‘There was no great ceremony’: patient narratives and the diagnostic encounter in the context of Parkinson's

This paper draws on stories of diagnosis that emerged from a broader narrative study exploring the lived experience of Parkinson's (n.37). Despite the life-changing nature of their diagnosis, participants' narratives highlighted considerable shortcomings in the way in which their diagnostic encounter was handled, echoing the findings of previous research in which it has been noted that ‘the human significance’ of diagnosis was passed over. Building on the literature, this paper provides empirical material that reveals the sensitivities involved at the moment of diagnosis. By examining both the structure and content of participants' narratives, this article discusses the diagnostic encounter in relation to three key concepts that connected many participants' stories: a ‘bareness’ or lack of ‘ceremony’, a sense of emotional and physical ‘abandonment’ and the impact on a person's illness story when faced with a ‘hierarchy’ of illness. This paper aims to raise awareness of contemporary issues related to the diagnosis of Parkinson's, and invites reflection on how diagnosis might be undertaken in a way that truly acknowledges its human significance.