Shame, Chronic Illness and Participatory Storytelling. (December 2022)

• Record Type: Journal Article
• Authors: Stage, Carsten
• Is Part Of: Body & society. Volume 28:Number 4(2022)
• Page Start: 3
• Page End: 27
• Publication Date: 2022-12
• Subjects: affect -- chronic illness -- participatory research -- problem space -- shame -- social media; Human body -- Social aspects -- Periodicals; 306.4613
• DOI: 10.1177/1357034X221129752
• Languages: English
• ISSNs: 1357-034X

Abstract

The article explores the complex roles shame plays in the lives of people with one or more chronic conditions. This is achieved through a participatory research process in which people with chronic conditions were invited to share stories of shame on the public social media profiles of a peer-led patient community called 'Chronic Influencers'. The crowdsourced material shows that 7 out of 10 experience shame in relation to their illness on a daily or weekly basis. Other findings are that shame seems to stick to 'energetic failures' of the slow or tired body in various social situations; shame is predominantly produced or anticipated in the intimate sphere; and shame can be 'rescripted' as culturally produced and politically contestable – and thus counter the pressure to individualise health as a project of personal improvement and self-inspection – when it is shared through voluntary storytelling among peers on social media.