Living with hepatitis C

NOTE: Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added or, where ellipses (three dots) appear, removed. For example, ‘I had the nurses explaining to me, like, how easy it was […to have] treatment and I went to the [hospital liver clinic] and there was a doctor … can’t think of her last name, really nice lady […] Yeah, she explained everything to me and said it was a good time for me to do it now and, yeah, [I] just stuck with her and got that done.’

The people interviewed for this website talk in detail about their experiences of living with hepatitis C. While it’s not a major concern for everyone, most express worries about the potential long-term health effects of the virus. Others relate the impact of having hepatitis C on their sense of vitality and how they think of themselves (see also, Reflecting on experiences of treatment and cure).

The experiences covered in this section are diverse. For example, many people describe themselves as healthy and say they have experienced no significant hepatitis C symptoms. Some, however, say that symptoms and illness associated with the virus, including liver problems and fatigue, were a major part of their experience. Experiencing ill health was often a motivation to seek a diagnosis and start treatment (see also, Being diagnosed with hepatitis C).

Friends and family are often recognised as important to participants’ experiences of hepatitis C and wellbeing. Some recall, for example, learning about hepatitis C and accessing professional support through the advice and help of family and friends (see also, Treatment decisions: Family, friends and other important relationships). However, telling others about having hepatitis C can also be challenging, and some report receiving mixed responses to this disclosure. Speaking about hepatitis C in the workplace can also be a sensitive matter, with some participants concerned about stigma and discrimination. Others say they remain cautious about starting new intimate relationships.

Another key concern for participants living with hepatitis C is the possibility that their family, friends and children may acquire the virus. Many mention taking extra precautions with personal belongings around the house (such as toiletries), while others speak about taking specific precautions when injecting drugs. Many also expressed thoughts about reinfection. While some people say they would feel embarrassed if they acquired hepatitis C again after being cured, others report they would simply have treatment again without embarrassment.

Read on to find out more about the diverse experiences of living with hepatitis C.

Living with hepatitis C

Many of the people interviewed for this website describe hepatitis C simply, often as a normal part of their lives. They also speak about how hepatitis C fits in with or shapes their work, study and time with friends and family. For some, it was just one health issue to manage among many other health concerns and life priorities.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.

With experience of a number of other health conditions, Gretchen (F, 68, no treatment experience, experience with spontaneous clearance) says she’s adopted an accepting ‘what will be, will be’ attitude when it comes to hepatitis C. (Read her personal story here)

You know what, I had cancer and […], you know, two partners have died. I had a history of using [injecting drugs] and I come from a really respectable, well-to-do family, you know, and they’re all professionals […] They know about my past, and I’ve had to hide it a lot. I mean, I’m at my mum’s [house] now, she’s 96 tomorrow. She’s remarkable, incredible health, still living independently in the family home, you know. I’ve always had [the attitude] that anything will be what it will be, do you know what I mean? […] When you’ve had cancer, breast cancer – and I had a mastectomy, you know – everyone comes to you, ‘Oh, look, you’ve got to stay strong, you’ve got to [beat] this’ […] The doctors can do their most, but in the end, it’s going to be [whatever it will be…] So I think I’ve always had that attitude, and I had it with hep C [too]. What will be, will be.

Some people say that living with hepatitis C makes them feel concerned about the future.

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. (Read her personal story here)

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?’

Others describe hepatitis C as changing how they feel about themselves in significant ways. Living with hepatitis C led some participants to feel bad about themselves, prompting them to seek treatment (see also, Dealing with stigma and discrimination). These experiences highlight the significant impact stigma and discrimination can have on the lives of people living with hepatitis C (see also, Dealing with stigma and discrimination).

While Danny (M, 32, no treatment experience, experience with spontaneous clearance) hasn’t had treatment, he explains that he considered it partly because he felt ‘embarrassed’ about having hepatitis C and HIV. (Read his personal story here)

I just felt like, ‘I need to get rid of this before anybody knows that I am not a clean user all the time’. You know, I like … I just, I felt embarrassed for having it, and so I wanted to get rid of it as soon as possible […] I felt very low and very, you know, not good. I just wanted to get rid of it straightaway, because I was very sexually active, right up until this happened, and I wanted to get back to that.

Along with changing their feelings about themselves, several participants report worrying about people in their lives acquiring hepatitis C from them (see also, Treatment decisions: Family, friends and other important relationships).

According to Scott (M, 62, experience with old [interferon-based] treatment), when he was first diagnosed in the late 1990s, he was concerned that he may have accidentally given it to his son. Not having to worry about this any more is one of the main benefits of completing treatment for him. (Read his personal story here)

[Finding out I had hepatitis C] just made me internally sort of fearful and scared. [I was] worried about … you know, like, I was worried if my son had it, you know, because my wife at the time, she was diagnosed with it as well, and we’d used [injecting drugs] together before we got married. So we were worried [about] whether my son had it. He didn’t, he was all right, but … I don’t know. It’s sort of, like, shameful, it’s a shame, yeah. It was pretty, yeah, you feel pretty stupid […] It’s hard to feel any different […] I’ve talked about this before with people, like, the stigma works two ways, you know. You get stigma, like, from people I described […that you might meet in the] pub, okay, but the stigma comes from within you as well, you know, because you’re the one with the disease […] It restricts you too, you know. I’m just glad that’s all over, to tell you the truth.

Laura (F, 30, no treatment experience) explains that she is careful with her blood at home and takes precautions to make sure her children don’t come into contact with it. (Read her personal story here)

I’m not worried about passing it on to anyone else, but when I do cut myself, like, when I’m cooking dinner, I make sure I clean up my blood, or if I get it on the food, it goes straight in the bin. So, I am sort of worried [about it]. I know it’s [acquired through] blood-to-blood contact, but you know what kids are like, they hurt themselves and sometimes they cut themselves and [blood] can go into the body.

While living with hepatitis C is a concern for many of the people interviewed for this website, a few identify unexpected outcomes.

Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) recounts how he developed more confidence through HIV and hepatitis C–related advocacy and peer work. His advocacy experiences have shaped his perspectives on his life and the future. (Read his personal story here)

Well […] because I became an activist very quickly and used to do things like jump on a bus on a Friday night and go down to Canberra and throw tins of red paint over Parliament House steps because we weren’t getting drug therapies. It meant that I was an active participant in life. It’s amazing, people who meet me will always make the comment that I am like a walking encyclopedia because I just don’t forget a thing, and they say, ‘How on earth do you know all this stuff?’ When you have had something affect you reasonably early, you seek out as much information as possible and that just becomes your life, seeking out information, not necessarily about that topic but about everything […I am] not scared to be in confrontational situations, not scared to voice my opinion. What have I got to lose? I had everything to lose, and I championed that, so now, I have got nothing to lose, so if I was to die, I have lived a fulfilled life.

Experiencing symptoms and illness

Some people who have hepatitis C do not experience symptoms. Many people live with hepatitis C for years and may not notice any symptoms or feel unwell. Importantly, symptoms may only occur once the disease has progressed enough to cause severe liver damage. Of the people who participated in this research, many describe themselves as healthy and as having experienced no significant symptoms or periods of illness related to hepatitis C. Chris (M, 60, experience with new treatment [DAAs]), for example, describes the symptoms of hepatitis C as ‘pretty unnoticeable’ and Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) says they ‘didn’t worry’ him, as he didn’t notice any ‘ill effects’ for many years. However, a few did experience symptoms or periods of illness. Participants most commonly report experiencing flu-like symptoms, liver pain, lethargy, fatigue, tiredness or reduced vitality and skin-related issues.

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. (Read her personal story here)

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.

Dominic (M, 36, experience with new treatment [DAAs]), who was having treatment at the time of his interview, says he often feels tired and fatigued. He connects his treatment to his hope for a better future. (Read his personal story here)

Yeah, I’ve been feeling like it’s taking its toll after all these years, yeah. I feel fatigued all the time, I feel a bit of pain […] Yeah, not only that, but it would also be good to not keep telling everyone I have hep C […] When you’ve got it and [you feel like] your body is breaking down and dying, you don’t really have too much hope for the future, you know. You know your body is diseasing away, you know what I mean? [Being cured of hepatitis C] will give me a bit more drive to achieve better things. I think, I don’t know, I could be wrong, but that’s how I feel […] I’m just hoping it will give me more energy back, because I get extreme fatigue a lot.

Experiencing symptoms and illness led some participants to have hepatitis C tests (see also, Being diagnosed with hepatitis C) or begin treatment (see also, Reflecting on experiences of treatment and cure).

Kylie (F, 46, experience with new treatment [DAAs]) explains that some health issues prompted her to start treatment. (Read her personal story here)

[I wanted…] my liver to get back to healthy […] I was starting to get headaches […and] I started thinking ‘Well, maybe that’s related to the hepatitis’ […] I wasn’t, like, doing a lot of reading and whatever, and I was suffering from a lot of headaches and just getting tired, like, during the day when I shouldn’t have been getting tired. Like, it was weird, I had no symptoms in the beginning, but […after] few years the headaches and that started kicking in.

Relationships, confidentiality and telling others

Discussions of the impact of hepatitis C on relationships with family, friends and partners are common in our interviews. Some participants describe family and friends as vital sources of knowledge about hepatitis C and living with the virus (see also, Treatment decisions: Family, friends and other important relationships).

Rashida’s (F, 52, no treatment experience, experience with spontaneous clearance) husband is a doctor and encouraged her to have tests after becoming concerned she may have hepatitis C. (Read her personal story here)

I was going [to our summer house overseas] and when we go to the beach, I found myself feeling exhausted easily, I am not well. At that time, I had my fiancé [with me] – my husband [now], but he was my fiancé at that time – and I [was not] feeling well. [After] two days […] I […was] getting nauseated. He told me, ‘Rashida, get tested for hepatitis C’. I [asked] him, ‘Why?’ He said, ‘Please get tested for hepatitis C’, because he is a [doctor], so he knows [about hep C because] he meets a lot of patients. I don’t know why he correlated [my symptoms with hep C], but I went and did all the hepatitis […tests] and I was [hep] C positive. It was something very new at that time, and I think it was 1994 maybe, or 1995, something like that.

For many of the people we interviewed, family and friends were also an important avenue of support while living with hepatitis C. These relationships were often central to the meanings given to the virus and experiences of living with it.

Cal (M, 50, incomplete treatment experience) recounts how he called his mother immediately after receiving his hepatitis C diagnosis when he was 17. He explains that she would research and tell him what she found. (Read his personal story here)

I was in tears when I came out of there, so I just went straight to the phone, public phone, and rang her up and she […] came straight down, and it took a while to calm her down, I remember, and then from then, Mum just went gung-ho into [worked hard to find out about] the hep C. She’s the one who told me it when it got named ‘hep C’. Yeah, Mum is really well educated on it. She wanted to find out as much as she could on it […] Once she [was away for about six months], I didn’t hear from her for a bit, like, she had to go and get her head together or whatever, and then, like, she was still doing, you know, looking and researching. So every time Mum and I would catch up, she’d always have something new to tell me about […] all the treatments and whatnot. I sort of … I didn’t know too much, because I wasn’t looking into it, but [I] just [learnt more] from hearing it from my mum, you know.

Thinking further than her immediate family, Sana (F, 71, experience with new treatment [DAAs]) says that she found speaking to other relatives reassuring. (Read her personal story here)

I was worried with my age, because the information [I got from] different channels […meant] I felt like [hepatitis C’s] a big thing. I don’t know what’s going to happen with me – and also, you know, other myths, and all the information I was getting [was confusing]. Some people say you just die with it, you know, [or] it depends on which stage you are [at… or] it can’t be curable, and all that. So, it gives, like, a lot of mixed feelings […] I kept thinking, ‘What’s going to happen, and is it going to really get treated as [the doctor is] saying?’ Yeah. I told all the close relatives […overseas]; it was good to speak to the relatives. They said, ‘Yeah, you will be all right’ and [gave me] assurance. ‘It’s not like a disease that doesn’t have treatment. So, you will get the treatment and it should be all good’.

While many participants report they had caring responses from friends and family members, others express concern about negative responses, an issue they manage actively in daily life.

Paulie (M, 45, experience with new treatment [DAAs]) tells people he has hepatitis C and, while he has never experienced a stigmatising response, he says it is not an easy conversation to have. (Read his personal story here)

I told a few friends [when I was diagnosed with hepatitis C]. They’re users, and anyone who I ever had drugs with, I always tell them before I have a hit with them. I always told a female [sexual partner] before I got intimate with them that I did have it, just as a way of courtesy […] Most people … no-one really had … well, reactions would be sad, upset, you know, but no-one was upset with me or making fun of me. I did feel a little bit [of] low self-esteem and that did make me feel a bit upset deep down, but what’s done was done. [I thought], ‘I’ve got the virus,’ so I had to deal with it.

Being open about having hepatitis C with family and friends is important to many, while others choose to keep it confidential. Telling others helped some to strengthen their relationships, build trust and establish a support network. However, some of the people interviewed say they’ve encountered negative attitudes. Telling intimate or sexual partners about having hepatitis C was difficult because of stigma (see also, Dealing with stigma and discrimination).

Rusty (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience) discusses how his partner was very upset when he told her that he had hepatitis C in the early 2000s, and she suggested he expected her to care for him. (Read his personal story here)

[When I told my partner I had hepatitis C] it impacted [her] and she went off her head, you know. She wasn’t a drug user or anything, you know. She just went off her head and thought I was completely stupid and that I should know enough about it not to get it. She went off her brain [saying], ‘What do you want me to do? Do you want me to look after you, now that you’ve gone and got hep C, you want me to look after you?’ She did [look after me] anyway, but she wasn’t very happy about it.

Reflecting on the experience of telling his intimate partner about his diagnosis in the late 1990s, Tristan (M, 49, repeat diagnoses, experience with both new [DAA] and old [interferon-based] treatments) says it reminded him of dealing with stigma in his own family. (Read his personal story here)

So, the chick [woman] I was with, once she found out when I went to prison that I had hep C, she sort of broke it off with me, and I think we had sexual relations maybe eight or nine times after that, but she was freaking [out]. I tried to give her the spiel that, ‘No [it can’t be transmitted sexually] and this and that’ […] but she didn’t want to hear it, just like my parents didn’t want to hear it. They’d be like, ‘These are your dishes to use, and you go wash them outside,’ and this and that, so yeah […] Oh, you might as well have had the dreaded lurgy […] I tried to school them up in that, but yeah.

Thinking about his own responses to hepatitis C in the past, Ricky (M, 35, no treatment experience) says that he is worried that having the virus might scare other people away from him. (Read his personal story here)

[Speaking to other people about hep C] frightens me, because you’ve got to be honest with people [but] If you tell them that you are hep C positive [I worry that] it’s going to scare them away, I guess, because they don’t want to get the virus themselves. I remember before I started [injecting drugs] and when [people] used to tell me they were hep C positive, I would freak out, I guess. It scared me, [so] I know what it’s like […] Just freaked me out, hearing the words ‘hepatitis C’ … gave me really bad anxiety.

Many of the people interviewed for this website also speak about how they manage the effects of hepatitis C with their work commitments. Some participants say that going to work while having treatment (especially the older, interferon-based, treatment) is challenging. While some report they feel comfortable telling their co-workers about their hepatitis C, others say they avoid doing so. They’re concerned their colleagues won’t understand, or they’ll be discriminated against, or they’ll even lose their job if their employer becomes aware of it.

For more information about how to get advice about hepatitis C-related discrimination, visit the Hepatitis Australia website.

Gracie (F, 65, experience with new treatment [DAAs]) used to work as a teacher and was open with students and colleagues about having hepatitis C. (Read her personal story here)

Yeah. I just told everyone, ‘I’ve got hep C […and] don’t get my blood on your blood. So, if you’re bleeding, put a Band-Aid on. If I’m bleeding, or if you notice I’m bleeding, because sometimes I don’t notice, tell me. We’ve got the alcohol swabs there and the Band-Aids in the classroom’, and I just made them all aware that it was an issue […] It’s just easier if you’re honest, you know, rather than hiding and stuff and being ashamed. Just come straight out and say, ‘I got it sharing needles. Bad luck. Deal with it.’

A major worry for many is transmitting hepatitis C to family and friends. Several participants discuss strategies to manage this risk. Many ensured that their family members didn’t use their toiletries, for example. Others spoke about injecting practices, often paying greater attention to hygiene when consuming drugs with other people, to minimise transmission risks.

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. (Read her personal story here)

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.

Dana (F, 53, no treatment experience) says that her main fear if she acquired hepatitis C would be passing it on to her children. (Read her personal story here)

My only concern is if I got a disease, can I pass it on to my children? […] Yeah, that’s my only concern. I don’t give a damn about me, to be honest. Well, I would want to know what’s going to happen to me, am I going to get sick or what’s going to happen to me, but my main concern is, if I am diseased, can I spread it at home? What do I need to do, what do I need to be careful of?

Chris (M, 60, experience with new treatment [DAAs]) says that when he had hepatitis C, he was more careful when injecting with other people, because he didn’t want others to acquire it from him. (Read his personal story here)

I am very conscious of the harm reduction […approach to] drug use, which is a really good thing. I am glad that the state has taken that attitude rather than just trying to withhold needles and make it a very difficult thing to inject. So, I have always been careful … since I had hepatitis C, I was always more careful about making sure that things were clean and separate if I was around people using drugs […] When it comes to injecting, which you often do with other people, it’s really important that we don’t share equipment. [It’s important] that we keep things separate, that we only use needles once, that we use alcoholic swabs. I mean, the whole harm reduction and care with body fluids is so much more focussed on and followed [these days].

As he explains, Ricky (M, 35, no treatment experience) spoke to a friend almost immediately after receiving his diagnosis. His friend suggested that he also speak with his aunt, whom he lives with, but he was worried that she wouldn’t respond well. (Read his personal story here)

I told my mate [about the diagnosis] and he said, ‘Just relax, but maybe it’s a good idea to tell your aunty.’ […But] I’m just worried she might flip out […] She’s been positive with me, like, you know, I’ve […] gone [off track] a few times, but I’m back on track. She’s picked me up so many times […] I’m a bit worried about my aunty, and when I go to the showers and that, I take my toiletry bag with me and I make sure that my toothbrush is in there, and if I’m using razors, put all my razors back in there or I have another bag for all my dirty blades, because I use them [in the same bathroom that my] nephews [use]. So I just […] put it in the bag [or] make sure they are in the bin so no-one cuts themselves.

Also focussing on injecting, Evan (M, 45, no treatment experience) describes being careful about using new equipment and making sure to keep it separate when injecting with other people. (Read his personal story here)

Well, everything has to be my own equipment, everything has to be brand new, like, I won’t, yeah, I won’t share a spoon, you know, [or have] two people drawing out together, or any of that sort of stuff. I won’t do anything like that, and [I] sort of got this from my mum, because I don’t know, maybe you learn […] Why do we put two sugars in coffee? Because we saw adults do it, so we think two sugars have to go in a coffee.

Reacquiring hepatitis C

As many of the people who shared their stories for this website knew, hepatitis C can only be acquired through blood-to-blood contact, for example, by sharing injecting equipment or razors. Importantly, there is no limit to the number of times treatment can be accessed in Australia, regardless of how hepatitis C is reacquired. However, the potential for reinfection was on the minds of many, for both those who had treatment and those who spontaneously cleared hepatitis C. Many mention taking precautions to manage this risk through greater attention to injecting equipment and hygiene. Others say that reinfection is almost impossible to avoid in some settings, such as prisons, where access to new injecting equipment is unavailable. A few participants report that reinfection is not a significant concern for them, though, because they are managing a series of more pressing health and other issues.

Despite concerns about reacquiring hepatitis C, Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) says that some settings, such as prison, constrain harm reduction efforts and increase risks associated with injecting. (Read his personal story here)

I would feel pretty stupid if I caught it again, you know, I really would […] because I know enough about it to not get it […You] just say, ‘No’ to using a friggin’ syringe that 20 people have used before you […But it’s harder in jail], there is no equipment in jail. There is none, and you know what, I’ve seen people … you can buy a watch, okay, […and], you know, the watch pin that goes in between the watch and the […wrist]band, I’ve seen people take out the watch thing, because they figured out that this watch pin was hollow, right … [laughs] and that was an aluminium piece. So, they would sharpen up this watch pin and make a syringe out of it, just so they had a clean one, and it’s, deadset, it’s like a friggin’ nail in your arm every time.

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. (Read her personal story here)

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.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) recalls that at one time he didn’t care about acquiring hepatitis C again, as he had other more urgent concerns. He clarifies that he since leaving prison he has been careful to reduce his risk of acquiring it again. (Note: strong language) (Read his personal story here)

Like, I was really happy. I was clean [abstinent] in recovery and I was getting really healthy again, and then I relapsed and went back to jail. I didn’t really give a fuck [about getting hepatitis C]. I had immigration hanging over my head, like, a big jail sentence hanging over my head and, yeah, like, I didn’t really, like, care. But then when I got really sick [with hepatitis C], I did [care…] When I got released, like, I was mindful [about injecting with other people], like, I only used my own equipment, and now that I’m clean again, I am really happy.

While our participants say they worry about getting hepatitis C again, most say they are aware treatment is available and are confident they would have it again if necessary (see also, After cure: Health and life in general).