Decades for a Diagnosis, Part 2: Persistence
Editor's note: Part 1 of this article can be found here.
By now language around pain and medicine was changing rapidly. The internet gave me unprecedented access to medical info of all kinds and I soaked it up. I pulled all-nighters on Usenet searching for others like me. When I did find online health communities, there was a familiar current running through members’ stories—despair, frustration, determination, weariness—that comforted me.
A community of people in pain
Many wandered around in a haze of pain meds and desperation looking for answers. Others had very specific diagnoses, which made me jealous. Being sick was tough, but being sick for unknown reasons could and did drive many to their breaking point. Almost daily, someone posted that they couldn't take it anymore: their pain was too great, their condition too misunderstood, their spouses unsupportive of an illness they couldn't see.
Our commonality was our need to be heard, by our families, our doctors, and the health community at large. Fearing I would lose my sanity otherwise, I started sharing my own horror stories: experiencing drug withdrawal when insurance paid for a med one month but not the next; tracking a doctor down on holiday who’d left the country without authorizing a CT scan; choosing between paying for meds or electricity in between freelance gigs.
A few years ago my health hit a nadir even I couldn’t predict. My pain was as sharp as a lightning bolt, as jagged as a chainsaw, as unpredictable and shattering as an earthquake. I had trouble holding food down, or I had no appetite at all. I was getting migraines from bright lights, and I often had a low-grade fever.
Meanwhile, new terms floated in the ether like fibromyalgia, mixed connective tissue, adrenal syndrome. Autoimmunity, a term as unknown to me in the 80s as Lyme disease, was now discussed everywhere—online, in books, on the morning news. But I had tested negative for conditions most common to black women, like lupus, hyperthyroidism, and rheumatoid arthritis. Secretly? I sometimes wished for a "common" illness. There was data on lupus. Black women could survive with lupus. I wasn't sure I could survive the acute, nameless pain I felt in my back, hips, and feet.
A better approach
The changing times led, thankfully, to more informed pain management. I abruptly left the uptown Oxycontin doctor, whose unwavering confidence in the opioid and close relationship with its pharmaceutical reps made me uncomfortable. Eventually, I found a pain management doctor close to my home in Brooklyn, who believed me completely and was confident he could treat me. He’d seen it before, he said. Often.
I was shaken by how receptive he was to me, how seriously he took my concerns, how respectfully he spoke to me. He immediately started me on more effective pain meds so that I wasn’t struggling every hour to accomplish basic tasks, and ordered up a battery of new tests. Then he asked the question that had slipped between the cracks for nearly 20 years: “Have you ever seen a rheumatologist?”
I had not. Why would I? As far as I knew I only had osteoarthritis, along with millions of other 40-year-olds. I'd seen urologists, gastroenterologists, orthopedists, podiatrists. I didn't want to see another specialist as long as I lived. But I trusted my pain doctor.
At my rheumatology consultation in 2016, the doctor, a younger woman of color, immediately unnerved me by claiming my severe flu-like symptoms and staggering fatigue sounded like fibromyalgia. I was dismissive—the condition was an umbrella term for a bunch of nonspecific problems. It was also a label doctors slapped more frequently on women, making me concerned it was the new "hysteria." But my doctor—another woman—followed up with strategic questions about a family history of arthritis, bursitis, chest pain…I didn’t have much family medical information, but I knew the women had arthritis. Surely if I had something more severe, I'd know what that felt like.
I was scared and ready to bolt when she suggested I get one more set of X-rays. Our knees almost touched as she spoke to me within the tiny exam room overlooking the Brooklyn Bridge. “I want to look at your sacroiliac joints,” she said.
Sacroiliac? I sat up straighter; she had my full attention. Sacroiliac was new. And new terms meant new possibilities.
"How soon can I get them done?" I asked.
Tears of relief
Within 72 hours, my rheumy had a two-prong diagnosis. Yes, fibromyalgia was part of the problem. But the back pain? That was definitive, and test results confirmed that the scarring on my joints indicated an autoimmune arthritis called ankylosing spondylitis. She rattled off a list of symptoms that she believed fit under the same umbrella: lack of appetite, dental issues, headaches, insomnia, and referred pain. I hadn't connected the dots because my health journey had never been comprehensive. My healthcare was always money based: I went to doctors as I could afford them. Activities that might have relieved my symptoms, like low-impact swimming, massages, and cupping, took a back seat when my income dipped, then stopped. And not a single health professional had asked the right questions.
I was speechless. When I opened my mouth to object she insisted, “I know. They say only white males get this, and at a much younger age. But,” she said ruefully, “It’s simply not the case.”
AS is not just a diagnosis for white males
Even now, there's almost no research on AS that isn’t centered on white males. The rare study on ethnicity and AS disease severity conducted by the Spondylitis Association of America (SAA), showed black patients experienced the highest levels of disease activity, impairment, and severity of the three groups studied (black, white, and Latino).
In other words, we have the most pain and damage, despite having the lowest number of diagnoses. And my paranoia over misdiagnosis was well-founded. The National Institute of Health reports that more women reported misdiagnoses of fibromyalgia (20.7 vs. 6.6%) and psychosomatic disorders (40.8 vs. 23.0%) compared with men. As a black woman, odds were high I might have gone my whole life without a proper diagnosis. Many do. It’s a stark reminder of the undercurrent of racism and sexism that exists in medicine. It is, after all, just a microcosm of the world around us.
I cried out in relief
That sunny afternoon in my rheumatologist’s office, though, I had no objections. I wasn’t thinking about global statistics. For once, I didn’t even have a follow-up question.
I simply burst into tears.
I cried out of relief, while my rheumy handed me tissues and assured me that my emotions were all valid. I cried that a young doctor of color had looked beyond the tiny box that only allowed me to have a slipped disk or Lyme disease. I cried because the diagnosis had come so fast after 30 years of mucking about in medical quicksand. And I cried for the teen girl, hurting and confused, missing such a small piece of information that might have made such a great difference many moons ago. Decades ago.
Do you use the word disability to describe your AS?