Revisiting chronic illness: Theories, critiques, explorations: Embodying/disrupting medical relations

The recognition that chronic, noncommunicable conditions now account for the greatest burden of global mortality and an equal, if not greater, share of global morbidity, suggests the need for renewed scholarly investigation of chronicity, illness experience, and health care. Recent contributions have already begun to reshape the field. For example, established concerns about chronic illness, the body, biography, agency, and identity formation have been joined by a growing interest in how large-scale structural relations of the economy, politics, social inequality, racialization, industrialization, urbanization, and the social organization of health care factor into the determination what diseases become chronic. Still other work draws on the embodied experience of suffering to call into question the very utility of distinguishing chronic from acute diseases. This session invited papers that continue the work of reinvigorating the sociological study of chronicity and illness. Tags: Culture, Disabilities, Health and Care

Organizers: Eric Mykhalovskiy, York University, Leigha Comer, York University; Chair: Leigha Comer, York University

Presentations

Elizabeth Cameron, Queen's University

Phenomenology of (un)diagnosis: The embodied frictions of endometriosis

Endometriosis is a chronic, progressive inflammatory pain disease that affects a significant (~10-15) percent of women of reproductive age (Ellis, Munro, and Clarke 2022). Its rendering as a feminized, gendered disability (Jones 2021) obscures the condition from medical and social scopes of concern, resulting in a prolonged lack of funding directed towards improving treatment for those affected. Current best care practices for people with endometriosis are flawed and may be completely ineffective in reducing suffering. Furthermore, endometriosis is epidemiologically understood through a narrow scope which homogenizes knowledge and care for a disease with an anything-but homogenous pathology. When medical practice in Western capitalist societies does consider bodies with endometriosis, it is to maximize the body’s potential fertility and adherence to a linear, able-bodied, cis-heteronormative timeline for the body’s reproductive future, while pain and other symptoms are dismissed as unsolvable, vexatious puzzles. Queer, feminist disability scholarship has called for intersectional research which expands knowledge about chronic illnesses, including endometriosis, as lived by bodies which have been historically overlooked by the white, andro-centric, cis-heterosexual regime of Western capitalist medicine. Through a semi-autoethnographic approach to writing critical feminist disability studies, this paper explores a phenomenology of diagnosis – or more precisely, a lack thereof – so as to challenge the body with endometriosis’ assumed textures and experiences cast by medical and social models of disability. As someone with suspected endometriosis, I explore how the liminality of undiagnosed illness is an embodied point of friction which simultaneously offers the possibility of queering the body’s imagined future (Kafer 2016) and ways of being in the world. The paper builds on the work of queer disabled feminist scholarship to further include people with chronic illnesses and impairments, in particular endometriosis, in critical feminist disability studies.

Yikun Zhao, York University

The Self in Time Revisited: A Narrative Analysis of Biographical Accounts on Living with Chronic Autoimmune Illness

The importance of self to the chronically ill has been documented in existing literature, often in discussions around the idea of biographical disruption (Bury 1982, Charmaz 1993, Williams 2000). For individuals living with chronic autoimmune conditions, both the intrusiveness of chronic conditions that trigger a sense of loss of former self and such medical conditions that blur the boundary between self and non-self makes the struggle over ‘self’ crucial to understanding these illness experiences (Cohen 2017, Katz 2018). Against this background, this paper builds on an unexamined insight from Kathy Charmaz’s (1993) pioneering work; specifically, that the taken-for-granted manner of anchoring the self in a temporality marked by the past, present, and future is socially configured. We analyze this under-explored observation in a specific context. Building on the grounded theory approach, we present a narrative analysis of individuals from diverse cultural and ethnic communities in the GTA and their experiences of living with chronic autoimmune illnesses. Our research is informed by qualitative interviews and takes stock of three decades of sociological and anthropological research work on chronic illness. Through examining how individuals navigate time structures and perspectives in relation to events as turning points in their illness narratives, we suggest three intersecting sociocultural processes that contribute to shaping varied temporalities of self: (1) socio-culturally cultivated perceptions of biographical time that challenge linear concepts of time, (2) a heightened the sense of uncertainty perpetuated by global events like the Covid-19 pandemic, (3) and the rise of therapies as a prominent mode of medical treatment (Wolf-Meyer, 2014). Exploring the temporalities of self through analyzing these socio-cultural processes helps us to understand better how individuals living with chronic autoimmune illnesses take control of their illnesses when struggling with loss and how they possibly strive for self-transcendence.

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Non-presenting authors: Michael Nijhawan, York University; Nishan Kaushall, York University

Jenna Scali, Lakehead University

The Impacts of Chronic Pain: Exploring the Experiences of Northwestern Ontario Women

This research project explores women’s experiences with chronic pain in Thunder Bay, Northwestern Ontario. Using a feminist intersectional narrative approach, I analyze how the medical system in Thunder Bay poses unique barriers to women accessing health care, which impacts their chronic pain experiences and sense of self. In-depth interviews with eight women between the ages of 18-50, who self-identify as having chronic pain were conducted to understand their chronic pain narratives. Preliminary findings suggest that the two major barriers women face in accessing the healthcare system are the geographic location and gender bias. Participants recognize that Thunder Bay has a shortage of doctors and lacks access to specialized health care services, such as advanced care in chronic pain services and specialists who understand female-specific pain symptoms. This leads to long wait times and a lack of care. Women also recognize that their identity as a woman with chronic pain has led to dismissal from doctors who do not take their pain seriously or do not believe their pain symptoms. Women’s experiences in the healthcare system have resulted in a lack of trust in medical professionals, increased pain symptoms, and self reliance for pain management. Women find they must advocate for themselves during medical appointments and when they are dismissed, they often do their own research to find a diagnosis. Finally, these womens sense of self has been impacted by their treatment in the medical system as they try to navigate their own grief and acceptance of their chronic pain, alongside the ignorance and dismissal that have defined their experiences. This research adds to our understanding of women’s experiences with the healthcare system, as well as the impacts of chronic pain on women’s sense of self and identity.