MS and me: exploring the impact of multiple sclerosis on perceptions of self

Abstract

Purpose: The aim of this qualitative study was to explore the impact of multiple sclerosis (MS) on perceptions of self as well as the emotional, social and practical implications of any self-reported changes. Method: Twelve participants were interviewed and interpretative phenomenological analysis used to analyse the data. Participants were recruited from a MS hospital clinic in the north-west of England. Results: Four themes were identified although for reasons of space and novelty three were discussed, (i) ‘my body didn’t belong to me’: the changing relationship to body, (ii) ‘I miss the way I feel about myself’: the changing relationship to self and (iii) ‘let’s just try and live with it’: incorporating yet separating MS from self. Conclusions: The onset of MS was seen to impact upon self yet impact did not necessarily equate with a loss of self but rather a changed self. Self-related changes did, however, carry the potential to impact negatively upon a person’s mood and psychological functioning and consequently, clinicians are encouraged to consider issues relating to self as standard.

Implications for Rehabilitation

• The onset of MS does not automatically bring into question a person’s sense of self. Rather, it is the degree to which symptoms impact upon a person’s ability to fulfil roles integral to their pre-MS self, that appear to have the greatest re-defining impact.

• Symptoms that threaten perceptions of self are more likely to contribute to emotional problems such as depression and anxiety.

• Clinicians can support people to maintain a positive sense of self by assessing which symptoms affect them most and, where possible, helping them reconnect with valued interests, roles and activities, albeit in an adapted fashion.

Keywords::

• Identity
• multiple sclerosis
• self

Acknowledgements

With special thanks to Dr. Mike Boggild, Kerry Mutch and Pam Lewis for all of their help and support.

Declaration of Interest: The authors report no conflicts of interest.

Notes

¹Within this paper, the construct of self has been conceptualized as a sense of personal continuity, however described.

²Pseudonyms, selected by the participants, are used throughout this paper to protect anonymity.