"I would love to say it's the fatigue but honestly it's not": Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a debilitating and poorly understood condition which interferes with adolescents' typical development. This study aimed to explore the experience of transitioning into adulthood from the perspective of adolescents and young adults (16-25yo) with CFS/ME. Thirteen young people recruited through a community allied health clinic in Victoria, Australia, participated in semi-structured interviews. Interviews were analysed using reflexive thematic analysis and produced the following themes: Independence: a different path or an inaccessible adulthood? Identity: who could I have been? Isolation and disconnection: being with people but not being like them. Our analysis of these themes suggests several avenues to support young people with CFS/ME and their families. Mental health professionals may have a specific role in helping foster assertiveness and confidence, assisting identity exploration and understanding, and supporting families in helping their adolescent to continue to develop psychologically.

Keywords: Chronic fatigue syndrome; epistemic injustice; identity; independence; myalgic encephalomyelitis.