthritis) is finally noted on my chart.

I’ve had symptoms of spondyloarthritis since I was 11-12 years old. That day that it was noted on my chart, I was nearly 20. Nobody told me they put it there; I found out about a year later, by accident, when I viewed my chart online. Nobody, not the doctor or the physician assistants I saw, ever used anything more specific than “arthritis” in the 15 minutes I had with them at visits.

Years of kind-of-diagnosis

I saw so many different doctors in the years leading up to that. The earliest ones shrugged and sent me to physical therapy when imaging showed nothing. One orthopedist that I saw when I was about 15 got on the trail of spondylitis, but couldn’t say more when the x-ray was negative for damage. (Kids don’t often have visible damage from spondyloarthritis.) That was my first almost-diagnosis.

What I’d like to consider my diagnosis date is the date when I finally figured out what was wrong with me. In 2014, all my symptoms were getting worse all of a sudden. Someone finally realized that I should be seeing a rheumatologist for my problems, but after waiting four months for a first appointment, we had no more answers than before, and it was months before the next one.

That summer, when I was 17, my sister got hugely swollen joints out of nowhere. I hadn’t even known kids could get arthritis before then, but I searched for juvenile arthritis online. I found that enthesitis-related arthritis (or the broader category, juvenile spondyloarthritis) listed symptoms like they were describing me. It started with enthesitis, it moved into my hips and then knees, and finally it reached my low back. I had pain down the back of my leg, pain that originated in my butt and low back. All the pain was in big joints in my lower body, and it wasn’t symmetrical. It got worse with rest and better with activity. The descriptions of ERA were me.

The next doctor I saw thought so too. My back didn’t bend as much as it should, and all my symptoms fit. When she brought up ERA, she was surprised I’d heard of it. But at the next visit, when it turned out I didn’t have the gene HLA-B27, she stopped talking about it. (Since there aren’t many clear-cut signs of spondyloarthritis on x-rays and blood tests, some doctors cling to the presence of HLA-B27 as a definitive answer, even though 20-40% of kids with juvenile spondyloarthritis don’t have the gene.) That was my second almost-diagnosis.

Even at that point, though, I had lived with the weird aches and pains for 5 years. I was so young, I didn’t remember what it was like to not be in pain. To me, it felt like I’d had it forever, so I naturally assumed I would continue to have it forever. Realizing it was a “chronic illness” didn’t hit me like it hit my mom when she realized my sister and I had incurable illnesses, so I guess that’s part of the diagnosis experience I’ll never have.

The next doctor I saw brought up spondylitis almost immediately. By then I was 18. Again, though, when nothing showed on imaging or blood tests, and when I was female and didn’t have HLA-B27, he quickly retracted his statement. (Spondylitis was thought in the past to affect mostly males, but more recent studies show it’s not as great a difference as previously thought, with a 2-3:1 or possibly even 1:1 male-to-female ratio instead of 10:1.) That was my third almost-diagnosis.

When I went to college, I got a new doctor, and this one was interested in trying treatments even if he wouldn’t say what kind of arthritis I had. And finally, 8 years after my first symptoms, 2 years after I found it myself, spondyloarthritis was noted on my chart.

Doctor Google

After so many years and so many confused doctors, of course I turned to the internet for answers. I know, I know. Doctors hate it when patients search the internet. But when used intelligently, the internet can be a great tool that people can use to make themselves heard and get the care they need. Doctors don’t know everything, and they can’t cover everything in a 15-minute visit. Sometimes the only and best option is for patients to educate themselves so that they understand their bodies and what’s happening to them.

Unfortunately, discrimination and access issues can also play a role in healthcare, and they can decrease the quality of care that people get. But with the right tools, someone can recognize that it’s important to listen to their body and what their symptoms are telling them. (I once had a GI doctor call me an “otherwise healthy young person” when I was sitting in his office with uncontrolled arthritis. He said my problems were just lactose intolerance. They weren’t.)

That’s not to say that someone with access to Google is qualified to be a doctor, but it’s too easy to get overlooked and passed along with no one taking much interest in your case. Real medicine isn’t like shows on TV, where doctors put aside their week to diagnose one patient, and there’s no way anyone can expect it to be like that. Everyone needs to do what they can to advocate for themselves in the medical system. Of course, that includes listening carefully to doctors, too.

We need Google. But we also need good doctors.

What’s my diagnosis date?

Diagnosis is supposed to be such a key moment for so many reasons. Yes, it’s terrible to fully realize what’s wrong with you and what it means, but it’s also a relief to know it’s figured out. It means you can get treatment, and it means you can find support. It also helps people understand, when they ask, where you are in your journey with your illness. Can I reclaim my diagnosis date? I wish I could.

The constant back-and-forth between being told I have spondyloarthritis and being told they’re not sure anymore left me feeling that my illness wasn’t valid. That I was somehow pretending. (And I still feel that sometimes, given that my doctor has never talked to me about it. It still sometimes feels wrong to tell people that I have spondyloarthritis. It’s something I have to work on.)

While the day that I figured it out really feels like my day of diagnosis, I feel like I’m lying if I tell people it is. I wasn’t diagnosed by a doctor. But I knew in that day, and it was only years later that doctors finally saw it too. I guess, when it comes down to it, I have two different “diagnosis dates”: one is the mental and emotional realization of having spondyloarthritis, and the other is the final validation of doctors saying so.

-Bri

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