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

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“Your ANA test is negative, which means you do not have lupus.”

“You probably just have an ingrown pubic hair,” she said.

Because, you know, I’m black. My hair is nappy. And that must be a pain.

It is only because my mother repeatedly called and complained that my doctor gave me a referral to see a rheumatologist. I don’t remember much about him except that he used to talk to my breasts more often than my face, and he had developed a habit of laughing at me. I often heard him laughing in the hallway as tears rolled down my cheeks.

However, at this initial visit, he said to my breasts: “Given your positive ANA test, symptoms, and family history, we have to consider lupus.”

It was the day of August 22, 1996. I was 23 years old. My previous doctor said the test was negative, but I don’t know why: Maybe racism, maybe incompetence. Perhaps this was a result of pressure from HMOs to cut costs.

His words faded away. I had lupus.

The condition does not have a simple clinical assessment. There’s 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, the swelling around the lining of my lungs.

I also had a great-aunt who died of lupus and another aunt who was fighting for her life against systemic and discoid lupus (the latter a skin disease that left deep painful lesions on her willowy limbs). I had an inheritance; a terrible foreboding.

In high school, I wrote a paper on the situation for my freshman biology class. I got my only good grade in the class for that assignment. I put it away, happy to have succeeded in science for once, and I told myself: If I ever get this disease, I’ll be ready.

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