Narrative medicine pinpoints loss of autonomy and stigma in Parkinson’s disease

Abstract

Abstract Parkinson’s disease characteristics can create a self-perceived sense of stigmatization and disapproval by others, thereby affecting self-perceived autonomy. This study investigated the metaphors related to the loss of autonomy and stigma in stories and drawings of Parkinson’s disease. We compare a contemporary first-person illness narrative and -drawing from a person with Parkinson’s disease, with two novels (Jonathan Franzen’s The Corrections and Claudia Piñeiro’s Elena Knows), a graphic novel (Peter Dunlap-Shohl’s My Degeneration: A Journey Through Parkinson’s), a non-fiction book (Oliver Sacks’ Awakenings) and a first-person illness narrative (John Palfreman’s The Bright Side of Parkinson’s). Metaphors in the patient narrative, novels, and non-fiction work were reviewed and a list of themes or categorizations common to 2 of the metaphors was generated. Parkinson’s disease metaphors indicate a ‘Parkinson’s prism’ thereby depicting extreme experiences (24.4%) like a ‘fall by mischance’, a ‘tantrum of selfish misery’ or a ‘bottomless darkness and unreality’ (Table 1). Both novels signify a sense of ‘betrayal and disconnection’ in the Parkinson’s disease experience while non-fiction of Parkinsonism depicts a space in which one feels ‘caged and deprived’. This makes the Parkinson’s disease narrative a chaos story that could influence the decision to initiate treatment and treatment adherence. We conclude that narrative medicine can help to focus the medical consultations with affected individuals on issues that matter most to them, thereby improving self-perceived autonomy and stigma. As such, it is a critical component of the much-needed move towards personalized medicine in Parkinson’s disease, achieved through the reciprocity of thinking with stories.