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`When I am together with them I feel more ill.' The stigma of multiple sclerosis experienced in social relationships

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

Per Måseide

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

Objectives: We explored the stigma that people with multiple sclerosis (MS) experienced in social relationships. Informed by the symbolic integrationist paradigm, this sociological study focuses on the creation of personal identity through interaction with others. The symbolic interactionist account of stigma examines the meaning and reality being negotiated in communication with others.

Methods: Fourteen people with MS and their relatives were interviewed. The unstructured interviews were tape-recorded, transcribed and coded in accordance with the procedure of grounded theory.

Results: Informants reported being ignored or, in contrast, having people overemphasize MS in interpersonal encounters. Although people tried to act tactfully, these acts were experienced as crucial stigmatizing. Informants were coping to counteract stigmatizing experiences in social relationships.

Discussion: People with MS perceive that their bodily performance and impression management is being judged in interpersonal encounters. Being ignored or perceiving that MS is overemphasized indicates the dilemma of managing stigma in social networks. Consequently, during interaction and in social relationships, people with MS experience a sense of `feeling more ill'. This paper describes strategies of networking to affirm self and identity.

Key Words: Coping systems • Embodiment • Multiple sclerosis • Social networks • Stigma

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