Say What, Now?
Like too many of my fellow AS patients, the journey to a diagnosis was long and painful. For over a decade, I suffered from worsening lower back pain. It didn't matter if I stood up, lay down, slept or not-- I was in agony. In 2006, I traveled to China with a group from church. I've never suffered from jet lag, but being confined to an airplane in excruciating pain was no picnic.
I was suffering
So why was I suffering so much? I had a great GP who was otherwise a good listener and responsive to my needs, but I stopped reporting my back pain to my her because she would tell me the pain would go away if I lost weight. (Insert comment here about how the medical profession as a whole ignores the valid health concerns of fat people.)
At one point, I had my first bout of iritis and my GP finally sent me to a rheumatologist. He kind of rolled his eyes and said something like, "If I had a dollar for every iritis case a GP referred to me..." He asked if anything else was wrong and sent me on my way when I said no. No way was i about to have another doctor lecture me about my weight.
Then I had a strange pain
A few years later, I started having a strange pain and swelling in the MCP joint of my right pointer finger. I waited until it began to affect my writing and went back to my GP. Who sent me back to the rheumatologist once more (she had also sent me back for elevated C-Reactive Protein, which also failed to impress him).
This time he was intrigued. He said it looked like RA, except that it was only on one side. As he prepared to order the x-ray, he asked if I was sure nothing else was wrong. I said, "Well, my back has hurt badly for years." He looked at me and said, "Why are you just now telling me on your 3rd visit here?" I told him about my fear of the usual response and he said to get my back x-rayed, too.
The answers were there
Boom! Massive inflammation in my SI joint and that finger, both lit up like Christmas trees. He told me that it was a classic presentation of AS, and that, from the findings, I'd had it for quite a while, as x-ray findings are often inconclusive earlier in the disease process.
My rheumatologist put me on Enbrel straight away and it's been pretty great since then. I still have occasional bouts of iritis, and in 2017 I was diagnosed with the onset of UC (which occurs in about 17% of AS patients), so I switched to Humira. My last case of iritis lasted for 3-4 months and had been recurring for over a year, so my current Rheumatologist added methotrexate to my regimen, which I seem to be tolerating.
Ten years later I was diagnosed
Despite the ten years it took to get a diagnosis, I have been very fortunate to have excellent, caring, and responsive medical teams. I've also been fortunate to find good practitioners when I've had to move for new jobs.
The "say what, now?" part comes from the medical wisdom that considers AS a disease that primarily affects young, white men. I am none of those things. Not only that, my membership in a large Facebook group of black woman AS patients from all over the country also tells me it's time to revisit that canard. I'm certain that my demographics partly kept me from an earlier diagnosis.
Do you use the word disability to describe your AS?