Powerless Patient: Reclaiming Agency through Patient Narratives

Abstract

This thesis aims to rename the term ‘illness narrative’ to a more disclosive writing called the ‘patient narrative’ as a means to focus on the patient as a person who experiences illness, instead of the illness label. Exploring patient narratives, such as Susannah Cahalan’s Brain on Fire: My Month of Madness, as a form of disclosive writing will highlight the need for this tool to act as a more personal and effective communication between patients, healthcare professionals, and caregivers. The thesis is presented in two parts: a critical essay and my patient narrative. Part One is a critical essay that explores how engaging with patient narratives contributes to the patient reclaiming their agency and sense of identity. In three subsections, the essay highlights the difficulties patients go through with illnesses or rare medical events, as well as the emotional and physical impacts that they experience, going beyond medical symptoms. The essay focuses on three points separated into three sections. The sections are: Recognizing Pathologies and Injuries, Communication and Language in the Patient Experience, and Reclaiming Agency. Part Two is my autopathography centring on the complications encountered while seeking a common surgery. After general anaesthesia, I develop Postoperative Cognitive Changes of unknown aetiology. This greatly complicates the situation when surgery is needed, and the ensuing cognitive impairments have lasting impacts on me academically, personally, emotionally, and socially. While both parts are distinct, together they mirror how patient narratives have the iv potential to bridge the communication gap between medicine and humanities. As such, patient narratives can communicate connections between patients, medical communities, and a broader audience which acts to underscore the need of a deeper awareness for the importance of compassion and empathy for those experiencing any form of health challenge.