“Eyes Wide Shut”: Narratives of Women Living with Hepatitis C in Australia

ABSTRACT

Hepatitis C is the leading notifiable infectious disease in Australia and in the last few years, the number of new diagnoses among young women is beginning to outnumber men. For many, infection with hepatitis C virus (HCV) results in a chronic condition, which, in addition to a range of symptoms, carries with it the stigma attached to injecting drug use. Despite the growing prevalence of HCV, women's health has barely begun to address the gender specific impact of this illness on women. We report the results of a qualitative study of young women's experiences of living with HCV with a specific focus on the meaning of this condition and its impact on their lives. In 1999–2000, twenty-five in-depth interviews were conducted with women between the ages of 18 and 43 years, who were current or past injecting drug users and who had been diagnosed with HCV. One focus group discussion was held with health workers who provide treatment and care to this population. A number of key issues were identified that women believed impacted negatively on their lived experiences of HCV. Of most concern was the meaning of HCV and the social stigma attached. Stigma coupled with the lack of knowledge and awareness among health professionals and the high cost of treatment contributed to women's reluctance to seek support and care. HCV has yet to be taken up by the women's health movement as a key issue, especially for young women and we argue that this trend needs to be reversed.

KEYWORDS:

• Women's health
• hepatitis C
• stigma
• injecting drug use