poeMS: an exploration of poetry as a way to communicate lived experiences of multiple sclerosis

Abstract

This study examines whether poetry written by people with multiple sclerosis (MS) may be a useful form for reflecting on their illness experiences. Much recent illness writing comprises prose narratives conforming to either the restitution or quest tropes (Frank, 2013), however these models may be unhelpful for people with MS because of their focus on cure or their moral imperative to personal growth. Poetry is increasingly used by social science researchers to present participant interview data and facilitate different ways of knowing than traditional prose texts. This research takes the novel approach of exploring poems written in the study by participants with MS.

Nine people living with relapse-remitting, primary progressive or secondary progressive MS were recruited to the online study through MS charity websites and social media. They participated in one initial semi-structured interview about their MS experiences, and then took part in four group poetry workshops. The researcher also has MS and the methods of data creation were designed to be collaborative. Follow up semi-structured interviews were conducted so participants could reflect on their study experiences. Four contacts of the original participants were also recruited into the study. These ‘reader participants’, who did not have MS, read some of their contacts’ study poems and participated in one semi-structured interview about the experience.

Holistic discourse analysis of poems and spoken interview and workshop data was guided by Bakhtin (1984, 1986) and Gee (2014). This analysis identified three key themes in participants’ poems and spoken data: being MS patients in relation to medical teams; MS in the workplace; and social impacts of MS. Further analysis revealed the obstacles faced by participants in these different settings and illuminated the ways in which they constructed their identities in order to negotiate or minimise these challenges. Participants’ poetic inquiries incorporated phenomenological, social and political reflections in both narrative and non-narrative poems. Participants derived positive outcomes from working collaboratively together in poetry workshops and also from sharing their poems with each other, me, and a small number of their family, friends or carers. I conclude that poetry offers a novel method for people living with MS to contribute to personal and academic discourse on health and disability.