My Diagnosis Story: "We Can't Tell What's Wrong With You"
It was about 2009-2010 when I started noticing strange symptoms, like painful eyes and fatigue. I remember thinking, "Why does everyone else have so much stamina?" I was in graduate school and working full-time, sure, but what I felt was soul-deep. It was shattering. I was so profoundly tired that I didn't have the language for it.
I had uveitis
I was diagnosed with uveitis during graduate school. I kept getting recurrent bouts of it — my right eye would swell up like a small red pit, and looking at light was painful in a way that made me feel like I might actually die. The pain was beyond pain. It was sheer terror.
I had never really been sick before, so the idea that the uveitis was connected to something bigger never once crossed my mind. I was always that girl with a good metabolism, I was fit, I never broke a bone, and I was super mobile. I could do a perfect round-off or cartwheel (I still can, on good days). I danced. I'd never had surgery (I still haven't, and I fear one day I will).
I was so exhausted
After all that uveitis (about four bouts of it, which lasted sometimes for weeks, although the steroid eye drops helped immensely), I went to the doctor in 2013, telling her that I was seriously [expletive] exhausted, my body felt beat up and run down, and no sleep could fix it. She told me to eat better and work out more. She wrote down a list of energizing foods and a list of bad foods to avoid and told me to follow the list. I did, for the most part. I thought, "I must be horribly unhealthy!"
The thing is, I never really ate badly. I got a lot of movement, too. I danced. I walked. I live in New York, and running up and down the thousands of subways steps was and is no stranger to me.
Then my dad mentioned his surgery
The feeling of fatigue stayed. It wasn't until my dad (whom I fell out of contact with for many years) mentioned something about getting surgery on his back that surprised me. I think — though the memory is blurry, as I was always in and out of the doctor's — that I casually mentioned my dad's back issues to my ophthalmologist during one of my uveitis flare-ups.
At that mention, it's like a light went on for him. He had another expert come in, and they asked me about my family history and had me sent for a chest x-ray and HLA-B27 (which is a genetic marker that is associated with spondylitis) blood testing. They talked about Lyme disease, sarcoidosis, and even mentioned syphilis. The words "autoimmune disease" came up a lot. I remember sitting there with my mother, scared. Her eyes were wide. She tried to hide it, but she was scared.
I was young, infallible, and never sick — remember?
My pain didn't start until years later
Besides the fatigue, my eye inflammation, and a positive HLA-B27 test, there were no other symptoms. My back, hips, neck, sacrum, and pelvis didn't start hurting til years later, around 2017. At that point, the uveitis had gone away but in its spot was fiery back pain, weird rashes, and exhaustion that truly felt like I was going to pass out after a 10-minute walk.
When I finally had access to good health insurance (which I've since lost), I had two prominent rheumatologists at two of the most respected hospitals in New York City confirm the diagnosis of ankylosing spondylitis. But this was after years of no radiographic evidence, and before anyone who diagnosed me with axial spondyloarthritis.
I wish the doctors knew more about AxSpA
I genuinely believe that doctors just weren't thinking about how AS would manifest at that time — perhaps due to a lack of information around AS and immune-mediated or inflammatory arthritic conditions in general.
I also believe because I was young and generally healthy that they discounted my symptoms as a weird fluke. Lastly, I'd had a few people tell me that AS is a man's disease, so I'm sure that that played into the original doctor's viewpoints as well.
It's been a long road — with more twists, turns, doctor's appointments, specialist visits, and almost-diagnoses than I can write here.
The one thing I've learned? If you feel "off," you're not crazy, wrong, histrionic, lying, weak, sensitive, weird, overly-emotional, or crying wolf. Listen to your body, and advocate for your needs.
Does reading AxSpA patient stories help you in your journey?