Stuart’s Story
Name: Stuart
Gender: Male
Age: 46
Who is Stuart?
Stuart lives with his partner and two teenage children in Melbourne, Australia, and works in a community health organisation. He describes his ethnic background as ‘Australian’: like both of his parents, Stuart was born in Australia. He describes his hepatitis C treatment experience as a ‘roller-coaster journey’ and the moment of cure as ‘really joyous’.
Brief Outline:
Stuart can’t remember exactly when he was diagnosed with hepatitis C, but thinks he acquired it through a childhood medical procedure. He started to realise the potential significance of hepatitis C in his mid-twenties. Up to this point, he was focussed on concerns related to having HIV. He tried the older (interferon-based) treatment three times. Each course of treatment was challenging in different ways, and finding out the third one was successful was ‘euphoric’, he says. Stuart continues to manage a range of health issues, some of which remind him of the ‘lasting impact’ of hepatitis C on his ‘body’.
He says he ‘can’t really remember’ exactly when he found out that he had hepatitis C, but he began to realise it may be a serious issue in the late 1990s, when he was about 25. As he says, up to this point, he was occupied with concerns about his HIV: ‘It kind of really crept up on me, and when I realised [the significance of hepatitis C, I was] really devastated, and it really affected me. I’d been focussed on HIV, and suddenly there was two things that I had to worry about […] I just felt I had a strong sense of misfortune, like, you know, “Why does there have to be two?”, “Isn’t it bad enough having HIV, and now I’ve got hep C as well and it’s scarring my liver”. […] I really had to pick myself up from that’.
After finding out about cirrhosis of the liver, Stuart sought treatment. As he explains, ‘I felt like, “I’m going to die now of hep C, you know, […] it’s going to be liver cirrhosis”, and it really motivated me to seek treatment’. Stuart’s first treatment experience was in 2001. He recalls health professionals advising him that he might experience what they called ‘lowered mood’, which was associated with the interferon-based treatment available at the time, and says that he was ‘quite depressed’ during the treatment.
‘I just remember feeling like it was a struggle to do really basic things. You know, sort of driving somewhere, and pulling up and then getting out of the car was a struggle. Not just [from lack of] energy, but also sort of, like, [asking myself] “What’s the point?” You know, it was kind of dark days, and that’s really different to the way I am’.
Stuart’s first round of treatment was unsuccessful. After waiting a few years, he tried the interferon-based treatment again in 2005. He remembers being more prepared for the second course of treatment. Specifically, he recalls changing his diet, meditating and leaving his job to help him cope: ‘Yeah, I went in with my eyes open, and I was meditating, and that sort of thing, and I actually breezed through that second time’.
While his second treatment experience was much better, he remembers being ‘devastated’ when it wasn’t successful: ‘I was so desperate for it to work, and then to learn after 48 weeks that it hadn’t, I was really devastated about that […] I was almost angry that it hadn’t worked, and I was also around people who were having treatment and it was working for them, and I was jealous’.
After this experience, he decided to wait for an ‘advance in treatment’ before trying again. However, after waiting seven years, he decided to have the interferon-based treatment a third time. He had developed cirrhosis of the liver and was advised that treatment would benefit his liver even if it wasn’t successful: ‘[The doctor said that…] there would be some definite benefits from being on treatment, and I’ll give my liver a bit of a break from the virus, but [curing] it [is] probably not going to happen’.
As Stuart explains, he had a family by the time he had his third course of treatment. While he describes having treatment and caring for his family as ‘intense’, he says his family also helped him complete it. As he puts it: ‘ [Having children] really kind of changes your life dramatically, but if I had any lowered mood [the] third time, I was distracted from it, kind of conveniently distracted’ Stuart also says, however, that the third round of treatment was difficult and that he had to ‘dig deep’ to find a way to ‘keep doing it and get through [it]’.
When Stuart received the news that his treatment had been successful, he was, he says, ‘euphoric’. Before having the third course of treatment, Stuart told some friends and family that the health effects of his hepatitis C were becoming ‘serious’. This news particularly concerned his parents, so he recalls being especially happy to tell them he had been cured: ‘They kind of got a dose of very serious news from me, which I could see really concerned […] my mum and my dad, but then to follow it up with this, you know, euphoric kind of news that I’ve been able to go on treatment, and I’ve actually, I don’t have hep C any more […] That was really joyous’.
Recalling this time, Stuart tells how he primarily wanted to get rid of the virus and ‘prolong [his] life’. He says that being cured removed a ‘burden’ from his life: ‘I went from just having a sort of a feeling of having a burden and a kind of a feeling of, “I don’t know how long I’ve got [to live]”, to then feeling like, “Oh, it’s actually gone. It’s just gone away like that”’.
He finds that while he doesn’t think about hepatitis C very often these days, his health issues remind him that he needs to look after his body so he can live as long as possible: ‘I just want to make sure I do everything I can to get as much out of [my body] as I can and be around for as long as possible. Yeah, I don’t think about hep C, but I think about the lasting impact it’s had on my body’.
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.
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.
Stuart (M, 46, experience with old [interferon-based] treatment) describes focussing more on diet and exercise, and stopping drinking following his treatment and cure.
I try to live as healthy as I possibly can with diet. I don’t drink and I don’t smoke. It’s really my wife who, told me really clearly about the risks of alcohol. I don’t think I got that message from my treating doctors, but she’s a GP, and she woke me up to the need to really just stop drinking completely. You know, with cirrhosis,* it’s like, ‘Duh, bit obvious’, but I hadn’t made that decision, and once I made that decision, I felt like, ‘Yeah, that’s really something I can do now. Just have zero alcohol intake.’ And yeah, I guess I’ve been aware that coffee seems to be pro–liver health. I don’t know if that’s still the case, but I had … Well, I don’t think they understand why – but I think maybe I need to update my information there – but I love coffee and I’ve sort of also thought about the way it might help the liver, so, but I try not to have salty food and fatty foods, that sort of thing.
Stuart (M, 46, experience with old [interferon-based] treatment) explains that while he ‘got rid’ of hepatitis C, he continues to have regular medical tests to monitor his liver health. He says that even though he doesn’t think about hepatitis C specifically very often, his health issues remind him that he needs to look after his body so he can live as long as possible.
I mean, when I think of it, I think, ‘Yes, I got rid of it’, but I’m aware […that] the state of my liver is not great, and with cirrhosis, you know. I’ve got some portal hypertension as well […] That weighs on me a bit. Like, I feel like, ‘Yeah, I’ve just got to get this body … get as much out of it as I can.’ You know, I’m 46 and I’d like to be around for as long as I can, and if I’m having these problems at this age, you know, I just want to make sure I do everything I can to get as much out of it as I can and be around for as long as possible. Yeah, I don’t think about hep C, but I think about the lasting impact it’s had on my body.