Who is Rose?
Rose lives alone in Melbourne, Australia, and has a young son. Rose lives alone in Melbourne, Australia, and has a young son. She describes her ethnic background as ‘Australian’: like one of her parents she was born in Australia while her other parent was born in Greece. Her primary source of income is a social security benefit for people living with a disability.* Rose was diagnosed with hepatitis C as a teenager and hasn’t yet done treatment. She describes her son as ‘the best thing in [her] life’ and her ‘motivation to get up and go’.
Rose was diagnosed with hepatitis C around 1999. She doesn’t quite remember if she was offered treatment at the time but thinks she was encouraged to delay treatment and keep an eye on her health more generally. In the past few years, various health professionals, family and friends have encouraged Rose to use the new treatment, but she has postponed it until she feels healthy, prepared and financially secure.
Rose doesn’t quite remember if she was offered treatment initially, but she thinks she was encouraged to delay it and keep an eye on her health more generally. She recalls, ‘I think [the advice was] just sort of like “Wait and see and watch how it goes and how you are over the years” and “just keep doing your tests”.’ Her mother helped her find information online about hepatitis C and treatment, and Rose remembers that ‘it was all scary stuff’.
Over the last few years, Rose has been encouraged to try the new treatments by various health professionals, family and friends, but she is waiting until she feels healthy and financially secure. As she explains: ‘They all mentioned it to me, but I wasn’t ready for it. I was a big drinker […] and mentally I wasn’t stable. That was one thing I had to fix, and it took many, many years […] I want to make sure that financially I’m good, you know, that I’m eating well, and there’s always food in the cupboard, and the house is always clean.’
While Rose knows the new treatments are ‘pretty good’ compared to the older, interferon-based treatment, she is concerned about being ‘ready to do it mentally’ and ‘wasting [health professionals’] time’ by doing treatment before she is ‘100% ready’. She is also concerned she may not ‘handle it very well […] might get a bit sick’ or that ‘something is not going to go right’. She explains further: ‘I can just feel it in my heart […] it’s just my luck, you know. I don’t purposefully do it, but bad luck follows me, it haunts me.’ While Rose plans to do treatment one day, she resents people who are ‘pushy and forceful’ about it.
When Rose is ready to do treatment, she hopes being cured of hepatitis C will help ‘get [her] health and […] energy back, and get back into work and get back to [her] old self again.’ She also says it would be great if treatment improved her energy levels so she could be more available to her son, who she describes as the ‘the best thing in [her] life’ and her ‘motivation to get up and go’.
*Services Australia Disability Support Pension.
Rose (F, 36, no treatment experience), who has never had treatment, says she feels tired and experiences liver pain and stomach bloating. Sometimes she consumes drugs to manage these symptoms.
I feel the effects […of] hep C, I feel it all, and all I want to do is sleep. Yeah […] I’m just tired, no motivation, no nothing. The only thing that gets me up and going, I’m not going to lie, [is] just going to have a taste of the good old drug, the upper or downer […It took] a few years before it [hepatitis C] started impacting me […I had] yellow-orangey skin under the eyes, my liver and my stomach is always bloating up, and you can’t eat, and [I had] toilet issues and just everything. It’s crazy and it hits you really hard.
Rose (F, 36, no treatment experience) explains how depression and anxiety reduced her motivation to have hepatitis C treatment.
Yeah. I’ve tried so hard to start the treatment. How many years … a lot of years on and off where I didn’t give two shits. I couldn’t wait to die, you know what I mean? So I was like, ‘I don’t care, I’m not going to do nothing’ […] Why? Because [my] depression and anxiety and all that [make this] a big uphill … an up[hill] and downhill process for me, and every day it changes, like, I can’t catch a break. I’m happy, down, happy, not happy.
Rose (F, 36, no treatment experience) also explains that people she knows have told her that the new treatment is an improvement on what was available in the past.
[I’ve heard] that [the new treatment is] pretty good, not too bad actually. As I said, […] I’ve seen people on the old one and the new one and, yeah, they are saying [that the treatments] are getting better […] So […] kudos to the new one […] Just the tablets, I think you take one every day for three months, yeah, something like that.