Art-making and identity work: A qualitative study of women living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

Abstract

Aims: Identity is at risk in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) because of physical dysfunction, role loss and stigmatisation. This qualitative study explored the contributions of leisure-based art-making to the positive reconstruction of identity for women living with this condition.

Method: Thirteen women with CFS/ME participated. They offered reflective accounts about their engagement in art-making in interviews or in writing, which were then thematically analysed.

Findings: All described identity loss since becoming ill, and described art-making as offering restorative experiences. Some contrasting themes emerged. About half of the sample portrayed their art projects as constrained by ill-health, and as demonstrating the reality of CFS/ME to others. This sub-group struggled with limited aspirations, tended to create art alone and did not identify themselves as being artists. They were interpreted as “salvaging” aspects of identity through their art-making. Art-making appeared to offer others more substantial identity reconstruction, despite continuing ill-health. Participants in this sub-group described more positive aspirations, fellowship with other art-makers and typically perceived themselves as having become artists since the onset of illness.

Conclusion: The study contributes new understandings of the contribution of art-making to the protection and reformulation of identity of people living with CFS/ME.

Keywords:

• chronic fatigue
• art
• leisure
• identity

Acknowledgements

The authors are grateful to the Arts and Humanities Research Council (UK) for supporting this project, and thank the participants for their generous contribution.