The lived experience of uncertainty in everyday life with MS

Abstract

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.

Keywords:

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

Acknowledgements

Many thanks to the research participants for their generous sharing of their stories and lives. This work was supported by The Danish Multiple Sclerosis Society, under Grant A34952. NN and JL would like to thank REHPA – The Danish Knowledge Centre for Rehabilitation and Palliative Care where they were affiliated during the study and the funder for their financial support.

Disclosure statement

No potential conflict of interest was reported by the author(s).