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A dirty little secret: stigma, shame and hepatitis C in the health setting
  1. Jane Megan Northrop
  1. Correspondence to Dr Jane Megan Northrop, Adjunct Researcher, School of Health Sciences, University of Tasmania, Private Bag 135, Hobart, TAS 7001, Australia; Jane.Northrop{at}utas.edu.au

Abstract

While recent medical innovation shows great promise in treating hepatitis C (HCV), it remains a condition associated with profound stigma. HCV is a bloodborne virus (BBV) most commonly transmitted in high-income countries by injecting drug use, and it is the stigmatising association between the two which is deeply problematic for those with HCV. A qualitative study undertaken in 2002 found that disclosure in health settings places those with HCV in positions of pronounced vulnerability. Disclosure is a primal scene, an interface, where the stigma of HCV, replete with connotations of disease and deviance, potentially transforms those affected into shamed subjects. Standard precautions protect health workers and minimise the transmission of contagion, measures which, in theory, also mitigate the requirement of those with BBVs to unnecessarily disclose their blood status. However, questions on pre-employment health checks, concerns that health treatments might adversely affect the liver and an ethical need to pre-emptively inform healthcare professionals undertaking exposure prone procedures are occasions when those with HCV confront the decision to disclose their blood status. This paper employs Goffman's model of actual and virtual social identities, along with Douglas' notion of dirt and pollution, to examine the dilemmas around disclosure those with HCV negotiate within the health setting. Discriminatory responses by healthcare professionals elucidate the stigmatising potential HCV carries. The subsequent reticence by those with HCV to disclose their blood status risks less than optimum healthcare. Recent studies indicate that stigma occurring in health settings remains a perennial concern for those with HCV.

  • Hepatology
  • Social science

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Introduction

A central pillar of sociological inquiry seeks to examine the relationship between individuals and collective action, and the moral deliberation involved. Illnesses tainted by the stigma of questionable lifestyles present specific challenges, particularly in health settings when treatments are sought. Hepatitis C provides one such example. Within the high-income world, the hepatitis C virus (HCV), replete with connotations of illicit behaviour and self-infliction, is most commonly associated with injecting drug use (IDU). This paper deploys a sociological lens in reviewing archival data from an unpublished qualitative study undertaken in 2002, where 16 people with HCV living in Australia were interviewed to examine their decision-making processes around disclosing they have HCV. They had contracted the virus in a range of ways. None was engaged in IDU when interviewed. Despite this the association between HCV and IDU was found to be highly problematic, impacting all aspects of life: personal relationships, employment opportunities and significantly in this instance, access to health services. Because hepatitis C is often concealable, the decision to disclose one's blood status and to whom emerged as a centrally important consideration. Participant accounts underline shame, stigmatisation, fears of potential stigmatisation and extreme caution around disclosure. In keeping with subsequent research,1–11 health settings emerged as one of the most vulnerable sites for experiencing stigma. Much HCV research has focused on at-risk populations: those engaging drug treatment and/or criminal justice services in particular.12 This study draws on a less visible group living with HCV to consider how they managed stigmatising information in the health setting.

HCV is a significant health issue affecting 1.1% of the global population. Approximately 80 million people live with chronic hepatitis C (CHC) and millions of new infections occur each year. An estimated 700 000 people die annually of complications arising from the virus, most notably liver cirrhosis and hepatocellular carcinoma.13 HCV is a bloodborne virus (BBV) transmitted largely by contaminated injecting paraphernalia, blood and blood products. In middle-income countries, exposure often occurs within healthcare or community settings. Globally, WHO estimates 8–12 billion injections are administered annually, but deem 50% of that number to be unsafe, particularly in sub-Saharan Africa and Asia. In contrast, within high-income countries, HCV is transmitted most commonly by IDU, a privately initiated, illegal behaviour associated with deviance and depravity.14 ,15 In addition, its prevalence in Australia is disproportionately higher in socioeconomically disadvantaged groups, notably Aboriginal and Torres Strait Islander populations15 and those in custodial settings,16 ,17 social groups already burdened with manifold stigmas.

HCV was first identified in 1989 and is among the most frequently reported notifiable infections in Australia.18 In 2015, an estimated 227 306 Australians were living with CHC infection.19 Symptoms range from fatigue through to liver failure.17 Insidiously, those infected may be asymptomatic for many years and unaware they have the virus. Furthermore, poorer outcomes are associated with the duration of infection and, if left untreated, CHC may progress to cirrhosis, and in advanced stages to hepatocellular carcinoma and eventual death.14 Rates of primary hepatocellular carcinoma are currently rising faster than any other form of cancer, driven largely by the number of people with HCV who remain untreated.17

Earlier treatments for CHC were arduous, requiring between 6 and 11 months of self-administered injections and oral medication. Debilitating side effects20 and clearance rates of <75%21 contributed to a low uptake of treatment. In 2016, the Australian government subsidised newer direct-acting antivirals.22 These medications are well tolerated, taken orally over shorter timeframes and report higher curative rates.17 They offer vastly improved opportunities to clear the virus, potentially safeguarding the future health of those with CHC, and stemming the predicted health burden of HCV-related illness.23 In Australia, 80% of HCV transmissions occur through unsafe injecting.17 The stigma surrounding IDU and a reticence to disclose having engaged in such practices to healthcare providers, particularly when they occurred well in the past, are important factors in these omissions.11 ,12 ,14 ,17 ,24 Finding the undiagnosed, those who are asymptomatic and unaware they have HCV, remains a public health challenge.12 ,24

Theoretical framework

Stigma is widely recognised as influencing governmental, communal and individual responses to illness resulting in poor health outcomes for those implicated.25 The logic of stigma maligns the afflicted and consigns them to the margins of society; marked by abhorrence or fears of contagion, they are deemed unworthy and undeserving of the care afforded to the unaffected. Illness has long been associated with sin and continues to be a site of moral distinction. Turner posits that in progressively secularised societies, medicine has replaced religion as the social guardian of morality.26 Diseases involving deviance or self-infliction are rarely seen in morally neutral terms, and are increasingly characterised as burdening the state.27 ,28

Goffman's work on stigma continues to be influential.29 ,30 He describes stigma as a particular attribute which taints, diminishes or differentiates one from others in a deeply discrediting way. He nominates the relationship between a specific attribute and the stereotypical ideas associated with it as informing our ideas regarding stigma.30 In this instance, HCV is stereotypically linked to IDU and associated deviant behaviours. The beliefs and attitudes of the untainted, ‘normals’ as Goffman would have it, designate the stigmatised as less than human, therefore, either consciously or unconsciously, informing discriminatory practices which impact on the life chances of the stigmatised.

Goffman elaborates how stigma makes it necessary to engage impression management to conceal facts that may induce negative social sanction. His dramaturgical model demarcates frontstages as the public realms of social life and backstages as the private, personal regions where performance is suspended.31 Health settings represent an intersection between these two domains where aspects of our personal lives are exposed, often to complete strangers. Here, our bodies are uncovered, examined and our habits and lifestyles probed in a bid to diagnose and develop treatment regimes. Goffman delineates the terms virtual and actual social identity to refer to the characterisations of the self projected in social encounters.30 Individuals are highly invested in presenting a virtual social identity, which aligns with the prevailing ideals of social acceptability. Stigma, Goffman argues, emerges when discrepancies between virtual and actual identities are revealed.30 These conceptual distinctions are useful when considering HCV and issues of disclosure. Since HCV is not always visibly evident, those affected are untainted while HCV remains undisclosed. However, being ‘discredited’ through disclosure is potentially hazardous, amplifying tensions for those who would rather keep stigmatising information hidden.4 ,32

For Goffman stigma is enacted in face-to-face interaction. This encounter, between stigmatised and ‘normal’, represents one of ‘the primal scenes of sociology … where the causes and effects of stigma must be directly confronted by both sides’.30 Disclosing one has HCV is one such scene, a moment of profound uncertainty where the possibility of acceptance or shame inducing rejection may ensue.

Those carrying viruses like HCV and HIV have been seen less as ‘victims’ and more as ‘agents’ of contagion, posing a potential threat to healthcare staff and other patients.4 ,33 In one seminal investigation,34 those with HCV reported being placed on ‘dirty’ lists for surgery and being told their sheets would be burned following discharge from hospital. Here the blood of those with HCV is perceived to be polluted and perilous. For anthropologist Mary Douglas, pollution is linked to disorder and danger where the ‘polluting person is always wrong’.35 By crossing a symbolic line, which should not have been transgressed, the infected cause displacement and, as a consequence, unleash danger on others. Participants internalised these concepts, frequently describing HCV as a ‘dirty disease’ or a ‘dirty little secret’, information about the self which needs to be carefully managed and disclosed only when necessary.

Methods

This paper reviews 16 in-depth interviews undertaken in 2002 by the author with 8 men and 8 women living in south-eastern Australia who had been diagnosed with HCV. The project received Ethics Approval from the University of Tasmania. The interviews were face-to-face, tape-recorded and transcribed verbatim. Personal and identifying information was altered to maintain the anonymity of participants. At the time of interview, participant's ages ranged from 33 to 60 years, with a mean age of 44 years. They came from varied social backgrounds and lived in rural and urban areas. Four participants had successfully undertaken treatment; one was undertaking treatment when interviewed.

Recruiting participants was challenging. Flyers posted in health facilities yielded only two responses. Engaging staff from a non-government organisation supporting people with HCV and healthcare professionals providing HCV treatments proved more fruitful. These contacts in effect became ‘gatekeepers’ who, in turn, disseminated written information about the study to prospective participants. Participants then either contacted me, or I was given the telephone numbers of people who agreed to participate in the study.

The interviews were semi-structured with questions guided by a theme list used at each interview. Topics focused on the decision-making processes involved in disclosing one has HCV. Supportive encounters, socially and within the health setting, experiences of discrimination, and the impact of HCV on health and lifestyle were of particular interest. Interviews lasted from 1 to 2 hours, with informal conversation continuing for some time after on occasion.

Each interview was examined using a systematic, multilayered analysis.36 This entailed: examining each transcribed interview to determine the places and people with whom participants disclose and discuss HCV, distinguishing between backstage and frontstage areas; identifying the contexts in which stigma was experienced and its consequences; examining the participant’s interpretation of such events; determining when people construct virtual identities and finally, examining the transcripts for evidence of self-stigmatisation or shame. The transcripts were then compared and contrasted to determine similarities and differences in experiential content. A final reading determined which excerpts from the data best illustrated analytic conclusions.

Data and discussion

HCV has been largely constructed within the context of medical discourse as a disease37 and in public health discourse as an infectious virus linked to IDU.38 Such is the taboo surrounding IDU that the majority of participants, regardless of how they may have contracted the virus, became acutely aware of potential stigmatisation from the time they were diagnosed. Disclosure in health settings required specific consideration, but subsequent stigma encountered within health settings emerged as a dominant theme across participant accounts. At diagnosis, when seeking health-related treatments and negotiating the work/health nexus were occasions when participants found themselves most vulnerable to stigma, prompting them to review when and where they would disclose they had HCV.

Diagnosis

While newer treatments offer optimism for cure, many with HCV were diagnosed at a time when information about the virus was ambiguous and confronted the newly diagnosed with a range of possibilities, from minimal impact on health to premature or imminent death. Many participants were unaware their doctors were testing for HCV and few received prediagnosis or postdiagnosis counselling. Four were screened for HCV because of past IDU and two were diagnosed after donating blood. The remaining 10 had undergone diagnostic testing to determine ill health when abnormal liver function was noted. For most participants diagnosis with HCV was unanticipated. In the absence of reliable treatments, diagnosis was described as harrowing, precipitating a range of emotions including shock, angst, anger, shame and overwhelming uncertainty. In keeping with subsequent studies,1–3 ,39–43 participants reported a medical profession generally poorly informed about HCV, which exacerbated the confusion and uncertainty following diagnosis. Moreover, fearing the negative reactions of others constrained open discussion, intensifying feelings of isolation and distress surrounding diagnosis.

To learn that one has HCV can be deeply demeaning to one’s self-identity. One participant recalled feeling his self-esteem dissipate onto the surgery floor when informed he had HCV. Here, the past and future collapse into a disrupted present. Those unsure how they had become infected scoured their pasts to determine the defining moment when they had contracted the virus. For many, reorienting to the present meant recalling past identities which had little in common with their current selves’.

Most participants actively worked to conceal having HCV, primarily by being highly selective with whom they disclosed, and by maintaining virtual identities in a bid to pass as ‘normal’. For most, being diagnosed with HCV destabilised their actual identities, disrupting beliefs about immediate and future health. Unlike many illnesses where the afflicted might speak openly, those with HCV assiduously managed virtual identities to conceal they were in possession of a stigmatising attribute.

Encounters within the health setting

Coffman writes that it is in the impersonal contact between strangers that stereotypical responses are most frequently deployed to categorise others and it was when encountering unfamiliar healthcare professionals that participants frequently experienced stigma within the health setting. Here, stigma related to three main themes: moral assumptions conflating HCV with IDU, breaches of confidentiality and inappropriate fears regarding contagion. Several participants felt morally obliged to inform all healthcare professionals they encountered of their viral status, whereas others were highly discerning regarding disclosure. For the latter group, a desire to receive appropriate treatment was closely followed by assessing the degree of risk for the healthcare professional in terms of blood exposure. Potential breaches of confidentiality and fears of discrimination also informed their decisions to disclose or otherwise.

Participants described both subtle and overt discrimination within health settings after disclosing they had HCV. They recalled changed attitudes, altered demeanours, terse voices and the avoidance of eye contact, insinuations of wrongdoing; all expressions of passive discrimination. People were asked, on inappropriate occasions, how they had contracted HCV. Concerns were expressed about confidentiality, for example, when a medical file is marked externally noting a patient's HCV status, and the inherent difficulty in maintaining confidentiality when living in small communities where access to health services are limited. In rural health clinics, participants encountered people they knew socially, they had been to school with or knew professionally. Losing control over who became aware of their blood status added to the tension around using health services and, on occasion, impeded access to such services.

The implementation of Standard Precautions44–46 presumes specific bodily fluids to be potentially infective and places the onus on healthcare workers to safeguard against transmission, therefore, absolving the need for anyone to disclose having a BBV. However, participant accounts indicate that healthcare professionals are inconsistent regarding infection control procedures and, consequently, stigmatise those with HCV.42–47 One woman was asked by a dentist to make appointments at the end of the day, so that equipment could be cleaned properly; and another dentist wore excessive protective clothing when treating a participant with HCV. When admitted for routine surgery another participant requested that her HCV status be handled discreetly, rather than being documented in her notes, because she worked in the health sector and did not want her HCV status exposed. Her anaesthetist responded by saying that hospital staff would have to know because ‘although the hospital has policies regarding the transmission of viral infections … and they need to be adhered to … it is not always the case’.

Participants noted that some healthcare professionals, particularly those who were unfamiliar, made assumptions about their characters because they had HCV. One middle-aged woman received a blood transfusion in 1985, and was later diagnosed with HCV. When attending the Department of Emergency Medicine at her local hospital, resident doctors rejected her explanation of how she contracted the virus, preferring to believe she was an injecting drug user (IDUr) and sexually promiscuous, and dishonest.I was trying to explain to the doctors, no, I haven’t been sleeping around, and no, I haven’t been using drugs. That’s not how I got it. I was trying to convince them … My GP knew, because he had all my records; he knew I'd had the blood transfusion after the accident (original emphasis).

Participants also spoke of being denied analgesia when in hospital, again by unfamiliar health practitioners, who suspected malingering to source drugs. These participants felt their reasons for needing medication were overlooked since the healthcare professionals involved made presumptions that because they had HCV, they must also be IDUrs seeking drugs.

One participant supported a friend, terminally unwell with hepatitis C, through hospitalisation. Doctors, disagreeing on a diagnosis and convinced he was feigning illness, prescribed antidepressants. He was in considerable pain and requests for stronger analgesia were denied. He developed dysphagia as his health deteriorated and declined oral analgesia. Mounting frustration with hospital staff resulted in him being discharged for refusing treatment, only to be readmitted as his health worsened. A subsequent scan revealed tumour on his liver and he died within a few days. The participant's voice was full of anger and sadness as she recounted the events surrounding her friend’s death.The thing that got to him, and myself was … as soon as the CT scan showed he had a tumour, they gave him as much morphine as he wanted. And they apologised. But, prior to that he was trying to tell them that he was in excruciating pain, and he must have been in pain. He was in the advanced stages of cancer, the guy only had days to live and he’d been telling them all along he was in pain. And they wouldn’t give him anything for the pain … He felt like he was being treated like a drug addict who wanted morphine.

As Jones et al 48 note, the essence of stigma is ‘impression engulfment’, where individuals are unable to deal with the stigmatised without considering the discrediting attribute as central to the identity of those affected. The illustrations cited above, in accordance with recent studies,10 ,39 ,41 ,42 ,49 suggest that healthcare workers, particularly those who have limited experience with people who inject drugs,42 ,43 may well classify those with HCV by stereotype, as people who engage illicit behaviours and have ulterior motives for seeking care. The readiness of healthcare professionals to link an ‘attribute’ (HCV) to a ‘stereotype’ (IDU) elucidates how cognitive processes are deployed to classify and organise information30 ,50 in a way that results in stigmatisation, while concomitantly impeding the delivery of optimum healthcare for those with HCV.

While those who experience stigma might vacillate between ‘cowering’ and ‘bravado’,30 participants encountering stigma in health settings frequently recounted shame, citing feelings of uncertainty and diminished worthiness.15 ,51–54 Consequently, alternate strategies were engaged to avoid being stigmatised, often with important implications for the quality of healthcare they received. The most common strategy was seeking out health providers who were non-judgmental about HCV. Other strategies included non-disclosure. For some this involved changing healthcare providers and not disclosing their blood status, or avoiding healthcare settings altogether. Participants described being treated differently when healthcare workers became aware of their blood status. One participant described having blood taken at a pathology service by a phlebotomist with whom she disclosed she had HCV:I felt like her approach to me wasn’t completely professional. I felt she was judgmental, and also in the way that she administered the blood test, it hurt … She wasn’t really careful in the procedure. That’s never happened before. I felt her attitude was different … She was rough, rude, indifferent and totally unfriendly.

This participant decided she will no longer disclose that she has HCV to new healthcare professionals she encounters, ‘I want to be treated like every other person … and at the moment I don’t feel I’ve been treated the same way’. As Goffman observes, manipulating impressions favourably are strategies to protect the self.31 The aforementioned participant's position is unequivocal. She described her decision as driven by ‘self-preservation, not only physically, but mentally and emotionally as well’. Non-disclosure, however, impacts the quality of healthcare received: inaccurate diagnoses and potentially hepatotoxic treatments may be prescribed, while opportunities to monitor disease, promote positive lifestyle choices and explore advances in treatment are missed.

Another participant had started to feel the symptomatic fatigue and nausea of progressive viral encroachment. She wanted to undergo treatment, but had previously experienced feeling shamed within the health setting as a person with HCV, and feared being judged by hospital staff.One of the reasons why I really just can’t face treatment is that I really don’t want to deal with the nurse's reactions to me. I don’t want to feel like I'm dirty or diseased, or that I’ve done something bad or wrong to end up there. And I don’t want to deal with their reactions to me, not treating me like they should.

Her perceived fear of stigma carries layers of meaning. She envisages HCV will link her to IDU and to moral issues of self-infliction, reflecting wider social perceptions that health is the responsibility of the individual and that those who take risks which threaten their health are deserving of the diseased state they find themselves in26–28; she fears the disdain of healthcare workers, that she will be deemed unworthy and undeserving of their care. Another woman described an incident when an initially cheerful receptionist made her feel so uncomfortable after becoming aware of her HCV status that she fled the surgery before seeing the doctor. These accounts support ongoing research that stigma encountered within health settings, along with perceived fears of potential stigma, may inhibit people with HCV from accessing healthcare.1–2 ,7–8 ,15 ,39 ,41

Work, health and hepatitis C

Participants expressed a range of concerns around work, disclosure and HCV. The majority of those employed feared stigmatisation and discrimination in the workplace, and had not informed their employers since they believed they would be negatively sanctioned if their HCV status became known. Tensions around disclosure also arose when participants required sick leave, particularly to undergo treatment, and when applying for jobs. Applying for new jobs can be stressful, especially when employers use discriminatory recruitment practices which require applicants to disclose personal health information as part of the application process. One man recalled his experience:I got an application form from a friend to work in one of the vegetable processing companies. That was fine. I was looking forward to that. It was about two-thirds through the application form when I would have to mention that I was hep C positive. And if you don’t mention it when you’re filling it out and it comes up later, that’s the end of it, you know. The way they see it, it's one of those things where legally you don’t have to mention to anyone that you have this condition … but if you don’t, it’s considered lying … so you can’t win whenever that’s involved. If you want to get the job, I don’t think you mention it, because you won't get past that stage really. I didn’t hear back from them … No; it’s the kiss o’ death mate, to mention that.

This moral dilemma in documenting he has HCV was experienced by many. He and others feared if they omitted disclosure there could be future legal implications. The specific wording of some documentation, for example, ‘have you ever had an infectious blood disease’, requires those who are no longer infectious to disclose. Others spoke of the angst in non-disclosure of getting a job and then fearing their blood status would be exposed. To evade disclosure, participants avoided employers who required such information. In this way, stigmatisation narrows the employment possibilities and, therefore, the life chances of those with HCV.

Three participants worked as miners when diagnosed with HCV. They spoke of extreme homophobia and intolerance within the communities they lived and worked, and feared ostracism if their blood status became known. As a consequence, they were judicious regarding disclosure. One man spoke of his experience while undertaking treatment for HCV. He informed his employer that he had a blood infection, and was on extensive sick leave while undergoing and recovering from treatment. During the last 6 months he was off work, company managers telephoned him, anything from twice weekly to fortnightly, threatening to sack him if he was not working to full capacity within 2 weeks of returning to work, or, alternatively, offering him a payout to resign. Wanting to retain his job he negotiated to resume working on light duties, but was instead returned to his old position. He quickly regressed and required sick leave again. One of the managers overseeing his return to work programme spoke with his doctor who inadvertently disclosed that he had HCV.I then started getting feedback from the worksite that the other miners were going to refuse to work with me, that they didn’t want me onsite … And if I stepped a foot onsite they were all going to go out on strike … I mean, three hundred blokes were going to walk off the job! (original emphasis). Jane: Because you had hepatitis C? Because I had hepatitis C and the potential of them getting it … In the mining game … its heavy industry and you do get cuts and lacerations and knocks, and all the rest of it. And from time to time you do help each other bandage fingers and things like that, so it was a big issue and they weren’t happy having me down there.

In the face of a hostile worksite, aware of his HCV status, this participant decided against returning to the mine. The company had arguably been discriminatory in its dealings with him, and with union support he was well-positioned to negotiate a payout to resign. He relocated to another town and even though treatment cleared the virus he only applies for jobs where personal health information is not sought. He has ‘knocked back’ jobs that have required medicals because he does not want to lie about having had HCV, and does not believe his application would succeed if that information was disclosed.

Others who had not disclosed to their employers feared both rejection by workmates and clients, and being denied opportunities for career advancement if their viral status became known. To pass as ‘normal’ while undergoing treatment, one male participant went home in his lunch hour and slept so that he would have enough energy to get through the afternoon without arousing the suspicions of colleagues. He compares his experience undertaking treatment for HCV with a colleague who had a less stigmatised illness:We’ve got a bloke at work who has cancer and he’s going through radiation treatment, going through ups and downs, and we are all sharing with it, ‘how are you feeling today?’ and having chats with him, and sort of supporting him. And I feel, here I’ve been through two lots of treatment, which makes you feel really sick, and you’ve just got to go along and pretend you’re your normal self and not get the sort of support you would get from having something that’s not so controversial. If it didn’t have that stigma behind it, you could probably share with other people more, and they’d be more sympathetic to you. Maybe it’s just me, maybe I should be more open about it, but then I suppose that affects your life in other ways. You’d probably be discriminated against in terms of promotion and wages, and those sorts of things, if the bosses knew you had an illness that could cause a problem for you.

This participant articulates the tension and ambivalence surrounding disclosure in the workplace. Moreover, he conveys the isolation of non-disclosure, of enduring difficult treatments without being able to discuss them and receive the support of colleagues. He was reluctant to disclose because he feared the discrimination which may ensue, so he maintained a virtual identity to mask his stigmatising attribute.30 His account also touches on themes articulated in Parsons' ‘sick role’55 relating to illness as a form of deviance because the afflicted are unable to perform social roles. Those impacted by the chronic symptoms of HCV also confront the possibility of prolonged social dysfunction and reduced earning capacity.

Many participants described feeling socially isolated. Fatigue and the reluctance to disclose to new acquaintances added further to social isolation. The most isolated were those without significant others, those who were physically debilitated and those unable to work. People affected by HCV are further demeaned by reduced participation in social life. Consequently, the constraints around disclosure contribute both to social isolation and, indirectly, to perpetuating stigma.

Conclusion

HCV has been referred to as a silent or invisible epidemic exceeding HIV/AIDS many times over in the numbers of people affected.56 ,57 Unlike HIV/AIDS, there have been few public figures to come forward and raise the profile of hepatitis C. Participants in the study were acutely aware that their feelings of shame and fears of stigmatisation contribute to the silence surrounding HCV. Herein lies a paradox for those with HCV, stigma and shame constrains those affected to conceal their actual identities as individuals living with the virus, creating something of a void in which the dominant paradigm, a stereotypical, virtually constructed identity of HCV, is portrayed. Goffman30 describes stigma as enacted in face-to-face interaction but, in the case of HCV, stigma can also be seen to be constructed within the wider social context, where the discrepancies between actual and virtual have broader implications. Here, a stereotypical identity has been medically and epidemiologically constructed in the apparent absence of those under discussion, and it is, consequently, imposed on them, thus informing wider meanings of HCV. This virtual social construct conflates HCV with IDU and because there are limited alternate narratives describing the actual lived experiences of those with HCV, stigma is perpetuated. Participants articulated the need to raise public awareness and challenge existing notions of HCV as integral to reducing stigma and improving health outcomes for all people living with HCV. Several acknowledged that being more open about having hepatitis C might assist in reshaping the broader meanings of HCV, but feared the potential impact of stigma on their own health, employment potential and the lives of their families might be too high a price to pay.

The power differential between patient and healthcare professional is one which exposes all patients to potential shame and humiliation.51 ,52 Here, it is the frailty of mind and body, its functionality, dependence and social acceptability that are called in to question. For those who are perceived to have been the architects of their own failing health, and furthermore, threaten others through contagion, the shame stakes are heightened. While the accounts presented here occurred in 2002, they nonetheless underline the complexity involved in negotiating health settings when in receipt of a highly stigmatised condition. Moreover, they remain relevant to those with HCV. The stigmatising discourses surrounding HCV are degrading and powerful. They silence, shame and marginalise those affected, positioning them at the peripheries of social life. While new treatments have pundits tentatively predicting the eradication of HCV, overcoming the stigma and shame surrounding HCV will be integral to actualising its demise.

References

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Footnotes

  • Competing interests None declared.

  • Ethics approval Ethics Committee University of Tasmania, Australia.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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