Learning and Long-Term Illness

Between 1982 and 1993, Susan Sapsed kept a diary that is referred to throughout this book. She began this diary when she was 37 years of age, convinced that she was suffering from Ménière’s disease (a disorder of the inner ear). Nearly 40 years later, Susan discovered the diary by chance. It told a story of personal illness, practitioner misunderstanding, patient frustration and familial loss. It was clear to the authors of this book that it could be used as a starting point for a meditation on patient power and powerlessness, and as an analytic comparison between healthcare systems at play in the past and in the present.

Using psychoanalytic frameworks, this book invited a more mature Susan to reflect on her earlier self and on treatment that was not always worthy of the name. It explores ideas of agency and what purpose a diary really serves. Although the diary is not presented in its entirety, some passages have been left unedited. The book explores the earlier contributions, presenting a narrative that combines the old and the new.