“Your ANA test is negative, which means you don’t have lupus.”
“You probably just have an ingrown pubic hair,” she added.
Because, you know, I am Black. My hair is nappy. And that must be a pain.
It is only because my mother called and complained repeatedly that my doctor granted me a referral to see a rheumatologist. I don’t remember much about him except that he talked to my breasts more often than my face, and that he developed a habit of laughing at me. I often heard him laughing in the hallway as tears rolled down my cheeks.
In this initial visit, however, he said to my breasts: “Given your positive ANA test, symptoms and family history, we have to consider lupus.”
It was Aug. 22, 1996. I was 23. My previous doctor had said the test was negative, but I don’t know why: maybe racism, maybe incompetence. Maybe it was the result of H.M.O. cost-cutting pressures.
Her words faded. I had lupus.
The condition doesn’t have a simple diagnostic assessment. There is a suite of symptoms, and if you have four of them, you have lupus. I had five: a positive ANA test, arthritis, fatigue, rashes and pleurisy, inflammation around the lining of my lungs.
I also had a great-aunt who had died of lupus and another aunt who was fighting for her life against systemic and discoid lupus (the latter is a skin disease that left dark painful lesions on her willowy limbs). I had an inheritance; a terrible foreboding.
In high school, I had written a paper on the condition for my freshmen biology class. I received my only decent grade in the class for that assignment. I tucked it away, happy about having succeeded in science for once, and I said to myself: I will be ready if I ever get the disease.
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