We Are Still Here: Living with HIV in the UK

ABSTRACT

In this article we highlight a number of the ongoing challenges faced by people living with HIV in the UK today (2021). Based on in-depth interviews with 23 respondents drawn from a range of ages, backgrounds and walks of life, we offer an insight into deeply personal experiences of what it means to have HIV. We demonstrate the degree to which, 40 years on from the formal emergence of the HIV pandemic, stigma and related structural violence remain both extremely present and extraordinarily debilitating. In essence, social responses to HIV remain mired in a past age.

KEYWORDS:

• AIDS
• discrimination
• exclusion
• HIV
• stigma
• UK

In the midst of COVID-19, we felt it prescient to revisit a pandemic that has fallen, somewhat, from the social radar. HIV and AIDS continue to affect approximately 38 million people worldwide. In the UK, over 100,000 (National AIDS Trust 2022) people continue to live with HIV, surrounded by optimistic headlines and initiatives – “the end of AIDS,” “fast-track to an AIDS-free generation,” “getting to zero,” “90-90-90” – a far cry from the 1980s and early 1990s when, for most people across the world, an HIV-positive diagnosis represented a death sentence, and was promulgated as such. “Don’t die of ignorance” was the UK government advice during the 1980s, spelled out in public service announcements against the backdrop of a tombstone. In the intervening decades, advances in treatment, including the mass rollout of antiretrovirals (ARVs), have resulted in HIV becoming a “manageable” condition, much the same – as the cliché suggests – as living with diabetes. In the UK television series It’s a Sin (2021), and in films like Pride (2014), HIV and AIDS are set in the past, and the negativity surrounding living with HIV in the UK might also be understood to be of the past. The reality is very different: general perceptions of HIV and AIDS have not kept pace with medical developments. All too frequently, responses directed at those living with HIV in the UK continue to tap into the fear and ignorance of the “AIDS as a death sentence” mentality that emerged during the early days of the pandemic.

This article is based on lived experiences and recollections; it captures voices of people living with HIV in the UK today. By providing a platform for their accounts, we look to appreciate some of the contemporary realities of life with HIV. It is both a (sometimes historical) record of people’s journeys with HIV, and a social commentary on (un)changing perceptions of the virus in the UK. The key “take away” is that while medical advances mean that we can render the virus undetectable in the blood, and therefore non-transmittable (HIV-neutral), the social impact of living with HIV remains profound. What our research shows is that the lives of HIV-positive and -neutral people continue to be defined to a significant extent – both by others and also by themselves – by their HIV status. Importantly, we show that stigma and discrimination continue to impact profoundly on the lives of people living with HIV, and that associated structural violence is both reproduced and reinforced by the everyday injustices experienced by this community.

Methodology

Our 23 respondents were recruited through a mixture of personal and professional networks and snowball sampling, including through a number of HIV and AIDS charities and advocacy groups that served as gatekeepers. While by no means a “scientifically” determined sample, we strove to capture as a diverse a range of voices as possible. Respondents ranged in age from their early 70s to their mid-20s. In keeping with UK HIV demographic trends more generally, the majority were men; we also interviewed five women and one person who identified as trans or non-binary. For context, in 2019, there were an estimated 105,200 people living with HIV in the UK. Of the 98,552 people accessing HIV-related healthcare in 2018, approximately 70% were male, 30% were female, and 0.15% trans. In terms of ethnicity, Public Health England hospital data indicate that nearly 55% of those accessing care were White and nearly 30% were Black African. The largest cohort in terms of age was the group aged 35–49 (nearly 37%), followed by those aged 25–34 (just over 30%), and then those aged 50–64 (nearly 19%). Regarding transmission, 46.4% acquired HIV through sex between men, while 46.1% acquired HIV through heterosexual contact (National AIDS Trust 2022). While some of our respondents were clear about their sexuality, they were not specifically requested to disclose this. Again, in keeping with wider UK HIV demographic trends, while the majority of respondents were White, some were drawn from ethnic minority backgrounds and immigrant communities (heritage did not explicitly form part of the interview questions). Socioeconomic backgrounds and educational and professional experiences were, again, mixed: our sample included a priest, a homemaker, a lawyer, two teachers, a writer, an actor, a chef, and a seaman, as well as a number of retirees. The sample also represents a rich variety of experiences, some gained over the course of decades of living with HIV – one respondent was diagnosed in 1982, another in 1989, and five others were diagnosed in the 1990s. Three respondents were in long-term relationships with partners who were also HIV-positive. Geographically, in keeping with our networking and snowball sampling approach, our respondents hailed from a range of disparate locales, with interviews having taken place in Bristol, Cardiff, Cornwall, Hampshire, Hull, Leeds, London, Manchester, and Sheffield. Many of the respondents, being activists within the HIV and AIDS community (some very prominently so), were self-selecting. In this sense, many – although not all – of those who took part in the project were relatively public about their HIV status. We struggled, unsurprisingly, to attract many respondents from communities in which disclosure is accompanied by risks. Accordingly, diverse as our respondents were, we do not claim that the experiences we present here are fully representative of those of the wider UK HIV and AIDS community; not all people experience HIV in the same way, whether it be physically, socially, or economically (Whyte 2009).

The interviews took place between October 2020 and September 2021. The issue of trust, supported in part by the lived experiences of one of the authors of this article, themselves living with HIV, was central to establishing a rapport with our respondents.¹ Also in the interests of ensuring that our respondents felt as comfortable as possible, contributors were primarily interviewed in their own homes, although at times COVID-19 made this unfeasible. The accounts were captured through in-depth semi-structured interviews lasting from 30 to 120 minutes. The interviews sought to capture the realities of living with HIV in the UK; we asked our respondents to reflect on their experiences of stigma and exclusion, how living with HIV affected their relationships (both intimate and non-intimate), their mental health, and how living with HIV has shaped their sense of self. We also asked our respondents to reflect on their coping mechanisms, and how they have navigated the insecurity and social dangers posed by their HIV status; in particular, we were interested in where they went to feel safe and where they sought refuge from discrimination.

While the interviewers made use of a basic template, we strove for an inductive rather than deductive approach, making space for more deeply personal recollections of feelings and perceptions. We left each respondent to determine the level of detail they wished to share with us. The interviews were recorded, subsequently transcribed verbatim, and then coded. We searched for themes emerging from both within individual interviews and across the sample. Where common themes emerged across individual interviews, we took these as indicative of shared understandings and experiences. In all cases, we looked to invite respondents to speak for themselves, hence our emphasis on quoting from the transcripts. The extracts shared below were included because they were representative of, or best encapsulated, recurrent themes. The resulting data provide insights into past and, in some instances, ongoing challenges faced by people living with HIV in the UK. The identities of all respondents have been anonymized.

“I’m still here:” Biomedical normalization, social exceptionalism

What struck those of our respondents who have been living with HIV for decades (Keith received his diagnosis in 1982, Rob in 1989, Leo in 1995, Heather in 1996, Louis in 1996, and Olivia in 1999) was the fact that they “are still here” (a phrase used by a number of our older respondents). For these respondents, who watched friends and loved ones die from AIDS-related illnesses, the wonder was that they themselves remained alive and healthy. For Rob, who has been living with HIV for over thirty years, the surprise was still palpable:

I was diagnosed in 1989 with HIV, so it was very different. At that time … you were told you were going to die quite soon, and many people did … and after eight years I was deeply in debt because I thought I wouldn’t be around to have to pay it back!

Equally, Keith, our oldest respondent, having lived with HIV for 40 years, continued to express shock that he was alive at all: “I mean, I have been amazingly fortunate in terms of what HIV has dealt to me, yeah, ’cause God I’m 71 now. And I’m still here.” In the early days of the pandemic, the goal was, quite simply, survival.

Advances in treatment mean that HIV has become a chronic condition, with the result that we have moved from the “age of AIDS” to the “age of treatment” (Moyer 2015). For those diagnosed post-1990s, living with HIV was supposed to be less fraught. By the 2000s, biomedical practitioners, policymakers and activists had widely assumed that the very demonstrable impact of treatment would result in the “normalization” of HIV (Castro and Farmer 2005; McGrath et al. 2014; Walker 2019). In turn, the “normalisation” of HIV was supposed to allow those living with HIV to concentrate on living a “good life,” focusing on relationships, family, and careers (Mazanderani and Paparini 2015; Moyer 2015). There was an expectation that “not dying” would automatically result in an “improved quality of life” (Walker 2019). However, as a deviation from “living normally,” any chronic illness can, regardless of effective treatment, result in an erosion of self-identity (Charmaz 1983; Russell et al. 2007), meaning that new identities need to be constructed if chronic illnesses are to be incorporated sustainably into people’s lives. As Siegel and Lekas (2002:S72) argue, “the diagnosis of a chronic illness typically necessitates identity work.” In the case of people living with HIV, successfully overcoming the “biographical disruption” (Bury 1982:169) engendered by a positive diagnosis can be especially difficult, because while HIV has become “normalized” biomedically, it remains socially “exceptional” (Mazanderani and Paparini 2015). Twenty-first century treatments notwithstanding, public opinion remains rooted in the twentieth century (Moyer 2015). As our respondents made clear, the narrative established in the early days of the pandemic (see for example Herdt 1987), in which AIDS was framed as a punishment for “immoral” and “risky” behaviors, continues to be deeply embedded, despite concerted efforts by activists and advocates to overturn these perceptions.

Nearly 35 years later, the shadow of the 1986–87 “tombstone campaign” (“AIDS: Don’t Die of Ignorance”) lingers on. Rob, who was diagnosed with HIV in 1989, recalled the lasting effects of the “Don’t Die of Ignorance” message:

People who are old enough to remember the well-known tombstone adverts … that’s when they got their knowledge and information about HIV and because they don’t think it’s relevant to them, their knowledge hasn’t changed, their perception hasn’t changed.

The campaign, a public health promotion by the UK government, was designed to promote mass awareness of AIDS by stressing its lethality (the defining image was of a falling tombstone with “AIDS” inscribed on its face). The campaign incorporated television broadcasts, with accompanying leaflets being sent to every home in the UK. While the campaign succeeded in generating much-needed awareness at the time, it also generated a lasting fear and suspicion of people who contracted HIV (Hedge et al. 2021). As George, diagnosed in 2003, observed: “Even people that weren’t alive at the time know about the crashing tombstones.” While causation is difficult to demonstrate, there is no doubt that the campaign coincided with a surge in homophobia driven by UK tabloid newspapers like The Sun, which argued for the outlawing of homosexuality and mentioned chemical castration for HIV-positive people (Burgess 2017). In 1988, the UK government passed Section 28 of the Local Government Act, which included the prevention of the “promotion of homosexuality” in schools (Section 28 remained in place until 2003 in England and Wales).

Stigma, mental health, and coming to terms with HIV

As with Keith, diagnosed in 1982, some of our older respondents had, over time, largely made peace with HIV and tended to be more at ease with their status: “Well, I choose who I tell, and I tell most people. So, I’m comfortable. Well, I should be after all these years.” Some of our younger respondents, particularly those more recently diagnosed, were less accepting of their status: “I don’t want to upset myself, but there is nights when I, when I sit alone and when I cry thinking about … “Why me?”” (Jakub, diagnosed in 2016). At the same time, all of our respondents struggled, at some point, to adapt to their “new identities” as people living with HIV, with much of their difficulties stemming from ongoing concerns surrounding stigma.

A stigma survey published in 2015 demonstrated that, for many living with HIV in the UK, positive status continues to represent a barrier (perceived or otherwise) to social inclusion. In the survey, respondents living with HIV reported a fear of salacious gossip, rejection by potential romantic partners and family members, job insecurity, harassment, and even physical violence (Stigma Survey UK 2015). The survey showed that stigmatization is often internalized: those affected judge themselves on the basis of their own socialized understandings of the virus. Evidence from around the world shows that HIV-related internalized stigma is extremely debilitating (Pantelic et al. 2019). It can lead to feelings of guilt, shame, and extremely poor self-esteem, and tends to be most prevalent in those more recently diagnosed. Our respondents listed self-stigmatisation as one of the worst aspects of living with HIV, and as a defining issue where forging a post-diagnosis identity has been concerned. Louis, diagnosed in 1996, and reflecting on nearly 25 years of living with HIV, noted that: “the worst stigma that I ever experienced was self-inflicted.” Self-stigmatisation was often exacerbated due to self-imposed isolation and many of our respondents talked of withdrawing into themselves, cutting themselves off from friends and family, and avoiding relationships. George, diagnosed in 2003, highlighted how he retreated from the world after his diagnosis:

I can only describe the next ten years as almost like I went into hiding. I wasn’t completely in hiding, but didn’t go out anymore, didn’t see that many people. Didn’t tell anybody. Didn’t tell anybody at all.

People living with HIV can often suffer from poor mental health – in terms of depression, people living with HIV are twice as likely to suffer from associated symptoms as those in the general population (Lampe 2022). Nearly 20% of respondents in the stigma survey reported suicidal thoughts as a result of their diagnosis (Stigma Survey UK 2015). In a study covering England and Wales, suicide rates amongst men living with HIV were found to be twice that of the general male population, with the majority of instances occurring within the first 12 months of a diagnosis (Croxford et al. 2017). Our interviews are in step with this data. It was evident that the impact of being diagnosed as HIV-positive had a profound effect on the mental health of a number of our respondents, with some having been driven to either consider or attempt suicide. Scott, who was diagnosed in 2007, outlined the sense of despair and helplessness common to many of our respondents on learning of their status:

I got into a very dark place and, y’know … and, y’know, looked for all the escapism that people do, the drink, the drugs. Twice I tried to … I don’t even know if it was a half, half-hearted suicide attempt, I just was done and was looking for the ultimate escape route.

Internalized stigmatization does not, of course, necessarily equate to direct social discrimination. It does nonetheless represent a form of structural violence underpinned by wider sociocultural constructions. Despite ongoing comparisons with other chronic conditions “like diabetes,” HIV remains, for many, a “master status” (Goffman 1963), in which people’s wider lives are defined by their diagnosis (in a way that diabetes, for instance, tends not to be). “Master status” denotes an all-defining label that shapes society’s reactions to and expectations of an individual. More generalized examples include those of sex, race, ethnicity, age, and economic status. The term is also used to allude to a specific – usually perceived to be negative – characteristic that morphs into an all-encompassing identity: sex offender; gambler; drug addict; ex-convict; alcoholic. A “master status” often results in stigmatisation and defines a labeled individual’s role in society. For Goffman (1963)², stigmatisation arises from the sense that an individual possesses an attribute that is perceived to be “discrediting,” placing them outside of what is viewed as “normal” or “desirable.” Goffman (1963) argued that when stigmatisation becomes entrenched, the result is a “spoiled identity,” meaning that society will “permanently” view a labelled individual in a negative light, regardless of any other “redeeming” features. A classic example of a “spoiled identity” is that of an ex-convict, doomed to be viewed with suspicion for the remainder of their lives, regardless of any subsequent achievements. Individuals stigmatized in this way are viewed, essentially, as deviants and, consequently, not full members of society. The result is that behaviors that would be unremarkable in an individual outside the “deviant” group are, for an individual within the group, often filtered and understood through the lens of the “master status” and interpreted accordingly.

Manifestations of illness and disease have long been sources of “spoiled identity;” biblical accounts of “the leper” continue to shape the Judeo-Christian imagination (Chace 2019). That leprosy remains a source of stigma is indicative of just how entrenched attitudes to illness and disease can become once rooted (De Groot et al. 2011; Staples 2004). Sexual transmission adds a further layer, as with syphilis in Europe, which rapidly came to be associated with the “sins of venery” and “loose women” (cited in Parascandola 2008, 8). Social Darwinism and the accompanying emergence of eugenics added additional “culpability” to issues of transmission; levels of syphilis transmission across sub-Saharan Africa in the early twentieth century – the result of European colonial interventions and disruptions – were used subsequently by Europeans as “proof” of the “bestial” nature of African people (Flint and Hewitt 2015; Vaughan 1991). Against this background, it was perhaps inevitable that HIV and AIDS, with their initial connections to gay communities and intravenous drug users, provided fertile ground for “spoiled identities;” as Songwathana and Manderson (2001, 3) put it, “the stigma attached to AIDS built upon preexisting stigmas.” The intersection of multiple “deviant” master statuses has been one of the many tragedies of the HIV pandemic. The infamous “4-Hs” (hemophiliacs, homosexuals, heroin users, and Haitians), defined in the early 1980s as being key “at risk” groups in the US, created a platform for long term stigmatization in which haemophiliacs alone were viewed as “innocent” – although, as the treatment of teenage hemophilic Ryan White demonstrated, even the “innocent” experienced extreme levels of stigmatisation (Institute of Medicine 2005).

“Identity work,” for people living with HIV, involves, to a quite considerable extent, managing perceived “spoiled identities” (Horter et al. 2020) and making peace with “viral identities” (Flowers et al. 2006). In the early 2000s, HIV activists and campaigners, building on identity politics gains, sought to inject a sense of “positive living” into evolving HIV narratives (Benton et al. 2017; McGrath et al. 2014). A significant aspect of this approach involved focussing on “positivity” more generally while specifically embracing the idea of HIV as a positive force within the lives of affected individuals; as Benton (2015:94) puts it, “definitions of what it means to live positively have consistently referred to hope, empowerment, support, and being informed about one’s illness.” This perspective is reflected in the way many of our respondents fought, and continue to fight, the idea of HIV as a “spoiled identity,” seeking to reclaim it. Jenny, diagnosed in 2014, is in many ways representative of a number of our respondents, emphasizing the positive impact that HIV has had on her life: “It [HIV] was the catalyst for change for me so, yeah … I’ve only ever had sort of good things come from it.” At the same time, this is not to say that every respondent felt the same way about their diagnosis, with one respondent going so far as to highlight their concern as to how holding a contrary view might be perceived:

I hate HIV. It took so much from me. Sorry, it just did … you know, I’m one of the few who don’t think, can’t see anything positive about having HIV … God I sound awful, don’t I? … I don’t see why I should be forced to be happy with it … It’s a terrible thing to live with. I hate it, sorry, I just do”

(Linda, diagnosed in 2008).

The social realities of living with HIV

Internalized stigma may be, to a degree, self-generated. However, the fears of discrimination, rejection and even violence on which it is based are unquestionably well-founded. The disjuncture between the medical reality of treated HIV and social constructions of HIV dominated the lived experiences of our respondents. Attempting to live “normally” or “positively” while one’s social status remains uncertain comes with many challenges.

Close social relationships are integral to the successful navigation of chronic illness; good social support networks have been shown to lead to better mental health, a more positive life-view, and better adherence to treatment regimens (Petrak et al. 2001). However, our respondents highlighted the historic and ongoing difficulties of navigating issues of disclosure to intimate partners, family, and wider social circles. In keeping with “living positively,” many people living with HIV feel that disclosure is almost a matter of obligation (Smith et al. 2017) despite the fact that this can come with (sometimes unexpected) social costs:

We were renting a stable [to] someone with a horse and when she found out [about my status] she came and took her horse away. I don’t know whether she thought I was going to give her horse HIV or what!

(Graham, diagnosed in 2008).

While Graham’s experience highlights the absurdity of some people’s reactions to those living with HIV, the social costs can be high – Linda, diagnosed in 2008, and living in a rural area, found herself suddenly isolated:

I stopped having people dropping in … people used to come to me for advice, knock on the door with their kids … and suddenly I’m rock-bottom, I’m someone, somebody with HIV. I’m not who they thought I was. I’d betrayed them, I think.

As a result, fear of HIV-related stigmatization means that every disclosure tends to represent a carefully calibrated risk analysis.

Many people, in the immediacy of their diagnosis, forgo romantic relationships, sometimes for years (Stigma Survey 2015). Likewise, the idea of sexual intimacy is something with which many living with HIV have struggled to come to terms (Rohleder et al. 2017). For some of our respondents, this stemmed from internalized stigmatization – low self-esteem, self-loathing, and fear of rejection. For Scott, diagnosed in 2008, it took time to regain the confidence needed to return to the dating scene: “I started dipping my toe back into the water of dating … when I was kind of ready for it, which I think took about … gosh, I don’t know, actually, four years maybe. It took years.” However, for some of our respondents, disclosure of their status to prospective partners was frequently not a positive experience; Eric, diagnosed in 2010, recounted a particularly extreme reaction:

I went on a date with a guy a few years ago. We were sitting at the bar and had just ordered some drinks … he asked me if I was HIV-positive and then flipped out. It was really strange, he called me dirty and a slut in the bar, loudly in front of lots of other people. He left shortly afterward.

Evidence suggests that being upfront about HIV status (even if “undetectable”) on dating platforms comes with a number of risks, not least the danger of being filtered out of searches, significantly curtailing the number of responses a profile might otherwise register (Giles 2021; Numer et al. 2019; Rijneveld 2021). Mike, diagnosed in 2014, highlighted the pitfalls of declaring one’s status online:

I’ve definitely felt excluded from those spaces [dating apps] when I’ve put my status on my profile, because people wouldn’t respond to your message or people would say “no thanks” and some people would say, explicitly, like: “No thanks, you’ve got HIV.” Or not even “no thanks,” they would just say the most horrific things to you … so then you take it off your profile.

Within sections of the HIV community, disclosure in the interests of “positive living” (Benton et al. 2017; Mazanderani and Paparini 2015) has come to be framed as “being honest,” “being true to yourself,” and, at times, almost as a moral duty. This has in some instances heightened the pressure on those affected (Flowers and Davis 2012); one of our respondents felt an expectation by sections of the HIV community to highlight his status to be burdensome: “I wanted to be one of those, like, stigma warriors but I got tired” (Mark, diagnosed in 2017). For other respondents, “necessary” disclosure was problematic, given that most people would not feel compelled to disclose, for example, their diabetes to potential romantic partners: “Do I need to tell a hookup I’ve got diabetes? Literally, it [HIV] is as transmissible. And in fact, more than that, there’s no safer sex than having sex with somebody who’s undetectable³” (Louis, diagnosed in 1996). At the same time, disclosure can become something of a test for prospective romantic partners – a way of ascertaining if the (potential) relationship has a future (Smith et al. 2017). However, being upfront about one’s status can result in quite humiliating rejection; Ahmet, diagnosed in 2016, recounted a first date during which: “I saw a guy, I told him I was undetectable, HIV-positive undetectable, and he run away faster than Road Runner. So, the Road Runner is actually really slow next to that guy, you know.” To a certain extent, then, some people living with HIV choose to become involved with others in the same position, based on the fact that a shared understanding of HIV makes such relationships easier to navigate (as stated, three of our respondents were in long term relationships with partners who were HIV-positive) (Skinta et al. 2014).

Disclosure of HIV status to family has long represented a quandary (Petrak et al. 2001) and has often been cited as the most difficult and fraught of discussions. Fears of ostracism can be compounded with concerns about burdening close relations, and the fear of besmirching a family’s “good name” (Anderson and Doyal 2004; Flowers and Davis 2012; Rosenfeld et al. 2015; Stigma Survey UK 2015). In this regard, the experiences of our respondents were varied. Some, like Omar, diagnosed in 2013, reported life-affirmingly positive experiences:

So, when I told it to my Mum, I think I had this speech prepared, and that “I’m ready to leave the house if you want me to or what-not,” and she was like: “Don’t be silly” … [having] the support of my family was amazing.

However, this was not always the case and some respondents, like Jakub, diagnosed in 2016, experienced alienation from family that was (and, in some cases, continues to be) devastating: “I don’t have parents. I do have parents but they kind of don’t exist for me and I don’t exist for them. A few weeks ago … I tried to speak to my Mum and she said to me [that] I’m dead … to her.” Other respondents, like Scott, diagnosed in 2007, decided not to tell their family in the interests of not upsetting them:

I didn’t tell my parents. And I haven’t done yet … I didn’t at the time because I knew I was being cured. Not cured, but I knew I was on the road to recovery and the meds were doing the job … I think at the time my Dad was having a hip operation so there was already a lot of worry within the family. They didn’t need any more. I didn’t need to exacerbate the situation and I just knew that this was information that wasn’t needed at the time.

Lack of disclosure in instances like this circumvents or postpones the complexities of disclosed status, but inevitably brings about further complications relating to the lack of the family environment as a welcoming and supportive space.

Finding security in private and public spaces

Part of living a “normal life” involves having the security and stability to thrive (Moyer 2015); having a “home” worthy of the name is central to this. A report in the British Medical Journal found that people “experiencing homelessness have a higher burden of health needs than the general population, face numerous barriers to accessing healthcare, and are often underserved within health systems” (Hopkins and Narasimhan 2022:3). Homelessness – be it rough sleeping, living in temporary accommodation, “couch surfing,” or squatting – has been shown to undermine significantly the ability of people living with HIV to lead “normal lives.”

Homelessness has been an ongoing challenge for many people living with HIV (Beijer et al. 2012; Davila et al. 2018; National AIDS Trust 2008). A National AIDS Trust (2017) report showed that, in the previous year, 35% of people living with HIV in the UK accessed support services in relation to issues including poverty, lack of employment and housing concerns. Even where homelessness per se is not the case, poor quality housing and the insecurity that can be associated with letting can be intensely damaging, especially if people lack the power to negotiate better conditions. A number of our respondents had either experienced homelessness or lacked security with respect to housing. Scott, diagnosed in 2007, described the uncertainty and instability that went along with being homeless:

I mean I was essentially homeless for thirteen months … I’d ask a friend if I could stay on their sofa, y’know … there would be nights where I’d sleep under London Bridge because I just had nowhere to go … and if I found like a hotel or a B&B that I could stay at for kind of four or five nights it was like winning the fucking lottery.

The idea and importance of “safe spaces” – spaces where people, in this case those living with HIV, might feel not only physically safe, but also welcomed and supported as themselves – was emphasized regularly by many of our respondents, who tended, in this respect, to prioritize their own homes (if in possession of one). The term, in this context, evolved out of the women’s movement during the 1970s and was adopted subsequently by identity advocates, including those in the LBGTQI movements, from whence it also entered into HIV and AIDS discourses (Roestone Collective 2014). Roddy, diagnosed in 2006, is in many ways typical of our respondents when underscoring the significance of his home as his primary safe space:

After my diagnosis, I think it [home] became even more important because … once I closed that door, it gave me a place to fall apart, because for the first two years after my diagnosis I needed to fall apart, and I needed a safe space to do that.

One’s home, if one is able to secure one, can become one’s castle, but navigating external factors can nonetheless remain highly taxing, particularly when societal prejudice extends into public areas such as healthcare and support environments that should, by definition, be inviolate safe spaces. These sectors should be governed by “science,” not social prejudice; people living with HIV should be able to expect – as a basic right – safety, security, and support in their dealings with providers.

The importance of positive interactions with healthcare professionals is, of course, crucial with respect to general wellbeing. When effective, interactions can play an important part in bolstering confidence and self-esteem, as evidenced by Scott, diagnosed in 2007:

I was sat in my consultant’s office … and she was looking at a clipboard of facts and figures and data from my bloods … looking over it for probably about two minutes, and two minutes of silence in a doctor’s office is … I mean, that’s torture. And in the end I broke and just … I needed something, I needed an adjective or a sentence or some information. I was just not handling the silence … and she’s like: “ … these stats are like … These are the kind of statistics that Iron Man would have.” And they were her words. I mean, Iron Man. That’s how she described me. Obviously, I was hoping for Catwoman, but … I walked out of that office so smug I would go so far as to say I was smugnoxious.

However, evidence suggests that people living with HIV cannot necessarily rely on positive interactions with the National Health Service (NHS) (Baylis et al. 2017). Our study makes it painfully clear that some NHS staff have, as with many of us, been socialized in environments that are hostile to those living with HIV. Some of our respondents listed a lack of confidentiality and empathy, and, particularly unaccountably for healthcare professionals, a paucity of knowledge with respect to HIV. A number of these instances are historic; Louis, diagnosed in 1996, recalled an early interaction with his local doctor:

The GP gave me an appalling response, he looked shocked [when informed that I was HIV-positive] and then bumbled and stumbled with his words and said: “Ah, ah, well, well, I understand now why you’re not bothered about stopping smoking.” As in, you know, you’ll be dead soon anyway. And then he said: “So, you’re a homosexual I take it? Either that or a drug-taker, which is it?.”

Despite all the successes in treatment and the availability of information on HIV, engaging with healthcare professionals can remain a humiliating experience – Abeo, diagnosed in 2003, recalled experiencing a case of severe toothache in 2018:

The dentist must have said “he’s HIV-positive” about a dozen times within the space of a few seconds and I was pretty angry and nervous, you know, and then they came, you know, to do the extraction almost as if they were going to treat Ebola. And this is London and I felt so humiliated in that moment.

Linda, diagnosed in 2008, also identified gender-related barriers when attempting to access support in the 2000s:

They’re [an HIV support charity in Cornwall] all men … and they were used to men. They weren’t used to hysterical, sort of, middle-aged women who suddenly find they’ve got HIV and just, you know, they just couldn’t deal with it … I [had to become] a bit of a self-publicist … when I was diagnosed and realized that there was actually zilch support, especially for women, like me, especially middle-aged old bats like me, there was no support here.

Linda’s experience draws attention to the ongoing limitations of women-focused HIV support in the UK compared to that which is available for men (particularly men who have sex with men). This extends to the academic literature – the majority of studies in the UK have traditionally focused on men, meaning that women living with HIV can struggle to access the level of information available to their male counterparts (Bell et al. 2018). Jenny, diagnosed in 2014, highlighted the intersectional struggles facing women with HIV:

The stigma around HIV is massive, but the stigma around women having sex is [also] still massive and it’s ridiculous. And when you put those two things together, they add an extra layer of shame onto it … men who contract HIV … have a different type of privilege that women don’t have, you know, and women, medically, generally are ignored in most areas, including HIV.

The way forward for many of our respondents was to take positive steps toward “ownership” of public spaces – taking greater control of personal and group narratives, and thus enhancing feelings of security, agency, and purpose. Closer engagement with HIV groups can boost wellbeing (Rosenfeld et al. 2015). For many of our respondents, a degree of “peace” came through this form of engagement, especially more recently, as support groups themselves work to become more inclusive. Diagnosed in 1999, Olivia’s experience of working with a HIV and AIDS charity is largely representative of our respondents’ positive experiences in this regard:

The week I got diagnosed, I rang up [an] HIV charity … and I spoke to someone that invited me to support groups and I went to support groups and that increased my confidence and so I started volunteering, any opportunity I had to volunteer … . whenever I had the opportunity … I would go and volunteer.

In keeping with Rosenfeld et al. (2015), support groups engender a significant sense of community for those living with HIV, helping to dispel self-stigmatization and bolster self-esteem, and, importantly, offering a sense of mission. Volunteering both afforded some of our respondents supportive communities, helping them to come to terms with their status, and, ultimately, provided them with career paths. As noted, many of our respondents were activists, having made contact with us through gatekeepers operating out of HIV and AIDS charities and advocacy groups. For Alejandro, the sense of community offered by various HIV charities in the early days of his 2008 diagnosis was crucial:

You know, I firmly believe that I [now] belong to a wide and diverse community of people living with HIV … I felt welcome and I felt embraced and I felt nurtured and I feel looked after. And I try to do the same with others because I feel a part of that.

Having volunteered with an HIV charity as a student, Alejandro is now a project manager and researcher working for a group focused on providing HIV and mental health services.

Conclusion

The key finding here is that social attitudes toward HIV have, in the UK, not kept pace with medical advances. That current treatment regimens mean that people living with HIV can be HIV-neutral should, in effect, be having a transformative impact on lived experiences. In terms of physical health, this has indeed been the case – HIV is a manageable condition rather than the “death sentence” it was. Social attitudes, however, remain mired in the 20^th century; an HIV diagnosis continues to engender high levels of stigmatization. That so many people living with HIV continue to experience (self)discrimination, exclusion, and structural violence as a result of their diagnoses is testimony to the fact that the cost of living with HIV remains high. The importance of the availability of safe private spaces in supporting those living with HIV to navigate their social landscapes is clear: our respondents’ experiences of homelessness and insecure living arrangements are revealing. Of our respondents who had made (a measure of) peace with their diagnoses, all cited finding a home as central to their wellbeing. More broadly, the extent to which our respondents continued to encounter discrimination within the healthcare sector provides compelling evidence, if any were required, of the urgent need to bridge “science” and public opinion in this area – the healthcare sector must stand as an accommodating and safe public space for all. Lastly, our respondents’ experiences highlight how involvement in activism (particularly when other forms of support are lacking) can bring with it a sense of control and agency. While activism may be neither possible nor appropriate for all people living with HIV, a number of our respondents found a degree of peace through fighting their “spoiled identities.” Ultimately, until HIV is actually viewed by the wider public as being “no different to diabetes,” medical advances will only have a limited impact on the lived experiences of those living with HIV in the UK.

Acknowledgments

We would like to thank all of the respondents who took part in this study, for their courage, insights and good humour. We hope this article does their stories justice. We would also like to thank Dr Jill Payne for her considerable help in editing this article and her constructive feedback on earlier drafts.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was funded by a joint grant from the Brigstow Institute, University of Bristol, and the Bristol Photography Festival.

Notes on contributors

Adrian Flint

Adrian Flint is an Associate Professor in the School of Sociology, Politics and International Relations (SPAIS), at the University of Bristol. Adrian’s work focuses on issues of structural violence and the need to decolonise narratives surrounding illness and disease as well as how popular culture serves to reinforce dominant (often racist) narratives pertaining to health and wellbeing. He can be contacted at: [email protected]

Mareike Günsche

Mareike Günsche is a photographer and lecturer at the University of Arts in Ulan Bator, Mongolia. Mareike uses participatory photography as a tool for empowerment with a focus on human rights, gender equality, and social change. She can be contacted at: [email protected]

Martin Burns

Martin Burns is a writer, HIV/AIDS activist and equality advocate. Martin has written and spoken extensively on the subject of HIV/AIDS, and is principally focused on highlighting the prejudice, stigmatisation and Othering still experienced by those living with HIV/AIDS. He can be contacted at: [email protected]

Notes

1. Ethics approval for the study was obtained from the requisite University of Bristol Ethics Committee.

2. Goffman’s work has inspired a considerable degree of research into the mechanics of stigmatization and their framework has been used to better understand issues such as mental illness, unemployment, physical disability, debt, and welfare dependence. Furthermore, Goffman’s work has inspired researchers from across a range of disciplines, from Sociology to Anthropology. The result has been a certain vagueness with respect to terminology and definitions (Link and Phelan 2001). While acknowledging the ubiquity of some of Goffman’s concepts and the vagueness with which some of these are deployed, the framework offers useful insights with respect to our study.

3. The claim that people living with HIV can be “undetectable” and hence “untransmittable” is based on a number of clinical studies, endorsed by the US Centers for Disease Control and Prevention (CDC), that show that individuals who have consistently adhered to their ART regimens for a minimum of six months cannot transmit the virus to others (Patel et al. 2020; York 2019).