Being diagnosed with hepatitis C

I just had this feeling inside, and so I went to my clinic. I said, you know, ‘This is what’s happened, and I think that I may have hepatitis C. Can you check for me?’ And my doctor said, ‘Yes, I’ll check for you’. [He] called me back a couple of days later and said I needed to go in and speak to him, and then he told me that, yes, I was hep C positive […] I don’t know how I knew, but I just could feel that my body wasn’t right. And, yeah, he told me that I was positive for hepatitis [C].

I was a party animal when I was in my twenties, and I […] just basically followed the party [and] for about two years that is all I did […] I was fortunate to have some good friends […who] seemed to know what was going on and I didn’t […feel I had] to worry about going to the doctor’s. Or, you know, I didn’t […] really fit into the category of someone who was taking things responsibly, in a way. I felt like I was responsible, but I didn’t ask for help […] Because my friends seemed to know what was going on, information-wise, [we thought,] ‘Okay, we know what to do [to avoid hepatitis C]’. [We thought that] there was little need to go see a doctor and get a second opinion or even tests. But what I should have done, I didn’t do. I just considered my friends and the knowledge we have enough, you know. I have been tested [now] and if I had caught the hep C in the early stages, it would have probably saved me a whole lot of hassle.

Well, at first I went to get a sex screen and my nurse then told me ‘Oh, it looks like you’ve got hep C’. At first I thought, ‘Well, what’s that?’ I thought it was AIDS or something, and I [asked myself] ‘Do I go and commit suicide now?’ And she’s, like, ‘No, no, everything is good. You’ve just got to change your diet and be healthy’ and stuff like that. So, at first, when I first started, I changed my diet, started eating healthy again, and then it got worse, so I did the [old] treatment.

In 2010, I’d received a HIV-positive diagnosis in around April-May, and then so I was engaged in care and I was still doing six-monthly testing for all STIs and to monitor my HIV vitals. It was probably around November in that same year that I got a call to come into the clinic to talk about some liver results. At the time, I didn’t really understand how, like, HIV and the liver were connected, and it turns out, like, it wasn’t actually about my HIV, you know. I was sat down and I was told that I was hep C positive, and that was actually, like, a really big shock to me. It was more of a shock than my HIV diagnosis, because I understood that, like, what I was doing with sex was risky for HIV, and so it wasn’t, like, that surprising based on my behaviour. But in terms of hep C, I kind of knew a little bit [about it], that maybe it was associated with injecting drug use, and that’s pretty much all I knew. And at that time, even though some of my sex partners had injected drugs, I hadn’t injected drugs, and we weren’t able to really do successful contact tracing either. So, there was, like, a whole lot of confusion around that for me, and I think dealing with, like, two viruses just, like, was really, really intense. I felt like a lot of internalised stigma. I felt really confused, I felt a bit angry because, like, no-one was really talking about hep C among people living with HIV.

Okay. I’d just started a new relationship with a chap and I asked him if he would get tested for AIDS, and he said, ‘Yes, but only if you get tested for hep C’, and I said, ‘Why is that?’ He said, ‘Because my last girlfriend had hep C and she knew and she didn’t tell me’, and I said, ‘Oh, okay then’. So, I just went and got tested, thinking that it was just a formality, and I actually had it. I’d had a friend who had hep C and he really struggled with it, and I supported him in his struggles. He did three separate lots of interferon [treatment…] He lost so much weight. He was unable to work. He became skin and bones. He was really depressed. It was just awful to watch him struggle, trying to get rid of his disease, and then when I found out I had it too, I went, ‘Oh, no! This is a worry’. So, that relationship didn’t last very long, but the hep C did […] I remember telling my mum that I had hep C, and she said, ‘Oh! Where did you get that?’ and I said, ‘Sharing needles’, and she went, ‘Oh! That’s nice’. She’s a poor old love, didn’t know what to say, but anyway.

So, I had started a new relationship, and we thought, ‘Oh, we should do the right thing and get an STD* check’. And so I got one, and that was the first time I’d had one, and … that was the results from the doctor. So that was quite a shock, and I had thought, like … [hep] C just wasn’t in my … just wasn’t in my kind of orbit really. I remember back when I was 18, and I see a cardiologist every year because I had heart surgery when I was a baby, and it was from the blood transfusion at the […] hospital […] Yeah, so that was how it was acquired, as a baby in 1980. And, yeah, so I remember saying to my cardiologist when I turned 18, I said, ‘Could I have got AIDS?’ Because I remember there was a lot of information that had been [circulating about] people getting HIV in the ’80s from blood transfusions, and he just sort of laughed me off and said, ‘No, of course you don’t have AIDS’. And made me feel a bit silly. Then I really never even thought about it again, so yeah, it did come as a complete shock.

[I found out] probably when I was pregnant. Yeah, because before then I couldn’t have given a shit. Like, there would have been years where, apart from my methadone script, I would never [have] had any meaningful interaction with healthcare. So, I probably found out when I was pregnant. I actually recall being very surprised I wasn’t HIV positive. I remember asking [them to take] the test over and over when I was pregnant [and] just being shocked that I wasn’t HIV positive. I didn’t quite believe them […] I was all pretty overwhelmed, [with] everything else happening for me, and so hep C treatment, yeah, it wasn’t really talked about. I do remember wondering about breastfeeding and hep C once, you know … a few months on, once I realised I was going to have a baby.

When you go into custody, you are just given the option to be screened for blood-borne viruses. It was just an option, and I was 26 and I shared a lot of needles and have done lot of unsafe practices, so I was screened, and then about a month later the doctor called me in and said that I had antibodies. He explained straight away that didn’t necessarily mean I had the virus, and that my liver count and that seemed all right, and then they did the PCR test and I had cleared [been cured of] the virus. So, yeah, I wasn’t overly concerned when the doctor explained things straight away, and because I had a bit of prior knowledge, yeah, and I was still using drugs in prison at that stage, so I wasn’t … I was a bit blasé to the whole reality of the importance of having a functioning liver.

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. As someone who has hepatitis C, and I don’t think that has changed, and I think the fact that you can still have a blood test and your employer can see that you are antibody positive, so 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.

It was a double whammy. But it [hep C] was not a concern compared to the other issue [HIV] and I must have an interesting immune system because my body overcame it [hep C] the first time of its own volition, and I was left to continue on my journey with the other situation. So, that was the first time I came across it, and to be quite honest, at that time I think the fear was just as great around hepatitis C as it was around HIV. So, dealing with health professionals, […] you had to go to two different areas of the hospital, and you were treated the same in both, but the fear was not about the other item, in each section it was about their own section item [either the hep C or HIV].

I guess when I initially heard him [the doctor] say, ‘You’re positive for hep C’, my stomach dropped, but him making it sound like a positive thing, not a negative thing, changed my feelings. Because it was all in the appointment […] I was like, ‘Oh shit’, you know, [asking] ‘Where do we go from here? Am I going to die?’ You know, I still sort of had those feelings, but then by the end of that appointment, [my doctor] said, ‘You know it’s been … it’s the best time to have hep C right now, because […of the new treatment], it’s got this success rate and blah, blah, blah’ and all this stuff. I was like, ‘Well, if [that’s what] you reckon?’ I still had half a smile on my face and half a frown, you know. I guess I was more worried about, to be honest, the baby than myself. If anything, I was more worried about my son at the time, and yet again, [my doctor] eased my mind with that. So then I was just like, ‘Okay, sweet, we can get [the treatment] started once I’ve had the baby’.

I don’t think I knew that she could have got it during pregnancy. I mean that I could have passed it onto her while I was pregnant, but I did wonder, you know. I guess always in the back of your mind you wonder if maybe you [were] not being careful with blood or something and passed it on to her in that way. The moment she told me, I knew that I had it and that I had given it to her. I don’t know why, but I knew. I guess all that guilt around IV drug use, you know, when I first, well, before I was pregnant with her, before I knew I was pregnant with her, so I always had a guilt there anyhow. So I guess it’s always been this long-term fear that I had done something or damaged her in some ways. So I guess it was like having every single fear that I had around my IV drug use sort of just come to life, really. It was bit like I had been cheating for the last 30 or so years of my life and I thought I had got away with it and I hadn’t, so […] that was just the most horrendous experience, and [I] just have the most amazing daughter, because she never showed any judgement or any concern.

I was just going, donating my blood, going home, you know, every three months, and one day I read a letter from the blood bank saying there’s a rare antigen in my blood [and asking] could I duck back in and see them? And seriously I thought I might have had blood type Q and I was going to save a million people or whatever, I had no idea. So, I’ve gone back […] saw a doctor, blah, blah, blah, and he said, ‘Look, mate. We got to tell you. You’ve got non-A, non-B hepatitis’. Which now obviously is hepatitis C. And I went, ‘Oh okay, that’s fine’, and it meant nothing to me, because I wasn’t sick, nothing, nothing. He said, ‘But the only thing is, you can’t donate blood any more’. Like I say, it was just out of sight, so it just didn’t mean anything.

[When I found out I had hepatitis C] I did nothing. I didn’t want to do anything and I was always saying to my doctor, ‘It doesn’t worry me … it doesn’t affect me and that interferon is so awful, why would you bother? In the future, we will see what happens’. Well in the future the 12-week Harvoni cure came up and I jumped at it.

By memory, it was just in the emergency department, so I have gone in really sick, all yellow and admitted being a drug user, and they have just said that, ‘You have got a hep C flare-up, you just have a hep C flare-up, and we are going to admit you and we are just going to do blood tests and watch your levels and will let you go when you are all right’. So, I ended up there maybe a day over a week or just shy of a week, so like six or eight days […] I told my mum […] Didn’t really seem to faze her, yeah, if I am honest.

I put myself in a bubble where I stayed home and didn’t communicate with anybody from the outside world. When I went back for my second test, when I thought I was hep C positive, I went […] and got my heroin or whatever, and I came home and I used by myself. At that stage, I bought a whole bunch of syringes so that I would not have that problem [of running out of equipment] again. But like, yeah, I just, I knew that I was going to be sick from it.

[The doctor explained that] it attacks your liver. And I’m trying to take this in, but, like, on the other hand, I’m freaking out and, like, totally freaking out. I should have had mum with me probably, but I didn’t know that was going to happen, you know, and, like, because of my drinking and because I smoked as well, but because I was a heavy drinker […] he said, ‘Because you’re drinking as well, it’s not good for your liver, you know, both in combination, you know’. That’s why he sort of said [that I had about] 20 years [left to live]. I don’t know whether he was trying to scare me out of drinking at that age or what, you know, but yeah, he didn’t really explain too much. I wasn’t really listening too much after that point, you know, because I was just sort of freaking out. I just wanted my mum, sort of thing.