Breaking the silence: women living with multiple sclerosis and urinary incontinence

This study examined women's understandings of living with multiple sclerosis (MS) and urinary incontinence and the challenges they have encountered in their day-to-day lives. As health-care professionals, we aimed to understand how people living with MS manage urinary incontinence. This paper reports the findings from a Participatory Action Research (PAR) group with four women, the researcher and two Continence Nurse Advisors (CNAs). The group met on five occasions between March and June 1999. The women's stories held personal and gendered meanings about living with MS and urinary incontinence. Four themes were derived from the transcripts: maintaining control; seeking understanding; avoiding shame; and good and bad days. The women and the CNAs benefited from an exchange of knowledge about living with MS and incontinence. The CNAs became sensitive to the women's experience and have been able to incorporate these understandings into their practice. By sharing our research we hope the findings may be more widely incorporated into sensitive health practice.