“What the hell is water?”
- David Foster Wallace
In clinic, I asked my patient why she did not want the COVID-19 vaccine.
She had spent half her adult life trying to reach a place of certainty with living with HIV.
She had survived the silence that followed her diagnosis, the stigma that rearranged her relationships, and the long period of denial before she began antiretroviral therapy. For years she did not take treatment - not because she rejected science, but because taking the pills meant accepting what they signified. Acceptance came slowly, through repeated conversations with clinicians who did not rush her and did not disappear. Trust accumulated as she realized her rising CD4 count and undetectable viral load were not just chart-bound metrics but reflections of her own body’s recovery- of food no longer hurting to swallow, of being able to stop the Bactrim pill she resented. The numbers aligned with sensation, and in that alignment her belief in our words took root. Her life regained its ordinary proportions.
When COVID-19 vaccines arrived with unprecedented speed, she hesitated.
“There’s always something new,” she said. “And we’re the ones who get to try it first.”
In the early years of HIV, illness felt random and catastrophic - an unknown, fatal syndrome disproportionately affecting young gay men and other marginalized communities. In early 2020, COVID-19 carried a similar tension: high mortality, no proven therapies, fear thickened by uncertainty. Both epidemics unfolded along pre-existing lines of inequity. Communities that had historically borne disproportionate burdens of HIV also experienced disproportionate harm from COVID-19. For many, medicine had not historically arrived as protection, but as neglect, dismissal, or delayed access.
For someone living with HIV - an incurable, lifelong illness somewhat still shadowed by stigma - a new pandemic does not arrive on blank emotional terrain. It lands on memory.
More than four decades after AIDS was first described, there remains no effective vaccine against HIV. My patient does not understand the challenges of having your immune system fight a virus that lives in your immune system, but she had witnessed evolving therapies, recalibrated expectations, and shifting public narratives. The rapid development of COVID-19 vaccines inspired relief in some and suspicion in others. Breakneck progress can look like scientific triumph or institutional haste, depending on where one stands.
When I asked her about vaccination, I realized I was not only asking about mRNA platforms or adverse-event profiles. I was asking her to revisit the emotional architecture of her HIV diagnosis: fear, confusion, powerlessness. COVID-19 was not simply a respiratory virus. It was an echo.
Health information now circulates at a velocity unimaginable in the 1980s. Social media amplifies evidence and distortion with equal force. In both epidemics, misinformation has thrived. In such an environment, respect for autonomy can feel in tension with public health urgency. Shared decision-making becomes delicate work, especially when conversations are freighted with history.
People living with HIV often frame their identity through the story of their diagnosis: the day they were told, the confrontation with mortality, the renegotiation of self. Coping responses form there - vigilance, risk aversion, fatalism, fierce self-engagement in care, or profound mistrust. Physicians sometimes become the few trusted figures in that landscape. Or they do not.
She has not yet received the vaccine. She diligently masks up when she comes to clinic or attends public gatherings and reminds me when I forget mine when entering the exam room. At the conclusion of each visit, we return to the conversation. She asks questions. I try to answer them without impatience. We discuss best- and worst-case scenarios, perceived risks and benefits, what she has heard, and whom she trusts. The discussion does not resolve in a single encounter.
In Midnight’s Children, a physician examines a woman through a perforated sheet, seeing her only in parts. It is tempting in vaccine counselling to see only the refusal, to label her anti-vaxx based on the isolated limb of hesitancy, rather than the person assembled over decades of lived experience.
Trust, like water, is most visible when it is absent. Those immersed in biomedical certainty may not notice it. For my patient, trust was constructed painstakingly over years of HIV care. The COVID-19 vaccine is not merely a public health intervention; it is a test of that accumulated trust.
What we call hesitancy may sometimes be memory. And memory does not yield to argument; it yields, slowly, to presence.
