Difficulties in adjustment to multiple sclerosis: vulnerability and unpredictability of illness in the foreground

Abstract

Purpose: Multiple Sclerosis (MS) is a progressive neurological disease characterized by an unpredictable risk to develop relevant disability over time. Few studies focused on the core psychological features of difficulties in adjustment to MS. This qualitative study aims to explore the illness experience of people with difficulties in adjustment to MS, paying more attention to both illness representation and shifting perspective.

Method: Nineteen persons with difficulties in adjustment to MS participated in the study and their interviews were analyzed using thematic analysis.

Results: Considering the Shifting Perspective Model, illness is rigidly placed in the foreground, and wellness decisively pushed in the background, with a lack of flexibility in shifting between the two perspectives. The thematic analysis delineated three main topics: illness representation; coping strategies; relationships with others. The illness representation is characterized by invalidating symptoms; unclear cause; sudden onset; unpredictable course and uncertain prognosis; severe impact on person’s functioning; and low sense of internal control. Participants reported to mainly use emotion-focused coping strategies.

Conclusions: Adjustment can be supported activating psychological intervention addressed to patients’ illness representations and more flexibility in the shifting between illness and wellness in the foreground.

Implications for Rehabilitation

• Adjustment to MS is influenced by illness perception. It is important to pay more attention to contents about vulnerability and unpredictability associated to MS.

• With regards to the Shifting Perspectives Model, difficulties in adjustment are related to the rigidity that prevents an adequate shift between the two perspectives (illness and wellness), with the predominance of the illness perspective in the foreground. Hence, it is important to assess the shifting perspectives preference and flexibility, and the contents of illness representation of a person with MS.

• Clinicians can support process of adjustment, activating psychological intervention addressed to patients’ illness representations and promotion of a more flexibility in the shifting between illness and wellness in the foreground.

• The Illness Representation Model should be enriched by a social component, able to take into consideration the impact of the disease on interactions with others.

Keywords:

• Adjustment
• coping strategies
• illness perception
• illness representation
• multiple sclerosis
• qualitative study
• shifting perspectives model

Acknowledgements

The authors are grateful to all persons living with MS who participated in this study.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.