Miguel’s Story
Name: Miguel
Gender: Male
Age: 48
Who is Miguel?
Miguel lives alone in an apartment in Sydney, Australia, and volunteers at a dog shelter. He describes his ethnic background as ‘Portuguese’: like both his parents, Miguel was born in Portugal. His primary source of income is a social security benefit for people living with a disability.* He completed a course of the new treatment in 2016, and reflects that the experience made him feel ‘relieved and stronger’ and gave him a ‘new outlook’ on life.
Brief Outline:
Miguel acquired hepatitis C during a period in which, as he puts it, he was a ‘party animal’. He was diagnosed in his twenties, when he and his partner were preparing to have a child. About a decade later, he found out about the new treatment from his mother who had been treated with it successfully. While he remembers thinking at the time that this is ‘too good to be true’, he eventually did the same. Around that time Miguel also found a new job and felt that ‘things were falling into place’, which, alongside his cure, meant he began to ‘look at the world with a new set of eyes’.
Prior to being diagnosed, Miguel knew about hepatitis C because his ‘grandfather was into biology and he told the family about […] blood-borne diseases’, and because his mother had acquired it from a medical operation before immigrating to Australia.
In his mid- to late-twenties, Miguel and his partner were preparing to have a child. He remembers they ‘ended up doing blood tests, and that’s when I found out that I was hep C positive’. Thinking about this time, he recalls that he often compared his experience with that of his mother, although in comparison, his experience was ‘quite easy’. She ‘lost weight’ and had a ‘yellowish tinge colour in her eyes’, whereas he ‘never got anything like that’.
After he’d been living with hepatitis C for ‘maybe a decade or more’, Miguel remembers, his mother rang him one day and said, ‘There’s a new treatment, the doctor reckons’. As he explains, a ‘couple of weeks later she’s on the tablets [new hepatitis C treatment]’ and ‘within three or four months [she had been cured]’. He remembers thinking at the time that this is ‘too good to be true’, but about a year later he decided to have treatment too.
His hepatitis C took longer to cure than his mother’s, and at first he didn’t feel ‘much difference’ afterwards. However, later he started to feel ‘positive’ and ‘like [he had] a fresh new start’ in life. During this time, he recalls, he also ‘found some work and things were falling into place’. All these changes together meant he ‘felt relieved and strong, and just able to look at the world with a new set of eyes’.
Overall, Miguel recalls that curing hepatitis C ‘felt good [and gave me a] whole new outlook on life as well – and, just, relief for me and my mum’.
*Services Australia Disability Support Pension.
Miguel (M, 48, experience with new treatment [DAAs]) explains that prior to his diagnosis he primarily relied on his friends for information about 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.
As Miguel (M, 48, experience with new treatment [DAAs]) explains, his mother’s success with the new treatment curing her of hepatitis C influenced his decision to have it too.
[I had hep C for] 10 years or maybe a decade or more […] until […] Mum one day rings me and says, ‘There’s a treatment [available, my] doctor reckons’, and then a couple of weeks later she’s on the tablets, and within three or four months she [has been cured of] it, and we were like, ‘Oh wow […] we’ve got a cure’, and I thought, ‘It’s too good to be true’, and yeah, I did it too. So […] my mum found out about her treatment and then obviously it worked, and I found out through my doctor that I too could do that, and after we checked up the liver count, this whole thing, yeah, I got the drugs. So as soon as the treatment started, I started kind [of] feeling not much difference, but positively and, you know, like a fresh new start kind of feeling.
Focussing on stereotypes about hepatitis C, Miguel (48, M, experience with new treatment [DAAs]) says that while people often make assumptions about how people acquire the virus, he refers to his mother’s experience to challenge those assumptions. For Miguel, this emphasises that a wide range of people are affected by hepatitis C.
So, I stopped using [drugs] and, you know, [people] who stop using want to be looked at differently. They don’t want to be criticised and judged any more in the same way, because it’s treated now. In the same respect, someone like me, who [doesn’t take drugs any more] but had hep C, I felt like after I [was cured I wanted to be treated differently…] Society puts these labels of judgement [on people]. You know, any of the things that people do are their business, but I still can’t help it when other people talk about it and they start saying, ‘If you didn’t do this and that, then you wouldn’t have hep C’, and I would turn around and say, ‘That’s not true, because my mother got it and she’s not into drugs or anything like that.’