Living with hepatitis C
NOTE: Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added or, where ellipses (three dots) appear, removed. For example, ‘I had the nurses explaining to me, like, how easy it was […to have] treatment and I went to the [hospital liver clinic] and there was a doctor … can’t think of her last name, really nice lady […] Yeah, she explained everything to me and said it was a good time for me to do it now and, yeah, [I] just stuck with her and got that done.’
The people interviewed for this website talk in detail about their experiences of living with hepatitis C. While it’s not a major concern for everyone, most express worries about the potential long-term health effects of the virus. Others relate the impact of having hepatitis C on their sense of vitality and how they think of themselves (see also, Reflecting on experiences of treatment and cure).
The experiences covered in this section are diverse. For example, many people describe themselves as healthy and say they have experienced no significant hepatitis C symptoms. Some, however, say that symptoms and illness associated with the virus, including liver problems and fatigue, were a major part of their experience. Experiencing ill health was often a motivation to seek a diagnosis and start treatment (see also, Being diagnosed with hepatitis C).
Friends and family are often recognised as important to participants’ experiences of hepatitis C and wellbeing. Some recall, for example, learning about hepatitis C and accessing professional support through the advice and help of family and friends (see also, Treatment decisions: Family, friends and other important relationships). However, telling others about having hepatitis C can also be challenging, and some report receiving mixed responses to this disclosure. Speaking about hepatitis C in the workplace can also be a sensitive matter, with some participants concerned about stigma and discrimination. Others say they remain cautious about starting new intimate relationships.
Another key concern for participants living with hepatitis C is the possibility that their family, friends and children may acquire the virus. Many mention taking extra precautions with personal belongings around the house (such as toiletries), while others speak about taking specific precautions when injecting drugs. Many also expressed thoughts about reinfection. While some people say they would feel embarrassed if they acquired hepatitis C again after being cured, others report they would simply have treatment again without embarrassment.
Read on to find out more about the diverse experiences of living with hepatitis C.