Leaky Bodies and Everyday Disclosure and Exposure in the Neurodegenerative Illness Stories of Younger People With Parkinson’s Disease

Parkinson's disease (PD) is most often diagnosed in late middle age and old age (mid to late 60s), leaving younger people with PD facing uncertainties and the long-term challenge of life with a neurodegenerative illness. To advance understanding of the psychosocial burden associated with PD for younger people, we explored PD disclosure narratives with 22 participants diagnosed before 55 years of age. For people with neurodegenerative illness, sharing a diagnosis is only partly scripted and limited to discrete interactional events. We also consider narratives of social isolation, an impact that is not readily recognised because biomedicine mainly addresses older people with PD. The PD body discloses itself in ways that are not always controllable, nuancing sociological understanding of illness narratives to accommodate neurodegenerative illness. With reference to sociological understandings of the 'leaky' body and scholarship on disclosure, exposure and related perspectives on social life, we explored social expectations to explain the PD body, the avolitional, repetitive and continual qualities of these expectations and the impact of these dynamics on wellbeing.