The salience of the body: transition in sexual self-identity for women living with multiple sclerosis.

摘要

AIM: The purpose of this paper is to outline understandings about the construction of sexuality and the impact of a changing body for women living with multiple sclerosis (MS). We suggest that the process of transition towards incorporating the experience of chronic illness into one's life is influenced by the (re)construction of self-identity. DESIGN AND METHODS: A participatory action process guided the research. The women joined the authors for five group sessions that totalled 15 hours of contact time. In addition, we offered women the opportunity for one-to-one interviews at home. Nine women volunteered to participate. This allowed us to gain additional in-depth data about individual experiences. The interpretive framework was guided by the self-identity literature. When reading the transcripts we questioned: What is going on here? What does this say about the construction of self? What does this say about the construction of identity? What influence does the body have in the construction of self-identity? Analysis was collaborative (with the women) and the resultant emerging construction of sexuality is shared in this paper. Data generated during one-to-one interviews are privileged and we include two accounts from women who live with MS. The women's stories focus on sexuality, however, within this sexual context, we observed shifts in self-identity which we contend may shape the illness transition experience. FINDINGS: The rationale for privileging only two accounts is to expand understanding of Ordinariness and Extraordinariness with particular focus on the salience of the body in the 'sexual' lives of the women. Self-identity was shaped by how they felt about themselves as sexual beings, how they experienced their body, how they felt about sexual activities and by the way others reacted to them. Importantly, we view the women's sense of self, identity and the relationship to the body and find that shifts in self identity shape the woman's transition towards Ordinariness. CONCLUSIONS: This exploration of illness experiences is a reminder that our bodies are vehicles for our sense of self and identity. Cultural, educational, social, religious and family contexts all impact on women's capacity to shape the consequences of illness and the choices available to them. Facilitating women towards an awareness of the choices available in order to sustain or reclaim self may in turn expedite transition towards Ordinariness so that illness may become a part of their life.