Living with hepatitis C: the meaning of illness

Chapter Five: Isolation and Support

 

Support operates on the levels of both the individual and society. Social isolation and exclusion are associated with increased rates of premature death and poorer chances of survival after a heart attack. People who get less emotional social support from others are more likely to experience less wellbeing, more depression, a greater risk of pregnancy complications and higher levels of disability from chronic diseases. (Wilkinson and Marmot, for the World Health Organisation 2000:21).

 

The detrimental effect of poor social supports on physical and mental health (Wilkinson and Marmot 2000, Kleinman 1988) is a critical factor for people living with hepatitis C. One major finding of this research is that the stigma and silence surrounding hepatitis C contributes to a high level of social exclusion and isolation for people living with the disease. This chapter will address participants’ experiences of isolation and support, with reference to the use of support groups and other avenues for gaining assistance and information about the disease. Interviews revealed a considerable range in people’s experience of group support. The ideal of a supportive group was undercut by a variety of factors including elements of stigma and social division associated with methods of hepatitis C transmission. It was also clear from interviews that social support shapes the way respondents narrativise the disease, with those involved in active support networks (notably here, NA) much more likely to adopt a ‘quest narrative’ approach; while others, struggling to cope with the disease alone, frequently expressed themselves in more chaotic terms.

Quest and Chaos: organised support versus going it alone.

While all of the participants articulated concern about the lack of support available for people with hepatitis C, those that expressed less desperation about this issue were the eight participants drawn from the Twelve Step fellowship Narcotics Anonymous (NA). Members of the NA fellowship interviewed quite differently from the other participants, eleven who were drawn from the Auckland Hepatitis C Resource Centre and one who has no association with either group. The participants from NA were more restrained in their response, generally speaking directly to questions in a concise manner. It appeared that these respondents had through their association with NA developed a quest narrative (Frank 1995) in which illness is accepted and seen as a journey, often one of self-discovery. This excerpt from the NA Basic Text articulates a quest narrative: addiction is premised as an ongoing disease; however, with the help of the fellowship, addicts can achieve a life ‘beyond their wildest dreams’:

We realize that we are never cured, and that we carry the disease within us for the rest of our lives. We have a disease, but we do recover. Each day we are given another chance … The program works a miracle in our lives. We become different people. (NA 1988:8, 11)

Susan feels that belonging to NA has improved her illness experience. She through ‘working the steps’ has been able to release anger and resentment; thus alleviating sickness-inducing stress:

What else has helped me is, um this is going to sound silly, just getting rid of my resentments, cause that is kind of from your liver, shitty liver you know, so doing that Step Four was really healthy for getting rid of all that crap and anger. (Susan)

 

The narrative of participants not associated with NA was generally more chaotic. One question frequently unleashed a torrent of words: participants would speak for ten or so minutes at a time, covering various aspects of their lives, often with no direct relation to the question asked:

So you haven’t gone for medical insurance?

No ‘cos that’s why I wanted to see Matthew’s father, we still haven’t had this talk, ‘cos he got stabbed in the neck, okay, and he nearly died, so he had a blood transfusion, and I was trying to work it out whether he contacted it through that, because I know a lady, she has got it bad and she got paid out a lot of money, but she is actually dying, hasn’t got long to live, and she’s got a child. She’s a nurse and she’s in the hospital more than she is out, and she’s got a car, she’s got a car and everything, ‘cos she got mixed up blood at the hospital. But I don’t know, I didn’t know Matthew’s father was a drug user for a year I was with him I didn’t even know. ‘Cos I wasn’t into that. (Marianne)

This flood of words I saw as a direct result of Marianne’s isolation; for she, and others like her, had no outlet to express their anxieties and share experiences. While this function was fulfilled for the nine participants that attended NA, those who had no such support network expressed feelings of isolation and desperation:

So it is hard not having an outlet?

Very hard, yeah, and I hadn’t realised until I talked to you today but it is extremely difficult. It is a pot boiling with the lid, just boiling under the surface all the time. I mean cancer sufferers have got cancer support networks, they have got all sorts of people that come to your house and talk to you, and steer you and counsel you and guide you and whatever through every step of the way. And there is nothing here. You are on the cliff, you are diagnosed, and you are down. You are just right on the precipice. (Elisabeth)

‘I support myself’

Participants not associated with Narcotics Anonymous often spoke of ‘supporting themselves’: an expression of Frank’s monadic body which understands itself as essentially separate and alone (Frank 1995:36). The embodiment of the monadic body is encouraged by the liberal credos of the self-sufficient, self-actualising individual. While Elisabeth’s distress at the lack of support is evident in the passage above, “You are just right on the precipice”, she also adopts the preferred liberal attitude to suffering: that of ‘coping’ and self-sufficiency. This persona, while not completely truthful, is seen as more acceptable and congruent with her status as a highly achieving professional:

I think there is no support at all; you are a total lone wolf. And if I wasn’t a lone wolf personality, I would probably find it terrible to cope with, but it doesn’t bother me that much I guess because I am used to coping, I am pretty self sufficient, so I get by. (Elisabeth)

For Sarah, isolated and intensely ill with the effects of the hepatitis C, the veneer of self-sufficiency wore thin a long time ago. Her narrative is one of chaos rather than coping, and a desire for community and support is painfully evident:

And I just don’t feel like I want to do that on my own (cries). I have spent a decade doing stuff on my own. I feel like having hepatitis C is a burden, damn I just can’t find any gratitude at all. (Sarah)

 

 

Participants’ desire for community is echoed in the catch-phrases of New Zealand’s third way inflected Labour government. However, the government’s calls for ‘community’ and ‘partnership’ seem to be but flimsy rhetoric in a society that still very much operates on an individualistic profit driven basis. Indicative of this self-sufficient ethos is a medical system which, criticised by participants for concentrating on the point of ‘disease’ (i.e. the liver) at the expense of the whole person, likewise concentrates on individual bodies rather than a community of social networks:

When we were on the polymerase inhibitor trial, here is this group of about 14 people out there. There was no introduction, there was no group process there was no nothing. No do you want to exchange phone numbers and that being facilitated in some kind of way, no ... the frustrating thing is this clinical approach that you don’t need to be a rocket scientist to work this out. What is the matter with our society that we don’t embrace this aspect of human experience? (Miranda)

What indeed is the matter with our society? Miranda’s plea for facilitated peer support is reasonable and achievable; however, the fragmentation and user pays emphasis of medical and other services means that facilitation of peer support, especially for an under-recognised disease such as hepatitis C, is simply not a priority. If people want peer support it seems that they must develop it themselves.

Support Groups

The monadic body of medicine articulates well with modern society's emphasis on individual achievement in education or in the marketplace. The dyadic body thus represents an ethical choice to place oneself in a different relationship to others. This choice is to be a body for other bodies. Living for others means placing one’s self and body within the community of pain. (Frank 1995:37)

 

Franks ‘community of pain’ is akin to de Certeau’s ‘potlatch’ or ‘gift economy’ which he views as marginalised and denigrated in a profit driven Western economy. Support groups operate very much on a gift economy and thus are political; they are a ‘diversionary tactic’ against the ethic of the individual in the Western market place:

The loss that was voluntary in a gift economy is transformed into a transgression in a profit economy: it appears as an excess (a waste), a challenge (a rejection of profit), or a crime (an attack on property). (de Certeau 1988:27)

Peer based support groups are particularly important for conditions such as hepatitis C, as the stigma associated with this disease means that many of those affected choose to keep their condition secret. The benefits of belonging to a ‘community of pain’, or a ‘circle of lament’ (Goffman 1963), are that experiences can be shared in a relatively safe setting; thus providing an antidote to isolation and uncertainty:

The first set of sympathetic others is of course those who share his stigma. Knowing from their own experience what it is like to have this particular stigma, some of them can provide the individual with instruction in tricks of the trade and with a circle of lament to which he can withdraw for moral support and for the comfort of feeling at home, at ease, accepted as a person who is really like any other normal person. (Goffman 1963:32)

 

Narcotics Anonymous

The operation of Narcotics Anonymous is indicative of a gift economy, as evident in its Seventh Tradition: “Every NA group ought to be fully self supporting, declining outside contributions” (NA 1988:57). Rent for rooms and the purchase of literature is funded through donations that members give at the close of each meeting. The philosophy of NA, that: “we can only have what we’ve got by giving it away”, operates through members sharing their ‘experience, strength and hope’ in staying ‘clean’ from drugs and alcohol and living a life free from ‘active addiction’ (NA 1988). The philosophy of NA is centred on the dyadic body: it operates on the basis of members sharing their ‘story’ so that others can relate, gain strength and hope, and realise that they do not have to ‘do it alone’:

Story telling is one medium through which the dyadic body both offers its own pain and receives the reassurance that others recognise what afflicts it. (Frank 1995:36)

The focus on the power of the group and importance of asking for help or ‘reaching out’ in Narcotics Anonymous is contrary to the liberal ethic of the self-sufficient individual. Indeed the promise of NA: ‘freedom from active addiction’ is an anathema in a society permeated with messages to consume, in which the addictive transformation of ‘wants’ into ‘needs’ becomes paramount.

 

Narcotics Anonymous operates on the ‘disease concept’: that addiction is a disease, and therefore, not a moral or criminal issue. The participants who belong to NA are cognisant of a quest narrative in relation to growing and learning from their addiction; thus it is easier for them to adopt this outlook in reference to their hepatitis C. While NA has no basis in providing support for hepatitis C, the makeup of membership means that many past intravenous drug users have the virus. For these people, NA provides an auxiliary function in providing a means to meet others with hepatitis C:

I try not to tell people aye. I don’t think it’s a good thing to tell people. But in NA it is alright, or a fellow person who has got it, because it is like, oh well you have got it too. It is not uncommon for people to have it in NA. (Robert)

Well I get a lot from NA, because most people have got it there, I get most of my information from there, because people are doing different treatments and that. (John)

As well as providing a forum for meeting people with similar problems, NA advocates a spiritual basis for its program. Members are encouraged to believe in a ‘Higher Power’ and to ‘hand their will and their lives’ over to this benevolent deity on a daily basis. Therefore, support not only comes from the other members in the fellowship but also from a sense of constant spiritual companionship and guidance.

 

Charmaz (1995) and Register (1987) both refer to the positive effect spirituality1 has in helping their participants to cope with chronic illness. Recent research on this topic has also found a “significant positive correlation … between spirituality and the ability to cope” (Rowe and Allen 2004:62). As human beings we all sit on the liminal boundary between finitude and transcendence (Barnard 1995, Charmaz 1995); however, for those who are chronically ill this boundary is more a stark reality than existential paradox. Belief in something higher than oneself may help to provide a sense of hope and meaning in a life marred by ongoing illness. Matthew, who is not a member of NA, regularly referred to his faith in Jesus during the process of our interview:

… you know I want to put a testimony in here, because I have faith in Jesus, he has got me through the last five or so, 16 years ago, he has got me through, not the whole period, but without him I would be dead by now or back in the drug scene, in a boarding house, sort of lonely man, 49 [years old] you know. (Matthew)

 

While Matthews’s faith has helped him in his struggle with hepatitis C he still experiences a great deal of isolation, and characteristic of the non-NA members, he is very eager to have someone to talk to:

It is really awesome this, because these questions that are coming out ... You know because I am carrying pain, and I knew I was carrying pain, I would have to be a fool to deny it, but I didn’t realise how deep and how severe it is. ‘Cos these are huge things you know, and we have just started [the interview]. (Matthew)

The need to talk and the uncovering of dormant painful issues in the interview process was particular to participants who did not have a regular vocal outlet for their feelings. Thus, while spirituality has a part to play in the coping process, a human dialectical connection is also valuable. Organised peer support provides an avenue for such a connection. However, while members of NA have a choice of nineteen meetings a week to go to, there are presently no groups available for non-members with hepatitis C, despite the efforts of the Hepatitis C Resource Centre to establish them.

The Hepatitis C Resource Centre

Hepatitis C Resource Centres’ operate in Auckland, Christchurch, and recently, Dunedin. These organisations are government funded and operate to provide information and services to the public, professionals, and people with the virus. Auckland’s Hepatitis C Resource Centre is run by Robyn Brown and has no other paid employees. Participants spoke highly of the level of information available through the centre, particularly that of the quarterly mail-outs2; however, for many this newsletter arrived infrequently and was their only point of contact with the centre. Some participants expressed difficulty in accessing the resource centre through phone, while others lamented the lack of a supportive group network:

When I first made contact with the Hepatitis C Group I was given a lot of information but it didn’t feel like a group. I don’t know, I intuited, I didn’t get the feeling that I would be held in some way, I didn’t feel warmth or actual support. (Miranda)

While the Auckland Hepatitis C Resource Centre has approximately 900 on its mailing list, the number of people turning up to peer support meetings was so few that these gatherings were discontinued. Reasons why so few people attended support meetings, when there is an expressed need for them, are unclear and are likely to involve a number of different factors.

 

Some participants’ spoke of a need for an expansion of services at the Resource Centre, an issue which is presently incompatible with the allocated budget of $78,000 per annum that the Auckland Hepatitis C Resource Centre receives. A lack of services and difficulty of access is one reason given why the support groups were not attended:

Do you utilise the support group?

I don’t know when to go along. I can’t get through on the phone. There needs to be two phone lines at least … there needs to be an education officer, there needs to be two or three people there. (Sarah)

Meeting these needs would involve an expansion of the budget; thus requiring a greater level of government acknowledgement and support for the secondary and tertiary prevention of hepatitis C. The New Zealand Government’s 2002 report on hepatitis C focuses upon primary prevention: “ensuring the safe supply of blood and blood products; and minimising the transmission of diseases through non-transmission routes, primarily injecting drug use” (MoH 2002:3). This focus on harm minimisation, while obviously necessary, is at the elementary groundwork stage: it does nothing to address the needs of people living with the virus.

 

Another reason for low turn out at meetings is the existence of rifts between people with hepatitis C who have differing modes of transmission. This is posited as a central determinant in the high failure rate of support groups in Victoria, Australia (Campora 1999:144), and is also evident in Auckland. Some injecting drug users (both former and current) and non-injecting drug users report feeling alienated and uncomfortable around each-other; an issue rooted in the stigma surrounding intravenous drug use3. This feeling, of not being “a part of”, was expressed by Miranda who contracted hepatitis C through a blood transfusion in the 1970s:

And when I went on the polymerase inhibitor trial, actually for myself it was really challenging to go into that hospital with that group of people because a lot of them did look like jail birds and druggies … I mean I’m, I don’t know how I appear to you, but I am not your average kiwi mum somewhere … I think I have got a wider view of life. But it feels like I am lumped together with this group of people that I am not a part of and um, it’s hard. (Miranda)

Of the four participants in the study who have never used drugs intravenously, this comment was the closest to a discriminatory remark made; for while some expressed discomfort, a non-judgemental attitude prevailed.

 

Elisabeth, however, did clearly express distaste at attending meetings in which intravenous drug users were perceived to be present. Although she had contracted hepatitis C through intravenous drug use in her past, Elisabeth felt she “had turned her life around”, and avoided the Hepatitis C Resource Centre as she believed it to be unduly focused on drug users and beneficiaries:

But once again I find that it [HCV Resource Centre] has a very negative slant, it is all based around the needle exchange, pot luck suppers and such forth which makes it sound like everybody with hepatitis C is on a benefit of some sort, the sickness benefit, has a history of drug use, and is probably still a user. And I have never gone to any group meetings because I consider I just won’t fit, and I know that’s not true. But I don’t want to be the only one who is like outside that circle and won’t fit. So I am just staying out at the moment, and I think there are probably a lot of people out there like me. My partner’s ex-wife is a lawyer, and I’m sure she doesn’t trot along to a meeting. I think there are a lot of groups of people out there who would be very glad to have some sort of contact, very glad. (Elisabeth)

The desire for a support group comprised of professionals with hepatitis C seems somewhat alarming, as it perpetuates a divide that hepatitis C support groups would hopefully try and remedy. This attitude appeared to be based on fear and ignorance rather than experience; as the majority of people who would be motivated to attend a support group would more likely be ex users, like Elisabeth, rather than current intravenous drug users. The discriminatory attitude expressed toward beneficiaries and drug users was rather unnerving for her interviewer who had a long term history of both vices.

 

Another reason expressed by participants for not attending meetings was that of tiredness, which is indicative of the nature of the disease. A lack of energy and the fatigue symptomatic of hepatitis C can cause interpersonal relations to be tiring, and make the effort of attending a meeting just seem too much:

I was depressed, I was isolated from my friends, not because my friends want to be isolated from me, but because I didn’t feel like talking to them any more, before I couldn’t stand to be a minute in the house, now I can’t wait for everybody to go and I just sit down here and just relax ... I was one of the founders of the Hepatitis C Group, the first reunion that we had was in my home, because I thought we need something like that, and then I was too tired to go and I am still receiving the mail, and I still try and see Robyn occasionally, but I get too tired doing that, so but the basically in the system there is nothing there, there is absolutely nothing. (Suzy)

While Narcotics Anonymous members with hepatitis C manage to get to NA meetings, the sheer number of meetings to choose from means that rhythms of fatigue can be assented too, and a meeting attended another day. The support meeting initiated by the Hepatitis C Resource Centre occurred once a month at a single location meaning that, if missed, there were no other options until the following month.

Support needs

The need for peer support and recognition of some of the difficulties inherent in forming regular meetings was acknowledged by participants:

So I am talking about peer support here, and local groups, like if you are whacked and lying around in bed day after day then you can’t drive twenty minutes across Auckland city to someone else’s place. That is probably is one of the difficulties of peoples wellness and un-wellness rhythms probably, that would be a complexity to setting up something somewhere, but still you could do local groups. (Miranda)

Other needs expressed were for: respite care, help with shopping, cleaning, and looking after children:

People need respite care. For children, children get frightened, that needs to be addressed. There needs to be a pamphlet for children, that can be available and given to them from a public place, like a doctor’s office ... There needs to be a pamphlet written about what is currently available in the community, if things become too much, I mean if things become seriously too much. Like Plunket, there is a place you can go, the mother with the baby, and spend the day there ... Someone to come and do shopping, because I find it difficult going out anywhere on the streets or anywhere near fumes. Supermarkets I couldn’t go down, anywhere near the detergents and those aisles where there are smells because I would be sick. And I had to constantly be sure that there was somewhere I could quickly go if I was to be sick. Shopping is really important, and being clean, someone to help there so you can have a rest. (Sarah)

 

Knowledge and Information

 

The biggest form of support is probably information and knowing that it could be cured, that people were doing things about it, that technology was working towards a cure … And they said technology will beat you there. And that was the best thing I had to hang on to, they said technology will beat you don’t worry, and I went yeah okay. But just knowledge I think. (Ruby)

 

Kleinman writes of the chronically ill as archivists (Kleinman 1988:48), similarly Krug describes a “fetishizing of documents” by people with hepatitis C (Krug 1995:305). This collecting, sharing and comparing of information, prevalent among participants, magnifies in importance when the disease in question has an unsure prognosis and symptomatology:

Definitely, there is not enough information. Particularly among professionals, I can understand if normal people aren’t aware, but professionals who are dealing with people like that, staggering how ignorant they are about it. I have found it mind blowing. (Ruby)

A consistent lack of support and information from the medical system meant that many participants became researchers of their own disease. Knowledge and information, while at times contradictory and confusing, provided a sense of support against the vicissitudes of hepatitis C. Participants reported gaining information from the internet, the Hepatitis C Resource Centre, books, and others with the disease:

After I found out about it I began researching through the internet, and through getting in touch with the Hepatitis C Resource Centre ... So I started to get a picture, build up a picture of what I was dealing with. (Miranda)

 

Conclusion

There are no longer any ghosts that can remind the living of reciprocity. But ... a diversionary practice remains possible. (de Certeau 1988:27)

 

It seems essential for the diversionary practice of peer support to be embraced for people with hepatitis C to break out of isolation and combat the stigma of the disease. So striking is the difference in distress levels between the participants who had the support of NA and those who didn’t, that peer support cannot be ignored as an important factor in maintaining the physical and mental well being of individuals living with the disease. Not all participants want or need to go to NA, and that is not a proposal I am advocating. The support received for people with hepatitis C is a fortuitous ancillary of going to NA; however, the primary purpose of attending this fellowship is to remain abstinent from drugs and alcohol. The reasons why a hepatitis C support group has not remained sustainable in Auckland are complex and involve issues around money, stigma, and the debilitating nature of the disease. Nevertheless, the desire for a peer network of support was expressed so strongly by the participants, that this is a venture that must not be relinquished. Through conducting these interviews I was able to bring together Miranda and Elisabeth which, considering the extreme nature of Elisabeth’s isolation, was an easy but substantial achievement. Similar facilitation by medical and other services would be of great benefit in linking together people living with hepatitis C, so they do not have to ‘do it alone’.