Exploring men's experiences of living with ME/CFS through photographic and interview accounts.

What is it about?

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) is a debilitating chronic condition affecting more than 20 million people worldwide, yet the illness remains poorly understood, especially from the perspective of affected men. Using self-authored photographs and interview accounts from 10 men with ME/CFS, we explore how men experience and make sense of living with a diagnosis of ME/CFS, and how they visually represent the illness experience. The findings illustrate the complexities of living life as a man with ME/CFS, revealing how affected men cope with identity threat across multiple domains, while simultaneously making adaptations in how they perceive and perform masculinities.

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Why is it important?

Our study makes a significant contribution to an underresearched population, highlighting the unique challenges that men with ME.CFS face, such as difficulty receiving social and health care support, due to stigma surrounding the illness and the social and personal expectations as a man to self-manage. Also, participant-authored photography in this context potentially has several benefits, including: facilitating increased understanding of the illness experience for men affected by ME/CFS, researchers and practitioners, and improving care and support provisions for men.

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