Imani Perry Shares What Her Lupus Diagnosis (and Pain) Has Taught Her

“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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