Constructions of sexuality for women living with multiple sclerosis

Abstract

AIM: In this paper we reveal constructions of sexuality that were articulated by 12 women who participated in an inquiry, which aimed to understand the experiences of women who live with multiple sclerosis (MS). The aim of this paper is to consider constructions of sexuality when chronic illness such as MS intervenes. BACKGROUND: In previous studies women placed their sexuality on the agenda for discussion, claiming that their concerns had not previously been vocalized nor understood. DESIGN: This participatory inquiry was framed by the principles of 'look, think and act'. These principles are operationalized as looking at ourselves, reflecting and questioning aspects of our lives, and then taking action to resolve the issues identified. Twelve women aged between 30 and 60 years who lived with MS joined the three researchers for five group sessions. Each session lasted 3 hours. In addition, several women opted to be interviewed individually. In this paper we describe the way in which women have constructed and articulated their sexuality since acquiring MS. FINDINGS: Sexuality has multiple meanings that are shaped and influenced by life experiences. When MS intrudes in a woman's life, sexuality is reshaped against a foundation of previous sexual experiences and expectations. Constructions of sexuality encompassed physical sexual responses, perceptions of appearance and attractiveness to self and others, communication and relationships, self-image and self-esteem, and the sense of affirmation and acknowledgement that women experienced from others in their everyday lives. CONCLUSIONS: This paper reveals that sexuality was not privileged by women but was regarded as an ordinary part of life. Often sexual activity was placed on hold as other aspects of living with a chronic illness intervene, for instance an exacerbation of MS. Whilst this paper has a focus on constructions of sexuality, there is a close relationship to shifts in self and identity. Health professionals need to reject the myths and stereotypes surrounding disabled women and attempt to understand the possible impact of long-term illness on women's sexuality.