Chapter Three: The Day-to-day

I want to describe what I feel emotionally as I go through the cycle of sick-healthy-sick-healthy that is the course of my life. Anything I say is subject to change at any time. I am used to feeling depressed or anxious or euphoric at certain points, but I can never really depend on that. My emotions do not well up in orderly sequence, one at a time. Conflicting feelings vie for ascendancy, giving me freedom to choose – or to repress. (Register 1987:229)

This chapter addresses some of the central components of living with hepatitis C and the meaning that this illness has for the twenty research participants. Hepatitis C, as a relatively new disease, has an uncertain trajectory and a varied symptom base. Participants report being affected in a variety of ways: for some stigma is the most significant factor, for others symptoms such as fatigue or depression are debilitating. For those whose lives are disrupted by the cycle of ‘sick-healthy-sick’, bodily fidelity cannot be taken for granted. This can elicit a closer relation with and reading of the body, enabling certain strategies to be put in place to alleviate discomfort. However, day-to-day activities such as looking after children, housework and employment are all subject to the vicissitudes of the disease, creating stress for the highly symptomatic. While much writing on chronic illness posits diagnosis as a biographical turning point, this appears to be predicated on contextual factors. One finding of this research was that participants who had already experienced significant life threatening events incorporated the diagnosis of hepatitis C into their identity more readily than those with stable lives.
Symptoms and strategies
The undercurrent of chronic illness does not go away. It menaces. It erupts. It is out of control. One damned thing follows another. (Kleinman 1988: 44)

Symptoms of chronic hepatitis C are wide ranging and include: fatigue, irritability, depression, insomnia, nausea, muscle ache, headache, inability to concentrate, liver pain, frequent urination, and sensitivity to light, sound and particular foods (Macdonald et al 2002, Hopwood and Treloar 2003, Waller 2004, Dolan 1999). As these symptoms can be mistaken for, or seen as similar to other ailments or health problems, they can be easily overlooked in a medical setting (Hanssens 1995, Waller 2004). Recent research (Waller 2004, Macdonald et al 2002) has discovered that symptoms often occur in temporal clusters; in what may be called hepatitis C ‘attacks’. Increased research is needed in this area, as current medical inattention to hepatitis C symptomatology risks invalidating individual experience and perpetuating distrust in the medical system. Waller (2004) finds that dissatisfaction with the way symptoms are dealt with is a central motivator for individuals with hepatitis C to use alternative medicines. Such frustration is apparent in Ruby’s statement1:
There are a lot of questions that just didn’t get answered, and (partner) had the same thing as well. About pain in the liver and they’d just go nah there is no reason for you to have pain in the liver … and so many people with hepatitis C complain of liver pain, but the doctors don’t accept that, they just don’t want to hear it, they say there is no reason. Well I have got this disease attacking my liver, maybe that is a reason for you, but no, they wouldn’t accept that. (Ruby)

Fatigue was the most common physical symptom for my participants, a finding that correlated with other hepatitis C studies (Crossen et al 1999, Treloar and Hopwood 2003, Waller 2004). The problem with fatigue as a major symptom is that it is invisible and not easily disassociated from what ‘normal’ people experience in their everyday lives:
…there are times when my performance is going to be lessoned because I have hepatitis C. And where I struggle is because there are patches in the afternoon between one and three where I have to drink a lot of water and eat lollies to keep my sugar level up, and that makes me manageable and I just don’t want to say, “oh I’ve got hepatitis C I’m really tired”. It’s like they don’t care, they don’t. It’s like you might find someone who is understanding, but really when you are in a space of working they are not going to stop and say, “you’ve got hepatitis C take it easy”. Everybody gets tired. Why do I want to say I’m tired and the person goes “well so am I!” I don’t actually know when to make people aware of that. (Zac)
Zac’s experience is common, in that participants who experience symptomatic fatigue often keep it too themselves; as ‘everybody gets tired’. However the tiredness experienced as a result of hepatitis C can be seen as significantly different. It often arises suddenly and severely, unrelated to physical or mental exertion:
I suffer from lethargy really badly, um I have periods where I just get to a point in the day where I can’t even think, it’s just like my head is like cotton wool, and I need to lie down. I usually try to lie down every day, just recharge and I try and watch what I eat and try to go to bed early. (Susan)

Zac and Susan both report using strategies to manage their symptoms such as eating sweets, drinking water and having afternoon naps. Similarly, individuals with hepatitis C often become more attuned to reading their bodies; recognising signals to slow down, sleep, eat, or not eat certain foods:
And reading my body, fish and chips can go down beautifully sometimes but not other times and I can feel it yeah. Reading my body, I think I have got really in tune with doing as much as I can. I ignore it too, but I know I can read it as well, yeah definitely (Lucy).
Charmaz calls this heightened awareness of the body that of the ‘dialectical self’2, relating:
… the liminal relationship certain respondents described with their bodies in which they gained a heightened awareness of cues that other people disavow, disregard, or do not discern. (Charmaz 1997:70)
For many healthy people “the fidelity of our bodies is so basic that we never think of it” (Kleinman 1988:45). Leder calls the attention brought to the body by ‘problematic states’ as one of ‘dys-appearance’. Here the body asserts its presence through dysfunction, in contrast to its ‘disappearance’ when all is running smoothly (Leder 1990). While the body’s fidelity can never be assured, for those living with hepatitis C and other chronic illnesses bodily contingency or dys-appearance is a daily reality.

Psychological symptoms can be harder to prepare for, recognise or modify than the purely physical. Depression and irritability are both common manifestations of chronic hepatitis C (Hopwood and Treloar 2003, Waller 2004, Dolan 1999, Macdonald et al 2002). Many people who suffer from these conditions, particularly irritability, may not attribute it to hepatitis C; believing instead that they are ‘bad’ people. The discovery that certain psychological states are not character defects but attributable to illness can provide a huge relief. Often this information is only gained through talking with other infected individuals, or by utilising sources such as The Hepatitis C Handbook (Dolan 1999). Twelve of the twenty participants spoke of depression as being a part of their lives, and while most connected this with their hepatitis C, it was a link frequently discredited by the medical profession:
Having hepatitis C causes depression there is no doubt in my mind. I knew as the disease took over more and more and the sicker I got, the worse I got mentally, and it wasn’t [due to] knowing I had hepatitis C. It was more that I had hepatitis C, I was starting to decline. I definitely think there is a link there. It affects your mind, it affects you totally physically. It affects everything. And the doctors just don’t realise it, they don’t appreciate it. They knew I had hepatitis C and they knew I was clinically depressed but weren’t connecting the two at all, they were saying there was no relationship between them. (Ruby)

Both Charmaz (1997) and Register (1987) found that people they interviewed utilised living in the present or ‘one day at a time’ as a strategy for coping with an uncertain future. While this involved relinquishing control of future plans, often an enhanced sense of autonomy was gained in coping with the day-to-day (Charmaz 1997). Such autonomy enabled individuals to make a shift from “chronicles of loss” (chaos) to “tales of transcendence” (quest) (Charmaz 1997:260). The connection Charmaz makes between living ‘one-day at a time’ and “tales of transcendence” is interesting, in that the group of participants who iterate the quest (or transcendence) narrative most profoundly in my research are those who belong to Narcotics Anonymous (NA). NA espouses a strategy of ‘living one day at a time’ to help its members overcome active addiction. Participants from NA, being conversant with this strategy, were also likely to utilise it in relation to their hepatitis C. For others, who do not have a program that actively encourages living in the present, this approach can be hard to adopt. A neo-liberal work and success oriented society places a premium on thinking for the future: making plans, goals, and fulfilling aspirations. The frustration felt by someone who has embraced this way of life is evident in Suzy’s narrative:
Well how long does this thing (hepatitis C) last? Between 20 and 25 years [I was told]. This thing was maybe 15 years ago, now I have got maybe five maybe ten with luck, years to live. That is totally unfair. Because then I had to pay a private psychologist to help me deal with the fact that maybe at 50 years old I was going to die. So all my dreams, all my effort to get ourselves established and get ourselves the standard of life we were used to back in our country - there was going to be nothing of that for me. It sounds selfish, but I was shitted with life. (Suzy)
Day-to-day life
People living with chronic hepatitis C live in the ‘demilitarized zone’ between well and sick (Frank 1995). The largely invisible nature of the disease and its erratic symptom onset, mean that for many living with hepatitis C, day-to-day life involves strategic management. In this section I illustrate how looking after children, housework and employment are all subject to the vicissitudes of the disease. Living with bodily uncertainty leaves little room for making long term plans or in some cases even short term social commitments. In a society which prefers the optimism of restitution, little support or recognition is given to those whose day-to-day struggle with life may be more long term:
So those limitations, you know, because I am sick, because if I wasn’t sick I would be able to do whatever I wanted to do. I could choose myself. I can’t choose anymore, and that is what makes me hurt … in the papers the government gave someone $20,000 to go to New York, did you see that? And I think my goodness I just want someone to come and give me help with the vacuum. (Suzy)
Suzy, who speaks with pride of her previous hard working lifestyle, now finds it a struggle to do her housework. Although her abode appeared immaculate this was, for her, an obvious cause of concern. Due to highly symptomatic hepatitis C Suzy was no longer able to work; therefore keeping a clean house had become important in the maintenance of her self esteem.

Of the twenty participants in this study, eight were working full time, seven were on a benefit, three were students, and two women who previously worked were being supported by their husbands. Hepatitis C had impacted on approximately half the participants to the extent that they were not able to hold down a full time job:
It’s impossible really to do a 40 hour week and that’s my problem now. To work when I’m in good enough form to work. Otherwise I am just sort of horizontal. One thing I have learnt is there is a point where I don’t try and work because it will just make more mess and make more stress. (Todd)
Only one of the participants who did work felt able to disclose her hepatitis C status to her employers. This was due to the nature of the work environment (drug rehabilitation) where hepatitis C was commonplace. Other participants spoke of their desire to be able to inform their employers without negative repercussions. Toby had sought advice on this issue and was told by ‘the head union guy’ (who had consulted their legal medical advisor) not to tell otherwise he would be dismissed3:
I checked that out, because work was really hard for me, and I thought if I tell them, they might go easy on me. I got told, don’t disclose that or you’ll be gone … Well I would like to be able to say to them, to my bosses that because I have hepatitis C and I live with the consequences now, I would like to cut back on my hours of work. (Toby)

The erratic nature of hepatitis C symptoms means that a flexible self-managed approach to work would be preferable. Unfortunately this is seldom possible and resulting work instability and/or inadequate government benefits can result in poverty:
I think a thing that might come through for a lot of people living with hepatitis C and other things as well, or a combination of conditions, is a poverty trap. No-one knows quite what a poverty trap is until they have been in one. You are stuffed what ever way you go. (Todd)
Sarah was similarly caught in a trap. When I visited her she was in bed, too sick to leave the house and with no money, food or adequate clothing:
I don’t have enough nervous stamina to get through … The more I think, I think its your own fault, and then I think back and I have actually got no clothes, I am sitting here with my pyjama jacket on and trousers with holes in them, I’ve got two pairs of socks and an old pair of shoes, a pair of stockings that need replacing. (Sarah)
Interview experiences like this were heart-rending. The restitution narrative had failed Sarah, and she had neither the resources nor hope left to view her illness as a quest. What was left was a narrative of weary chaos, of life just being too hard.

Poverty and the uncertain nature of hepatitis C symptoms means that looking after children can be very difficult, as it was for the four participants who were, or had been, solo parents. Matthew cries when describing the impact hepatitis C had on his parenting ability:
… this is one of the huge areas like, you couldn’t even plan for the next day, or plan for the next moment. “Can you come to school to watch me at soccer, or cross country” (tears) and it is so hard because your whole being wants to be there but your body has shut down and your mind. Probably the most crippling thing is that it affects your mind too. (Matthew)
Lucy, as the sole carer for her son, feels that she has no alternative but to fight against her symptoms and carry on regardless. This is, to an extent, predicated on her being able to rest when her young son (also with an illness) goes to day care. Therefore, disruptions to her schedule cause extra stress:
I ignore it so much and I just fight it and fight it (the hepatitis C) because I’ve got to carry on and you know, cause I’m sweating on these next two weeks because Max can’t go to day-care and he is limited as to what he can do and I am not going to get any breaks so it’s going to take its toll on me as well. (Lucy)
Predominant in participants’ narratives were expressions of frustration at the lack of care and resources available to them when they really needed it. Recognition of the symptomatic nature of hepatitis C and a corresponding availability of respite care, child care and household help, would assist in alleviating the day-to-day difficulties of living with the virus.
Biographical disruption?
Personal illness narratives (Frank 1991, Broyard 1992, Toombs 1995) and theoretical writing on chronic illness (Bury 1982, Kleinman 1988, Garro 1992, Charmaz 1995, 1997, 2001, Frank 1995, Hyden 1997) generally posit life before diagnosis as stable, orderly and relatively in control; in other words a middle class / liberal subject experience. As such the symptoms and diagnosis of chronic illness create what Bury (1982) has termed a ‘biographical disruption’: a radical shock in the recipient’s life. As a result of this shock, identity is redefined to incorporate bodily and future uncertainty. Charmaz writes of the chronically ill, that “they have lost control of their body as an object they assumed they could master” (Charmaz 1995:662). This indeed is a rude awakening for individuals who can no longer rely on the predictability of the body, especially in a neo-liberal society which valorises self-control. However, for marginalised individuals whose lives are already disrupted by poverty and stigma, the arrival of chronic illness may not require such an extreme rewriting of identity. This is evident in Register’s depiction of her participant’s no-nonsense attitude to illness:
Lily herself sees this approach to illness as part of a broader outlook on life that she and her mother share as black women in a society dominated by white men. The asthma was just one more disadvantage to overcome, one more test of will and her strength to survive. (Register 1987:118)

Hepatitis C, although not necessarily symptomatic, has also been framed within the context of causing a biographical disruption to the identity of the newly diagnosed (Krug 1995, Glaken 2001). From my albeit limited study it appears that people who do not identify as having a drug addicted past (either having used drugs causally or having acquired the virus through other means) face the more significant identity disruption. For individuals who had a history of drug dependence, a diagnosis of hepatitis C seems to be a congruent, even expected part of their identities:
… it is so widespread in our community aye, the Auckland drug using community, oh yeah, part of the hep C club, aye. You just sort of accept it … use long enough, you’re gonna have it, and I think it would be a bit different if you were the odd one out, you are the odd one out if you don’t have it. (John)
For participants who identified a past of drug dependence, their most significant identity realignment occurred with the cessation of drug use, rather than the diagnosis of hepatitis C. This was most marked for the eight participants who were members of Narcotics Anonymous. All stated that their getting ‘clean’ had no correlation with contracting hepatitis C. The majority were diagnosed while using and continued to use, downplaying or ignoring the hepatitis C diagnosis. Recovery was eventually sought when a more severe ‘rock bottom’ had hit. Often it was only when the drug use had stopped that the gravity of hepatitis C became apparent and significant in their lives.
Intravenous drug use: a lived chaos
Active drug addiction is a time of chaos. The irony of the chaos narrative is that when it is truly being lived it cannot be articulated (Frank 1995). Chaos is beyond discursive boundaries, it can be read as a “speechless discourse amidst the noise of discourse around it” (Chalmers1989:152). For Chalmers this ‘speechless discourse’ is that of intravenous drug use, for “playing with the body with the needle is a means of breaking off speech” (1989:153). It is only when the needle is discarded and the chaos subsides, that this experience can be reflected upon and articulated. Participants who speak of past drug use trace with words around the edges of their wound (Frank 1995), signalling a lived desperation. While chaos is here articulated it is through the lens of the quest narrative, of having moved on and learnt from experience:
Back then when I was using if you had told me I could have got a disease it wouldn’t have mattered, I still would have done it, I had no self respect, and today I have learnt, how can I, I have become a better person because of it, a sick person, but better person. I’ve learnt so much about myself because of this. (Lucy)

Lucy’s statement that the threat of infection wouldn’t have put her off using was iterated by other participants. The majority of those who identified a history of injection reported sharing needles. Having a taste was the main priority, with little regard for the consequences:
… if I’m hanging out, even when I’m high aye, and I want to get higher, I don’t give a fuck, I don’t care aye. Like I was sharing this time and I found out someone had AIDS and I [had] shared with them. (Robert)
While significant risks had been taken none of the participants had acquired HIV; reflecting the low prevalence of HIV within the New Zealand drug using population4 (Kemp and MacDonald 1999, MoH 2002, AIDS Epidemiology Group 2004). Upon reflection, most participants who acquired hepatitis C through intravenous drug use expressed gratitude that they hadn’t contracted HIV/AIDS. Hepatitis C, while dubbed by a participant as ‘poor man’s AIDS’, was seen to be by far the better bet; an expected price paid for using:
I think that I was really irresponsible, and that yeah it was my fault that I got it, I wasn’t very careful, and I’m also kind of glad that that is all I got, I could have easily had AIDS, and I haven’t. As much as I resent my hep C sometimes, I feel grateful that that is all I have got. (Susan)

The narratives of Susan, Lucy and Robert illustrate the disjuncture that exists between taking hepatitis C seriously and attending to more pressing concerns. Issues that commonly arise for intravenous drug users include those of: poverty, stigma, inadequate health care, withdrawals, overdose, and the threat of child removal or imprisonment. Many of these problems link to the illegal status of their drug use, which is in itself a victimless crime (Schur and Bedau 1974)5. It is beginning to be recognised that, in order for drug users to prioritise hepatitis C, the primary issues caused by stigma and poverty will first need to be addressed (Madden 2004, Van Beek 2004, Henderson 2004, Nguyen 2004). One way that this can happen is for the use of drugs to become a health not a criminal and moral issue. By removing an element of the stigma and criminality from drug using, addicts will be better placed to access primary health care and less likely to engage in secondary criminal activities to fund their habits. For those who want to stop using help will be easier to access. Non- judgemental help and support is important for, as Richard says, giving up drugs is no walk in the park:
I mean you can leave the addiction behind. It is a real drag to leave that behind, and then you are left with this fucking consequence. It is really hard for me and for people, because it’s not worth it, at the end of the day when you get clean you realise that that drug use was not worth getting hepatitis C for. It seems a bit unfair that you do all this massive work to clean up which is a major effort, and no-one who is not an addict will ever realise, cause they won’t understand what it is like, and then to have that to deal with seems really unfair. (Richard)
For Richard, and others who have substantially changed their lives, having hepatitis C is an insidious reminder of the past; it elicits a stigma preferably forgotten.
Stigma, acceptance and disruption
For the participants who didn’t identify a history of drug use the diagnosis of hepatitis C created a stronger identity disruption. This has both to do with their previous experience of control and social acceptance, as well as the conflation of hepatitis C with intravenous drug use. While hepatitis C is invisible, and for some people asymptomatic, its association with a deviant lifestyle can do more damage than its symptoms (Ward et al 2000, Loveday et al 2003). Miranda, a blood transfusion recipient, and Rachel, who received a needle stick while nursing, are careful to distance themselves from associations of intravenous drug use:
… to begin with I didn’t say what the illness was, and then I started to make sure that when I told people that to say that I had got it from a blood transfusion. And there is very much a prejudice out there about it being a druggies’ disease. (Miranda)
People I do tell, the first thing I say is “I’m not an IV drug user” as if I’ve got to qualify that, and I look at them and I think I know they don’t believe me, she doesn’t believe me ... (Rachel)
Miranda and Rachel are well aware that disease seen to result from ‘controllable’ causes, such as drug use and sexual behaviour, elicits stronger disapproval than does infection from ‘uncontrollable’ medical misadventures (Wiener 1995, Ward et al 2000, Orsini 2002). While both women show an open attitude towards drug use, their attempt to distance themselves from this activity reflects a felt distinction between so called ‘guilty’ and ‘innocent’ victims of hepatitis C (ADB of NSW 2002).

Kleinman, in addressing the creation of meaning in illness, believes the fundamental questions are those of bafflement (why me?) and that of order and control (what can be done?) (1988:29). Participants who contracted hepatitis C through means other than intravenous drug use, do ask ‘why me?’ This is often with a degree of anger and frustration, especially for those who received contaminated blood products (Orsini 2002, Hanssens 1995). One exception to this, however, is Alex who contracted hepatitis C during a heart transplant in 1992. Alex is remarkably accepting of his condition. Although he had legal grounds to seek compensation6, his family couldn’t financially afford to get involved, preferring instead to focus energy on spending their time together. Alex’s acceptance of hepatitis C is put into perspective when he speaks of his life saving heart transplant:
I was quite philosophical about it, I just accept these things. After being so close I am just lucky to be here anyways. (Alex)
His wife adds:
I mean really do we feel that strongly [about the court case]? Maybe not because if Alex hadn’t had got that transplant then he wouldn’t be with us. I guess we think, we wish that it [hepatitis C] had never happened, but it did, and we are very much, and I guess me in particular, feel that we have got to keep going, keep going forward, try not to think of the past. The past was very difficult and very hard for us, awful, awful times, and I guess we have moved forward … (Alex’s wife)
This sense of acceptance, predicated on a prior lived chaos, echoes that of the ex-intravenous drug users I interviewed. The experience of having lived through severe life threatening events mitigated the impact of hepatitis C. Narratives of chaos were supplanted by those of quest. For these people diagnosis was part of a ‘biographical flow’ (Faircloth et al 2004), rather than the disruption it constituted for those with previously stable lives.
Conclusion
While the concept of biographical disruption is influential in theoretical writing on chronic illness (Faircloth et al 2004) those with conditions such as hepatitis C cannot be treated as a homogenous group. For participants who had previously lived with disruption in the form of drug addiction, poverty, stigma, or other illness, the diagnosis of hepatitis C represents not so much a biographical disruption as continuity in already chaotic lives. Individuals who identified a past of drug addiction reported the cessation of drug use as the more profound identity reconstruction. Hepatitis C diagnosis became incorporated into the flow of an already chaotic life. The overcoming of major obstacles allows a narrative of quest to supplant that of chaos, changing the meaning of illness for the recipient. Participants expressed agency in the strategies they employed to mitigate the daily effects of hepatitis C. For those who were symptomatic this elicited an awareness and reading of the dysfunctional ‘dys-appearing’ body. Lived contingencies are brought into stark relief by an illness such as hepatitis C. Difficulties with employment, childcare and housework all impact on self-esteem and are exacerbated by conditions of poverty and social isolation. In addressing these issues an increased recognition of the symptomatic nature of hepatitis C is essential, along with the provision of subsided help for those who need it.