The politics of disruption and repair in chronic illness 

Abstracts

Gendering Chronic Illness in Patient Advocacy

by Ahalya Ganesh, Tampere University; with Maria Temmes and Lilli Aini Rokkonen

Gendered discrepancies in the emergence and care of different diseases, such as cardiovascular diseases, have been increasingly discussed in the 21st century. Different ways of mobilizing gender also shape the ways in which patient organizations can respond to ongoing changes in healthcare infrastructure and practices of care. However what constitutes gender in these discussions is ambiguous. In this paper, we examine how the concept of gender travels from biomedical discourse into the work of patient organizations, who are representatives of and mediators between patients, and medical and societal institutions. By focusing on three Finnish patient organizations representing differently gendered chronic conditions, we ask when does gender appear and disappear in their conceptualization of the illnesses, and why and how it becomes salient. We show that gendered conceptualizations are not straightforward in the work of patient organizations, and that links to gender can raise contestations or be seen as hampering the organization’s goals. We explicate how patient organizations’ work is born out of a need to address gaps in the healthcare system that leaves its constituents debilitated.

Endo Episteme: Epistemic Injustice and the Misrecognition of Endometriosis

by Ina Hallström, Stockholm University

The relation between knowledge and the identity of the knower has been well explored within feminist and social epistemology. In recent years, Miranda Fricker has reinvigorated the discussion by addressing the epistemic injustice involved in everyday epistemic practices – “those human practices through which knowledge is gained, or indeed lost”. In this paper, I bring Fricker’s concept into conversation with the recognition theory of Axel Honneth to discuss the chronic illness endometriosis. “Endo” is manifested by the presence of endometrial-like tissue outside the uterus, and is associated with chronic pain and infertility. The gendered nature of the condition and the difficulties in receiving recognition, diagnosis, and treatment make endo a suitable case for exploring epistemic injustice as a process of misrecognition, affecting both the knowledge and self-relation of the potential knower.

Based on interviews with 15 individuals diagnosed with endo in Sweden, I explore the epistemic practises of the journey towards knowledge about endo, what I call endo episteme. I identify three epistemic processes which help us understand the intersubjective sense-making where knowledge is gained, negotiated, or lost: becoming a knower, becoming a patient, and becoming knowledge. In relation to these processes, I discuss key epistemic practices of disruption and repair, including “comparing-with”, “a pedagogy of pain”, and “epistemic activism”.

Gendered chronic pain, embodied experiences and clinical encounters

by Venla Oikkonen, Tampere University; with Elina Helosvuori

The practices of assessing and treating chronic pain are currently undergoing changes arising from healthcare rationalization initiatives, global drug shortages and public debates about pain medication and addiction, especially the use of opioids. In this paper, we examine the experiences of living with and managing pain in a gendered chronic illness, endometriosis. In endometriosis, cells similar to endometrial tissue grow outside the uterus causing persistent, possibly paralysing pain. Previous studies have shown how people with endometriosis struggle to achieve accurate diagnosis and effective treatment. Our presentation explores how people living with endometriosis adapt to the evolving biomedical and lived surroundings in which their pain is evaluated and negotiated. Drawing on interviews with people diagnosed with endometriosis in Finland, we show how living with chronic pain requires constant observation of the multitude of symptoms and their effects on the ability to function in day-to-day life. We explore how endometriosis affects the embodied existence of our interlocutors and how they translate their experiences of pain in clinical encounters to ensure recognition and the continuity of care. Through our analysis, we highlight the importance of understanding the interrelationship of sensing and observing pain in practices of treating chronic illness.

Beyond Covid? Using patient knowledge to improve the care and management of Long Covid sufferers

by Jesper Petersson, University of Gothenburg - Department of Sociology and Work Science; with Lisa Lindén and Doris Lydahl

In this presentation, we present a newly started 4-year project on Long Covid, patient knowledge and epistemic communities. The project examines how Long Covid sufferers assemble, produce and mobilize knowledge about their emergent condition, and consider how this knowledge is recognized by the medical community and its wider circle of actors. The project will focus on three identified arenas of sufferers’ knowledge production and/or mobilization: among individual sufferers, in online Facebook support groups and collective patient mobilization via the Swedish Covid Association and the network Doctors to Doctors. The following research questions guide the project: (1) What knowledge about Long Covid do sufferers generate from their embodied and lived experience, and how do they use it?; (2) What knowledge do sufferers accumulate about Long Covid through the sharing of experiences with other affected, and how do they do so?; (3) What knowledge do Long Covid sufferers mobilize to improve the care and management of Long Covid, and how do they do so?; (4) What are the implications of 1-3 for the improvement of Long Covid care andmanagement? To answer these questions, we will conduct interviews, do ethnographic observations of public meetings and events and analyze individuals’ Facebook postings as well as diverse documents. We will also arrange dialogue workshops with patient representatives, researchers and health professionals. Through the project’s focus on both sufferers’ individual and collective knowledge processes, we aim to contribute to the existing STS body of research on patient knowledge and patient organizing.

Gendering Chronic Illness in Patient Advocacy

by Lilli Aini Rokkonen, Tampere University; with Maria Temmes and Ahalya Ganesh

Gendered discrepancies in the emergence and care of different diseases, such as cardiovascular diseases, have been increasingly discussed in the 21st century.Different ways of mobilizing gender also shape the ways in which patient organizations can respond to ongoing changes in healthcare infrastructure and practices of care. However what constitutes gender in these discussions is ambiguous. In this paper, we examine how the concept of gender travels from biomedical discourse into the work of patient organizations, who are representatives of and mediators between patients, and medical and societal institutions. By focusing on three Finnish patient organizations representing differently gendered chronic conditions, we ask when does gender appear and disappear in their conceptualization of the illnesses, and why and how it becomes salient. We show that gendered conceptualizations are not straightforward in the work of patient organizations, and that links to gender can raise contestations or be seen as hampering the organization’s goals. We explicate how patient organizations’ work is born out of a need to address gaps in the healthcare system that leaves its constituents debilitated.

Organizers

Venla Oikkonen, Maria Temmes and Ahalya Ganesh (Tampere University)