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“Taming the Beast”: Exploring the Lived Experience of Relapsing Remitting Multiple Sclerosis Using a Life History Approach

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Abstract

Background and Purpose

The aim of this study was to gain insights and understanding into the lived experience of relapsing remitting multiple sclerosis (RRMS) in order to better inform patient-centerd nursing and healthcare.

Methods

This qualitative study used life history methodology, a form of focused ethnography, to explore the life history of 13 study participants living with RRMS. Semi-structured interviews were transcribed and analysed using thematic analysis.

Findings

A total of eight key themes emerged, explaining the journey of living with RRMS. Commencing with “Piecing Together the Puzzle” of symptoms at the beginning of the RRMS journey, followed by “(Re)defining ME now that I have RRMS,” “Battling the Demons,” the experiences of “Surplus Suffering,” negotiating “High Invisibility,” gaining control by “Taming the Beast,” learning “The DMT Dance,” and ultimately “Holding Hands with Hope,” expressing hope and practising purposeful positivity.

Implications for Practice

The eight key themes of living with RRMS were reflective of the ebbs and flows of life. By gaining these insights into the world of people living with RRMS, it is anticipated that clinical nursing care and quality of life for people living with this chronic neurological disease may be improved.

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