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.

Reflecting on stigma and discrimination

For some people interviewed for this website, stigma was a significant issue that shaped how they understood the virus and how they engaged with treatment and, more generally, with other people. Several say that the connection between injecting drugs and hepatitis C transmission is a key reason the virus is stigmatised.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.

Focussing on the connection between hepatitis C and injecting drugs, Ricky (M, 35, no treatment experience) explains that he worries other people will judge him because he has the disease. (Read his personal story here)

I’m ashamed, anxi[ous] and very self-conscious [about having hep C…] I worry about what other people think of it and [if] they’re going to judge me, I guess. [I think they will judge me for having] a virus and injecting [drugs]. I’ve been injecting for a while. Not that I’m injecting now, but you can still see where I was using, if you know what I mean, so I try and cover my arms, but summertime is coming up.

Also reflecting on the connection with drug injecting, Alexander (M, 45, experience with new treatment [DAAs]) explains that he too feels embarrassed about having hepatitis C. (Read his personal story here)

[My hepatitis C diagnosis didn’t really change my life] apart from [the] embarrassment and humiliation, in a sense, that come with it […] Being ashamed of it, you know, like, it’s not a good thing and it’s not, you know, it’s not like I can put that in a conversation when you’re meeting someone. It’s like, ‘Oh, I have hepatitis C’, you know. It’s like, do you know what I mean? It’s just, like, yeah, it’s shameful […] being a drug user [which is] most likely how I got it, you know.

Voicing similar concerns to Ricky’s and Alexander’s, Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) describes the stigma that can be found in the workplace and says that treatment is a great opportunity for people facing these issues. (Read her personal story here)

I think as long as there is an association between hepatitis C and IV drug use, then you are always going to have to deal with stigma and discrimination […] I don’t think that has changed. I think the fact that you can still have a blood test and your employer can see that you are antibody positive, those things, I think, still hold people back a little bit and still makes them have … You know, it is confronting. If you had a history of IV drug use and that’s how you got it, then it’s still a lot of confronting of those concepts still. In terms of your own health, I think it’s [treatment] a very simple process and you can just, you know, you can just do three months’ treatment, perhaps get some other medical help support, you know, emotional support maybe, and things like that that you may have needed as well. It’s a great opportunity to do a lot for people in that time.

Focussing on stereotypes about hepatitis C, Miguel (48, M, experience with new treatment [DAAs]) says that while people often make assumptions about how people acquire the virus, he refers to his mother’s experience to challenge those assumptions. For Miguel, this emphasises that a wide range of people are affected by hepatitis C. (Read his personal story here)

So, I stopped using [drugs] and, you know, [people] who stop using want to be looked at differently. They don’t want to be criticised and judged any more in the same way, because it’s treated now. In the same respect, someone like me, who [doesn’t take drugs any more] but had hep C, I felt like after I [was cured I wanted to be treated differently…] Society puts these labels of judgement [on people]. You know, any of the things that people do are their business, but I still can’t help it when other people talk about it and they start saying, ‘If you didn’t do this and that, then you wouldn’t have hep C’, and I would turn around and say, ‘That’s not true, because my mother got it and she’s not into drugs or anything like that.’

A few of the people who appear on this website also had HIV. Their experiences with HIV often had an impact on how they understood and experienced hepatitis C.

Stuart (M, 46, experience with old [interferon-based] treatment) says that he finds it hard to separate hepatitis C and HIV, and that stigma was part of why he didn’t tell many others about either. (Read his personal story here)

Well, having HIV as well, they are bundled up together. It’s very hard to separate them out. In terms of internal stigma, I felt I would have felt pretty, at various times in my life, I would have felt like, ‘Yeah, I’m a risk to other people. I have to be careful to protect others.’ I don’t think I’ve always understood the transmissibility of HIV as it compares to hep C, and I’ve never been an injecting drug user. So, there hasn’t been that element, but I’ve never felt, like, directly stigmatised really, in relation to either of them, just a very few couple of experiences in my life, I think. I think the big battle for me was the internal stigma, because I kept it very private. I just didn’t tell anyone, so they, you know, you only give them that chance to stigmatise you, when you give them the information that you have blood-borne viruses.

Communication and disclosure

In discussing stigma and discrimination, participants often emphasised how they limited communication and encouraged secrecy about hepatitis C and treatment. Many were concerned about potentially negative responses from family, friends or health professionals and were selective in who they told about their hepatitis C. The secrecy encouraged by stigma sometimes got in the way of starting and completing treatment.

Talking about the way that stigma can impact communication about treatment, Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment) explains that he feels more able to discuss hepatitis C with peers and other people who are on his ‘level’. (Read his personal story here)

So, when I started treatment, the specialist that I started the treatment with in 2014 or 2015, whenever it was that I started the treatment, he offered to hook me up with a nutritionist and stuff like that. That was positive because I am like, ‘Oh, this guy is not just giving me drugs and going, “Here, take them home for a week and see what they do to you.”’ He was actually more holistic, I guess. My experiences with the guys at the public health team at the [western suburb] needle exchange in the late ’90s, they were really cool because they were like my peers, they were on my level, so I never did think they were talking down to me. I assumed that some of them are IV drug users themselves, which made it a lot easier to talk about blood-borne viruses and, you know, risk-taking behaviours. Speaking to you about it now, and you have kind of disclosed that this stuff is not something you have experience or knowledge of, it’s only because I have done this so many times that I am able to disclose [to] you stuff so openly, like, the fact that I have had hep C twice and then continually re-expose myself to the possibility of getting it. Maybe talking to you 10 years ago, there would have been a lot of shame around that. So, whereas talking to a peer or talking to a doctor or a pathologist or something about my intravenous drug use and my, you know, concern for the way that I use [injecting drugs] wouldn’t have been so easy as what it is now. It’s easier to talk to someone – when you are a bit shameful around your behaviour – that is on your level, rather than someone that you see as in a position of authority or whatever.

Given his concerns about stigma, Steve (M, 47, experience with new treatment [DAAs]) says that he was too embarrassed to speak with his family about hepatitis C. Like other people on this website, he was worried that people would connect hepatitis C to injecting drugs. (Read his personal story here)

No, [I didn’t speak with other people about hep C because I was] too embarrassed. No, [I didn’t tell my family either], I just made sure I had my shaving equipment in the room with me and toothbrush and so forth, you know. It goes back to my using [drugs] really. As soon as you tell someone you had hep C, [even] if they don’t know anything about it, they know that you are a user, you know, there are not too many ways you can get it, it’s blood-to-blood contact.

Amelia (F, 41, experience with new treatment [DAAs]) describes trying keep her treatment private while living with someone she didn’t know well, and says this meant she often forgot to take it. (Read her personal story here)

I had gone through some [family violence] so we had, sort of like, broke up and I’d left the home. I was renting and then, yeah, [I] ended up, sort of like, homeless [and then] ended up living on a stranger’s couch, like a friend of a friend, and living there for a little bit and then moving from there […] So yeah, it’s been a crazyish couple of years. You are not really wanting certain people to know [about your hep C treatment], because they will judge you. […] So yeah, then you kind of hide your medication, and then you’re not taking it any more, and then you’re taking it whenever. So, it was extremely hard, and then, yeah, you kind of just stop altogether and then … or every time you see it, once a month or [so], you go, ‘Oh hang on I’ll take it’ – as if it’s going to do anything. Yeah, I don’t know what you’re hoping for when you take that one [time] in a month.

Thinking about experiences with her current doctor, Peta (F, 40, no treatment experience) explains that her concerns about stigma limited communication with her doctor. (Read her personal story here)

When I first went to [my doctor in about 2015], I mentioned [my drug injecting] and she just said, ‘Well, we need to do some blood tests.’ I don’t know if she did hep C or not […] When I first went to her, I told her that I did use [but] I said that I was an ex-user because I didn’t want to be judged […] I find there is a big stigma around it still, and I don’t like being judged because of it […] So, you know, it gets hidden, and that’s probably why […] I do hide it – because of the stigma.

Close relationships

For the people interviewed for this website, stigma and discrimination affected many of their relationships. While stigma was a consistent concern, they describe a range of responses to their hepatitis C. For example, some participants describe discrimination and a lack of support from family and friends, while others recount more varied attitudes and responses. The question of whether to speak with family and friends about hepatitis C came up constantly for the people we spoke to, and many hesitated about it or decided not to disclose, fearing discriminatory responses.

Thinking back to how her parents responded to her diagnosis in 2012, Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) describes them as unsupportive and explains that her mother had inaccurate perceptions of the possibility of acquiring hepatitis C through sharing kitchen utensils. (Read their personal story here)

My parents were the least supportive. They took away everything from me, and then they gave me a plastic cupboard and that cupboard was my cupboard, and I had plastic knives and forks, paper plates and all this stuff. I couldn’t use anybody else’s utensils or anything like that, and my mother’s a GP […and] she was like, ‘You could drink water, and then we could drink water from the same cup.’ […] Then she’ll get hep C, you know. Like, my mother, the GP, was giving me the wrong information.

Focussing on her social relationships, Lou (F, 40, experience with new treatment [DAAs]) says that her friends and partner were supportive after she told them about her hepatitis C, but she decided not to tell her father. (Read her personal story here)

I’ve only told a handful of very close friends [and they] were all just like, ‘Oh gosh, that just sucks so much’ and were lovely, and [have] always been very supportive. Then, you know, the partner […] I did have kids with, he knew and was, you know, he was fine and very supportive of it. I would have told my mum, but she had died. My dad, I didn’t tell, because he’s a bit older and quite … like, he would have been supportive, but he probably would have told maybe someone else in my family who I just wouldn’t want that information to be shared with them. So, that was a bit isolating.

For some of the people who shared their stories for this website, the way intimate partners would respond to hearing about their hepatitis C status has been a major concern.

Gracie (F, 65, experience with new treatment [DAAs]) explains that she was worried her hepatitis C diagnosis would put off her new partner. She says that because she saw him as a more conventional person – more ‘normal’, as she puts it humorously – disclosing her status wasn’t easy. (Read her personal story here)

When I came to Melbourne, I started a relationship with a guy, I told him, but I just found it quite difficult, because I really liked him, and I didn’t want it to be a deal-breaker for him. To his credit, he was pretty good with it but, you know, he did his own little bit of research as well, which is fine. But I wished that I didn’t have it. I wished that I could just go into a relationship without having to disclose my dark – like, it felt compared to – my dark history, because this guy was normal. Most of my friends who know me, they know I’m not normal, but this was a normal guy, and I was pretty keen to have a relationship with a normal guy at that time. So, yeah, I felt a bit unclean and I really, really wished I wasn’t, but that was just the way it was.

Healthcare, treatment and stigma

Participants also discussed the impact of stigma and discrimination on decision-making about hepatitis C treatment and other healthcare. Many say that stigma and discrimination put them off having treatment or using other healthcare services such as having blood tests. While these experiences were very common among the people interviewed for this website, some describe more positive healthcare encounters too. Overall, stigma and discrimination shape the way many participants understand and experience hepatitis C treatment and being cured (see also, Reflecting on experiences of treatment and cure and After cure: Health and life in general).

Reflecting on encounters in which she has felt people judged her, Brooke (F, 58, experience with old [interferon-based] treatment) says that they made her more determined to have treatment. (Read her personal story here)

Look, some would try and hide it [their judgemental attitudes], if you know what I mean? But you can tell when someone [is] not being kosher, and they would say, ‘Oh, yeah, you know, yeah’ and I am like, ‘No, you are actually judging me now.’ That’s the other thing, I wish I didn’t have it, but my gut intuition is nearly always spot on, and I wish I didn’t have it sometimes, but there were some [people] that, you know, they give you this smile and, you know, I thought, ‘No, you are judging me.’ So it did happen, but it wasn’t going to deter me. If anything, it only made me stronger, because I thought, ‘This is not my fault, you know, that I have this, and I am doing something about it and I am going to get better’.

Stigmatising and discriminatory encounters in hospitals are discussed by several of the people we interviewed. These experiences can be distressing and make accessing healthcare more stressful.

Describing an experience in hospital around 2013, Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) remembers overhearing staff labelling him an addict while he was seeking treatment after a car accident. (Read his personal story here)

I had had a car accident and I had a blood test, and the nurses knew nothing, like, no drug use was disclosed, that wasn’t the reason for the car accident. As they were wheeling a new person in at 5 o’clock in the morning, the person said, ‘What’s he like?’ and she has gone, ‘He has got hepatitis C, like he is a drug addict, don’t worry, I will make sure he stays away.’ I remember hearing that distinctively at 5.30 in the morning, just thinking, ‘What the hell?’, you know, ‘Don’t worry […] you will be safe.’ … ‘You will be safe’, that’s right.

While reports of stigma and discrimination in healthcare settings were common, some of the people we interviewed had more positive experiences.

Sam (M, 35, experience with new treatment [DAAs]) describes his GP as ‘relaxed’, and he discusses the GP’s efforts to ensure Sam didn’t worry unnecessarily about having hepatitis C. He also points out, however, that this meant the GP didn’t provide enough information about the disease. (Read his personal story here)

My doctor was very relaxed about it, because he didn’t want to make me feel bad about myself, you know what I mean? He didn’t want me to have the stigma. Like, yeah, he didn’t want me to feel bad about it, he didn’t want me to feel dirty about it. He was really relaxed about it, but in saying that, he didn’t explain to me what the effects are going to be further down the line. So yeah, like, if he was a bit more in-depth in telling me how it was going to affect me and how it was going to affect my everyday life then, yeah, that would have helped a lot more.

The stigmatisation of hepatitis C also shaped how some people thought about treatment and cure (see also, Reflecting on experiences of treatment and cure).

Julia (F, 43, experience with new treatment [DAAs]) describes being cured of hepatitis C as moving on from a less positive time in her life, and she reflects on not having to think about it being in her body any more. (Read her personal story here)

Yeah, the treatment itself was simple. I just loved the idea of actually saying goodbye, kind of, to hep C, because it felt like that last link to that whole part of my life. It’s almost that sense of no [longer having] contamination. It’s an awful word, but I remember having a minor surgery a few years ago, and once they gave me the morphine and the gas or whatever, I started blurting out, ‘Be careful, I am hep C positive, you know, be really careful.’ I was telling all the staff in the surgery, you know, I was terrified of them touching my blood, like [I had] this idea that I was contaminated. Yeah, so to lose that, which you know, I know I still have antibodies of hep C and I am aware of it, but to lose that notion, you know, the virus running through my blood, was lovely.

Discussing different treatment locations, Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) says that experiences of stigma can vary by place. By his recollection, he hasn’t experienced discrimination in services with specialist knowledge of alcohol and other drugs. (Read his personal story here)

Look, I don’t think [people who have acquired hep C from injecting drugs] should go to a normal GP as such. I reckon the reason why I haven’t caught any stigma or don’t get, like, sort of, you know, discrimination from it is because I go to drug and alcohol clinics, and it’s kind of expected of some people to have it […] I don’t think people will feel discriminated against [if they go to those kinds of clinics].

Challenging stigma and discrimination

While most people interviewed for this website report experiences of stigma and discrimination, some say it wasn’t an issue in their lives. Others describe ways that they challenge it. Paulie (M, 45, new treatment experience [DAAs]) (note: strong language) says, for example, that he hasn’t experienced discrimination and adds that he doesn’t ‘give a shit what people think’ anyway. Others such as Carol (F, 58, experience with new treatment [DAAs]) speak about ways that they challenge stigmatising attitudes to hepatitis C. She says that people often ‘pass judgements on others’ but should ‘look in [their] own backyard before [they] go [looking] into someone else’s’

Reflecting on ways to increase awareness about treatment, Dana (F, 53, no treatment experience) addresses stereotypes about who can acquire hepatitis C. She says that more information is needed to explain that the virus can affect many different groups of people. She suggests including hepatitis C tests in general health check-ups. (Read her personal story here)

Non–drug users can get hep C [and] it would be good to have that written somewhere, like, you know, [that] you don’t need to be an IV drug user or a sex worker, anybody can catch it. You know it’s something that should […be part of a medical] check-up, you know, like your yearly check-up or something at your doctor, along with other things that you get done, like your cholesterol and your heart and stuff. So, you know what I am trying to say? That would be nice.

While stigmatising attitudes are something Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) has encountered, he says that he rejects those views and encourages others not to be ashamed of having hepatitis C. (Read his personal story here)

Do you know what? It could have [affected how I see myself] if I let it, because lot of people say it’s a dirty disease […] but I have shunned that thought. I have shut the thought out of my mind, because I don’t want to see myself in that way […] I actually went for a job […] as a peer support [worker] with HCV [hepatitis C virus] and HIV. Didn’t get the job, but I really encourage people to talk about it and, you know, share their views and not be ashamed of it.