Autoimmunity, Self, and Society:
A Sociological Approach to Chronic Illness in the Wake of SARS-CoV-2
Funder: Social Sciences and Humanities Research Council (SSHRC) Insight Development Grant (2022-24)
Principal Investigator: Michael Nijhawan, York University
Short Project Description
Our pilot study explores people’s experiences with chronic autoimmune illness in the Canadian context. During the COVID-19 global pandemic, people with immunocompromised bodies are among the most vulnerable, for having a comparatively higher risk of developing severe symptoms and facing greater uncertainties in social interactions and relationships. Nevertheless, within the chronic illness spectrum, people with autoimmune conditions are still underrepresented in public debates. Our research examines how they meet everyday life challenges, form social relations, and manage impacts of social institutions and policies.
We understand that social and political upheavals triggered by the pandemic are intertwined with existing forms of structural violence and social inequality on a global scale. Despite our collectively shared experiences of political polarizations, personal loss, and public health emergencies, there remain significant disparities in the relationship between health and socioeconomic status. Our project therefore investigates the impact of existing forms of social inequalities on the everyday life of people with chronic illness.
- First, we explore how people with chronic autoimmune illness navigate the challenges of everyday life in varied ways and the implications on their wellbeing. This is an open-ended inquiry.
- Second, we see an urgent need to better understand the emotional labour engaged by persons with chronic autoimmune illness: how are their social lives and identities affected by prolonged periods of social distancing and isolation?
- Third, we study the impact of public narratives in shaping the personal stories and experiences of people in this category, for how persons with such medical condition are publicly and officially designated (i.e., as “immunocompromised”) reflect how these illnesses are socially understood and constituted.
- Fourth, we study locally how existing socioeconomic barriers, historical marginalization, racialization, and various modes of ethnic/cultural belonging intersect in shaping the everyday experiences of people with autoimmune conditions.
Conceptual Questions for this Project:
As sociologists we are thus determined to find out how people’s experiences reflect socioeconomic and cultural differences, forms of social inequalities, and other barriers in health care. We further examine how people navigate these obstacles in their everyday life. Our research is informed bythe following conceptual goals & questions:
- To what extent have people with chronic autoimmune conditions been affected in their social lives, social interactions, and self-understandings?
- How do social differences become manifest and inform processes of self-formation for those experiencing themselves as chronically ill? What does chronicity mean for them?
- What are the specific dilemmas of sense-making for people with chronic autoimmune conditions, considering the potential role of diagnostic elusiveness, illness invisibility, ruptured biographical time, and the lack of public knowledge on autoimmunity as a chronic condition?
- Have social and socioeconomic precarities generally increased for people with chronic autoimmune illness or are such precarities, if existing, context-specific?
- What impact does public health policy have on this group of people? Does forced illness disclosure in institutional and social contexts matter in the context of the pandemic?
- How do people with chronic conditions experience periods of social isolation? How do they account for the emotional and social labour that is entailed? How can we understand their agency in this process?
- How do everyday languages and public discourses on chronic illness intersect? What can be learned from this relationship in how people articulate their social selves
Initial Research Assumptions
This research builds on the pioneering work on social suffering in anthropology and chronic illness in sociology. Both disciplines offer theories and concepts for understanding how people make sense of and deal with uncertainties associated with chronic illnesses. This research project is open-ended and challenges some long-held assumptions in the research community. We hope to generate new insights in the following areas:
- We recognize different scales of the problem at hand. The focus of this pilot study rests on the meso- and microsocial levels to better investigate everyday experiences and social interactions/relations.
- We posit that the everyday is not a neutral backdrop but a social space in which selves are formed. The everyday is deeply penetrated by social, political and economic processes.
- We view the precarious terrain of living with chronic autoimmune illness as constituted by a web of social relations of care, survival, loss, and recovery.
- We perceive the social self as intersubjective, in other words, being formed by continuously shaped by meaningful interactions and changing positions in social fields.
Qualitative Sociological Data
We conduct semi-structured and open-ended interviews in the Greater Toronto Area (GTA) with people experiencing chronic autoimmune illness(es). The interviews aim to study key concerns and contemporary social experiences of people with chronic conditions. The preliminary findings of this study will focus on the experiences, feelings, and representations of research participants, who also have had to navigate the specific conditions of the COVID-19 pandemic. Our interviews are scheduled between December 2022 and the summer of 2023. Interviews will be held in English, Mandarin, Punjabi, and Urdu. In the second year of the pilot project, we will communicate our first findings with scholarly communities, community organizations, individuals, and the public. We seek community health organizations’ help in recruiting research participants, communicating our research findings, and developing strategies to address emergent community needs.
- Dr. Michael Nijhawan is a cultural sociologist with two decades of experience in qualitative research in the areas of migration, religion, violence/trauma, cultural identity, and medical sociology.
- Sana Hafeez is completing her MA at York University in Heath Policy and Equity. Her interest lies in food insecurity in the GTA. Sana has held leadership roles in community health organisations and is currently in a management position at United Way Greater Toronto. She is also fluent in Urdu.
- Nishan Kaushall is in the second year of his doctoral program in Sociology at York University. His main interest lies in religion and secularism. He is also fluent in Punjabi.
- Dr. Yikun Zhao has completed her doctoral degree in Sociology at York University. Her main research areas are cultural sociology and sociological theory. She is also fluent in Mandarin.
Department of Sociology, York University,
4700 Keele St, Toronto, ON, M3J1P3
T: 416 736 2100 ext. 77994