Chapter Four: Relationships
Chronicity is not simply a direct result of pathology acting in an isolated person. It is the outcome of lives lived under constraining circumstances with particular relationships to other people ... we must be able to see the patient suspended as it were in a web of relationships that constitute a life world. (Kleinman 1988:180-1)

A central concern for my research participants was the impact that living with hepatitis C had on their ‘web of relationships’. This chapter focuses on these relationships and the stresses placed on them by an often misunderstood and stigmatised illness. The interaction of social relationships and the experience of illness is a poorly developed site in the study of hepatitis C. Yet hepatitis C, a chronic and stigmatised disease, has a profound effect on how infected people interact and sustain relationships with others. Moreover, the quality of these relationships has a determining impact on an ill persons self concept and ability to deal with suffering. Predominant issues for participants regarding their relationships involved: dilemmas over disclosure, fears of rejection, desire for support, and worries about sexual transmission. Evident were expressions of estrangement; relating to the feeling that others did not understand, or want to hear about the effects of hepatitis C.

Participants were asked how hepatitis C had impacted on their general and intimate relationships and the level of support available from the people in their lives. Of the participants in this study eleven were in long term heterosexual partnerships1 and nine were single. The long term relationships consisted of six marriages and five de-facto relationships, four partners also had hepatitis C. The majority of these respondents felt that hepatitis C placed a considerable strain on their relationships. The nine single participants were wary of initiating encounters, due to a fear of prejudice and rejection. One man had completely given up on the idea of ever having a lover, feeling that he would never be accepted with his hepatitis C. These reactions generally reflect past experiences of intolerance and discrimination from significant others. Relationships in general, with friends, family and acquaintances, were also subject to stress and discomfort. This may be contributed to by a neo-liberal preference for narratives of recovery and coping. Inability to conform to societal expectations often led individuals with hepatitis C to minimise or hide the reality of their disease.

Talking about and listening to narratives of chronic illness does not rest easily with many people. Western society’s emphasis on the liberal tenets of individualism, employment and autonomy, leaves little room for the voice of ongoing illness. More functional and comfortable for such a system is to think of sickness as a temporary, curable inconvenience. People get ill, but due to the wonders of medical intervention, they get better and are then able to rejoin the workforce as productive citizens. This schema is that of the ‘restitution narrative’ (Frank 1995); its focus lies with the cure of disease rather than the support of illness. Congruent with the ideals of liberalism is this narratives placement of individuals as isolated or ‘monadic’ (Frank 1995). Isolated, ‘autonomous’ individuals are manageable: they function within a fragmented medical system, get well, and then return to the pursuit of success and consumer gratification.

The reality of hepatitis C, and many other illnesses, is more complicated and chaotic than this capitalist vision. For, as social beings, we are primarily ‘dyadic’; we exist in and for relation with others:
To exist as a human is to communicate with others. Who we can be, any self we can claim, is formed in others vision of us. (Frank 2004:20)
When treated as a ‘monadic body’ the social fabric of an ill person’s life world is placed second, insignificant next to that of individualised medical intervention. For individuals living with a chronic illness, such as hepatitis C, interpersonal relations are of primary importance. These relations, however, are often fraught and strained; not only by the stigmatised and uncertain nature of the disease, but also by a medical system which has little time for an ill person’s social networks.

 

Disclosure: control, strategy and rejection.
A primary issue for ill people in relationship with others is that of disclosure. Disclosing an illness, particularly a stigmatised one such as hepatitis C, involves dilemma as it carries with it the risk of rejection. Due to the invisible nature of the disease a person with hepatitis C is, in Goffman’s terms, discreditable but not yet discredited. The difference between the two states rests on information management:
To display or not display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when and where. (Goffman 1963:57)
Disclosure is intimately tied to control (Holt et al 1998, Charmaz 1997) and for a person living with bodily contingency, information control can become all the more important. Our individualistic, work and success-orientated society expects a remarkable degree of bodily control from its members and loss of this control can be stigmatising (Frank 1995, Goffman 1963). Thus, in order to retain acceptance, individuals who experience chronic illness and bodily contingency will often limit the disclosure of their illness to a favoured few.

Of the participants in this study, two were reticent about their illness and two were candid; the remaining sixteen participants adopted a strategic mode of disclosure. This echoes patterns of disclosure found in other hepatitis C research (Hopwood and Treloar 2003, Dunne and Quayle 2002). Above all strategic disclosure seems the most favourable option, as it preserves a balance between being able to ask for support and remaining in control of information output:
Through strategic announcing, ill people extend their control over their information, themselves and another’s response. They organise what they will tell, to whom they will tell it, and when they will do it. Strategic announcing can protect self, control interaction, and preserve power. (Charmaz 1997:121)
Strategic disclosure involves an element of ‘sussing out’ the other person, in respect to their likely reaction. This helps to protect the person with hepatitis C from bearing the brunt of negative judgement:
When it comes around to it, the topic of discussion may come up and I don’t come straight out and say that I’ve got it, but go around about it, and find out their views about it first, and if they’re sort of biased and naive and judgemental about it, I don’t go any further, then I’ll just go around the topic as if I haven’t got it. (Greg)

The strategic nature of disclosing to those with an accepting attitude maintains an element of control for the ill person. Wariness around disclosure often results from previous bad experiences; over half of the participants reported a negative reaction from others when they informed them of their hepatitis C status2. Most participants reported these experiences stoically, unwilling to acknowledge or re-experience the vulnerability that a negative reaction brings. When asked about negative reactions Lucy replied:
Oh yeah, people watching what cup I’ve used at work and little things like that … Oh it hurts but then I just will blow it over and think thank god I am not like that, and how narrow minded, how ignorant people can be. (Lucy)
Lucy’s experience reflects the dissonance that can occur when those with hepatitis C are far more knowledgeable about the disease than the general population (Hanssens 2004). Public beliefs that cups or utensils are vectors for transmission are unfortunately common and reflect the low level of public information available about the virus.

For those who tend not to disclose their illness, life involves limited support options and continual mindfulness about what is divulged. Elisabeth, who tells very few people about her hepatitis C, speaks of the strain that this secrecy involves:
So it is secret squirrel sort of stuff … It reminds me of the drug using years, you know, it is just the same. It casts you right back in there, and it’s almost, yeah it is like living with a secret. And there is nothing to be secret about, except there is going to be curiosity, there is going to be questions that I don’t particularly want to answer. Because I might have a professional relationship with these people, they might be a client of mine and a friend, and then like hello, are they going to want to deal with me if they know I have a history like this. (Elisabeth)
The history that Elisabeth is referring to is that of intravenous drug use. Although this was for a brief period and many years in the past, its stigma is still alive for Elisabeth in the form of hepatitis C. The juxtaposition in the public consciousness of hepatitis C and drug use can render those with the disease vulnerable to public supposition about their moral integrity. Elisabeth is well aware of this and keeps quiet. She believes that any knowledge of her illness would have an irrevocable impact upon her professional relationships.

While Hopwood and Treloar (2003) report findings that women with hepatitis C are more likely to disclose than men, my small study does not reflect that gender orientation. Elisabeth and Rose were the most reticent in disclosure, while at the other end of the spectrum Matthew was open to everyone. Matthew’s painful experiences of rejection highlight the advantages of strategic disclosure:
It has been extremely difficult, one thing we were talking about earlier, a lot of people are extremely isolated, and like I would come out of my isolation … to church on Sunday; it would sort of be my big deal for the week. And um I would be excited to meet different men and that. You know you miss company of a lady but it is awesome having company of men too, and I would introduce myself … and I would really be having a good conversation with them and that and then would turn around to say hello to another mate and they would disappear. And it freaked me out, because I would sort of look at myself you know what is going on here, am I too open, am I telling them stuff at the wrong time, or can’t they handle it or what’s going on, you know.
So had you told them that you had hepatitis C before they disappeared?
I was just open about my situation, of having hepatitis C, being a solo dad, being on the benefit, and just being isolated, and hey I’d like to be your friend sort of thing (tears).
That is tough isn’t it?
And that is years ago and that …
Do you still find that level of isolation?
Yeah (emotion) excuse me … (Matthew)
Matthew’s desire to be accepted with his litany of stigmatised positions: solo father, beneficiary, chronic illness, isolation and loneliness, is distressing in its naiveté. In a neo-liberal success-oriented society to be open in this way is to risk denigration. To gain esteem and human connection one often needs to be guarded and strategic: adept in the ruse of conformity.

This ruse of conformity is necessary as the stigma of hepatitis C and its conflation with intravenous drug use can lead to painful rejection. Participants in this study expressed many anxieties regarding disclosure and rejection. These were primarily around fear of judgement, being perceived as a ‘junkie’ and being seen as contagious, particularly in sexual relationships. This last issue was mentioned by many of the participants as one of the hardest things about living with hepatitis C:
The hardest people to tell are my sexual partners, and I have done, and it’s a bit uncomfortable because you never know how they are going to take it. (John)
While John felt discomfort in disclosing his hepatitis C to sexual partners he did not let this put him off pursuing relationships. He rationalised that disclosure may not be necessary for causal encounters as condoms would be used. However for Todd his hepatitis C had left him despairing of ever being able to sustain an intimate relationship. When asked what he felt was the hardest about living with hepatitis C, Todd replied:
I am just scared of a relationship; that is just too much for me to handle … effectively for me to have a relationship it would have to be with someone who has got hepatitis C or a similar situation, disease or disablement or something. Because women just wouldn’t accept it … You would never get past that basic slight. For a woman to be involved with someone and potentially pick up the disease. I mean for you to go into that conversation with somebody “oh it doesn’t get transmitted sexually, or it is not normally transmitted sexually” … By the time you get into that first sentence it is like “oh see you later” ... What do you tell a woman when you have got hepatitis C? It’s kind of like they are just not very interested after that, and I don’t blame them, I mean that is the real world. (Todd)

Intimate relationships: sex, laziness and silence.
In a society where intimate relations are ratified by the “mutual confession of invisible failings” (Goffman 1963:94), disclosure of hepatitis C becomes inevitable at some point in a long term relationship. How this disclosure is received generates considerable anxiety, especially around the issue of sexual transmission. Hepatitis C is not considered a sexually transmitted disease as there is only a minimal risk of transmission associated with sex involving blood3 (Marinocovich et al 2003, Treloar and Hopwood 2003, MacDonald et al 2001, Dolan 1999). Standard health care advice is that monogamous partners need not use barrier protection, but should avoid sharing items that come into contact with blood such as toothbrushes or razors (NZ Hepatitis C Resource Centre 2002a). As public information and awareness about hepatitis C is negligible, misinformation and fears regarding sexual transmission can abound. This is a significant issue for people with hepatitis C entering new relationships. Working out when and how to tell a new partner, coupled with fears of rejection, is a site of unease for many and can also be an ongoing issue in long term relationships:
Did any of your wives express worries about catching it from you?
Oh for sure (laughs). That’s why I have gone out of my way to try and educate them, but its like I will have it down on paper from the Hepatitis C [Resource Centre], but because of unresolved conflicts and issues that I’ve had with my wives, like even if it is in black and white, signed, sealed, delivered, because of the baggage that I’ve mistreated them, like they still won’t believe me, and that is like the pits you know. (Matthew)

Matthew’s comment above betrays the feeling that his hepatitis C was being used against him for other misdemeanours in his marriages. Hepatitis C can be a potent and painful weapon when used against someone with the disease. Participants used descriptors such as ‘shame’, ‘leper’ ‘low self-worth’ and ‘unattractive’ to express feelings about their disease in relation to intimate others. Hepatitis C is therefore an obvious site of vulnerability, easy for a vindictive partner to use in attack:
I remember you saying that he was using hepatitis C against you in court.
Oh yeah, he’s brought it up that I’ve got hepatitis C, I’ve brought it up too, in my affidavit that I have got hepatitis C, but he has put in that “she got hepatitis C though a dirty needle” and all that, um “when I met her she was a prostitute”, and all this sort of shit, “she was on drugs” and … when I got hepatitis C, he couldn’t cope with it either. He would never talk about it, all he wanted was his little party animal back, cause I was a boring bitch, I wanted to go home early and I was tired, I was sick, you know, and he couldn’t cope with that, because she’s the strong one, she’s the you know, so I had to again, do it on my own. (Lucy)
As well as her ex-partner using hepatitis C against her in court, Lucy reports his lack of support and general intolerance towards the life-style changes she had to make. This is a common complaint; due in part to the invisible nature of hepatitis C, the unpredictability of its symptoms, and a societal reliance on the mechanisms of stoic ‘coping’.

Families of the ill are additionally marginalised, as they are expected to carry on as ‘normal’ with little recognition of how disruptive a relative’s illness can be. The lack of information about hepatitis C can also lead to misunderstanding and tension within relationships, perpetuated by a medical disregard for the partners of ill people:
In one of the arguments we had, he said maybe your illness is all just pretend, maybe this is not really happening. Because also, he was never invited by the doctor to explain the situation. You know they should get the children, the husband, the whole family, all the support around me, they should be informed. Who did they inform but me? I said to (husband) I said, you know me, you know how hard working I was. He said I know but you have become totally lazy. Oh so, it is hard, especially when he really means I am being lazy. He can’t understand the tiredness. Because that tiredness, unless you have the illness is so difficult to explain. (Suzy)
For Suzy, having a doctor explain her illness to her husband and family would have lent credibility to her symptoms and thus removed a site of tension within her relationship. Evident in Suzy’s narrative is the esteem that she and her husband held for her ability to ‘work hard’, a socially recognised and valued practice. With no equally valid narrative available for the experience of chronic illness both Suzy’s self esteem and her relationship with her husband suffered.

A lack of social validity came through in many of the participants stories. A felt social pressure to keep quiet about their illness, coupled with the inability of others to ‘hear’ or understand, resulted in feelings of low self worth and estrangement:
I have been thinking of leaving [the relationship], there is all this leaving stuff, it is partly about this thing that you feel like such a bloody leper, it is part of your consciousness that you feel that you have actually just got to go into a hole on your own and it is so scary. (Elisabeth)
Elisabeth received minimal support from her husband regarding her illness. While she often felt she wanted to talk about her hepatitis C to him, he “is not a talker”, believing that if he doesn’t talk about it, the illness would not impinge upon their lives. The inability to talk about illness is due in part to the lack of readily available narratives to talk about it with. When the restitution narrative is not congruent with experience where does one turn? For those not conversant in the quest narrative, all that is left is chaos. For the partners and families who fear giving the chaos of chronic illness voice, silence predominates.

Matthew, who refuses to be silent, lives a chaotic narrative and has seen all of his relationships fall apart as a result:
Because it has just destroyed, like Mary, she is my third wife and it [hepatitis C] has destroyed all my relationships … Not just my relationships with my wives and girlfriends, but with all my children, and just everything has been stolen off me you know … because basically over the last 21 years, probably 12 years, 14 years I have been in bed, you know. So um it is very hard to have a relationship with a man who is like two different men. Like one day like today, I am normal what ever normal is, and tomorrow, I could be wiped out for like 24 hours and struggle to just go to the toilet. (Matthew)
For Matthew living with hepatitis C is chaos. He has no idea when or how his symptoms will affect him, and having been a beneficiary for 21 years he has no recourse to the dominant narratives of self worth. In order for the experiences of those like Matthew to be validated, narratives need to be available that value the experience of illness, and recognise that chaos is an integral part of everyday life (Frank 1995). This would aid recognition and support for people with chronic illness and those close to them. In allowing an articulation of chaos, silence can make way for acknowledgement and in this, the stress of chronic illness on intimate relationships may be eased.
General relationships: people “don’t really want to know”
When we know that someone recognises our pain we can let go of it. (Frank 1991:104)

Chronic illness means living with a perpetual interruption, with no tidy resolution in sight (Frank 1995). This trajectory is uncomfortable for a society primed to the restitution narrative, where faith in the medical profession and an uncomplaining attitude is paramount. The chaotic reality of suffering and uncertainty of outcome are threatening to those who take their bodily predictability for granted, and in a situation where no cure is immanent they are at best, unable to articulate a response. Participants in this study who were unable or unwilling to provide a neat and tidy narrative of ‘getting better’ or ‘coping’, report the inability of friends and family to ‘hear’ what they were saying. This discomfort at the chaotic narrative of suffering often results in the ill person either amending their story to one more palatable or, in refusing to deny the reality of their illness experience, moving away from those who are unable to hear it. Both options result in a loss: either the integrity of the chaos narrative is retained at the expense of sustained relationships, or support is gained at the cost of ‘dumbing down’ the self. Miranda in her refusal to succumb to meaningless platitudes acknowledges that sticking with the reality of her illness has an alienating effect:
It’s the social stuff that I have found the hardest. And the thing is, that people don’t actually want to know about chronic illness, and they don’t know how to respond, and people on treatment, they want you to be well. “So you are on the treatment, are you better?” “Are you better now, feeling good?” If you want me to tell you that I am feeling better just so you feel good I will tell you I am feeling fantastic. Feel alright now? So that is not my reality – fuck off! (Miranda)

Just as Miranda is unwilling to minimise the obvious and debilitating effects of interferon treatment for the comfort of others, Suzy and Todd are annoyed that their illness is dismissed by friends and family due to the fact that they ‘look well’:
I have a quite a few friends who say “oh well you are looking pretty good”. Thank you, I don’t feel like talking to them any more. Because if that is the way they perceive me then I am not going to go into the fuss of telling them otherwise. (Suzy)
Every time I see my eldest brother, he is very conservative; every time I see him he says “why don’t you get a job”. I have told him a hundred times, but he just does not have a clue about being debilitated in any way. (Todd)
These occurrences are indicative of those of other participants in the study, for whom either the invisible nature of hepatitis C or the chaotic reality of interferon treatment led to a frequent denial of their illness experience. Miranda believes that this lack of acknowledgement reflects people’s fear of their own mortality and an inability to interact with others who are “different in their behaviour, different in their wellness”. She goes on to say:
That means the person with the disability has to carry everything, well that is what it feels like, and is like they put it all on to you and if you try to explain and come back with some of the information … some of them don’t want to know. I have had work colleagues say “pull yourself together, you are whinging”, you know, or that they just stop contacting you. Or if you start saying some of the details, ‘cos you think lets give this person some of the hard data, and you see their eyes will glaze over, they don’t really want to know, or that they will … say “oh its good that it is working isn’t it”. (Miranda)

This feeling that people “don’t really want to know” about illness, can place restrictions on an ill person trying to access personal support. At the best of times the liberal credos of individualism does not provide training in asking for help, let alone for individuals marginalised by illness. The feeling of ‘being a burden’ coupled with a social pressure to ‘cope’ and put on ‘a brave face’ leads many with hepatitis C to minimise or hide their illness. The unpredictable nature of hepatitis C symptoms, such as bouts of fatigue and nausea makes it additionally difficult for people with the illness to sustain social commitments:
My friends … they will go “what are you doing” and I will go “I’m not doing any thing I am shattered” … well I don’t think they understand particularly, they just think I am useless you know, to some degree. (Todd)
The lack of public knowledge about hepatitis C and the often invisible nature of its symptoms fires notions of hypochondria and malingering. But for people with the disease these symptoms are very real, at times debilitating. A dearth of support and understanding coupled with low energy can lead to an increasingly introverted lifestyle. This can be seen in Toby’s response to my question of whether hepatitis C affected his relationships with other people:
Yes definitely, in the sense of um, in just talking about my own inner stuff and that, it’s after a stressful day living with hepatitis C having the inclination, and energy and aptitude to spend time with people. It has tended to make me more introverted and more isolated, as I haven’t got the energy to carry on with the rest of the day after a hard day’s work. (Toby)
Conclusion
In a society where the primacy of the restitution narrative disowns the illness experience an ill persons ‘web of relationships’ becomes of primary importance. Most of the participants in this study reported that they struggled to be physically and emotionally available for their friends and partners. This is often a result of fatigue and ‘emotional labiality’ (Dolan 1999) symptomatic of the virus. As these symptoms cannot be easily measured or distanced from ‘normal’ experience, this can place a greater burden on the ill person, as they have no objective ‘proof’ to show that they are indeed sick and unable to fulfil societal expectations. A lack of interest by the medical profession in ill people’s social networks (Kleinman 1988, Frank 1991, 1995, 2004) exacerbates misunderstanding and tension in the ill persons ‘web of relationships’. Feelings of self worth and ability to cope with the demands of living with hepatitis C are often predicated by the quality of the ill person’s social relationships. In a society where ones worth is intimately tied to ones ability to work, those who are chronically ill sit on the periphery, further marginalised by a lack of available narratives to validate their experience.