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We never expected this to happen: narratives of ageing with HIV among gay men living in London, UK
Gareth Owen & Jose Catalan
a a b

Peninsula College of Medicine and Dentistry, University of Exeter, Exeter, UK


b

Central North West London NHS Foundation Trust, London, UK

Available online: 14 Nov 2011

To cite this article: Gareth Owen & Jose Catalan (2011): We never expected this to happen: narratives of ageing with HIV among gay men living in London, UK, Culture, Health & Sexuality, DOI:10.1080/13691058.2011.621449 To link to this article: http://dx.doi.org/10.1080/13691058.2011.621449

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Culture, Health & Sexuality 2011, 114, iFirst

We never expected this to happen: narratives of ageing with HIV among gay men living in London, UK
Gareth Owena* and Jose Catalanb
a Peninsula College of Medicine and Dentistry, University of Exeter, Exeter, UK; bCentral North West London NHS Foundation Trust, London, UK

(Received 12 April 2011; nal version received 5 September 2011) The proportion of HIV-positive people over the age of 50 is rapidly increasing in the UK. This reects the use of antiretroviral therapies and the transformation of HIV from life-threatening disease to chronic treatable illness. In this study a biographical narrative approach was used to explore the lived experience of ageing in 10 HIVpositive gay men aged between 50 and 78. While some participants regarded ageing as an opportunity to continue progressing towards valued life goals, others were more ambivalent about their future prospects. The ndings suggest that these differences were particularly inuenced by an individuals biographic relationship to the history of the HIV epidemic rather than chronological age. Those with long histories of involvement with HIV were more likely to be disadvantaged by careers interrupted by illness, to be dependent on state benets and to have social networks damaged by multiple AIDS-related bereavements. The research identies a cohort of older gay men likely to require additional support in adapting to the challenge of growing older with HIV. The article also explores the construction of moral identities in relation to discourses of successful ageing and the possibility of building supportive communities that are sensitive to the needs of older gay men. Keywords: HIV; gay men; ageing; identities; UK

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Introduction The HIV epidemic has reached its 30th year. Although HIV was once regarded as a disease predominately affecting the young, the proportion of those aged over 50 years has steadily increased. The Health Protection Agency (2010) estimates that in 2000, 1 in 10 adults accessing HIV care in the UK was 50 years or older, compared with almost 1 in 5 in 2009. This change is attributed to improved survival since the introduction of highly active antiretroviral therapy (HAART), as well as continued transmission and new diagnosis in older people. Until recently, older people had not been the focus of HIV research and ageing with HIV remains relatively uncharted territory for people living with HIV and for health professionals. The aim of this exploratory study was to identify factors that impact on the experience of ageing with HIV in gay men living in London and to identify issues relevant to the provision of health and social care. We argue that in order to understand the individual experience of ageing with HIV, it is necessary to take account of the historic unfolding of the UK epidemic. This remarkable social history charts a journey across three decades:

*Corresponding author. Email: gareth.owen@pms.ac.uk


ISSN 1369-1058 print/ISSN 1464-5351 online q 2011 Taylor & Francis http://dx.doi.org/10.1080/13691058.2011.621449 http://www.tandfonline.com

G. Owen and J. Catalan

from the rst reports in 1981 of a killer disease affecting gay men, through a period of multiple losses and uncertainly as HIV emerged as a highly stigmatised life threatening condition, to the HAART moment in 1996 and the transformation to a chronic treatable illness and, now, approaching the fourth decade, the uncertainties facing a newly emerging cohort of ageing people living with HIV. While many in this older cohort are relatively recently diagnosed, others have long histories of involvement in the early phases of the epidemic. Here we explore the biographical experience of ageing with HIV in the context of the social history of the UK epidemic. Background Ageing and HIV In recent years, medical research has begun to focus attention on the inuences of chronic HIV infection and HIV therapeutics on ageing processes, although the extent of this relationship remains uncertain (Deeks and Phillips 2009; Pratt, Gascoyne, and Cunningham 2010). Diseases associated with ageing, such as coronary artery disease, dyslipidaemia, metabolic syndrome, diabetes, osteoporosis and dementia, are more likely to develop earlier in HIV-positive people. Some effects of HIV, including cognitive impairment and metabolic and hormonal changes, mimic those caused by normal ageing (Myers 2009). Psychosocial research on the experience of ageing with HIV is relatively sparse. In a nationally representative US survey, Crystal et al. (2003) found that older HIV-positive men who have sex with men reported better general health and emotional well-being than younger cohorts and, in an Australian study, Lyons et al. (2010) found that people living with HIV aged over 50 years rated their well-being no lower than younger people living with HIV. However, other studies suggest a more complicated picture. Kalichman et al. (2000) found that suicide ideation had a higher prevalence in older people living with HIV. Chesney et al. (2003) found that the emotional well-being of older HIV-positive men who have sex with men was more dependent on access to social support than it was for younger men. Shippy and Karpiak (2005) found that 40% of older people living with HIV considered their social support network inadequate because stigma and isolation had disconnected them from traditional informal support networks. In the UK, a comparative multicentre outpatient study found that older people living with HIV reported only slightly higher physical and psychological burden than younger people (Sherr et al. 2009). Meadows, Le Marechal and Catalan (1998) observed that older people living with HIV referred for mental health assessment expressed more worries about social isolation, employment problems and sexual functioning than younger people living with HIV. There has been little in-depth qualitative research exploring the lived experience of ageing with HIV. In research from the USA, Siegal, Raveis and Karus (1998) found that older people living with HIV considered the ageing process to have both advantages, such as increased wisdom, patience and contentment, and disadvantages, including, physical deterioration, social isolation and lack of sympathy from others. Emlet (2006; Emlet, Tozay, and Raveis 2010) found that although many people living with HIV over the age of 50 expressed resilience, the double jeopardy of ageism and HIV stigma produced experiences of discrimination, stereotyping, rejection and social isolation. In a study of a long-running HIV-support group for men who have sex with men in Canada, Robinson et al. (2010, 109) found differences in the experience of ageing between long-term survivors and older men diagnosed with HIV later in life. The long-term survivors often struggled with the interruption of their imagined life trajectory, while also feeling

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confused about surviving so far beyond their expectation when initially diagnosed. They mourned not only friends lost to AIDS but also the lost camaraderie of a community politicised in the early phases of the epidemic. In contrast, those who were diagnosed more recently felt less connected to the struggles of the earlier years and were focused instead on concerns about HIV disclosure, the possibility of a life foreshortened and the physical and emotional burden of starting treatments. Theoretical framework Biographical work For Randell (2002) ageing is a biographical process, which involves a continual storying and restorying of personal experience (55). Narrative inquiry facilitates the exploration of what Corbin and Straus (1988) have called the biographical work of living with chronic illness, for it is through narrative that people rearrange their experience, present their actions for judgement, and come to articulate their situation in the social world (Blaxter 2004, 170). According to Giddens (1991), the maintenance of a sense of ontological security is dependent on a persons ability to keep a particular life narrative going despite the lurking chaos that always threatens to disrupt the progress of everyday life. Burys (1982) notion of biographical disruption conceptualised the experience of chronic illness as an interruption to the anticipated life trajectory, which threatens ontological security and triggers a re-evaluation of self-identity. Adapting to biographical disruption requires the development of cognitive coping processes, a strategic mobilisation of everyday living resources and attention to the presentation of self as someone affected by disease (Bury 1991). However, biographical disruption is not the only effect of chronic illness. For example, research on stroke in older working-class Londoners (Pound, Gompertz, and Ebrahim 1998) found that a stroke event was experienced less as a life shattering moment and more as a biographical continuation of an ageing process in which the person had already grown accustomed to hardship, illness and death. They concluded that it is likely that age mediates the way in which chronic illness is experienced (500) through lowered health expectations and the acquisition of skills over time that enable older people to adapt to health crises. Moral narratives Narrative inquiry identies the experience of chronic illness as an occasion for the demonstration of moral character. According to Blaxter (2004), since disease is often associated with stigma, illness narratives are frequently told as moral tales, in which the individual claims a moral identity and the right to participate as a valued member of society. Bury (2001) contends that moral narratives are told to account for and perhaps justify . . . the altered relations of body, self and society brought about by illness (274). A similar theme is considered in the work of Frank (1997), who observes that illness creates a moral imperative to rise to the occasion in an attempt to be successfully ill. In the moral narratives told by people living with HIV, Crossley (1998) identied a tension between the dependent sick role and the empowered HIV-positive citizen. In addition to a cultural expectation to be successfully ill, social gerontology identies a normative expectation in the discourses of successful ageing (Holstein and Minkler 2003). These concepts provide a framework to begin our narrative inquiry into the lived experience of ageing with HIV.

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G. Owen and J. Catalan

Methodology Research design This exploratory research was designed to gather narratives of the lived experience of ageing in HIV-positive gay men. During 2009, the rst author interviewed 10 Londonbased HIV-positive men who have sex with men, who were over the age of 50. Although mainstream gerontology generally regards older people as being over 65, the literature on ageing HIV populations usually uses age 50 as its inclusion criteria; this is partly related to the historical precedent set by the US Centers for Disease Controls original age stratication of HIV/AIDS (Poindexter and Emlet 2006). According to the Health Protection Agency (2008) men who have sex with men are currently the largest group of older HIV-positive people accessing care in the UK. In this preliminary investigation the main purpose of our sampling strategy was to recruit participants from a range of ages and time since HIV diagnosis. Four participants were diagnosed before the introduction of HAART, three were diagnosed around the moment in 1996 when HAART was rst introduced in the UK and the remaining three were diagnosed after effective treatment had become widely available. We decided that 10 participants was a large enough sample to include a variety of experiences and be manageable for an exploratory pilot investigation. Participants were recruited from an HIV out-patient clinic, a HIV patients forum and a HIV drop-in centre. The study was conducted in accordance with British Sociological Associations (2002) guidelines. The purpose of the study was clearly explained to each participant and signed consent was obtained prior to the interview. We ensured that participants were supported throughout the research process and provision for onward referral was in place. Pseudonyms have been used and identifying information has been omitted to protect condentiality. Participant characteristics are summarised in Table 1. The interviews We adopted a biographical narrative approach (Wengraf 2001) to create space for participants to describe their experience using stories from their personal biographies. This method draws on the idea that in order to understand and explain social and psychological phenomena we have to reconstruct their genesis the process of their creation, reproduction and transformation (Rosenthal 2004, 49). The biographical narrative approach begins with
Table 1. Participant demographics. Age Thierry Steve Carl Nathan James Stuart Gordon Tom Charles Richard 52 53 54 57 57 57 60 61 69 78 Year of diagnosis 1999 1996 1993 1991 1989 2003 1996 1997 1986 2002 Years since diagnosis 10 13 16 18 20 6 13 12 23 7 Employment status FT FT DB DB DB/PT DB FT Ret/DB Ret/DB Ret/PT Relationship status S P S S S S P S S P Ethnicity WO WB WB WO WB WB WB WB BC WB

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Notes: FT full-time paid work, PT part-time paid work, DB disability benets, Ret retired with pension, S single, P partnered, WO white other, WB white British, BC Black Caribbean

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one broad open question and assumes that a persons present situation is constituted by their past and their anticipated future. Participants were asked: Please tell me the story of your experience of getting older as a HIV-positive gay man. The interviewer then asked followup questions to clarify the narrative and encourage a collaborative co-construction of meanings (Gubrium and Hostein 1995). Interviews took between two and ve hours and were digitally recorded, anonymised and fully transcribed. Participants were invited to review their transcript and engage in an ongoing analytic email dialogue, which improved the credibility of our interpretative analysis. Narrative analysis The ageing of the HIV population is a relatively recent phenomenon and our primary intention was to explore issues affecting men who have sex with men as they entered midlife and older age. After several readings of the transcripts by both authors, an inductively derived preliminary coding frame of signicant themes emerged. The computer programme NVivo8 was used to manage the data coding process and to assist in comparing thematic content for consistencies and contradictions across different interviews. Each individual interview was also examined for the overall form in which the participant told their story. Here we focused on the moral concerns underlying the narration and identied the macrostructure of the narratives using the rudimentary types proposed by Gergen and Gergen (1988). For Gergen and Gergen, narratives are used to tell others of ones goals, ones history related to those goals and ones potential future (126) and can therefore be classied according to the direction a life-story takes: progressive narratives of the ageing process tell of circumstances getting better, regressive narratives tell of circumstances getting worse and stable narratives tell of circumstances staying the same. Although cautious of the pitfalls in over-generalisation, this typology was used as a sensitising device to explore the relationship between an individuals personal HIV history and their evaluation of their prospects as an older HIV-positive gay man. Findings Examples of progressive, stable and regressive narratives were identied in the interviews, often melded together through uctuating storylines that charted the history of the HIV epidemic. According to Arber and Ginn (1998) people enter later life with differing expectations and attitudes which have been formed by the extant values and experiences of their early adult years (135). Narrative analysis suggests that attitudes to the prospect of ageing with HIV were particularly inuenced by (1) lived experience of HIV infection on personal health, (2) emotional proximity to AIDS related bereavements and (3) an individuals narrative interpretation of the history of the epidemic. Regressive narratives were characterised by storylines describing biographical disruption and a movement away from valued life objectives. The narratives spoke of being stuck or trapped by past experience of HIV, which had interrupted careers, often leading to dependency on state benets and nancial hardship. They were generally more ambivalent and expressed greater fear and anxiety about the prospect of ageing with HIV. These narratives bore witness to the trauma of multiple AIDS-related bereavements, which had left gaps in social networks and a sense of loss for absent friends and lovers, who should have been companions on the journey to old age. The unexpected burden of so much loss in early adulthood was described by several participants as an experience of premature ageing. The introduction of HAART and the transformation of HIV from

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life-threatening to chronic treatable illness was interpreted as the continuation of an irresolvable life-long struggle with HIV. Regressive narratives were more commonly found in those participants who described close emotional connection to the early epidemic or had been diagnosed in the time when HIV was regarded as a potentially terminal condition. Tom (61) provides an example of a regressive storyline:
So old age was always a fearful future but I protected myself with friends. We were all in it together. But then in the mid-80s they all dropped dead around me. It was as if I had been catapulted from being young to being 70 in the space of a couple of years. . . . So when I look to the future I dont see much. Im very concerned about being old on my own in a big city without the support and structure that used to be in the HIV world. . . . I think when they downgraded HIV from being a terminal condition to a chronic condition and everyone kind of packed up their briefcases and moved onto the next cause, thats when I felt really lost. Now I cant understand my life situation, because this isnt how I planned it because AIDS took the plans away and left me in a world I hadnt expected to be in and I dont know how to resolve that.

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Progressive narratives were characterised by storylines that told of an individuals movement towards valued life objectives. Living with HIV tended to be dened by a normalising discourse of HIV as just a chronic treatable illness. These narratives contained fewer anxieties about the prospect of ageing and demonstrated an orientation to the present rather than the past. The transformation of HIV by HAART was interpreted as an opportunity to proceed with a normal life course towards old age. Progressive narratives were more commonly found in those whose working lives had not been interrupted by illness or multiple AIDS-related bereavements. These participants had generally been diagnosed after the introduction of HAART, were less dependent on state benets and described social networks that were not organised around HIV support services. Steve (53) provides an example of a progressive storyline:
We never expected this to happen. Perhaps thats one reason why I hadnt thought a great deal about getting older and I still think, in a way, Im not going to get old. I dont think my minds in any kind of different state than it would have been if I hadnt had HIV, I dont think it really makes any difference other than having made me sort of evaluate what Im getting out of life. But it certainly doesnt make me worry about what I might face in the future. . . . I think at the time we didnt realise what a miracle it [HAART] was, but looking back it is absolutely a miracle. . . . And I suppose what I am trying to say is that from then on Ive felt very optimistic.

With these narrative forms in mind we (1) develop an examination of the lived experience of ageing with HIV, (2) consider how the narratives are used to construct identities in relation to a moral imperative to age well with HIV and (3) explore the possibility of building supportive communities which are sensitive to the needs of older HIV-positive gay men.

The lived experience of ageing with HIV Uncertainty has always been part of the experience of living with HIV (Brashers et al. 1999). In the early history of the epidemic, the life-threatening potential of HIV was the source of most uncertainly, but since the success of HAART the experience of uncertainty has instead become associated with anxieties about the effect of HIV on the normal ageing process. For example, Gordon asked his doctor:
Am I feeling tired because Ive got HIV, or because of the side-effects of the drugs, or because of type 2 diabetes, or because of a stressful job or is it because I am 60?

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Nathan spoke of nebulous issues that made it difcult to know: whether they are issues that are specically HIV-related or just related to ageing. Those who became more personally involved with HIV after the introduction of HAART, spoke about coping with these uncertainties using a temporal orientation of living with a philosophy of the present, which Davies (1997) identies in her research on long-term HIV-positivity as an effective adaptive strategy for living with uncertainty. For instance, Stuart said that he tries not to think about the future too much because it will come and Ill cope with it as it comes, and if theres a problem the clinic staff will ring me, so as far as I am concerned everything is ne until Im told its not. And Steve (53) comments:
I live very much for the present and that may be part of adjusting to living with HIV. I tend not to think too much about what Im going to do in the future. I kind of talk about what Im going to do with people, my friends, and what Id like to aspire to in terms of future lifestyle, but I dont think about it in terms of what Im going to do when I get old and need care.

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Thierry (52) expresses his orientation to the present and describes how HIV is normalised as just background noise to the process of ageing:
I cant say I think that far ahead, what might or might not happen in the next 5 or 10 years time. People really do work themselves into mental disorders about it. I think Ive enough to worry about in the present . . . I think there are issues around ageing but for me theyre not HIV-specic. HIV is just part of the mix but its not a particularly important part of the mix because its not a particularly difcult condition to deal with. So its in there but sort of just background noise really.

Although all participants demonstrated resilience to the challenges of ageing with HIV, those with more personal experience of the early epidemic were more likely to express ambivalence and weariness to the ongoing uncertainties of living with HIV for the rest of their lives. James (57) traces this ambivalence back to the HAART moment when HIV ceased to be a life-threatening condition:
That was dening, not great joy, it was fear, because Id already accepted thats how it was. Then all of a sudden it was like, well, theres hope now and youre improving. And it was awful and really hard because I couldnt get my head round it for a long time because I didnt know who I was supposed to be now. . . . I havent told anybody this, but sometimes I feel disappointed that my HIV hasnt moved on. Its not wishing to be unwell, its thinking, oh God, here we go again, it goes on and on, and every day the pills, for ever and ever.

The regressive slope of Carls (54) narrative expresses feelings of hopelessness about the prospects of ageing with HIV:
So hows it going to get any better? Its not, its just not. And I cant even seem to get it just to stand still. It kind of feels it goes backwards and thats with health, nances, relationships, with everything.

The post-HAART struggle to plan for the unexpected prospect of old age is described by Charles (69):
So it wasnt an easy process, coming to terms with the fact that youve got to start thinking about your future again when you felt previously it had been closed off to you. And its thrown a lot of people into a tail spin. . . . Its almost like you missed opportunities to make the best plans for future old age. . . . And the other thing is, youve got to give yourself reasons for going on because the paradox here is that while youve been given the means of living on, in a lot of cases, the reasons, the rationale, has been taken away.

Several participants reported nding it difcult to recover from the biographical disruptions of the early epidemic. For some who lived through HIV as a life-threatening illness, the experience of ageing seems shaped by a sense of regret and irreconcilable loss.

G. Owen and J. Catalan

Nathan (57) describes an experience of premature ageing when his friends died leaving a signicant gap in his social network:
I think its relatively unusual to have lost a large group of friends when youre in your 40s, all within the space of ve or six years. So that has had a big impact on me. It stopped me from developing those relationships, so theres not enough people I can enjoy being a grumpy old man with.

Similarly, Carl (54) reminds us that many older gay men have endured multiple bereavements which have left social networks damaged and difcult to repair: I dont have a circle of friends like I used to. They all went, all of them. I never replaced them. By contrast, Thierry (52) spoke of a different relationship to the trauma of the early epidemic:
I missed the worst of it because I was living away, coming back and forth, but not really being very involved. And even though I knew those who died, I missed their deaths. I didnt see them die. And then when I actually became positive it was very late and treatments already existed. So youll have a group of people who went through the whole HIV thing with the discovery and all the deaths and political stuff, and then theres the post-treatment generation who have a different view and completely different needs.

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And Richard (78) points out: Ive been very fortunate. I havent lost any friends at all, partly because I dont mix in gay circles, so Im not aware of any friends lost to HIV. As these stories highlight, understanding individual experience of ageing with HIV requires exploration of a persons relationship to the history of the HIV epidemic: the biographical disruptions of multiple loss and past trauma can undermine resilience to the uncertain process of ageing with HIV. Moral identities and successful ageing Narratives about illness are always told with a purpose (Frank 1997) and in the discursive space offered by the biographical interview method, participants constructed moral identities in relation to circulating discourses about successful ageing and living with HIV. Participants typically sought to position themselves as empowered, independent people living with HIV. However, it was noticeable that participants found this moral narrative more difcult to sustain where their life trajectories had been diverted from the traditional life-course by careers interrupted through illness and dependence on social security benets. These emotive moral tales emerged as progressive-regressive tensions in the narrative macrostructures of the interviews. For instance, in drawing a comparison with people who had been more recently diagnosed, Carl (54) was concerned that his painful experience of going backwards should be understood as a consequence of his traumatic experience of HIV-related losses:
They [recently diagnosed] are coming in with psychological armour undented so they can go to work and have as normal a life as possible. . . . But can I get any kind of life back now? As hard as I try to keep it together Im not getting any younger. Money isnt going to come in to wipe out the debts. I know everyone is feeling it, but Im not even standing still anymore, Im going backwards because there is no way out of anything.

Despite feeling trapped by the disadvantages of his situation, Carl demonstrates his continued engagement with the moral identity work of trying to keep it together but feels that his sense of self-efcacy has been compromised. By contrast, Stuarts (57) narrative suggests a progressive engagement with the ageing process:
In Chicago, there is that great line, Im older than I ever thought I would be which is a great truism. As a kid I worked on the basis that every time you had a birthday your biological clock

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ticked you up one year, so you became older and more sensible. But it doesnt work like that, the youth stays inside and the outside ages. If you want to be an old person then be an old person but thats just tting into what society dictates you should be.

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Stuart demonstrates self-efcacy and claims the right to dene his own narrative of successful ageing in opposition to other narratives of decline. Ong and Bergeman (2004) argue that belief in self-efcacy is a key component of resilience and therefore has a positive impact on the long-term health and well-being of older people. A recent UK national survey undertaken by Power, Bell and Freemantle (2010) found that for people living with HIV over the age of 50, nancial security was the most concerning aspect of ageing. Financial security similarly emerged as a prominent theme in this study, particularly in relation to moral concerns about dependency on state benets and being valued as productive contributors to society. For instance, Gordon (60) considered that his strong nancial position and the independence which comes with that contributed to his relatively positive attitude to ageing with HIV. However, participants diagnosed in the pre-HAART era were more likely to be dependent on disability benets and expressed considerable anxiety about being caught in a social security benet trap. Nathan (57) explains:
Right now my biggest anxiety is to do with nance and the whole issue of keeping a roof over my head.

There was a noticeable moral positioning around work and benet dependency. For example, James (57) expressed fear and guilt about claiming the disability benets that he depends on for nancial security:
I mean, I couldnt do a full-time job now. I know I couldnt do that. And theres this tension you are terried youre going to lose Disability Living Allowance and there is this guilt thing for claiming benets as well.

According to Prince (2008) claiming a disability benet is a contested eld in which the social citizenship of claimants are positioned between passive victims living in the kingdom of the sick and deserving beneciaries of state support (30). This tension is mirrored in the moment when the dominant discourse of HIV as a life-threatening crisis was to some extent normalised by the success of HAART, to HIV as just a chronic treatable illness. As a consequence, society now requires the person with HIV to abandon the sick role. This has been a difcult transition for some, particularly those long-term survivors who experienced signicant losses and trauma in the earlier phases of the epidemic. Research on the stigmatisation of HIV within gay communities reported that older and longer diagnosed positive men were described as being situated at the lowest rung of a contemporary Gay social hierarchy which resented and rejected those who were classed as dependent on the state (Dodds 2006, 447). These tensions were replicated in our sample, as illustrated by this comment from Thierry (52, diagnosed in the post-HAART era):
I know some people whove made themselves into real victims. And theyre on benets and its their whole life. As soon as they were diagnosed they stopped working, they went on all the benets they could, almost with relish because at one point you could get quite a lot. Very nice thank you very much for the British taxpayer [laughs]. Im sure its not like that anymore.

The effect of the stigmatisation of benet dependency was painfully expressed by Carl (54, diagnosed in the pre-HAART era):
Everybody makes you feel guilty for everything [in tears]. They make you feel guilty about wanting hospital appointments, make you feel guilty because you dont have a GP, make you feel guilty because you wont t in the box, feel guilty about benets. And as part of the guilt process you think, well, could I go back to work, am I being pathetic? But [my attempt] last year taught me that, no, I couldnt.

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Many people living with HIV were advised to give up work and claim disability benets in readiness for life-threatening illnesses that were subsequently deferred by HAART. These moral narratives suggest that, feeling stigmatised and with psychological armour dented, some older gay men are struggling to construct positive identities as they face the uncertain challenge of ageing with HIV. Building supportive communities The possibility of building communities of mutual support to protect against social isolation in older age emerged as a recurring theme in this study. While maintaining social networks is an issue for many older people, these narratives suggest some additional factors that affect the social networks of older HIV-positive gay men and particularly those with longer histories of living with HIV. This study has already highlighted how multiple AIDS-related bereavements have damaged the social networks of some gay men. Several participants also mentioned an additional fear of loneliness in relation to being single and removed from the workforce before the usual retirement age. Nathan (57) explains:
I do feel quite isolated especially since I dont get out and about to meet people very often now. One of the impacts of not working is you dont interact with people on a regular basis.

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Others talked about feeling increasingly invisible in the generally youth-orientated spaces of the commercial gay scene, as described by Tom (61):
I think the gay scene was always very much about youth and beauty . . . and suddenly you nd yourself as an older gay man quite invisible.

Some participants noted that sexual interactions traditionally play an important role in building social networks in gay cultural life. Therefore, as Charles (69) explains, loss of libido in the ageing process can bring a sense of social isolation for some older gay men:
As a gay man, my primary mode of meeting people and consequently forming friendships has been through sex. Without a partner, I fear the loneliness of old age and then you hear the whistle as the train with your libido departs and there really is nothing much you can do!

Diverse social groups, both within and beyond gay cultural life, were valued by participants as important sources of mutual support. Most participants had histories of involvement as volunteers in HIV community organisations and some regretted that many of the communities of HIV support that formed in response to the early AIDS crisis had dissolved after HIV became a chronic treatable illness. James (57) remembers a community where people pulled together even though we were unwell, which was wonderful but its not like that now. For some, there was an underlying concern to build communities to support older HIVpositive men and afrm non-heterosexual identities in later life. Several thought that older peoples sexual identities were assumed to be unimportant in health and social care policy. For example, Tom (61) ponders the implications of being a single gay man who might need residential care in later life:
But should the day come when I need a nursing home, how am I going to t in as an openly gay man? Because my generation is probably the rst to be openly gay, who is going to understand my life reminiscences?

With his long history of activism and voluntary HIV community service, Tom calls for the renewal of grassroots communities that can respond creatively to the challenges of social isolation for gay men in later life:
The older positive gay men I know are living on their own, not in a relationship, and pretty fearful for the future. One thing which would reduce my anxiety about getting older is getting

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into a supportive community. Obviously a bit of the old hippie in me and a kind of romantic idea maybe, but a big rambling house with a nice big kitchen and a place where we can eat together but have our own areas too.

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These narratives highlight that many older HIV-positive gay men lack social support networks to provide care in later life and a concern that older peoples care services might not positively afrm gay sexual identities. Concluding remarks Every person ages differently and the main nding of this exploratory study is an illustration of how the experience of growing older with HIV is inuenced by an individuals biographic relationship to the history of the epidemic. Attitudes to ageing were particularly inuenced by (1) the lived experience of HIV on personal health, (2) emotional proximity to AIDSrelated bereavements and (3) an individuals narrative interpretation of the history of the epidemic. In using Gergen and Gergens (1988) typology of narrative macrostructures as a sensitising device, we do not suggest that all gay men diagnosed in the pre-HAART era, or those with long histories of emotional involvement with the early epidemic, necessarily frame their experience of ageing with regressive storylines. However, our ndings suggest that some gay men, particularly those diagnosed in the pre-HAART era, can experience greater adjustment challenges to growing older with HIV than those diagnosed after HAART had transformed HIV to a chronic treatable illness. While the narratives of those diagnosed in the post-HAART era tended to demonstrate continued progression towards valued life goals, the narratives of those with longer HIV histories expressed a sense of loss and more ambivalence about their prospects as older HIV-positive gay men. With careers interrupted by illness, dependency on state benets and social networks damaged by multiple AIDS-related bereavements, this cohort are more likely to be entering old age with compromised economic and social resources. Following Arber and Ginn (1998) we need to be sensitive to the relationship between structural inequalities and health among older people, in particular how material and social resources in later life . . . have been fashioned by earlier phases of their personal biography (151). Those economically disadvantaged by HIV need access to nancial advice to maximise economic resources in mid-life before entering retirement. Although many older gay men are integrated in diverse and well developed social networks, which provide support together with friendship and recreation opportunities, our ndings suggest that some HIV-positive gay men become increasingly socially isolated as they grow older, raising the question of how to support gay men entering later life. The Ofce of National Statistics (2005) reports that never-married older men are more likely to enter institutional care because they lack a spouse or children who could care for them. The need for residential and domiciliary care could become a signicant issue for HIVpositive gay men whose social networks have been most damaged by multiple bereavements. Participants in this study also raised concerns that older peoples care services would not positively afrm gay sexual identities. Polices for the future care of older gay men need to go beyond the heterosexual assumption (Heaphy and Kip 2006) and ensure that non-traditional lifestyles and identities are positively supported. We also explored the moral identity work involved in ageing with HIV. Tensions were found in the positioning of participants in relation to notions of HIV as just a chronic treatable illness and narratives of successful ageing, which typically emphasis resilience, independence and positive engagement with life. Some participants who had lived through HIV as a life-threatening disease felt that their traumatic life experience was being devalued

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and forgotten and some felt stigmatised for their consequent dependence on welfare benets. Whereas previous research has noted the phenomenon of survivor guilt in people living with HIV (Brashers et al. 1999), the expression of guilt by participants in this study was more commonly associated to the stigmatisation of dependency on welfare benets. Andrews (2009) argues that we need to hear multiple narratives to assist us in building our own models of successful ageing (81). With the dominant discourse of ageing well with HIV tied to its post-HAART transformation to just a chronic treatable illness, it is important that we continue to listen to more ambivalent narratives like Toms (61) that remind us of the traumatic history of the epidemic:
You cant talk about that ambivalence to most people; they dont want to hear. You keep those feelings to yourself because people say things like, Oh youve got to embrace life: you must ght on and relish life. And I do to a degree, but the memories of the life that was, compared to the life that is, makes it hard to embrace the present. . . . And theres only some of us left who have the complete story of what happened this precious story and it has to be remembered because it was unbelievable. . . . And, yeah, I feel I am the one who has been left to turn the light out at the end of the party.

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Providing opportunities to re-tell the AIDS story creates possibilities for posttraumatic growth (Neimeyer 2005) and afrming the connection between who one is in older age and who one has been in the years leading up to that time will help people living with HIV preserve a sense that this challenging journey is worthwhile. Although limited by location and sample size, this study provides some insights into the emerging phenomenon of an ageing HIV-positive population. The ndings suggest that future research should include cohorts based on biographic categories such as time since diagnosis rather than chronological age divisions alone. Research comparing the experience of ageing in HIV-positive and HIV-negative populations is also indicated.

Acknowledgements
Firstly, we thank all the participants who shared their stories and helped with the interpretation of our ndings. Special thanks are due to Robin Wright, Mythili Jayasundaram and the Chelsea and Westminster HIV-positive patients forum for helping with research design and to Nick Groves for editing and commenting on earlier drafts of the paper. We thank Susan Lumb for transcribing the interviews. Dedicated to the memory of Jim Smith.

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Resume
La proportion des personnes seropositives au VIH de plus de 50 ans augmente rapidement au Royaume-Uni. Cette situation est le reet de lutilisation des therapies antiretrovirales et de la ` ` transformation de la maladie mortelle due a linfection a VIH en maladie chronique pouvant etre traitee. Pour cette etude, la methode biographique a ete employee an dexplorer lexperience du ` vieillissement chez 10 hommes gays seropositifs au VIH, ages de 50 a 78 ans. Alors que certains de ces hommes consideraient le vieillissement comme une occasion de progresser vers des objectifs ` quils valorisaient, dautres etaient plus ambigus quant a leurs futures perspectives. Les resultats ` suggerent que ces differences dependent beaucoup du positionnement de chacun des participants par ` ` rapport a lhistoire de lepidemie, plutot que par rapport a leur age chronologique. Ceux qui avaient ` vecu le plus longtemps avec le VIH etaient les plus susceptibles detre defavorises carrieres ` interrompues par la maladie, dependance vis-a-vis des aides sociales et davoir des reseaux sociaux deteriores par de nombreuses pertes dues au VIH. Cette recherche identie une cohorte dhommes gays en train de vieillir et susceptibles de necessiter plus de soutien pour sadapter au de que represente ce vieillissement avec le VIH. Larticle explore aussi la construction des identites morales liees au discours sur le vieillissement heureux et la possibilite de construire des communautes de soutien, sensibles aux besoins de hommes gays vieillissant.

Resumen
El porcentaje de personas seropositivas de mas de 50 anos esta aumentando con rapidez en el Reino Unido. Esto reeja el uso de tratamientos con antirretrovirales y el cambio del VIH de ser una enfermedad potencialmente mortal a ser una enfermedad cronica tratable. En este estudio utilizamos un enfoque narrativo biograco para analizar la experiencia acumulada al envejecer de 10 hombres gais seropositivos con edades comprendidas entre 50 y 78 anos. Si bien algunos participantes consideraban que envejecer era una oportunidad para continuar progresando hacia objetivos valiosos en la vida, otros eran mas ambivalentes sobre sus perspectivas de futuro. Los resultados indican que estas diferencias estaban inuenciadas sobre todo por la relacion biograca de cada persona con la historia de la epidemia del VIH mas que por la edad cronologica. Los que arrastraban un largo historial con el VIH tenan mas probabilidad de sufrir desventajas debido a interrupciones profesionales por la enfermedad, dependencia de prestaciones sociales y redes sociales danadas a causa de muertes relacionadas con el sida. Identicamos una cohorte de hombres gais mayores que probablemente necesitaran ayuda adicional para adaptarse al reto de envejecer siendo seropositivos. Tambien estudiamos la construccion de las identidades morales con relacion a los discursos de envejecer bien y la posibilidad de crear comunidades de apoyo adecuadas a las necesidades de hombres homosexuales de edad madura.

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