In an article published in The New York Times, Imani Perry, JD, PhD, the Hughes-Rogers Professor of African American Studies at Princeton University, detailed her diagnostic journey with lupus. She recalled experiencing sudden, acute pain in her hip the day after taking a doctoral comprehensive exam. She later experienced joint pain, a butterfly rash across her face, black scabs on her face and back, oral ulcers, and patches of baldness on her scalp. Concerned she had developed lupus like two of her aunts, Ms. Perry visited her physician to take an antinuclear antibody test—but her physician was reluctant to administer the test, and when it came back negative, she told Ms. Perry she likely had an ingrown pubic hair. Negative antinuclear antibody tests, however, are possible with lupus. Listening to her intuition, Ms. Perry visited a rheumatologist who confirmed she had received a positive test, and she was subsequently diagnosed with lupus. She noted that individuals who have at least four symptoms of lupus—including a positive antinuclear antibody test, arthritis, fatigue, rashes, and pleurisy—can be officially diagnosed with the condition, but diagnostic assessment often takes years. Ms. Perry encouraged others to listen to their bodies and not to ignore their pain, something she had at first tried to ignore. “A urologist … whom I saw 2 decades later for a different condition taught me a necessary lesson: he told me that I had a ‘dangerously high threshold for pain,’ a habit of pushing through the incessant aching and throbbing. If I didn’t learn to listen to my own suffering and respond with kindness to it … I’d undo myself,” she concluded.
May 25, 2023