Dealing with Stigma and Discrimination
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, show that text has been removed. Ellipses without square brackets indicate a pause. 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.’
A big concern for many of the people interviewed for this website is the stigma associated with hepatitis C. ‘Stigma’ refers to negative attitudes, judgements and stereotypes based on assumptions about a particular group of people. It can lead to exclusion and unfair treatment (often referred to as ‘discrimination’). Stigma and discrimination can also change the way people think of themselves: they may come to accept as true the negative judgements expressed by others. This can damage self-esteem, mental health and general wellbeing.
Almost all the people who participated in this research describe experiences of stigma and discrimination. For many, these encounters have had a major impact on how they think about hepatitis C and related issues such as communication and confidentiality (see also, Being diagnosed with hepatitis C). Some argue that the connection between hepatitis C and injecting drugs is a major reason the virus is stigmatised (see also, Reflecting on experiences of treatment and cure).
As some of the people interviewed explain, stigma can affect many important relationships in the lives of people living with hepatitis C and is therefore a topic of vital importance. Relationships with family, friends and intimate partners are all influenced by stigma in different ways. Also, stigmatising attitudes are often encountered in the health system, and this can make it harder to use healthcare services.
Some participants describe efforts they make to challenge stigma and discrimination. Some say they discuss hepatitis C openly to counter stigmatising misconceptions or encourage others affected by it not to feel embarrassed or ashamed (see also, Advice and messages to others).
Read on to find out more about experiences of stigma and discrimination among people with hepatitis C, and about how some people challenge stigma in their daily lives.