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"It's like being a slave to your own body in a way": a qualitative study of adolescents With chronic fatigue syndrome

Njølstad, Berit Widerøe; Mengshoel, Anne Marit; Sveen, Unni
Journal article, Peer reviewed
Accepted version
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Postprint. Embargo 2019-04-01 (339.2Kb)
URI
https://hdl.handle.net/10642/6697
Date
2018-04-01
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  • HV - Institutt for rehabiliteringsvitenskap og helseteknologi [466]
Original version
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/10.1080/11038128.2018.1455895
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 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.
Publisher
Taylor & Francis
Series
Scandinavian Journal of Occupational Therapy;
Journal
Scandinavian Journal of Occupational Therapy

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