Constructing the detecting stage: Social processes and the diagnostic journey of early onset Parkinson’s disease

Abstract

AbstractParkinson’s is a neurodegenerative disorder that mostly affects people over the age of 65; however, a significant number (10%) of the diagnosed cases are under the age of 50 (Young Onset Parkinson’s disease). It has multiple symptoms; it is difficult to diagnose and its progression cannot be intercepted. This article focuses on the experience of the diagnostic process as narrated by individuals who were under the age of 50 when diagnosed. Analysis of in‐depth interviews with 17 individuals with Parkinson’s disease inductively reveals a ‘detecting stage’, a period during which they visit different doctors, undertake many examinations and experience bodily symptoms with impacts on their mental health. The diagnostic process, which usually lasts over 2 years, often leads to misdiagnosis and or late diagnosis (a) on account of the individual’s young age and social meanings attached to it, usually by doctors, whose discourse appears to be rather psychologised and (b) is perceived as disruptive to individuals’ biographies. Due to the tendency to over‐attribute bodily symptoms to psychological problems, accurate diagnosis is experienced as redemption.