Living with motor neurone disease: an insider’s sociological perspective

ABSTRACT

This article is a discussion between two former colleagues and longstanding friends about the lived experience of illness and disability. In January 2013, Kirsten Harley, a promising early career sociologist was diagnosed with motor neurone disease (MND), a degenerative neurological condition with a typical life expectancy of 2–3 years. In this article, which is part interview and part shared reflection, we consider how Kirsten’s knowledge of sociology has shaped her responses to the illness. We ‘discuss’ the process of meaning making, health system navigation, interactions with health professionals, advocacy, becoming a ‘passive activist’, the role of technology and what we, as sociologists, might learn from a life so dramatically changed.

KEYWORDS:

• Motor neurone disease
• Bourdieu
• illness narratives
• communication
• health care system
• time

Acknowledgements

We wish to thank A/Prof Sarah MacLean for her support for this project and generous feedback on the final draft of this article.

Disclosure statement

No potential conflict of interest was reported by the author(s).