Who is Scott?
Scott lives alone in Melbourne, Australia, and has two adult children. He is semi-retired and works as an artist. He describes his ethnic background as ‘Australian’: like both of his parents, Scott was born in Australia. He says that being cured of hepatitis C was ‘massive’, like starting ‘another life’.
In his late thirties Scott decided to have a hepatitis C test after feeling that his ‘liver wasn’t quite right’. He tested positive, a result that played on his mind for the next 15 years. When he was in his late forties, he started to hear about hepatitis C treatments in the media. He eventually started interferon-based treatment, an experience that he describes as ‘atrocious’. After some initial confusion over his treatment outcome, he was eventually informed that he had been cured of hepatitis C. This result was ‘massive’ for Scott, and he says it meant that he could ‘get on with [his] life’.
Scott lived with hepatitis C for about 15 years and recalls it ‘play[ing] on [his] mind a lot’. As he explains, ‘I really didn’t like the idea of having this disease. I didn’t want to have it.’ For Scott, family relationships were an important part of why he worried about his hepatitis C, and he was especially concerned about his son: ‘[Having hepatitis C] made me internally sort of fearful and scared […] My wife at the time, she was diagnosed with it as well, and we’d used [injecting drugs] together before we got married, so we were worried whether my son had it. He didn’t [have it], he was all right, but … I don’t know, it’s sort of like shameful […] You feel pretty stupid.’
When he was in his late forties, he started looking into treatment after hearing reports about it in the media. He remembers he felt he needed to stop drinking and taking other drugs before he could have the treatment: ‘I sort of had a nervous breakdown related to the drug use and the hepatitis C, and that’s before I undertook treatment. So, I got sober, then I was able to undertake treatment. So, that was a good thing.’ Following this experience, in about 2008 Scott started interferon-based treatment.
While Scott recalls getting advice that the treatment was going to be hard, it was even worse than he expected. As he puts it, ‘It was like being hung-over. It was like drinking a bottle of whiskey every night and just getting progressively worse, like being in a hangover […] When I first started, it was fairly mild, the side effects, but after six months, it was atrocious. It was like you’re going completely around the bend.’
Thinking about the end of his treatment experience, Scott recalls that there was some confusion about his results. One doctor told him that the treatment had been unsuccessful, which ‘devastated’ him. However, later the same day he saw his psychiatrist, who followed up with the hospital administering his treatment, and Scott was asked to come in for another test. After having the additional test, he waited a ‘couple of days’ before being informed that his treatment was actually successful.
Reflecting on being cured of hepatitis C, Scott says, ‘It’s huge. It’s like another life, you know. You can’t underestimate that […] It’s like I can start again. I don’t have to worry about this any more and I could, you know, get on with my life […] It was massive.’
According to Scott (M, 62, experience with old [interferon-based] treatment), when he was first diagnosed in the late 1990s, he was concerned that he may have accidentally given it to his son. Not having to worry about this any more is one of the main benefits of completing treatment for him.
[Finding out I had hepatitis C] just made me internally sort of fearful and scared. [I was] worried about … you know, like, I was worried if my son had it, you know, because my wife at the time, she was diagnosed with it as well, and we’d used [injecting drugs] together before we got married. So we were worried [about] whether my son had it. He didn’t, he was all right, but … I don’t know. It’s sort of, like, shameful, it’s a shame, yeah. It was pretty, yeah, you feel pretty stupid […] It’s hard to feel any different […] I’ve talked about this before with people, like, the stigma works two ways, you know. You get stigma, like, from people I described […that you might meet in the] pub, okay, but the stigma comes from within you as well, you know, because you’re the one with the disease […] It restricts you too, you know. I’m just glad that’s all over, to tell you the truth.
Scott (M, 62, experience with old [interferon-based] treatment) explains that he has mainly spoken about hepatitis C only with close friends who have had similar experiences to his own. He says that this is why he rarely encountered stigmatising attitudes towards hepatitis C.
Yeah, most people I knew were fine, but there were some times when you come up against stigma and superstition and fear […] Well, just fear of the disease. It’s like people are scared of the coronavirus now. People are scared about any disease because they don’t know what it is, so they get fearful rather than, you know, trying to find out what it is or listening to you. Mostly, I […] had a fairly narrow group of friends in those days. We were all sort of birds of a feather, if you like. So, I didn’t have any problems, mostly because I used to be in a sheltered environment. Once I got outside of that, if I tried to communicate with people outside of that, yeah, it got [harder]. I didn’t even tell my family […] I was very careful. I didn’t tell a lot of people.
Scott (M, 62, experience with old [interferon-based] treatment) describes telling others about his treatment experience and feeling ‘proud’ that he inspired them to look into treatment for themselves.
Well, I had people to talk to at the time, so I was pretty lucky about that […] I was in AA [Alcoholics Anonymous] at the time [of my treatment] and […] in AA you’re not really supposed to talk about any other drug [issues] except for alcohol […] which is a lot of bullshit, but that’s the way it is. And when I started talking about hepatitis C and the treatment, I became, like, a bit of an inspiration for other people […] And so […] quite a few other people started [thinking about treatment]. They weren’t talking openly about it, but they talked to me about how they had hepatitis C and that they wanted to get treatment. So, I was pretty proud about that, that I could have an effect on people. They were open to listening to how I was going [with the treatment].