Growing up in the shadow of HIV: post-AIDS generation of HIV-negative men who have sex with men in Sweden and their perceptions of HIV and stigma

Abstract

Despite growing understanding and acceptance of the concept of Undetectable = Untransmittable (U = U) among gay men, HIV stigma remains a burden for people living with HIV. This study explored perceptions of HIV among HIV seronegative gay men in Sweden in this new context. Using snowball sampling, 15 gay men born between 1980 and 2000 were recruited to the study. Semi-structured interviews were conducted and data were subjected to reflexive thematic analysis. Men grew up experiencing gay stigma and were repeatedly informed by parents, schools, communities, peers, and popular culture about the dangers of HIV, and that gay men were a high-risk group. As men grew older, and the premise of HIV shifted dramatically due to U = U, some remained emotionally anchored to the pre-U = U era, while others realigned their perceptions, often after a process of reconciling emotional responses (e.g. HIV = death) with the logical-rational claims made about U = U. The study highlights key areas for future efforts, namely establishing a balance between HIV education strategies and stigma reduction initiatives. Study findings underscore the need to care for the memory of those lost during the crisis years, while also addressing the stigma faced by those currently living with HIV.

Keywords:

• Gay men
• HIV
• stigma
• U = U
• Sweden

Introduction

Exploring the social dynamics that shape a dominant culture’s perception of HIV is important, as these perceptions create tangible obstacles for people living with HIV (Link and Phelan 2001). These barriers, manifesting as stigma, discrimination, and potential loss of sexual citizenship, are prevalent across different cultures (Herdt 2001). Since the early 2000s, research on HIV stigma has predominantly focused on the experience of people living with HIV (Earnshaw and Chaudoir 2009). More recent studies have highlighted the extensive impacts of HIV stigma, and HIV stigma-related discrimination, including poor health and lower quality of life (Andersson et al. 2020; Eaton et al. 2020; Pantelic, Sprague, and Stangl 2019; Reinius et al. 2021; Walker 2019).

Research on attitudes towards, and perceptions of, HIV in the general HIV seronegative population was guided by the idea that by curbing prejudice in this group of people not living with HIV, the health outcomes of people living with HIV could be improved (Earnshaw and Chaudoir 2009). Pre-exposure prophylaxis for HIV (PrEP) and the concept of Undetectable = Untransmittable (U = U) has changed the landscape of HIV education, including efforts to reduce HIV stigma (The Lancet 2017). The research literature on how HIV seronegative men understand, and relate to the sexual and social dimensions of HIV and HIV stigma in the light of these biomedical advances is unfortunately scarce (e.g. Grace et al. 2020).

In this paper, we aim to contribute to this field of research by seeking to understand HIV stigma from the perspective of HIV-negative gay men in an era of major biomedical advance. In particular, we seek to understand how a group of HIV-negative Swedish gay men, who had never experienced the AIDS crisis first-hand, perceive HIV and stigma. We ask what it means for them to be part of a community impacted by the HIV epidemic and how this association is articulated. The research was informed by Parker and Aggleton’s (2003) suggestion that a positive response to HIV-related stigma and discrimination lies in collective action, rather than behaviour change at the individual level alone. HIV prevention and education are not solely matters for the individual, but gain their power through engagement with partners, peers, advocates, activists and affected communities as a whole (Aggleton et al. 2018).

Historical perspectives on HIV

The first cases of AIDS were diagnosed in the USA in 1981 and the first case in Sweden was identified one year later. In the early 1980s, the absence of effective treatment and the proliferation of misconceptions led to a social crisis in Sweden and elsewhere (Thorsén 2013). People living AIDS-related illnesses experienced a range of physical signs and symptoms including Kaposi’s sarcoma, then known as the ‘gay cancer’ (O’Leary 2014). In the following decade, early and prolonged treatment using first and second generation medications caused irreversible lipodystrophy, and the redistribution of body fat from the face, legs, and feet to the abdomen and upper back (Koethe et al. 2020). Initially, AIDS had initially been called GRID, short for ‘gay-related immune deficiency’ (O’Leary 2014), and in popular culture it was associated with either being gay or a substance user (Johnson 2013). This early connection between AIDS and male homosexuality manifested itself in parental concern about HIV when their sons came out as gay (Fields 2001).

European and Swedish policy initially adopted somewhat passive approach to HIV prevention since it was perceived to be a limited problem detached from society as a whole. This changed in Sweden after a young boy became HIV positive following a blood transfusion in 1985, encouraging government agencies to define risk groups (e.g. gay men) and risk practices (e.g. sex with multiple partners) because it was perceived that the general population (of which gay men were supposedly not a part) was now at risk. This also opened up a process of Othering gay men regardless of HIV status. Increased numbers of newly detected cases sparked demands for immediate action, such as new health regulations, which included a ban on gay men donating blood, the closing of gay bathhouses, and an updated Communicable Diseases Act. The update included provision for the indefinite isolation of HIV positive individuals and the mandatory disclosure of an HIV positive status. This response was, according to Nyman (2024) uniquely Swedish and was not to be found elsewhere in the world. The newly introduced legislation fostered stigma and fear, rather than effective prevention.

The idea of AIDS being a ‘gay disease’ rapidly entered public consciousness and became part of mainstream awareness and popular culture (Johnson 2013). More specifically, the idea of AIDS as a ‘gay disease’ was widely promoted by mainstream media throughout the 1980s and 1990s (Hart 2002; Thorsén 2013). During the mid-1980s and 1990s, and once a virus (HIV) had been identified as the cause of AIDS, antibody tests and antiretroviral therapy (ART) were introduced. These biomedical advances could be viewed as tools ‘[linking] matters of individual and public health’ (Race 2001, 168). This shift put the emphasis on individuals being responsible for their actions, potentially leading to blame for any new infections (Dowsett 2017; Race 2001). In this context, becoming HIV positive was viewed as the consequence of ‘irresponsible’ behaviour (Herek 1999), which could include casual sex, sex with multiple partners, sex while under the influence of illicit drugs, and condomless anal sex. Further, this included a fear of not only becoming HIV seropositive, but simultaneously being transformed into a subject of HIV stigma and experiencing HIV-related discrimination (Herek, Capitanio, and Widaman 2003).

In the 2000s, at least two additional biomedical breakthroughs occurred. Firstly, following the Swiss Statement on HIV and Communicability (Vernazza et al. 2008), additional research concluded that there was zero risk of HIV transmission in HIV sero-discordant couples when the HIV-positive partner had an undetectable viral load. Secondly, Pre-exposure prophylaxis for HIV (PrEP) by means of emtricitabine and tenofovir disoproxil, became an additional safer sex option (ECDC 2015). These two breakthroughs changed the landscape of HIV prevention and research suggests a shift occurred in people’s perspectives as these tools achieves wider recognition within the gay community (The Lancet 2017).

Today, the epidemic remains relatively limited in Sweden with approximately 9,500 people living with HIV in a population of ten million. Sweden reached the UNAIDS’ 90-90-90 goals in 2017 (Gisslén et al. 2017) and has also almost reached the subsequent 95-95-95 goal for 2030 at the time of writing.

Theoretical perspectives on stigma

Ervin Goffman’s work on stigma stresses that stigma is a process shaped by relations, perceptions, and power. Individuals are labelled by powerful forces beyond personal control, with these labels being based on perceptions of their character, attributes, or status that are seen as discrediting. While stigma as a process operates largely at an interpersonal level, discrimination is a more social response informed by these labels and the stigma they generate (Goffman 1963).

In the field of HIV, there have been numerous attempts to understand and conceptualise HIV- and AIDS-related stigma (Earnshaw and Chaudoir 2009; Link and Phelan 2001; Parker and Aggleton 2003; Parker et al. 2017). Herek, building on Goffman’s work, has argued that

‘AIDS-related stigma is manifested in prejudice, discounting, discrediting, and discrimination directed at people perceived to be living with HIV and at the individuals, groups, and communities with which they are associated.’ (Herek 2002, 595).

This definition distinguishes between ‘prejudice’ and ‘discrimination’ as does that offered by Parker and Aggleton (2003) and UNAIDS (2014). Thus, prejudice may be understood as a negative attitude, while discrimination is defined by actions and behaviours specifically directed towards a person or group.

Herek also distinguishes between ‘instrumental stigma’ and ‘symbolic stigma’ in his writing. These concepts are best understood in the light of the ‘responsibility’ of becoming HIV positive, as well as the medical consequences of infection as they were before ART. Instrumental stigma stems from the communicability and lethality of an untreated infection. It has to do with the illness being incurable or degenerative.

As a consequence of instrumental stigma, the person living with HIV thereby becomes a personification of both mortality and death in the eyes of the public (Herek 2002). The idea of putting others in danger has over past decades motivated the imposition of Draconian public policies across the globe, many of them directed towards people living with HIV (Herek 2002). Symbolic stigma, on the other hand, relates to the social meanings of the infection and its association with certain socially marginalised groups including substance users and gay men.

Herek argued that the notion of responsibility for becoming HIV positive was something that evoked HIV stigma in the sense that it is something that could have been avoided on an individual level through the use of condoms, or PrEP today, especially when the behaviour is socially disapproved of or perceived to be morally wrong (Herek 2002). While this was written in the context of the relations between the dominant heterosexual culture and the gay community as a whole, it can also be applied to a divided gay community comprising people living with, or not living with HIV (Courtenay-Quirk et al. 2006). This division is made manifest in the partner selection actions of gay men who, based on their judgement of other gay men’s behaviour and character traits, distinguish between ‘safe’ and ‘risky’ sexual partners (Dennermalm et al. 2022).

Methods

Study design

This study took place as part of a larger investigation (Posithiva Gruppen 2022) that aimed to further understand stigma in the age of U = U, undertaken by a collaboration between the Karolinska Institutet and two non-governmental HIV organisations – Posithiva Gruppen and Noaks Ark Stockholm.

Data collection

Snowball sampling was used to recruit HIV seronegative gay men (both cisgender men and transgender men were eligible for participation). This method facilitates reaching into deep pockets of the target population (Magnani et al. 2005). Each respondent was given the option of recruiting up to two additional respondents and was offered a two lottery tickets for their effort. The final sample comprised of 15 men with whom we conducted interviews in 2020.

The first author conducted interviews face-to-face (n = 7) and via teleconference (n = 8). Interview lengths ranged from 22–65 min. Participants born between 1980 and 2000 were included in the analysis. At the time of interview, participants were mainly living in Stockholm (n = 13), however, none of them had been born in the city. Demographic data on participants are presented in Table 1.

Table 1. Participant demographics (n = 15).

Country of birth	Sweden	n = 10
	European country	n = 2
	Non-European country	n = 3
Age	Range	20–40 years
	Mean	29 years
Education level	Elementary school	n = 1
	High school University	n = 2n = 12
Experience of sex with	Yes	n = 4
person living with HIV	Maybe	n = 3
	No	n = 8

The interview guide was based on research on stigma and HIV in Sweden and previous tools designed by members of the team (Andersson et al. 2020; Deogan, Lindberg, and Ekström 2016) and was made available in Swedish and English. It contained open-ended questions on initial memories of HIV, past and current perceptions of HIV, relationships with people living with HIV, and understanding of recent findings on undetectable viral load. It contained follow-up questions of the type: ‘Could you please elaborate on that?’ or ‘How did that make you feel?’, which encouraged participants to talk more fully about the issues. Three of the interviews were conducted in English and the remainder in Swedish. After three pilot interviews with participants recruited through the first author’s extensive network of gay men, no major alterations were made, and the pilot interviews were therefore included in the analysis. A transcriber and the first author were responsible for producing verbatim transcripts. The first and second authors collaborated over the translation of the quotes into colloquial English.

Analysis

Reflexive thematic analysis (Braun and Clarke 2019) was used to make sense of the data. While analysis is always an interpretive practice, we initially adopted a more semantic style of coding. This allowed us to remain close to the empirical data. The iterative process of coding, clustering codes, and generating themes with shared meanings led to the development of a central theme and various sub-themes. These were discussed within the entire research team several times until the final theme and sub-themes were agreed upon (see online Supplemental File 1), in an effort to make this a collaborative process between academia and two community organisations.

Ethical considerations

The study was reviewed and approved by the Swedish Ethical Review Authority (Ref: 2020-00975). Participants received information about the aims of the study and data protection. We acquired written consent prior to participation. Token compensation was provided in the form of two cinema tickets. Participants were given pseudonyms to protect confidentiality.

Results

In Sweden, prior to 2015, individuals living with HIV were required by law to disclose their HIV status to any sexual partner, regardless of viral load. This requirement still exists in the law but was modified by the introduction of new medical guidelines in 2015. Today, a medical doctor can remove the obligation placed upon an individual to inform a potential sex partner about their HIV status, given two consecutive undetectable viral load tests checked every six months (Folkhälsomyndigheten 2019). This relatively new guideline was well-received by participants in the study, some of whom had already been having sex with HIV-positive partners before the U = U era. Others were unsure if they had done so, since they had never asked and their partner had never disclosed (see Table 1). They were also well-informed about the concept and consequences of having undetectable viral load. Perceptions of HIV did not markedly differ between the youngest and oldest participants, despite a 20-year age difference and a difference in proximity to the AIDS crisis years.

We called the main theme developed ‘Growing up in the shadow of HIV’ and it comprised the following three sub-themes: HIV stigma and Queerness are Inseparable; Normalised Fear of Becoming HIV Positive; and Moving Forward Together into the Future.

HIV stigma and queerness are inseparable

Participants described how their perceptions of HIV and of people living with HIV were shaped by various forces, including parents, school, and popular culture. They described homosexuality being regarded as ‘bad’ or ‘wrong’ in their upbringing, with parents in particular subscribing to the notion that gay men are promiscuous, irresponsible, or even paedophiles. Some participants reported that these internalised perceptions had affected their self-image.

‘I have (…) processed the idea of “the disgusting gay” that I had inside my head. As if I myself thought I was disgusting for being gay.’ (‘Felix’, 30 years)

Participants had learned about HIV and people living with HIV early in life through stories and descriptions of the epidemic from the 1980s onwards. Several participants described how parents, who themselves were young in the 1980s, associated gay men with HIV. One participant remembered being advised by their parents to use tissue paper on the seat of public toilets to avoid getting HIV, not understanding until later that public toilets places were popular cruising spots for gay men. Parents’ warnings about HIV were also present in the post-AIDS era. One participant born in 1996 described how his parents expressed concern when he came out as gay in 2010:

‘We had a talk, and my parents were really strong on, “you have to have safe sex”. They were aware of the HIV crisis back in the days.’ (‘Wouter’, 24 years)

Sexuality education in school also contributed to the fear and the connection between homosexuality and HIV.

‘I know that there was also talk about AIDS in school (…). It felt very obvious that it was a queer disease (…) And when I first understood that I was gay, [I] felt that I was somehow being linked to that disease. I was very afraid of getting it.’ (‘Felix’, 30 years)

‘Adam’, ten years his junior, further discussed the connection between being gay and HIV: ‘But of course, you end up being a homo, and then you will become HIV positive on top of that. Well, of course things will get even worse.’ (‘Adam’, 20 years) For him, becoming HIV-positive was just another aspect of the perceived misfortune of being gay.

Popular culture, and its depictions of HIV, was often referred to in the interviews. The content was generally stigmatising and reinforced the idea that HIV was a deadly infection affecting memebers of the gay community. The references not always took the form of the horrific, fear-based imagery typical of 1980s HIV prevention campaigns, but included well-meaning screenplays by gay authors intent on portraying an untold and important part of history, or television shows including individuals living with HIV.

‘When [cast member on reality-TV] had AIDS, and then he died afterwards. It was almost like it was reinforcing the fact that "if you are gay, then you will die from HIV”. It is sad to say, it kind of reinforced everything that you had learned before. It’s not really seeing someone living a normal life.’ (‘Brandon’, 34 years)

The concept of there being a ‘collective trauma’ in the community was articulated by participants. This contributed to the shaping of the idea that HIV and its stigma were inseparable parts of gay/queer life.

‘I have such feelings of discomfort when thinking about how it must have been in the past and in seeing feature films, and even documentaries about that time, and how there are so many of our older members who had gone but who would otherwise have still been alive. That I find very disconcerting. It is such a wound in the community, like a collective trauma. Even though I don’t have a connection to it by blood, it feels like something I carry with me.’ (‘Alexander’, 29 years)

Alexander went on to say he remembered visiting an art exhibition by the gay artist Keith Haring, who died of an AIDS related illness in 1990, and said ‘one really feels things, fellowship, and grief’. Another participant made reference to the concept of pre-AIDS queerness, a disrupted sexual revolution, and the possibility of returning there.

‘I sometimes think a sexual revolution was punctured by the AIDS epidemic. And I sometimes fantasise about what would have happened if that didn’t have occurred (…) it was like a collective experience, like a queerness before AIDS. In an era of PrEP, you can come close to something which maybe was like how it was before AIDS.’ (‘Benjamin’, 28 years)

In summary, this sub-theme focused on how the perceptions of both HIV and queerness were infused into general understandings of HIV by (well-meaning) parents, schools, the media, and cultural narratives.

Normalised fear of becoming HIV positive

Participants described their anxiety about becoming HIV positive in terms of the fear of a ‘death sentence’, of having a ‘permanent’ medical condition, and of passing HIV on to others, but also in relation to a fear of loneliness, and emotional and sexual rejection. Some HIV seronegative participants described the fear of having to disclose their HIV status to family, friends, or sexual partners if they were diagnosed with HIV in the future.

Despite growing up years after the AIDS crisis, a participant born in 2000 said that his understanding as a teenager was that ‘[HIV], pretty much, resulted in AIDS. And then you kicked the bucket at 25.’ (‘Adam’, 20 years). In sum, participants described a sense of lingering fear of transmission and impending death that had been instilled in them from early on in life.

For some, living with HIV signified more than living with an infection. It implied a sense of Otherness and the possession of certain character traits: in the form of the idea that people living with HIV were ‘promiscuous’, ‘careless’ or even ‘perverted’. This was often made in reference to the past but also, to some extent, the present. Less common were descriptions of physical features of infection, such as Kaposi’s sarcoma, or the side effects of early treatment such as lipodystrophy. Some described how HIV played a part in gay stigma such that,

‘… you end up [thinking]: “but of course you are being punished, in a sense, [for being] a homosexual man”. And ‘yeah, but that is what you deserve for being such a disgusting little slut.’ (‘Adam’, 20 years)

Looking for partners online, some participants described a selection process based on HIV status, whereby men who were open with their HIV-positive status would be filtered out. While the majority of the participants either expressed a previous or ongoing process of change in their attitudes towards HIV and people living with HIV, others described ongoing fear. ‘I am still afraid of getting HIV. I don’t want to get HIV’, said ‘Felix’, who was 30 years.

‘It becomes a red flag maybe, in the subconscious. Even though I don’t want to, and even though I have the knowledge, and even though I have slept with someone who is living with HIV. I still believe that (…) [HIV marks people, [they] don’t even get the chance to have a normal conversation, [they] get marked immediately. A kind of rejection.’ (‘Linus’, 26 years)

Notably, those participants who avoided even chatting online with people living with HIV recognised that their behaviour was not respectful nothing to be proud of, but tried to make sense of their actions during the interviews. ‘The stigma against HIV is present in my body, nonetheless.’ (‘Felix’, 30 years). One participant described the fear of not only becoming HIV positive, but of changing into the individual he feared, and being rejected himself. ‘But I also think you are afraid because then you will be stigmatised by people because you know how you have stigmatised others. (‘Dirk’, 36 years)

Another participant spoke of HIV stigma as more of a problem for him, than the medical diagnosis itself (c.f. Persson, Ellard, and Newman 2016).

‘I know the stigma around it, that people don’t want to date you or people don’t want to interact with you. I think that makes your life harder. I think that’s what I more would be afraid of than actually being sick.’ (‘Wouter’, 24 years)

For participants in this study there were therefore multiple fears at play, including fear of the virus, fear of stigmatisation, and fear of transforming into the ‘Other’. For some, these fears were things of the past while they were very much in the present for others.

Moving forward together into the future

Participants were generally aware of the concept and implications of having an undetectable viral load, although not all were familiar with the term U = U itself. However, there were differences in how that knowledge was acted upon in their everyday lives. For some, there was a conflict between the logical and the emotional. They knew that HIV seroconversion was no longer a death sentence but a manageable condition. However, the emotional response was fear of the consequences of contracting HIV. This hindered some participants from dating or having sex with men who were living with HIV.

‘Logically, I know that [HIV] would not be a death sentence. I know that I could have just as long a life, and so on. But I still believe that it would be very difficult.’ (‘Benjamin’, 28 years).

However, the majority of participants explained that their perceptions of HIV had changed and that the process of this change of attitude was triggered by various events or turning points (Table 2).

Table 2. Turning points in attitudes towards people living with HIV.

Having a friend who was living with HIV

Having an HIV positive sexual partner Introduction of PrEP Informal peer education Knowledge about U = U from research, media, NGO, sexual education U = U being a part of university education

‘It became sort of an awakening when he told me he was HIV-positive (…). I thought that a person had to sleep around quite a lot to get it. (…). When I met him, [he] didn’t really fit my prior idea of who [becomes HIV positive].’ (‘Linus’, 26 years)

Another participant described a situation in which he was asked to have sex by a previous partner who had by then become HIV positive. Initially, he hesitated, but after reading about U = U and speaking to the staff at the gay health clinic and letting what he had learned ‘sink in’, he accepted the invitation.

‘I think my perception changed after starting to meet people through Grindr, who said that they had undetectable HIV, and whom I’ve slept with [in the past]. This was probably a first step in [the process of] change, to realise that it wasn’t such a big thing.’ (‘Samuel’, 31 years)

Samuel’s process of change took a matter of days. For others, the process took longer and some were still undergoing it at the time of the interview. Updated knowledge of U = U was described as an important turning point for several participants.

‘Today I would have done it anyway [chance of dating someone HIV positive]. (…) From maybe 30–40% to 90 to 99%, due to what we know now.’ (‘Alexander’, 29 years)

Other participants went further by stating that U = U was, from an HIV transmission perspective, a safer option than ‘having unprotected sex (…) with someone who is [HIV] negative or whose status is unknown.’ (‘Kaamran’, 28 years)

One participant noted that there was an element of self-preservation within the gay community and that this might influence how some people acted toward people living with HIV.

‘I think that people are more (…) interested in protecting themselves from getting HIV (…) than in being supportive or standing in solidarity with those who have got HIV. (…). I very much believe in solidarity and the community but at the end of the day, there are many who just think about themselves.’ (‘Alexander’, 29 years)

He later added, ‘I realise now that: Shit, we don’t talk about this”. We are the generation that doesn’t need to talk about this.’ (‘Alexander’, 29 years) and recognised his privilege of being a HIV seronegative man growing up today.

Discussion

The aim of the study was to explore how a group of gay men in Sweden, without first-hand experience of the crisis years of the 1980s and 1990s, perceived HIV and stigma. Despite coming out as gay and becoming sexually active after the introduction of ART treatment, the HIV epidemic impacted participants’ lives and sexual identities in various ways – not only in terms of living with a chronic infection, but also with regard to being subjected to what Herek has called symbolic stigma.

There were two key dimensions to this. Firstly, there was the concept of the individual being ultimately responsible for becoming HIV-positive, and secondly the idea of transmission occurring as a result of the failure of the individual in terms of having a ‘promiscuous’ lifestyle, despite the awareness of risk, the widespread availability of safer sex messages, and the normalisation of HIV testing. Being young and observing the gay community from a distance, the queer connotations of a perceived deadly infection could be overwhelming and traumatic. Additionally, participants faced the fear of being judged by parents, friends, and people at school. This, despite living in this biomedical era, and in an era and setting where gay rights have been institutionalised.

This was a narrative shared by participants at both ends of the age spectrum: both those who were born in the early 1980s, and who came of age before the introduction of ART and, more surprisingly those born around 2000 who came out to their parents in the mid-2010s.

Several the participants, especially during their adolescence understood HIV as something that they as gay men were destined to get, almost to the extent of being punished for being gay, or having a lifestyle deemed ‘promiscuous’ in the eyes of the dominant culture. This created a tension between notions of pre-determination, and the responsibility for the self which could possibly counter this through the practice of choice. By using condoms or PrEP, and by choosing to adopt a non-promiscuous lifestyle their young selves understood that they could remain HIV seronegative and thereby avoid both HIV- and gay-related stigma. As they grew older, their perceptions of HIV and HIV-related stigma became more nuanced and helped shape a counter-narrative to notions of pre-determination, and the lethality of HIV. This change was facilitated by a more up to date knowledge of U = U, positive attitudes towards the possible removal of the legal duty to inform sexual partners, the use of PrEP, the desire to stand in solidarity with people living with HIV, and the wish to help heal a divided or wounded community (Courtenay-Quirk et al. 2006). The empirical data also points to a negotiation between what participants know now (U = U), and what they have known and felt in the past (and to some degree still feel and act upon) – a negotiation between what is logical, and what is an emotional response to the HIV crisis.

Herek’s concept of instrumental HIV stigma was also present in the interviews, with respect to the lethality and communicability of HIV (Herek 2002). The lethality of HIV was mostly described when discussing past perceptions of HIV. Accounts of death, stigma, and Otherness remained closely linked to queerness and thereby became part of participants’ identities, being shaped by multiple, overlapping processes including relationships with family, community, and popular culture (Reinius et al. 2021). Discussion about the visual signifiers of AIDS or ART, when the condition becomes apparent to others, and the degree of social interruption (Herek 1999), was not present in the interviews. A recurring theme in the men’s descriptions however concern about becoming the person one had avoided or feared and thus being subjected to the very HIV discrimination that one might have subjected others to in the past. Its focus therefore was on the process of becoming HIV positive and thus being subjected to HIV-related stigma and discrimination.

Participants in this study were born between 1980 and 2000. Early in the study, we considered whether the youngest and older participants might belong to different social generations in relation to HIV and what HIV entails. However, we did not find a difference between them in terms of attitudes towards HIV as an infection or towards people living with HIV. This suggests that men born from the early 1980s to 2000 share very similar experiences in terms of growing up under the shadow of the HIV epidemic. Their negotiations between what they had learned from family, school and the media, and their growing up in the shadow of HIV and their knowledge about U = U was, for some, a process in the past but, for others, a process in the present. As one of the respondents mentioned, sex with people living with HIV and with an undetectable viral load is safer than a person whose HIV status is unknown. This is a dramatic shift in perception: from viewing a person living with HIV as someone to avoid, to someone who is desired for their positive status in the era of U = U (see also Grov 2017; Dennermalm et al. 2022). Our findings suggest that the very broad post-AIDS queer community in Sweden may be metamorphising into a new generation as perceptions of HIV are changing. In line with previous findings from Sweden (Dennermalm et al. 2022), this process may be facilitated by an overarching desire to separate HIV from the ‘homosexual body and community’, facilitating a renewed focus on pleasure and intimacy, and re-connecting with the vestiges of a pre-AIDS queerness, sexual revolution and unity.

Strengths and limitations

The study was conducted in collaboration with Posithiva Gruppen and Noaks Ark Stockholm, two non-governmental organisations organised by, and for, people living with HIV. Collaborating with organisations representing people living with HIV enhanced the study in both the formative process and when discussing the results. However, this closeness to community may have hindered recruitment, as those with negative attitudes towards HIV or people living with HIV may not have been accessed.

The issue of social desirability bias was raised before each interview. To build trust, the interviewer (also the first author) was an openly gay researcher with previous experience interviewing members of the gay community on issues regarding sex and sexuality. Some interviews were conducted by video call, which may have impacted the interview content. Yet, thick descriptions were to be found in both types of interviews and when reviewing the transcripts, and no major differences were identified between the quality of data resulting from different modes of collection.

Final reflections

In this study, growing up in the shadow of the AIDS crisis of the 1980s and 1990s proved to be a shared experience in some respects for different social generations of gay men, leaving a deep impact at both an individual and a community level. Future challenges involving the early post-AIDS generation and those who have come afterwards include identifying a suitable balance between between HIV prevention/education and anti-HIV and anti-gay stigma efforts (Aggleton et al. 2018).

In particular, it is important to explore strategies through which HIV education programmes in schools, community-based initiatives, and elsewhere can encourage members of the gay community to maintain their HIV-negative status while simultaneously communicating an evolving understanding of HIV, both in terms of new scientific data but also in terms of the lifelong learning for the individual. Efforts should be made to provide a multifaceted education, building capacities within the individual and the community, encouraging critical thinking and helping people to make appropriate choices in their lives and relationships. Additionally, there is a need to provide platforms on which people living with HIV can develop strategies on how to live positively with their status. This, however, cannot be done in a vacuum or by the individual alone, but requires ongoing dialogue with others including society-at-large (Aggleton et al. 2018).

More specifically, anti-HIV stigma efforts should not only provide good quality HIV education, but also address personal concerns and anxieties stemming from a decades-long division within the gay community, between those living with HIV and those who do not (Courtenay-Quirk et al. 2006). In a context where both historical and contemporary representations of people living with HIV have often been framed in terms of fear, there is a pressing need to reconsider how best to approach remembrance. The empirical data in this study highlight a tension between historical depictions, the shaping of different queer identities, and harmful prejudices against people living with HIV. Future challenges include how best to reflect on the historical ramifications of the crisis, and how to preserve the memory of those who have passed, without unintentionally perpetuating stigma. Silence, as noted long ago by the ACT UP movement (Gamson 1989), is not an appropriate response.

Acknowledgements

We thank participants for sharing their stories. We also thank Karima Lundin for proofreading the manuscript.

Data availability

Due to the sensitive nature of the topics discussed, no additional data is available.

Disclosure statement

The authors hereby declare no conflicts of interest.

Additional information

Funding

This work was supported by the Public Health Agency of Sweden (Reference: 00918-2021-2.3.1) and Municipality of Stockholm (Reference: Project 1518).