Who is Brooke?
Brooke lives alone in a regional town in Victoria, Australia, and has two adult children. She describes her ethnic background as ‘Aboriginal’: like both of her parents, Brooke was born in Australia. Her primary source of income is a social security benefit for people living with a disability.* Brooke says that her experience of hepatitis C and treatment showed her how ‘resilient’ she can be.
Brooke was diagnosed with hepatitis C in the late 1990s. On receiving her diagnosis, she worried that she might die and that her children would have to grow up without her. In 2011 she started having the interferon-based treatment, the only treatment available at the time. While she describes her treatment experience as ‘horrible’, she recalls wanting to ‘stick it out no matter how hard it got’. She ‘vividly’ remembers the moment she was told her treatment was successful, and while she continues to live with health issues unrelated to hepatitis C, she describes being cured as ‘monumental’.
After receiving her diagnosis, Brooke was extremely worried. As she puts it, ‘Well, one really big thing [for me] was [the question …] “Am I going to die from this horrible disease?” […] I thought, “If I don’t get on top of this and try and, you know, [cure] it, am I going to die, are my children not going to have a mum?”’
In 2011 Brooke decided to have treatment but was advised against it. As she remembers, ‘I was strongly advised not to do the interferon, because it was just a horrible treatment and the success rate wasn’t very high’. She says that she was ‘so determined’ to have treatment and be cured of hepatitis C that she went ahead anyway, and ‘so [her] journey began’.
As she explains, part of her motivation for treatment was that she acquired hepatitis C from her abusive ex-husband. He was, she says, a ‘very violent man’, who had taken ‘so much away’ from her. For Brooke, passing on hepatitis C was another ‘horrible thing’ that he had done to her, so she was ‘determined to get rid of it’.
According to Brooke, the specialist who managed her treatment was ‘lovely’ and advised her that the interferon-based treatment she was having was going to be ‘horrible’. She recalls that her experience was even worse than she had expected. For Brooke, treatment was associated with significant mental health issues: ‘Lots of anger, lots of irrational thoughts, lots of complete mental breakdowns […] Everything that they advised me that it would be, it was that and more. It was horrific’. Brooke explains that these effects made her consider stopping the treatment, but she pressed on with it: ‘You know, there were times when I thought, “Can I keep doing this?”, but I would say to myself, “You have come this far, you have got to keep going”’.
Thinking about how she managed to complete the treatment despite such challenges, Brooke says, ‘Really, all I could do was just pull on my own resources and my own strength, because there was nothing anyone could really do that was going to help with those symptoms. It was my journey and I had to stick it out no matter how hard it got’.
She clearly remembers when she found out that her treatment had been successful, describing the moment as ‘monumental’: ‘One day [a] nurse […] rang me […] I can remember that phone call vividly, she rang and she said, “Brooke, are you sitting down?”, and I said, “Yes, why?”, because when she said that, I thought I hadn’t [been cured], I thought it had gone the opposite way. She said, “Guess what?”, and I said, “What?”, and she said, “You are all clear”. I just got goosebumps [… and] we rejoiced together. I cried and she was just so happy for me. It was a monumental moment’.
While Brooke no longer has hepatitis C, she says that she still manages several other health issues: ‘I am struggling with a lot of, like, mental health [issues …] I am getting older, lots of arthritis and bursitis and, you know, high blood pressure […] there’s a few things going on’.
Despite these challenges, Brooke says that her experience with hepatitis C and treatment taught her that she is ‘resilient’. As she puts it: ‘I am resilient, you know, and I always say, “You can knock me down, but you can’t keep me down”’.
*Services Australia Disability Support Pension.
Brooke (F, 58, experience with old [interferon-based] treatment) says that her diagnosis in the late 1990s had ‘emotional baggage’ attached to it. She adds that it is was important to her to explain to others that she didn’t acquire hepatitis C through injecting.
[If] I told someone I had it, it came with, you know, the description of how, why and when, because people can be very, you know what I mean, they hear one thing and that’s it, it’s black and white. Well, it’s not black and white with hep C, because there […are those people with it who] don’t use drugs. I would draw on my strength again and sort of try and educate people […] a bit about hep C, because, as I said back then, it was such a dirty word, you know, because of the stigma that surrounded it. I guess I did feel, you know, when I use that word ‘dirty’, because people would think the wrong thing about me [and assume that I inject drugs] when that wasn’t who I was or how I got it. So, there was a lot of emotional baggage there as well.
When Brooke (F, 58, experience with old [interferon-based] treatment) first learnt she had hepatitis C in the late 1990s, she wondered if she might need a ‘liver transplant’ or would die. She explains she was particularly worried about how her health may impact on the lives of her children.
Well, one really big thing [I thought] was, ‘Am I going to die?’ That was something that came pretty much straightaway, because what I knew about hep C was that it could not be treated … you could die from it. That was the really big thing for me when I first found out. I thought, ‘Am I going to die from this horrible disease?’ Because if your liver goes, you know, then you need a transplant. So it led me to being so determined to do the treatment, because I thought, ‘If I don’t get on top of this and try and, you know, [… get rid of] it, am I going to die? Are my children not going to have a mum?’
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.
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’.