Who is Trish?
Trish lives in Sydney, Australia, with one of her three teenage children. She describes her ethnic background as ‘Northern Irish’: like both of her parents, Trish was born in Northern Ireland. Her primary source of income is a social security benefit for people living with a disability.* She was cured of hepatitis C with the older, interferon-based treatment in about 2010.
Trish was diagnosed with hepatitis C in about 1999. To begin with didn’t know much about her treatment options, but ‘years later’ – in about 2010 – she started the available interferon-based treatment. While the treatment side effects weren’t as bad as she thought they’d be, she found it ‘fairly hard’ having treatment while looking after her children. Her treatment was successful, but she describes feeling ‘paranoia’ about hepatitis C coming back, even though she knows it’s not possible without blood-to-blood contact with someone who has it. She says that her experience with hepatitis C has turned her into a ‘clean freak’.
After her diagnosis, she wondered how she had acquired it. She thinks it was most likely from sharing water while injecting drugs: ‘I was pretty disappointed in myself, because I had never shared a needle, ever. And, you know, I was told you could easily contract it from using the same water and spoon and tourniquet, and I never used anyone’s spoon either, so I knew I must have picked it up from using [the] same water [as someone else].’
Trish says the doctor who delivered her diagnosis didn’t explain her treatment options. It wasn’t ‘until years later’, when she went to a different clinic, that she was asked whether she would like to have treatment. She remembers ‘straight away’ saying, “Yes, I want to get rid of it”’. Until that moment, she ‘didn’t even know [she] could’.
In the years between her diagnosis and having treatment, Trish was concerned about stigma and mostly kept the diagnosis a secret: ‘I actually told no-one. I didn’t even tell my own mum. My kids were really young, so they didn’t know anything, and I just made them use their own face cloths and never use my toothbrush and, you know, things like that. They just thought I was a bit strict. They were young, they wouldn’t have had any idea. I did tell my partner at the time.’
In about 2010, Trish started a course of the only treatment available at the time, the interferon-based medication. Staff members at the hospital administering her treatment advised her that it might have side effects, but she remembers thinking, ‘How bad it could be?’ and ‘If it gets rid of it, it gets rid of it’. Trish also recalls making adjustments in her life to accommodate the treatment: ‘I actually stopped working for a while […] I had just gone back into the workforce […] but I couldn’t really [work while having treatment]. I just couldn’t keep up, so I quit instead of waiting … I didn’t want to be fired or I didn’t want anything bad on my working record.’
Although the side effects weren’t as bad as she expected, Trish says that having the treatment while also looking after her children was ‘fairly hard’. She recalls that her partner sometimes supervised the children while she was feeling unwell: ‘I was very lucky that he was there. I mean, he didn’t do much with the kids, he basically would sit on the couch and watch them, […but] at least it let me sort of just lie down and be sick for a bit.’
Trish was so ‘anxious’ and ‘worried’ that her treatment would be unsuccessful, that even after being informed that she had been cured, she wanted follow-up tests to ‘make sure’. Thinking about how she was feeling at the time, she says she ‘had the paranoia that it might come back, even though [she knew] that’s not even possible […without] blood contact with someone [who has hep C]’.
Reflecting on the possibility of reinfection, she says she would feel ‘terrible’ if it happened, but she would have the new treatment, as she’s heard it is much better than the old medications: ‘[I’ve been told] about the new treatment [and…] realised how easy it is to get [rid] of it now. Everybody says there is no side effects, you just breeze through it.’
While she no longer has hepatitis C, Trish still thinks about it regularly: ‘I bring my razor straight out of the shower. We have got a waste disposal where we put it in. I make sure it’s right down there. I know I don’t even have it any more, but I am always … it turned me into more of a clean freak than I already was, I think.’
*Services Australia Disability Support Pension.
The health of her family is an important concern for Trish (F, 41, experience with old [interferon-based] treatment). She recalls being careful about bleeding around her children and taking care with where she kept her personal belongings.
I actually told no-one [about hep C]. I didn’t even tell my own mum. My kids were really young, so they didn’t know anything, and I just made them use their own face cloths and never use my toothbrush and, you know, things like that. They just thought I was a bit strict. They were young, they wouldn’t have had any idea. I did tell my partner at the time, and he [had] had hep C [in the past] too, you know, but […] he [mistakenly] told me he didn’t [have it any more…] So, I was always really careful […] I mean, if I bled, I moved away from everyone, you know.
Trish (F, 41, experience with old [interferon-based] treatment) explains that she would be very unhappy if she acquired hepatitis C again, and she works hard to ensure that she doesn’t.
Now I am so much more aware of it, I am constantly trying to make sure there is never any chance of me getting it again. You know, I think it almost helped me with not […injecting drugs any more], like, sort of reaffirming, like, [that] I didn’t want to stick a needle in my arm any [more]. So I am definitely never doing that again, and even when I go to the doctor’s […] That was the worst part, I think, when I had hep C, is that when you went to the doctor’s for anything, you had to sort of disclose that. I mean, you couldn’t not disclose it, it’s not fair […] I would feel […] terrible […] if I got it back […] I would never say that about someone else who had hep C. [Instead] I would be like, ‘You can do this treatment, now you can get rid of it easily’. But if I caught it again, I would be probably [disappointed] with myself for even letting that happen.
Even though she had been cured of hepatitis C with the old treatment and no longer injects drugs, Trish (F, 41, experience with old [interferon-based] treatment) says that she questions whether the successful treatment results were accurate.
I ended up having to go back to the doctor who originally told me I had hep C. He was my prescriber. I went back to him, and I had asked for the follow-up blood test: I had to ask them. He just let me go through the treatment, and that was it. He didn’t do any [follow-up] tests. They didn’t do any tests and, yeah, I ended up actually asking him [for a test] and it was about two months or three months after I had the treatment. I said, ‘Can you do my bloods again and tell me if anything comes up, if I still have hep C?’ and he said ‘No, [we won’t do another test]’, and even after he said no, I was still worried about that. Afterwards, when I asked my GP, months after that, I had another blood test and asked him to tell me anything that came up, and they said ‘No’, but then […] 10-plus years later, I still asked for it again. So, I think there’s always that little bit of paranoia that somebody has got it wrong and it’s still there.