“I am a spine on fire. I am a collection of joints and bones and tissues that wage war. I am every step in pain. I am not thinking clearly. I am not moving quickly. But I am also not going to be quiet.” It took nearly a decade for Lisa Marie Basile’s ankylosing spondylitis to be diagnosed, a decade in which she had to navigate the usual bullshit about chronic illness—especially about being a woman with chronic illness. I’m mindful of just how atypical my experience was: I was diagnosed in less than six months.
I imagine that everyone with a serious or chronic illness knows the date of their diagnosis. Mine was January 13, 1998, which is to say 22 years ago today.
The diagnosis was by that point a formality. I’d known something was up since June 1997—I was in constant pain and I had trouble walking and sleeping—and had been talking to doctors and undergoing tests. The previous month I’d received results from a bone scan that suggested a possible diagnosis of ankylosing spondylitis—a disease I’d never heard of before, though it turned out that there was a family history of it. The rheumatologist reviewed that family history, the symptoms and the test results and concluded that I had a “textbook case” of AS.
(As it turns out, my case is not so textbook, or at least the textbook has since changed. A 2012 MRI revealed no evidence of spinal fusion after 15 years, which made a different rheumatologist wonder whether I had AS at all. She retracted that doubt at a later visit when I arrived in flare and she saw how I walked. I suspect that what I have is non-radiographic axial spondyloarthritis, which is similar to AS and is treated the same way, but doesn’t involve spinal fusion and doesn’t show up on X-rays. I’ve yet to run my theory past a rheumatologist, though.)
I’ve been living with that diagnosis, with modifications, for more than 22 years. I’ve always been open about my illness (much to my mother’s horror) and I used to talk about it a fair bit—I even ran a blog about it for a while—but lately I’ve been talking about it a lot less. That’s not because I’m doing better, because honestly I’m not (though there still seems to be no sign of fusion). It’s because talking about my illness is, even after all the elapsed time and the care received, still a potentially hazardous activity. Even under best-case conditions, talking about my illness requires a tremendous amount of emotion work.