Annika Tara Nilsson

ANNIKA NILSSON, then a graduate student at Washington University, St. Louis, Missouri, received a grant in October 2021 to aid research on “Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities,” supervised by Dr. Talia Dan-Cohen. This project sought to understand how people living with complex, medically underdetermined chronic illnesses advocate for themselves and produce knowledge about their conditions through informal research and self-experimentation mediated by online forums and support groups. While public discourse often describes these activities as a potentially dangerous rejection of medical authority, the participants in this research resorted to online research and self-experimentation only after conventional medical care proved ineffective or inaccessible. They understood their departure from conventional medical care as temporary and driven by the urgent need to address their symptoms, rather than as a rejection of the conceptual, scientific underpinnings of medical science. Participants in chronic illness forums used narrative as a tool for both knowledge-making and public-facing advocacy. In patient-centered forums, users collaboratively analyses of narrative accounts of one another’s’ illness experiences in order to identify patterns, in an approach that emphasized how differences between individual bodies, histories, and contexts influence illness trajectories. In public-facing settings, emphasis on promoting audience identification through brevity and broad relatability came at the expense of authenticity, particularly for marginalized participants. Thus, the effort to improve circumstances by seeking to broaden public awareness and empathy may in fact further obscure the structural causes and consequences of complex chronic illnesses.