After the Tango in the Doorway: An Autoethnography of Living with Persistent Pain

In Marc A. Russo, Joletta Belton, Bronwyn Lennox Thompson, Smadar Bustan, Marie Crowe, Deb Gillon, Cate McCall, Jennifer Jordan, James E. Eubanks, Michael E. Farrell, Brandon S. Barndt, Chandler L. Bolles, Maria Vanushkina, James W. Atchison, Helena Lööf, Christopher J. Graham, Shona L. Brown, Andrew W. Horne, Laura Whitburn, Lester Jones, Colleen Johnston-Devin, Florin Oprescu, Marion Gray, Sara E. Appleyard, Chris Clarke, Zehra Gok Metin, John Quintner, Melanie Galbraith, Milton Cohen, Emma Borg, Nathaniel Hansen, Tim Salomons & Grant Duncan (eds.), Meanings of Pain: Volume 2: Common Types of Pain and Language. Springer Verlag. pp. 17-35 (2019)
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Abstract

Persistent pain is a common health problem and increasingly, qualitative research is being used to explore the impact on daily lived experience. Stigmatisation and “othering” is reported in these studies, and health professionals indicate they struggle to know how best to help this group of people. In this autoethnography, I provide an account of my life as a clinician, educator, researcher and social media commentator who lives with fibromyalgia. Through this narrative I consider the social factors influencing my attitudes towards my own pain over time, and the position I hold as a member of many different social groups discussing persistent pain management.Clinical ImplicationsPeople seeking help for their pain are influenced by family habits and attitudes towards healthcare and accepting clinical opinion.Although persistent pain is common, “othering” or the tendency to see those with persistent pain as different from clinicians is frequently encountered. This may be inadvertent but results in stigma.Information about pain mechanisms is insufficient for supporting a new way of living life for people with persistent pain.People with persistent pain may reject the narratives of people who have learned to live well with their pain, and this can be isolating and difficult to deal with.There is little research investigating how clinicians advise people of their persistent pain diagnosis, leaving a gap in our understanding of the best way to convey this information.Researchers who themselves live with persistent pain provide a unique insight into what it is like and may offer new ways for clinicians to carry out their work.

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B. Thompson
Concordia University

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