Lara Jost – CEPPA Work-In-Progress Talk

Title: The Labours of Chronic Illness

Abstract: In this presentation, I aim to explain the three types of labour- administrative labour, hermeneutic labour and epistemic labour- that chronically ill people have to engage in to get good care. The goal is to highlight why being chronically ill is often considered by many chronically ill people to be a full-time or part-time job, often without being recognized as such by others. I focus on the epistemic labour and the hermeneutic labour and explain why they are disproportionately higher when it comes to certain chronic illnesses. I argue that this higher cost is in part the result of a deep disagreement about how these patients should testify about their illness, caused by a cluster of types of epistemic injustices. To illustrate this dynamic, I attend to the applied case of endometriosis, a gynaecological chronic illness causing pelvic pain and infertility. Finally, I offer some avenues for improvement that the healthcare system could focus on to lessen the epistemic and hermeneutic labour of chronic illness and improve the lives of chronically ill people.