The Four Seasons

Humanist arts-informed research on the experience of the body and self among young people living with cystic fibrosis (CF) remains under-investigated. We explored the embodied experiences of the body, self, self-esteem, identity, and apparel among young people living with CF in Canada, using an arts-based research approach. Qualitative interviews were used alongside arts-based activities, and a visual thematic analysis was undertaken. Participants likened their bodies to nature, whereby illness was one “season” among many. However, participants also used medicalized understandings of their disease, and at times yearned for past versions of themselves. Participants desired apparel options that were more inclusive of their complex bodies. Finally, participants sought unity, gestalt, and harmony in self-constructions and craved a unification of the self. Our findings illustrate the complex and contradictory embodied experiences of those with CF, while illustrating the role of the arts and arts-based research in disrupting normative definitions of health, illness, and disease.