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`What is expressed is not always what is felt': coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis

National Multiple Sclerosis Competence Centre, Department of Clinical Medicine, Neurology Section, Haukeland University Hospital, N-5021 Bergen, Norway, nina.grytten{at}helse-bergen.no

Per Måseide

Department of Social Science, Bodø University College, N-8049 Bodø, Norway

Objective: In this study, we investigated the stigma experienced by people with multiple sclerosis (MS) and their relatives. We describe coping as impression management of the body to counteract stigma and illegitimacy.

Methods: Fourteen people, including those with MS in the middle and later stages of illness, and their relatives were informally interviewed. The interviews were tape-recorded, subsequently yielding a 500-page document.

Results: The findings point to the embodied perception of illegitimacy as a dimension of stigma. Informants reported instrumental and affective advantages of purposefully concealing or informing about their MS to influence social judgement in interpersonal encounters.

Discussion: MS sufferers apply a tactic of protective disclosure by which they seek to guard their sense of self. The strategy of preventive disclosure is employed to obtain assistance from others. Furthermore, the strategy of concealing MS is conducted purposefully to prevent the sufferer being deprived of social belonging, especially with regard to work.

Key Words: Coping • Embodiment • Illegitimacy • Multiple sclerosis • Stigma

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