A Sociological Approach to Chronic Illness in the Wake of SARS-CoV-2
This research project explores people’s experiences with chronic autoimmune illness in the Canadian context, before and during the COVID-19 pandemic. I examine how people in Greater Toronto/Tkaronto who live with one or several autoimmune condition(s) meet everyday life challenges, form social relations, and manage impacts of social institutions and existing health policies.
Autoimmunity is a field where medical uncertainty about its causes intersects with sociological inquiry into its societal implications, often prompting broad philosophical questions. What do we mean by the (social) ‘self’? How do we understand the shifting boundaries between ‘self’ and ‘not-self’? And how can the body, which is meant to protect us, turn against itself? Furthermore, why have autoimmune conditions been reported with increasing frequency in North America and globally? Why is there an uneven distribution of these conditions, with certain populations—especially those defined by gender, race, and ethnicity—disproportionately affected? And how do social determinants of health amplify these disparities? These are some of the questions that have motivated my research.
For the people in this study, as for those living with autoimmune conditions more generally, these are not merely abstract questions. They live daily with the unpredictable, often cyclical manifestations of autoimmunity in their bodies. These manifestations can range from mild and gradual to sudden and dramatic, shifting from invisible and dormant to visibly disabling and chronically painful. Factors such as family environment, life situation, socioeconomic status, migration experiences, and transgenerational trauma have all been shown to influence how individuals experience autoimmune conditions. This is evident in the stories shared by participants in this study.
For a more detailed discussion, please see my recently launched report that summarizes the preliminary findings.
Further analyses of this research will be presented in 2025 at the European Sociological Association, the Portuguese Congress of Sociology, the German Sociological Association, as well as the Slow Memory Annual Meeting.
Acknowledgments
I express my gratitude to all research participants for their generosity in sharing their life experiences. I also want to thank Dr. Yikun Zhao, Nishan Kaushall, Eamama Daniyal, Jennifer Weerasinghe, Sana Hafeez, and Amna Mohamed Arif for their research assistance, collaboration, and other invaluable contributions at different stages of this project.
For a full list of organizations that have supported the recruitment of participants for this research, please see the listed report.
This project was funded by the Social Sciences and Humanities Research Council of Canada’s (SSHRC) Insight Development opportunity and has been approved by the Research Ethics Board (REB) at York University.
For more information: autoimmunity[at]yorku.ca