In the past six weeks, I have interviewed six long-term survivors of HIV. These interviews have been heartbreaking, exciting, tender, and insightful. They’ve also been difficult to conduct since getting COVID; I am still quite fatigued, contrary to some people’s expectations since I am young and healthy. The urge to neglect my well-being for this project feels profoundly ironic. As I hear people’s stories about being disabled by illness, I find myself struggling to listen to my body and give it the care it deserves.
I am not alone in those feelings. Earlier this week, a participant told me that he'd previously worked himself much too hard—not considering the effects of his HIV status and medications—until his body and mind buckled under the pressure. While he acquiesced to productivity pressures to the point of neglect, others completely escaped their normal lives. I’ve listened to multiple people—mostly the least privileged interviewees—talk about spiraling and using drugs during the early days of the HIV/AIDS epidemic, especially after their diagnosis. What rings consistently throughout these diverse people’s experiences with epi/pandemics is a (mental/physical) flight from their old lives and often reality. New conditions demand change that will inevitably come, unhealthy or not.
My experience with this project has emphasized how we cannot turn back the clock amid public health crises, both as sick individuals and as a collective—and that we shouldn’t always want to! Among my interviewees, some of the greatest pain has come at the hands of denial, and some of the greatest joys have come from solidarity in advocacy, innovation, and community care.