‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome

Abstract

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common disabling illness in adolescents that may limit participation in daily life.

Aim: This study explored interactions between the illness experiences of adolescents with CFS/ME, their occupational lives and expectations for the future.

Methods: Seven adolescents with CFS/ME were interviewed. The interviews were analyzed using thematic analysis.

Results: Three themes were developed. ‘Being ruled by an unfamiliar and inexplicable body’, which illustrated that altered and strange bodies seemed to separate and disrupt the participants from their former occupational lives. ‘On the sideline of life with peers’, which demonstrated that the informants spent time at home, doing undemanding activities instead of participating in activities with peers. ‘A coherent connection between present and future life’, which was reflected by how the participants eventually accepted their situation and rebuilt a meaningful occupational life and value of self.

Conclusion: CFS/ME made the body unfamiliar and disconnected informants from participating in their usual daily occupations. A coherent interaction between body, occupational life and social self was achieved by taking their new body into account and adjusting their occupations accordingly. This practice enabled the participants to hope for a better future life.

Keywords:

• CFS/ME
• illness experience
• interactions
• occupational life trajectory
• recovery
• young

Acknowledgements

The authors thank the participants who shared their experiences and reflections. We thank Vegard Bruun Bratholm Wyller, Anette Winger, Kari Gjersum, Dag Sulheim and Even Fagermoen in the NorCAPITAL study for support, patient recruitment and collaboration. We also thank Kari Nyheim Solbraekke for contributions in developing the interview guide, and Lillebeth Larun for useful discussions and support. Finally, thanks to Oslo University Hospital, Section of Orthopaedic Rehabilitation, and Norwegian National Advisory Unit on CFS/ME for support.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.