Everyday resistances:
Safe to drink? Alcohol use and hepatitis CMagdalena Harris \ 6th Australasian Viral Hepatitis Conference \ Brisbane Oct 2008
Introduction
Good afternoon. In this paper I will briefly outline the consumption practices and meanings of alcohol use for 40 research participants living with hepatitis C. Despite the importance of alcohol – in society as a legal intoxicant and for people with hepatitis C – as a risk factor in the progression of their disease, very little social research has addressed the practices and meaning-making processes around alcohol consumption for people living with the virus.
Literature
The vast majority of literature on alcohol and hepatitis C is clinical in nature, with a significant focus on ‘heavy drinkers’, or people who consume more than three standard drinks, per day. Clinical trials have consistently found that heavy alcohol consumption significantly increases the progression of fibrosis, cirrhosis and end stage liver disease with researchers concluding that alcohol use is the most important controllable factor in hepatitis C progression. Some researchers perceive and critique a tendency within the medical profession to provide equivocal messages about alcohol consumption. However, a reason why abstinence from alcohol may not be universally promoted is that there is inconclusive clinical evidence regarding whether light or moderate drinking is harmful for people living with hepatitis C.
Method
This paper draws on a recent qualitative study of the experiences of 40 people living with hepatitis C: 20 in Auckland, New Zealand and 20 in Sydney, Australia. Participants comprised 22 women and 18 men with an age range of 25 to 63. 24 participants were abstinent from alcohol, and had been from six months to eighteen years. 15 of these non-drinking participants were members of Narcotics Anonymous which requires abstinence from all mood altering drugs. Therefore, for these members ceasing alcohol use had less to do with hepatitis C than with the management of their prior drug and/or alcohol dependence. Of the remaining participants nine were abstinent but did not belong to NA, nine were occasional or light drinkers and seven were regular heavy drinkers.
Abstinence as ‘the right thing to do’
Despite a lack of clinical evidence that light or occasional drinking is harmful for people with hepatitis C, participants often spoke of abstaining from alcohol as “the right thing to do”. This belief could, for some, manifest in guilt and self blame when they had the occasional drink. For example Claire said:
I love beer, and so, I’d have one beer and that was it. And I said to the specialist, “Is that gonna make a difference?” He said, “If you can stop at one, it won’t.” But I still felt guilty having that one, and really bad. (Claire, 32)
Being known in ones social circles as a drinker coupled with a desire to ‘do the right thing’ created a dilemma for participants who did not wish to disclose their condition. Claire’s experience of feeling the need to justify her abstinence was common:
They were saying, “Why aren’t you drinking?” “Are you pregnant?” “No! I’m not pregnant, leave me alone. I’m on a detox diet. Just go away!” (Claire, 32)
The ubiquitous nature of alcohol consumption in many social settings can cause non-drinkers to feel self-conscious and alienated from the growing intoxication of their companions. This, coupled with the demands to justify their abstinence, caused some participants to stop attending social gatherings. As Rose said, “it was hard going out because I didn’t drink, so I didn’t go out.”
Medical messages
Participants described receiving diverse messages from health care workers regarding their consumption of alcohol. Some were advised to reduce or cease use, whilst others were told their alcohol consumption was nothing to worry about. Rebecca, a daily drinker, was given the impression that it was fine to drink, even while she was on interferon and ribavirin treatment. She said:
Whenever I mentioned drinking to doctors, they just kind of looked the other way…They just didn’t think it was a problem. It was like, “What are you worried about?” (Rebecca, 39)
Medical advice regarding alcohol consumption appeared, within this limited study, to be partially dependant on liver function results. As Henry said:
My [ALT] readings were, oh nearly 200... [Then the specialist] told me to stay off the grog straight for six months and I nearly fell off the chair! (Henry, 62)
Research has shown that clinical markers such as ALT levels do not necessarily provide an accurate indication of either liver damage or symptom severity. Interestingly, however, normal liver function counts were often cited by high alcohol consuming participants as a reason why they could continue drinking.
Heavy drinkers
Seven participants described current heavy alcohol consumption, either on a daily basis or in the form of binges. All had been advised to cut down on their alcohol use, and most had done so to varying degrees, whilst remaining heavy drinkers. As Alexis said:
I used to drink a bottle of scotch every three days. My bottle of scotch now lasts about a week. I think I am going pretty good… And I think okay I should stop but I can’t stop. It would be good if I even could [stop] one day a week…But my liver functions aren’t too bad. (Alexis, 47)
Alexis’s statement shows an interesting tension between wanting to adhere to medical recommendations to stop drinking, yet using biomedical markers such as liver function levels to partially justify her continued alcohol consumption. Alexis also said she “can’t stop” drinking. This does not mean that she did not care about her health. It instead reflects the difficulty that participants with alcohol dependencies have in negotiating medical and social expectations to reduce alcohol use.
When I interviewed Jack he was practically housebound from the symptoms of advanced liver cirrhosis and drank two to four beers a night. Jack had been told that his alcohol consumption would kill him, but continued to drink, stating that this was one of the few pleasures he had left in his life:
I could do with a few more beers a night. The way I look at it, is that I am going to die anyway, I figure I am going to die in the next five years so I am quite philosophical about the whole thing. If you are going to die you are going to die, you know…People die of heart attacks in their 40s, so [I could live to] 52, 57, maybe 60. (Jack, 52)
Rhodes and Cusick (2002) refer to attitudes such as Jack’s as indicative of a “postmodern fatalism”, in that the future is conceived as only partially under human control and the main aim is to enjoy the present. Jack’s attitude to alcohol and apparent acceptance of death can also be seen as an expression of agency in constrained circumstances. In resisting his doctors’ admonishments to stop drinking, Jack can be seen to have made a considered prioritisation of pleasure; challenging a biomedical focus on avoiding death at all costs.
Pleasure
Many of the participants in this study had worked hard to reduce or eliminate the use of other drugs that may have been more problematic than alcohol in their lives. For Bianca, an ex-heroin user, a glass of wine was a source of pleasure and she alternately resented having to monitor her alcohol intake and was plagued by guilt when she felt she had had one too many:
I have a huge problem with it [abstinence], huge, because I love a glass of wine...so every glass I have I count. It takes the pleasure out of it…And after where I have come from it is sort of like nothing, compared to my history. (Bianca, 52)
A number of research participants mentioned the use of cannabis as a less harmful alternative to alcohol. Cannabis is a problematic medical recommendation due to its illegality and would not necessarily be an option for those who have overcome a drug dependency. However, cannabis may fulfil a similar pleasurable role to alcohol and has also been found to aid interferon tolerability and adherence. Some specialists recognise this and advise their patients accordingly. As Isaac said:
My doctor, probably in confidence, said “smoke a joint occasionally”…And so I did. And immediately I got this great relief. All my body pain and everything, it relieved me. (Isaac, 45)
Conclusion
Central to understanding why it is that people desist from smoking or excess drinking, or continue to participate in these activities, is the symbolic nature of alcohol and tobacco as commodities and conduits of pleasure and desire.
(Lupton, 1995, 150)
Whilst medical research and health promotion materials invariably frame alcohol use in terms of risk, the stories presented here suggest that it is not just a risk. A focus purely on the risks and harms of drinking tends to remove alcohol use from its social meaning and context, obscuring its role as a social connector and conduit “of pleasure and desire”. This can also act to position people living with hepatitis C who continue to drink as irrational, obscuring the agency that individuals exhibit regarding their use.
Participants described receiving diverse messages regarding alcohol consumption from their medical practitioners and were generally unsure about if, or at what levels, it was safe to drink. This confusion is not entirely surprising as while clinical evidence shows that heavy alcohol use speeds hepatitis C progression there are no consistent findings regarding the risks of occasional consumption. Studies have shown however, that alcohol interacts with interferon efficacy, information which appeared not to have been imparted to a number of participants who had undergone hepatitis C treatment.
There appears to be a need for practitioners to provide non-judgemental and sound advice about the known effects of light and heavy alcohol consumption on hepatitis C progression and interferon efficacy. In this way people living with hepatitis C can make informed decisions regarding the risks and benefits of alcohol in their lives. For some, this may involve the decision to drink. In understanding this decision it is useful to recognise that alcohol use may be an expression of agency and that it can be a source of pleasure as well as a way to alleviate pain. Negative judgements, medical and social, can cause drinkers with hepatitis C to hide their drinking habits; becoming isolated and limiting their opportunities for receiving appropriate medical care. If the reasons for drinking and the meanings that alcohol has for people with hepatitis C are explored then the possibilities open up for non-judgemental care and support as well as an open exploration of alternatives to alcohol use.
References
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Miller, E., Hiller, J., & Shaw, D. (2001). Quality of life in HCV- infection: lack of association with ALT levels. Australian and New Zealand Journal of Public Health, 25(4), 355.
Rhodes, T., & Cusick, L. (2002). Accounting for unprotected sex: stories of agency and acceptability. Social Science & Medicine, 55(2), 211-226.
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