Walking with McArdle disease: alienation and solidarity in a rare disease journey
Abstract
Narrative reveals what the author wants to share with the reader. I present an analysis of a literal, physical journey made by a rare disease patient – a trek across Wales. Prominent themes include the alienation of having a rare disease, but also a strong sense of companionship in the journey, and the normal pleasures and tribulations of walking the British countryside.
Keywords
Full Text:
PDFReferences
Jessop E. The quest for diagnosis – a narrative analysis of patient journeys. Rare diseases orphan drugs 2014; 1: 109-115.
Reason SL. One step at a time. Walking with McArdle disease. Droxford: Association for Glycogen Storage Disease (UK) 2013.
Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006; 3: 77-101.
Cornwall S. Telling stories about intersex and Christianity: saying too much or not saying enough? Theology 2014: 17 – 33.
Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs NJ: Prentice Hall 1963.
Armitage S. Walking home. London: Faber and Faber 2013.
Fiennes R. Mind over matter. London: Sinclair-Stevenson 1993.
MacIntyre A. Dependent rational animals. London: Duckworth 2009.
