“The Real Me Shining Through M.E.”: Visualizing Masculinity and Identity Threat in Men With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Photovoice and IPA


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Abstract

Phenomenological research in the context of myalgic encephalomyelitis (M.E.) or chronic fatigue syndrome (CFS) has predominantly explored women’s accounts. Due to the paucity of research highlighting men’s experiences of living with M.E./CFS, the aim of this research was to explore their visual and verbal accounts to gain a more in-depth understanding of how they make sense of their diagnosis and dual identity as a man with a stigmatized, and often misunderstood, chronic illness. Working within a critical health psychology framework, the study used a phenomenological approach and an adapted version of photovoice to gather and interrogate self-authored photographs and interview accounts from 10 men living with M.E./CFS. An interpretative phenomenological analysis of the integrated visual and verbal data led to the development of three themes: “Loss of Masculine Identity as a Man with M.E./CFS,” “Marginalization attached to M.E./CFS and Masculinity” and “Coping with Dual Identity by Adjustments, Assimilation, and Acceptance.” The findings show how men with M.E./CFS cope with identity threat across personal, social, and cultural contexts, while making adaptations in their perceptions and performances of masculinity. We argue that participant-authored photographs could be used by researchers, activists, and practitioners to facilitate increased understanding of and support for men with M.E./CFS.

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