Annika Tara Nilsson

Grant Type

Dissertation Fieldwork Grant

Institutional Affiliation

Washington U., St. Louis

Grant number

Gr. 10233

Approve Date

October 7, 2021

Project Title

Nilsson, Annika (Washington U., St. Louis) "Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities"

This project will examine how people living with medically underdetermined, complex chronic illness produce knowledge about their conditions through informal research and self-experimentation mediated by online forums and support groups. Complex chronic illnesses are difficult to treat and poorly understood by medical science, leaving the people who live with them with little expert guidance regarding the management of their conditions. Despite continuing medical uncertainty, these patient groups have been remarkably successful at developing alternative epistemic tools for understanding their conditions. This study will examine how complex chronic illness patients work to synthesize their somatic experiences into new objects of knowledge, situate their bodies as sites of knowledge production, and produce their diagnoses as socially salient facts. In so doing, it will attend to the ways in which such efforts both disrupt and (re)produce racialized, gendered, and classed forms of epistemic hierarchy which render women, and particularly women of color, particularly vulnerable to biomedical marginalization. In a time when conventional sources of expert authority are widely understood to be in crisis, this study offers an opportunity to advance our understanding of the multi-sited and deeply contested processes through which knowledge nevertheness comes to be.