“I refer to them as my colleagues”: the experience of mutual recognition of self, identity and empowerment in multiple sclerosis

Abstract

Purpose: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. Method: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. Results: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became “colleagues”. This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. Conclusion: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other’s resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment.

Implications for Rehabilitation

• In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially.

• Stigmatization is commonly experienced among people with MS.

• The recognition experienced from peers create a sense of community.

• We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.

• Empowerment
• identity
• multiple sclerosis
• peer recognition
• social support

Acknowledgements

Sincere thanks to the participants in the focus group discussions for generously sharing their valuable experiences.