Experience of Identity Change in People Who Reported a Diagnosis of Multiple Sclerosis: A Qualitative Inquiry

Int J MS Care. 2019 Sep-Oct;21(5):235-242. doi: 10.7224/1537-2073.2018-069.

Abstract

Background: A diagnosis of multiple sclerosis (MS) can lead to changes to a person's sense of self. The aim of this study was to investigate the subjective experience of identity change and subsequent adjustment to MS.

Methods: Semistructured interviews were conducted with 16 people who reported having MS. Interviews were analyzed using thematic analysis.

Results: In the early stages of disease progression, participants wanted to compartmentalize the disease. Over time, through reflected self-appraisals, brought about by increasing symptoms and changed relationships with others, the disease became a part of participants' self-identity.

Conclusions: For people with MS, incorporating and accepting the disease as part of their self-identity can have positive implications for seeking and receiving support.

Keywords: Adaptation; Coping; Identity; Multiple sclerosis (MS); Self.