"It's like being a slave to your own body in a way": a qualitative study of adolescents With chronic fatigue syndrome
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2018-04-01Metadata
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Njølstad, Mengshoel AM, Sveen US. "It's like being a slave to your own body in a way": a qualitative study of adolescents With chronic fatigue syndrome. Scandinavian Journal of Occupational Therapy. 2018 http://dx.doi.org/10.1080/11038128.2018.1455895Abstract
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 analysed 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.