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The lived experience of uncertainty in everyday life with MS

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  • Nina Nissen, University of Southern Denmark
  • ,
  • Jeanet Lemche, Independent Researcher
  • ,
  • Camilla Møhring Reestorff
  • Marianne Schmidt, Multiple Sclerosis Hospitals
  • ,
  • Anders Guldhammer Skjerbæk
  • Lasse Skovgaard, The Danish MS Society
  • ,
  • Egon Stenager, University of Southern Denmark
  • ,
  • Inge Gjerrild Søgaard, Multiple Sclerosis Hospitals
  • ,
  • Karen la Cour, University of Southern Denmark

Purpose: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. Materials and methods: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of “phenomenological uncertainty,” a thematic approach was used to analyse the interview data. Results: Three themes characterise participants’ experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. Conclusion: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATION Rehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS. The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice. Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.

Original languageEnglish
JournalDisability and Rehabilitation
Pages (from-to)5957-5963
Number of pages7
Publication statusPublished - Sep 2022

Bibliographical note

Publisher Copyright:
© 2021 Informa UK Limited, trading as Taylor & Francis Group.

    Research areas

  • Bodily surveillance, control, disease progression, everyday life, multiple sclerosis, symptom fluctuation, uncertainty

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