I was infected with hepatitis C (HCV) for 25 years. Of the aches and pains associated with viral hepatitis, the ones that hurt most are not mentioned on web sites: stigma and the fear of infecting another human being. HCV hijacks the liver and hurts the entire body, but feeling shame about having it is its own misery.
Fear of transmitting HCV encumbered me more than stigma did, but both are bound to each other. Stigma surrounding HCV is complicated because it has fear-based roots, such as fear of being infected. While I was afraid to give HCV to others, they were afraid of getting it from me.
After I allayed their fears, inevitably, I would be asked, “How did you get it?” This is a complicated question because another aspect of HCV’s stigma is its association with drug use. This innocent inquiry is probing into something intensely personal.
Review Article Living with Hepatitis C Virus: A Systematic Review and Narrative Synthesis of Qualitative Literature
Laura E. Dowsett,1,2 Stephanie Coward,1,2 Diane L. Lorenzetti,1,2,3 Gail MacKean,1,2 and Fiona Clement1,2
Abstract Background and Aims. The lived experience of HCV has not been well documented in the literature. The aim of this systematic review was to understand the experiences of living with Hepatitis C Virus (HCV).
Methods. Five databases were searched from inception until January 19, 2015. Studies were included if they focused on adults diagnosed with HCV; reported experience living with HCV; and described original research.
Results. 46 studies were included. Studies found that participants had reduced quality of life due to physical symptoms. Due to physical symptoms and discrimination, many participants switched to part-time work or quit their jobs. Many individuals reported negative experiences with the healthcare system; themes of feeling unsupported, not having adequate information, and not feeling involved in decisions were reported. Stigma significantly impacted those living with HCV.
Conclusions. Published literature indicates that those with HCV often feel stigmatized and unsupported in their care, relationships, and work environments, while simultaneously coping with physical and psychological symptoms. This synthesis points to areas where greater education, compassion, and patient-centered healthcare could improve the experience of people living with HCV.