HIV does not make people dangerous to know. So you can shake their hands and give them a hug. Heaven knows they need it. (Princess Diana.)
This is a quote by Princess Diana, who used her celebrity status to draw attention to several social issues, including HIV/AIDS (Brown & Basil, 2010; Brown, Nesse, Vinokur, & Smith, 2003). The fear of transmission Diana was addressing has been present since the first known cases of HIV in the early 1980s. The believed threat of transmission, coupled with negative attitudes towards marginalised groups that are of heightened risk of transmission, has functioned as a reason for avoidance and stigmatisation towards individuals living with HIV (ILH) (Herek, 2002).
Norway has adhered to several declarations aiming to prevent and improve physical and mental health, longevity, opportunities, and the overall life situation among ILH (The Ministries, 2009). At the time a new strategy of sexual health for 2017–2022 (Ministry of Health and Care Services, 2016) was implemented, reductions in the number of HIV transmissions and improved outlooks for ILH had been achieved, but challenges related to discrimination, stigmatisation, and self-stigma were still found to be present. A lack of HIV-related knowledge, especially related to risks of transmission, also lingered. It was emphasised that updated knowledge on HIV, risk of infection, and successful treatment is crucial for preventing stigmatisation and ensuring satisfactory services (Ministry of Health and Care Services, 2016). As part of supporting the continued work of taking care of ILH, the Norwegian Directorate of Health provides subsidies towards operational costs and projects aiming to ensure that ILH are well taken care of across all levels in society, and to prevent further transmission of hiv and other sexually transmitted infections (Regulation regarding grants for work related to HIV and more, 2016, §1; The Norwegian Directorate of Health, n.d.). As such, stigmatisation experienced by ILH is still on the agenda, despite improved medical treatment and outlook. However, little research has investigated how stigmatisation is experienced and perceived among ILH belonging to marginalised groups in Norwegian society or how they deal with potential stigmatisation.
Since the first diagnosed incidence of AIDS in Norway in 1983 (Brantsæter, Eikvam, Kjær, & Åmås, 2001), men who have sex with men (MSM) have been one of the main groups at risk for transmission, with a high rate of infection (Angeltvedt et al., 2012; Beyrer et al., 2013; Beyer et al., 2013). Since the new recommendations of immediate treatment, the number of newly diagnosed MSM who have been infected within the country have decreased (Ministry of Health and Care Services, 2016). In 2017, a total of 2,077 Norwegian MSM were living with an HIV diagnosis (National Institute of Public Health, 2017).
There is no effective cure against HIV, but since antiretroviral therapy (ART) was first introduced in 1996 (Palmisano & Vella, 2011), the virus has been able to be reduced to undetectable viral loads (U.S. Department of Health and Human Services, 2017). This means that ILH can live long and healthy lives despite their illness (U.S. Department of Health and Human Services, 2017). This advancement is also important for preventing transmission, as there have been no known instances of transmission from individuals with undetectable viral loads (The Norwegian Medical Association, 2016; U.S. Department of Health and Human Services, 2017). ILH with undetectable viral loads are therefore considered as safe from transmission when not having other sexually transmitted diseases (STDs). New guidelines recommend that all patients adhere to treatment as soon as the diagnosis has been given, both because those who adhere to early treatments have shown greater health benefits and to prevent further transmission (The Norwegian Medical Association, 2016). Because poor adherence to treatment may result in resistance (The Norwegian Medical Association, 2016), stigmatisation may result in serious consequences for transmission and for the health of ILH.
Since the first known instances of HIV, individuals with HIV/AIDS have been stigmatised through avoidance, exclusion, prejudice, discrimination, violence, and more (Herek, 2002). HIV-related stigma may result in isolation, struggles, and pain for the stigmatised. It has also been shown to have an effect on HIV testing, risk-reducing behaviour, treatment seeking after receiving a seropositive test result (Chong, Mak, Tam, Zhu, & Chung, 2017; Herek, 2002), and medical adherence (Brezing, Ferrara, & Freudenreich, 2015; Katz et al., 2013).
Herek (2002) defines stigma as an enduring condition, status, or attribute that is negatively valued by a society and whose possession consequently discredits and disadvantages an individual. This is the definition used in this study. Goffman (1963) differentiates between the discredited and the discreditable. The discredited are stigmatised individuals whose stigma is known to others, whereas the discreditable are individuals having a secret they fear will result in stigmatisation if known by others. Because HIV is a concealable stigma, HIV-positive individuals can be both discreditable and discredited, depending on their level of openness about their condition.
Three types of HIV-related stigma have been identified. Individuals living with HIV may experience self-stigma (Thomas, 2006), also referred to as internalised stigma (Berg & Ross, 2014), wherein an individual blames and depreciates himself or herself because of the illness. An individual might also fear that disclosure will lead to stigmatisation which is called perceived stigma (Berg & Ross, 2014). Enacted stigma occurs when individuals are discriminated against based on their serostatus (Thomas, 2006).
The stigmatised and the non-stigmatised are social roles, whereby the stigmatised has less power and fewer resources than the non-stigmatised. The stigmatised is, by definition, seen as not quite human by the non-stigmatised. When someone is stigmatised, the non-stigmatised construct a cognitive stigma-theory that to them explains the stigmatised’s inferiority by accounting for potential dangers represented by the stigmatised individual or group. This construction helps justify the prejudice or discriminating behaviour directed towards the stigmatised individual (Goffman, 1963). Because the stigma’s negative associations are shared knowledge within society or a group the individual finds himself or herself a part of, the devalued status of the stigmatised is known by everyone. Therefore, both the stigmatised and the non-stigmatised are aware of the power differentiation between them (Goffman, 1963; Herek, 2002).
Reasons for stigmatisation may be many, but some factors may be particularly relevant to HIV-related stigma, as pointed out by Herek (2002). According to Herek (2002), HIV-related stigma may be further divided into two categories based on why the stigmatisation occurs, namely instrumental stigma and symbolic stigma. Instrumental stigma stems from a need to protect oneself from HIV and from fear of HIV as a potentially dangerous illness. Systematic stigma is a way to express stigmatisation towards other groups associated with HIV.
In an American study where gay men living with HIV (GMLH) were interviewed about HIV-related stigma, it was found that encounters with HIV stigmatisation were common (Berg & Ross, 2014). Internalised negative feelings concerning their serostatus seemed common amongst the interviewed participants. A study on GMLH in San Francisco, a city described as having a politically active community for ILH and as being accepting towards HIV, found that GMLH still struggle with stigmatisation (Skinta, Brandrett, Schenk, Wells, & Dilley, 2014). The distresses mostly associated with HIV related to relationships within the gay community (i.e., forming friendships and sexual relations and serosorting, or choosing partners based on one’s serostatus). A qualitative study among students showed that levels of stigmatisation were higher when a belief exists that HIV is related to certain groups (e.g., prostitutes, drug users, or homosexuals) than if it is believed that the illness could affect anyone (Zefi, 2013). ILH who are already members of marginalised groups may, consequently, experience double discrimination. They may be stigmatised not only based on their serostatus, but also for belonging to another socially devalued group (Bharat, 2001). It has been argued that seropositive gay men may be particularly affected by HIV-related stigma because their condition is seen as self-inflicted as a result of engaging in socially unacceptable sexual behaviour (Herek, 2002; Prieur, 1988).
There is little research on HIV-related stigma focusing on Norwegian GMLH. In a meta-analysis from 2010, no published qualitative articles with HIV-related stigma in Norway serving as the primary focus were found, even though HIV-related stigma was discovered to have been a theme in several other studies investigating other HIV-related phenomena (Olaussen, 2010). A literature search implies the amount of qualitative research on HIV-related stigma is still lacking. Nevertheless, several studies prove the importance of this research area. Reports on Norwegian ILH show a clear association between HIV-related knowledge and attitudes towards ILH (Mandal, Nuland, & Grønningsæter 2008). While there generally seemed to be sufficient knowledge concerning how HIV transmits, there is a troubling lack of understanding about how it does not transmit. The most problematic attitudes and the lowest levels of HIV-related knowledge were found among the eldest and the youngest of the participants. Furthermore, some ILH experienced stigmatisation, while others did not (Grønningsæter, Mandal, Nuland, & Haug, 2009). A more recent study investigating how HIV is perceived in the workplace (TNS, 2015) gives support to the connection between knowledge and negative attitudes.
In 2010, an internet survey on HIV and HIV-related issues was conducted among Norwegian MSM (Angeltvedt et al., 2012). The study showed that most ILH were satisfied with their encounters with the health system but the cause of unsatisfactory cases remained unclear. They found no correlation between experiences of physical or verbal harassment and having HIV. This tendency could reflect that respondents did not experience HIV-related harassment. However, the limited number of participants reporting a seropositive status, the phrasing of the question, and the fact that a person’s seropositive status is highly concealable may have influenced the results. At the same time, a correlation existed between HIV-related stigma and experienced harassment where those who had experienced more harassment scored higher on HIV-related stigma (Angeltvedt et al., 2012).
Objectives of the current study
There is little qualitative research on the subjective experiences of HIV-related stigma among gay men living with HIV (GMLH) in Norway. Additionally, the majority of the existing research tends to deal with the HIV community as one. Whereas this may be beneficial for a number of purposes, the importance for group-specific research should not be underestimated. Under such research, important differences between various groups diagnosed with HIV have been shown. Attempts to gain a better understanding of each group’s challenges and needs should therefore be a priority, especially for populations who find themselves at increased risk of transmission (e.g., MSM). Such prioritisation will be helpful in developing interventions that may reduce HIV-related stigma in this group and diminish negative effects caused by stigmatisation. It is believed that reductions in stigmatisation will work as a preventative measure against HIV transmission and thus encourage being proactive towards testing. The previous literature mainly focused on the negative experiences of stigmatisation. As such, little discussion has taken place in instances where stigmatisation is lacking or where potential positive experiences related to living with HIV exist. The aim of this study is to fill the gap of knowledge on how stigmatisation is experienced, perceived, and dealt with by GMLH in Norway. This objective will be undertaken through three subordinate research questions:
- What are GMLH’s experiences with social stigma related to their HIV-status and how and from whom do they receive negative prejudice?
- What are GMLH’s experiences with internalised HIV negativity and self-stigma, how do they perceive themselves as individuals living with HIV, and do they experience any positive aspects of the diagnosis?
- How do GMLH potentially deal with HIV-related stigma? What are their thoughts on disclosure or non-disclosure and how do they decide their own level of openness?
This qualitative study investigates the experiences and perceptions of HIV-related stigma among 10 gay men living with HIV (GMLH) and examines how they deal with potential stigmatisation. Through a qualitative design and in-depth interviews, participants were encouraged to reflect on their experiences and perceptions about the stigmatised phenomenon. The study relies on social constructionist epistemology and the data was analysed using Thematic Analysis.
In social constructionism, social reality is not seen as fixed or ‘out there’ but rather as constructed by people through social processes and interpersonal interactions (Rogers, 2011). According to social constructivism, the participants’ narratives are not merely objective recollections of happenings but rather representations of the participants’ own perception of these happenings. The researcher will also influence the findings as his or her reflections, attitudes, and more will affect his or her analysis of the data.
Participants were recruited through organisations working with individuals affected by HIV/AIDS and snowballing. Some participants received information about the study through written information that was distributed by the two organisations, both online and on paper, and through encouragement from the organisations’ staff to participate in the study. Other participants were approached through snowballing as participants and one lecturer at the University of Oslo introduced the study to other potential participants. The participants contacted the researcher by phone or email when they decided to participate in the study. There was no additional contact between researchers and participants than said contact and interviews. Because it was deemed more ethical for participants to contact the researcher, and because of the recruitment methods used for this study, it is not clear how many individuals within the intended group knew about the study. Moreover, participants were never asked where they learned about the study.
Participants consisted of 10 gay men on treatment for HIV/AIDS during the time of the interviews. All participants who took part in the study identified themselves as gay men. As men who have sex with men is a broader term covering a range of sexual orientations, it was seen as more appropriate to use the more specific, yet accurate, definition that was reported by the participants. In this study, the participants are therefore referred to as gay men living with HIV or GMLH. The age of the participants varied greatly and ranged from mid-20s to 50s, and the amount of years living with the HIV/AIDS diagnosis varied from less than five years to more than 20 years. This variation is important to note because knowledge about HIV/AIDS and the medical prospects associated with it has changed a lot since the 1990s, when some of the participants received their diagnosis. Seven of the participants were born in different parts of Norway and three were born in other European countries. Some Norwegian participants had lived abroad for some time when they received their diagnosis and some continued to do so after their diagnosis. The participants were living in Norway and were available to participate in the study in Oslo at the time of the interviews. Due to the limited population of GMLH, further information regarding each participant’s occupation, city of residence, or other geographical details are not provided. All names, ages, and other identifiable information have been changed to fictional information to preserve the anonymity of the participants in this study.
All 10 interviews were carried out August through October 2016. Two interviews took place at an office provided by HIVNorge. All other interviews were carried out in an office located at the Psychological Institute at the University of Oslo premises. Participants received information regarding participation and the study itself, both orally and in written form. All interviewees signed a consent letter to confirm their willingness to participate and to ensure their rights as participants. The interviews were conducted by one of the researchers and an interview guide was used to ensure the inclusion of relevant topics. Only the researcher and one participant were present in the room during interviews. Each interview lasted between one hour and two hours and 40 minutes. The interviews were recorded for further transcription and recordings were deleted within two months of each interview. Transcription was done through orthographic transcription by the researcher who conducted the interviews. Additionally, the researcher noted down initial thoughts both during and after the interview.
Braun and Clarke (2006) have developed guidelines for conducting successful TA, where the analytical process consists of six stages: 1) familiarisation; 2) generation of initial codes; 3) searching for themes; 4) reviewing of themes; 5) defining and naming themes; and 6) producing the report. These stages, with complimentary guidelines, were used throughout the analytic process of this project. The data was handled using the “cut and paste” method for analysis. After analysis, transcripts were edited to ensure readability for the reader. The extracts included in this paper were translated to English and edited to increase readability.
The study has been ethically evaluated and approved by the University of Oslo’s Department of Psychology’s internal research ethics committee and by the Data Protection Official for Research (NSD; project number: 48821). Great care has been taken to ensure a high ethical standard throughout the entirety of the project.
Four themes were identified as being related to how it is for gay men living with HIV (GMLH) to live with a stigmatised diagnosis: 1) encountered stigma; 2) living with a secret; 3) self-perception; and 4) responsibilities.
Today, HIV is not a visual attribute, so for others to know about the diagnosis it must be disclosed. Participants described a range of experiences regarding others’ reactions towards their diagnosis. Both positive and negative experiences were provided from a range of different arenas, people, and contexts. Although all participants described one or more negative encounters they believed resulted from their serostatus, the majority described predominantly positive experiences of others’ reactions to their diagnosis. The extent of negative experiences varied. James had positive experiences from telling his friends about his diagnosis: They’ve only been concerned with me. ‘How are you?’ and ‘Are you all right?’ and ‘Is there anything we can do’ and so on. So, I’ve had many that have handled it in a very good way.
Some factors often mentioned when describing good reactions others were when the informed showed interest in their wellbeing and did not treated them differently based on their diagnosis. As will be demonstrated, James experienced the reactions from his family as being very different from the reactions from his friends:
One of the very early things they asked about (was) ‘What about Matthew? But what about my husband? Is he also infected?’ ‘No’, I said. ‘He’s not infected, so he’s HIV-negative’. ‘Really? Did he know about it when you first started dating and when you got married and everything?’ ‘Yes’, I said. ‘(He) knew from the very first day we met’. ‘Wow we take our hats off for him’, they said. And I’ve thought a lot about this afterwards. There was no one that took their hat off for me. They took their hats off for him. It really was quite revealing. About what kind of attitudes they have towards that kind of diagnosis. In that way, at least. Imagine that he would want to be with me. Imagine that he would want to marry me then, when he knew I was infected.
The main difference between these reactions may be traced back to senses of value. Whereas James’ friends showed concern about him, his family displayed greater concern for his partner, thereby emphasising the perceived gap in value between the two partners based on their serostatus. What may have been perceived by his family as being supportive, was perceived by James as signifying their altered perspective of him as an individual living with HIV.
Some participants reported being open about their diagnosis at their present workplace, while others had not told their superior or colleagues about their diagnosis. Some participants, like Barry, did not believe that his diagnosis affected his work situation.
When it comes to work it’s never been an issue, so to say. Again, you don’t know when you apply for a new job if you are put away because they think, ‘Oh no, we don’t want a chronic working with us’ or ‘It may be unpleasant. We work with people here’. So it could be something, but anyway, when they talk in interviews and in prior jobs that I’ve had, it’s never been a subject that’s been a problem.
Not all participants had the same experience. Liam, a prior salesman on his way up the corporate ladder, experienced his diagnosis resulting in severe consequences.
So, I was just called in to my boss five minutes before I’m heading off to a department meeting, and I’m informed that I’m losing my position as leader, because she didn’t see any future considering I had the illness I had. And then my world fell apart.
Due to medical treatment and check-ups, all participants had some level of contact with the health system (The Norwegian Medical Association, 2016). While most participants predominantly seemed satisfied with the treatment received from healthcare professionals, some participants were unsatisfied with aspects of their treatment in the healthcare system. Some of the factors mentioned when describing negative experiences with healthcare professionals were being treated differently than other patients, being asked invasive and unrelated questions, top-down attitudes from general practitioners (GPs), lacking information regarding treatment, nervous or anxious healthcare workers, exaggerated acceptance (resulting in invasion of privacy), little psychological follow-up, and in other ways showing an incapability to act on the patient’s needs. Jacob described his meeting with healthcare workers when receiving the diagnosis:
Because you are so grateful no matter what you get [in the way] of support in that kind of situation. So, you think later, ‘Well, maybe not so good’. Because she asked me about: ‘But didn’t you expect that x and x would yield positive results?’ I said, ‘No, I absolutely did not’. Then: ‘No, but what I was thinking about was with the amount of sexual partners you have had’. And she asked me if I’d had feelings for every person I’ve had sex with, which is completely irrelevant. Doesn’t have anything to do with anything.
The stigma situation in the gay community was described by the majority of the participants as being different from that in the rest of society. Some experienced it as a divided community when it came to attitudes towards individuals living with HIV. Mark was one of the participants who explained this division:
I feel that there are two groups there. Because there are many of those who get really ugly. And that is quite strange really when you think that you are in that clique of people who really should take care of each other the best [they can] but don’t. That is one of the things that amazes me the most, really. That gay men are the worst. I mean, the most evil-minded group I know towards the HIV-positive. It can kill you socially, depending on who you hang out with. And then there’s the group that is well read and think, ‘Oh well, but it’s fine’.
While some participants experienced no difference in attitude between the gay community and the rest of society, most defined the gay community as where they met the most stigmatisation. That the stigmatisation against seropositive gay men is experienced as worse among their own might be seen as a paradox, especially since this particular group is at increased risk of having HIV being transmitted to them. James explained what he believed to be the reason behind the stronger sense of stigmatisation in the gay community.
I think that maybe it’s got something to do with gays living more with a kind of threat surrounding that transmission. Because it is overrepresented in our community. So, it is this kind of threat that you live with all the time. And I think that when you suddenly stand in front of someone [who is] HIV positive, then suddenly the virus gets so close and so alive, so [it] seems more real. Personified. And then I think that a lot of people back off, because it’s simply too uncomfortable. The threat that, in a way, is just there and up there floating, it gets so near and so real and so dangerous when it’s right there in front of you. Especially if I’m in a setting where you might wanna think about having sex.
Olaussen (2010) categorised experiences of HIV-related stigma into eight themes: 1) shame; 2) blame; 3) fear of transmission; 4) prejudice/stereotyping; 5) social avoidance/isolation; 6) breach of confidentiality; 7) meeting with the health sector; and 8) openness/secrecy. All these categories were mentioned by one or more participants in this study, but other factors, such as rejection, discrimination and loss of opportunities, were also mentioned.
Living with a secret stigma and the matter of disclosure
Growing up gay had influenced the experience of being diagnosed with HIV for many participants. Participants compared this event with being thrown back into a second closet. For many, the recurrent position of being closeted may be experienced as a setback, wherein they have to re-experience the concerns related to living with a stigma. Liam said: You get tired of living a double life. Finally, you have come out of the closet, and then you end up in a vault instead. It’s kind of hard when you’ve lived all your life and finally come out, and then you kind of end up in something worse. The participants referred to coming out of the closet as a gradual process as opposed to a onetime event. Coming out is a long process, so the first person I came out to was a friend when I was 11 I think. And since then it’s been a process, Jacob explained. The closet metaphor has been found in other studies as well. In an American study, researchers found that most participants referred to their diagnosis as a second closet (Berg & Ross, 2014). Maybe because of the similarity between living in the two closets, participants seemed to agree that experiences that result from being gay can have an influence on the experiences of living with HIV.
Well, as a gay man, I believe you have a kind of existential experience of having hit the wall regarding central expectations towards life, which is very transferrable. Coming out as gay. Coming out as HIV positive was quite, as I’ve said, transferrable. – Sam
There are many reasons for ILH to not disclose their serostatus, all of which are typically linked to potential negative consequences. Reasons may be fear of stigmatisation and discrimination, fear of disruption of close relationships, protecting oneself or others from undesirable emotional implications, loss of privacy, or other undesirable changes that may be caused by revealing one’s stigma (Greeff, 2013, p.85). Nevertheless, several participants described living with a secret as burdensome or exhausting. I’ve been carrying this for a long time. And it’s also a burden to carry around, you know. It is. So, it’s wearing us down, James said. Non-disclosure is linked to a number of psychological limitations, such as shame, doubt, worry, fear, futility, anxiety, depression, anger, and hurt (Greeff, 2013, p. 87; Grønningsæter et al., 2009).
A contrast to stories emphasising the burdensome nature of a double life were those describing the individual’s secret as creating little to no personal concern. At the far end of the scale is the perception of secrets as a positive addition to life:
I think all people should have a secret that they keep for themselves. I believe it gives a nuance in life… That you also can take with you. It doesn’t have to be something negative. Why the hell does everyone need to know everything about everyone? And I think it can be good to have something you don’t tell everyone. – Adam
Some participants painted a picture of being little affected by living with secrets, whereas others described great relief after sharing their burden.
The biggest high I’ve ever had [was] where I was standing in front of a hundred faces as myself. Saying my name and ‘I’m living with HIV, and today you’ll get to hear my story’. I mean, I thought it was so fantastic to let it go. Ah, finally gone. – Oliver
As described by Oliver, the emotional implications of disclosure may be substantially positive. While non-disclosure can prevent stigmatisation and discrimination, disclosure is viewed as the only way to receive social support for the HIV-related challenges ILH may encounter. Other reasons for disclosing can be feeling stronger, facilitation, participation in HIV-related work, developing or improving close relationships, receiving understanding, feelings of moral obligation, a change others’ perceptions, or fulfilment of personal needs (de Vries, Koppen, Lopez, & Foppen, 2016; Greeff, 2013, p. 85). Disclosure is linked to an increased quality of life compared to individuals who have not disclosed their diagnosis (Grønningsæter et al., 2009).
All participants in this study reported some level of openness. All had therefore disclosed their diagnosis to someone. The level of outness differed greatly between participants. Nevertheless, the participants’ narratives reveal that the pace and process at which they had reached their current level of openness at the time the interviews took place differed greatly.
It is clear from the participants’ narratives that finding a working strategy for disclosure is complicated. As said by Liam, I can’t really seem to find the solution. There are limitations no matter how you try to look at it. Serosorting is one of many strategies mentioned to avoid disclosure. For instance, for a while, I only had sex with others who were HIV positive. Just to not have to deal with it. But if you do that, your options become very limited, William explained.
Several participants portrayed telling intimates and sex partners as one of the biggest concerns when it comes to disclosing one’s diagnosis. It’s hardest when you meet someone. Because you don’t know when to say it. When is the right time? This thing about timing. I mean, everything about it is so damned difficult, Mark said. Some had negative experiences themselves which seemed to demonstrate where some of their worries regarding disclosure in dating and sex situations originated from. Additionally, it was said by several ILH that they had heard stories by others which, to them, confirmed that negative consequences may follow disclosure in such settings. We do not, however, know how common such rejections are or what has the biggest effect on anticipated stigmatisation in such settings. Like Mark, timing of disclosure was brought up by several participants. During casual sex, there may be less at stake than in romantic relationships. Still, the partner will often not have gotten the opportunity to create a sense of closeness that may decrease the chance of a negative reaction. Jacob explained another reason why disclosure to sex partners may be particularly complicated:
But what is there to tell? I mean, I can tell you that I have HIV, but there’s no danger to you. By that, I’m sending you the message that you have to say something before you have sex, and then they think something like, ‘Yeah, but he’s most likely telling me this because there’s a reason. That there’s some kind of risk that I’ll get HIV’. First, you create that reaction, and then you’re supposed to create the reaction that there’s no risk. It’s really strange.
The complicated nature of the disclosure situations towards sex and dating partners in particular seemed to be a source of worry among several participants. Concerns could often be imputed to fear of negative consequences (e.g., rejection, no sex, killing the mood, losing control of the information, being blamed by sex partners for not telling them and putting them at risk, breaking perceived moral codes, and fear of being hurt). Some participants reported finding love harder, less sex, and fewer instances where they have chosen to bring partners home after a night out. They related all of this to issues of disclosure and fear of stigmatisation. It is important to note that this description did not fit all participants; some participants reported more sex and little worry regarding disclosure in such settings.
Disclosure in dating situations may also lead to positive outcomes. Like Jacob said, It can also be better, because it does really become more intimate and more sincere when it’s about a matter like that, and it can become a very, very nice encounter. Several participants described how disclosure can create trust within relationships.
Self-perception and self-stigma
Whereas an incorporation of HIV as part of one’s identity seems to be clear, how this is done and how it is dealt with seems to differ among participants. Caleb considered himself relatively open about his diagnosis but remembered previously having two profiles on Gaysir: one regular profile and one HIV profile. His descriptions imply a divided identity. He talked about this in relation to himself and others.
I just felt very conscious about having that HIV profile, and then I had the Caleb profile. And that, to juggle those two, it’s mentally demanding. Physically as well. That wasn’t how I wanted it. But I also see many at my own age and younger too… really hiding it. I mean, they choose to hide it. I couldn’t have lived like that. It must be terribly exhausting to walk around and pretend something. To play that game with two cards. And wearing those masks, you know.
This extract suggests an adaption of HIV as part of one’s identity because keeping the diagnosis hidden is perceived as not being able to fully be oneself. Pretending to ‘pass’ as ‘normal’ is also compared with wearing a mask, further illustrating the nature of a hidden identity.
One participant, Liam, described how he felt having HIV connected him to a sexually reckless group of individuals who are very unlike himself.
I wanna find someone I can live my life with, and a lot of people with HIV, and who are in these (online) groups at least, are only after living out quite crazy sex fantasies, more or less. It’s a group I don’t want to be a part of, so to say. The few people [who’ve] got it, where you’re able to arrange a date, are both looking for open relationships or something else.
There are at least four observations to pay particular attention to in this extract. One is the portrayal of the stereotypical view of GMLH. Two is that the characteristics are portrayed as being of a negative nature. Three, although Liam is a GMLH himself, his experience is that the general population of GMLH are different than he is. Four, it is clear that the perceived behaviour of other GMLH has consequences on his behalf by complicating the search for a suitable partner. The tendency to prescribe negative and stigmatising attributes to other ILH, but excluding oneself from the same negative attributes, was also observed in another study investigating GMLH (Murphy, Hevey, O’Dea, Rathaille, & Mulcahy, 2016). The researchers noted that in such discourse, other GMLH may be perceived as the rightful targets of stigmatisation. Still, this comparison with other GMLH may imply an adoption of a new identity based on living with HIV, albeit one that is perceived as different from what they believe is typical for other ILH. These extracts may show that commonly known associations and stereotypes may create a conscious attempt to distance oneself from these associations.
Several participants described either having had personality changes after receiving the diagnosis or viewing HIV as being a part of their whole identity. Some participants seemed to be concerned with not wanting others to define them by their diagnosis, emphasising that they desired to be ‘more than HIV’. Like Oliver said, I’m living with HIV, but I am not HIV positive. I don’t wanna be the diagnosis. A few of participants perceived HIV as a part of their identity but seemed to consider it at the same basis as their other attributes. I’ve never understood what they mean by ‘I’m more than HIV’ or ‘You’re not just HIV’. No, of course not. But I’m that too. So, what’s the deal? Yes, I am HIV positive and not just that of course. But just as much, Sam said.
Even though several participants described generally being fine with who they are today, at some point after receiving their diagnosis, most participants reported negative thoughts about themselves in relation to their diagnosis. (One participant referred to this negativity as a medical side effect because suicidal thoughts ceased when changing medications.) I just thought I was disgusting, infectious, dirty, Oliver explained when talking about his relationship in previous years with his body and sexuality. ILH may internalise society’s stigmatising views of HIV, a tendency which in turn results in negative views of self (Berg & Ross, 2014; Herek, 2002; Lewis, 1998; Lee, Kochman, & Sikkema, 2002). Several informants described self-stigma as the biggest stigma of all.
I think self-stigma is the biggest stigma. Expected stigma is number two. And the experienced stigma… rarely. But stigma, yes. But it lies within us. Or in me who lives with HIV. Has been the thing that has affected me the most. – Oliver
Internalising negative attitudes may potentially have severe consequences on self-perception and behaviour, as narrated by Oliver:
[I] Struggled a lot mentally. Didn’t want to touch people anymore. Hug. I mean, my mom wasn’t allowed to touch my clothes. Tried taking my life several times. I started cutting myself. A totally destructive lifestyle. Got in contact with an HIV organisation. O, was forced to the HIV organisation by the mental institution. Thank god.
Still, HIV was not portrayed only negatively by the participants. On the contrary, even though all participants seemed to agree that a life without HIV would be preferred, several participants described being little affected by HIV and stigmatisation, and all participants could describe something positive about the diagnosis when asked. A few described HIV as a positive change in their lives, often based on personal growth resulting from getting the diagnosis.
I think it’s a big liberation project. Because HIV has basically contributed to, for me, living with my sexuality with more openness and [has] made me more self-accepting than I’ve ever been. So to me, HIV isn’t an illness. I think it’s a liberation. – Sam
The issue arises when the views on HIV are predominantly negative and when participants pass these negative views onto their self-perception.
Participants mentioned a range of factors that may be preventative of negativity or that may assist in improvements in self-perception. Protective factors mentioned included adapting a survivor identity, social support, gaining information and knowledge about HIV and how it may be to live with HIV, gaining positive experiences, talking about it, and personal factors such as acceptance and positive attitudes. As Mark explained, much is tied to self-value: So, I guess that’s what it’s about, that dark period. To accept this. But you are a fantastic person. So, it’s OK.
Time was mentioned as a contributing factor. The majority of the participants generally reported improvements in their self-perception with time. As William said, I just needed some time to let it settle a bit. This is consistent with the findings of Lee et al. (2002), where individuals who were rated high on self-stigma had been more recently diagnosed than those low on self-stigma. What caused this correlation is not evident but possible explanations may be greater social support following disclosure, having gained more positive experiences, or having gotten more experienced in dealing with the diagnosis, thus decreasing ILH’s negative sense of self.
A sense of responsibility
The participants talked about their perceptions of their self-assumed responsibilities as well as the responsibilities they believed are expected of ILH. Several participants felt that seronegative individuals see their seropositive status as a valid reason to avoid their own responsibilities regarding their own sexual health. According to The Norwegian Penal Code, it is illegal to transmit or put others at risk of transmission from a dangerous contagious disease, except in cases where a spouse or cohabitant has agreed to be exposed to such danger (The Norwegian Penal Code, 2009, §§ 237-238). Fear of transmission and potential legal prosecution after non-disclosure therefore seem to have been important reasons for disclosure. In 2016, new guidelines were implemented stating that individuals diagnosed with HIV are recommended to start treatment as early as possible (The Norwegian Medical Association, 2016). With successful treatment, patients are considered safe from transmission. Therefore, the legal consideration may become less relevant in ILH’s decision making on whether to disclose. Several participants described a Norwegian court case as a turning point regarding their legal responsibility of disclosure towards sex partners. Adam explains:
It was a trial in Stavanger. (It) dealt with a man who had abused a minor. And where the parents then went to court against him for having exposed their child to HIV transmission. But what one of these individuals (Was it the batsman? Was it the attorney? Or whomever it was.) became interested in during the trial was: When can a woman can give birth to a child without transmitting the virus to her baby? When can a man make his wife pregnant without transmitting the virus? And then you’re going to trial to be prosecuted for transmission? Nonsense! To have used protection, that is to take the medications every day. That is what we must dare to say. The medications work. The trial in Stavanger says so.
This case was perceived as evidence showing that the current medical treatment is working so sufficiently that, if on it, one would not be prosecuted or receive formal sanctions as a result of nondisclosure or transmission. As illustrated by Barry, issues of disclosure and sex seem to move from a mandatory responsibility to a decision made based on other means:
So there are some things that have changed during the time that I’ve had the HIV diagnosis. During the first years, I didn’t get any medications and had, like, yea, quite a lot of anxiety when it comes to infecting someone. So, what you’re actually left with now is kind of that ‘No, it’s no problem’.
Still, participants described a reluctance in the healthcare system to confirm the effects of the medical treatment, a tendency which participants said contributes to maintaining social stigmatisation and unnecessary expectations on their behalf. Adam expressed that the reluctance to affirm the medical effects of ART, despite evidence showing no transmission during successful treatment, has resulted in decreased trust in the medical system.
The group they say is spreading HIV is the group that cannot spread it. What are they talking about? They are accusing us for something we cannot do. They lose their credibility. In that group, they say they’re not stigmatising; that is what they do. And they have stigmatised us so far [off to] the side. I’m not even interested in coming back.
Although only a few participants reported this relationship between a reluctance to endorse the medical effect and the perceived trustworthiness towards medical staff in general, it may still be an important finding. Because patients are fully dependent on medical staff to detect HIV and enable them to adhere to their treatment, even if only a few individuals avoid contacting medical staff, it may have consequences for HIV testing, medical adherence, transmission, and physical health. While the legal concerns of transmission seem to have declined, a dominant concern was the fear of inflicting psychological harm on others. Oliver’s narrative portrayed many years of secrecy and worries of becoming a burden to others that exceeded his fears of transmission. I was afraid of worrying others with my condition. That I was gonna be yet another burden for them. The biggest burden was obviously on me, but I was very concerned about not burdening others.
Besides feeling the responsibility to not cause discomfort in others, a large number of participants described a personal responsibility to contribute to HIV-related work. In contrast to other responsibilities, the responsibility to help others in the same situation was predominantly described as positive or as a responsibility they were willing to take. Oliver, who was active in HIV-related work, explained:
I feel that it’s important for me to spread knowledge about something that has been affecting my life in such a major way. To better and improve the circumstances for others who get the diagnosis. So, there it is some responsibility. But it’s positive.
Only Adam positioned himself negatively to contributions made by ILH in relation to HIV-related work:
Freddy Mercury came out towards the end. Does that help? He looked terminally ill and dangerous. That doesn’t help much, does it? It’s scaring the shit out of people. A lot of those. It’s wrong. Because in their heads, they’re not coming forward. They’re selling themselves. They want PR. It’s the wrong people. It quickly becomes a cliché. So, it must—it must go its course. And then we must have some fools like you who take care of it. It must be someone who is genuinely interested in it. Genuinely interested.”
For many, engagement in HIV-related work seems to signify more than just a mandatory responsibility but also an opportunity for increased self-worth. It’s a responsibility that I’ll gladly take. Being strong enough to carry that responsibility. It does provide you with a good feeling about self. So, it gives you a feeling that works as a contrast against that infection, Sam says.
Even though it is clear that engaging as a resource can have important positive effects for GMLH, it is not without risk. Some participants, including Jacob, have found it hard to find the balance between their own capacity and workload.
Because there is no alternative for not engaging myself at all. But how am I supposed to interpret my body, or how am I gonna know what I can do or not do? Because I don’t know myself. But then I came to the conclusion that I’ll just try and take it easy and stuff. And then I started to work at the HIV organisation, and it’s going great.
This study has shown that gay men living with HIV (GMLH) may experience stigmatisation through negative encounters, through involuntarily living a double life or keeping secrets, through responsibilities following their diagnosis, and through self-evaluation and self-stigma. Large variations were found between the amount of reported stigmatisation, whom GMLH receive stigmatisation from, how that stigmatisation was experienced, and how they dealt with it.
We have seen that, despite medical improvements, stigmatisation still exists, although not all report stigmatisation as a personal issue. In our interviews, the gay community was generally rated as the arena in which most stigmatisation was experienced and a division in the gay community became apparent. This observation has also been revealed in other studies (Berg & Ross, 2014; Chong et al., 2017). As suggested by participants, this division may be due to fear among gay men of contracting HIV and there seems to be a need to increase knowledge within this community. Awareness appears to be lacking on the fact that those receiving ART have an undetectable viral load and that this tendency leaves GMLH sexually non-infectious. This lack of awareness is described by participants as contributing to uphold at least some of the complications of disclosure and stigmatisation found in gay communities, where GMLH seem to still be viewed as poisonous and dangerous among some individuals.
Although further research is needed to confirm this statement, it is possible to think that healthcare professionals’ discourse on treatment and transmission might, to some extent, contribute to maintaining the notion of individuals living with HIV (ILH) as potentially being dangerous individuals to be around. As pointed out during the interviews, such an inaccurate portrayal may have an especially great effect on situations like dating, sexual encounters, and interactions in the gay community in general, where transmission may be of greater concern. The fact that some people perceive healthcare professionals as reluctant when it comes to confirming the effectiveness of ART is something that must be taken seriously. Distrust against the health system may additionally result in a reluctance to seek treatment. An important part of prevention will therefore be for health professionals and others in similar lines of work to maintain a terminology and communicate HIV and ILH in terms that are consistent with the present medical regime.
Raising awareness of the non-contagiousness of HIV when on successful medical treatment could be a way to prevent ILH from unnecessary fear of transmission and might reduce fear in others. Similarly, according to Persson, Ellard, and Newman (2016), the preoccupation on serodiscordant couples in the context of risky sexual behaviour and risk management in the research and literature might also be unfortunate for ILH. The authors emphasised that this kind of research provides useful and important information but that the unnuanced picture and lack of attempts to challenge the so-called sero-divide is contributing to upholding the notion of ILH as unsafe and unwanted partners for seronegative individuals. A Norwegian survey (TNS, 2015) showed a lack of knowledge regarding HIV in the general public as a whole. The survey and other research have shown that more HIV-related knowledge predicts less stigmatising attitudes towards ILH (Mandal et al., 2008; TNS, 2015). An interesting finding is that fear of HIV seems to increase with age, with the exception of those younger than 30 (Mandal et al., 2008). Despite being the generation that has primarily been sexually active during a time ART medication was available, this younger generation seems to be less knowledgeable compared to their older peers. As a result, stigmatising attitudes in this age group are increased. Accordingly, there seems to be a need for more knowledge about HIV, such as how the virus transmits and, just as importantly, how it does not transmit, the effectiveness of today’s treatment, and what it means to live with HIV.
Based on the narratives, there seems to be an integration of HIV into personality, which in turn appears to be central to how encountered stigmatisation is experienced, how ILH perceive themselves, and how they deal with stigmatisation. With no previous experience on what it means to be an ILH, they must familiarise themselves with a new identity. The development of a new identity involves evaluations of self with the new stigma, and this re-evaluation is largely influenced by society’s views and attitudes towards ILH. As someone living with a stigma, ILH are aware of the stigmatising view of others and of the social devaluation of their new identity. As we have seen, the internalisation of society’s negative views may have major implications on disclosure, how stigmatisation is perceived, and how it is dealt with. At the same time, ILH will have to figure out how their new identity will be met by others, but how others will respond cannot be known before disclosure. The challenge then is to navigate and find strategies on disclosure that fit ILH’s perceived moral obligations and minimise harm towards self or others.
An important finding is that the participants generally rated the psychological aspects of living with HIV as more exhausting than the medical or physical consequences. However, it is clear that psychological aspects of living with HIV still represent an issue among some GMLH. A Norwegian survey on ILH summarises: An image is formed that it is, in large part, on the psychological and mental level where ILH have the greatest needs. Whilst a large majority rate their own health as good and many express positive experiences with the use of medication … there is still a great need for services that look after their psychological needs (Grønningsæter et al., 2009). Some of the psychological issues the participants refer to are the anticipation of stigmatising attitudes among others, encountering stigma, and the negative view they may have about themselves. Self-stigma was, in fact, rated as the worst stigma of all by some. Self-stigma has been raised as an issue in several qualitative and quantitative studies investigating stigmatisation among ILH (Berg & Ross, 2014; Pariya et al., 2017). As many as 38% of participants in the 2009 Fafo-report say they feel contagious and therefore distance themselves from others which might contribute to the high prevalence of isolation felt amongst ILH (Grønningsæter et al., 2009). Self-stigma is a barrier for disclosure (Lee, 2002) and may thus prevent both social support and positive encounters that can contradict expected stigmatising attitudes ILH believe others inhabit towards them personally and others living with HIV. When disclosing, self-stigma is likely to increase sensitivity to stigmatisation from others simply due to awareness of the differentness (Chesney & Smith, 1999).
We need to find ways to improve self-perception and decrease anticipated stigmatisation which seems to be even more common than encountered stigmatisation. The participants provided several factors of resilience, including self-definition, personality factors, social support, HIV-related knowledge, and positive experiences. Furthermore, it seems clear that psychological follow-ups will be important in the treatment of those who have been diagnosed with HIV. That is because the psychological implications of living with HIV, as opposed to physical or medical concerns, were rated as the most exhausting and invading issues resulting from living with HIV. In the 2017 and 2018 editions of the Norwegian guidelines for medical treatment of ILH, the psychological aspect of treatment and follow-up has been more clearly specified as part of ILH consultations (The Norwegian Medical Association, 2016, 2017, 2018). Earnshaw, Lang, Lippitt, Jin, and Chaudoir (2015) found that resources in terms of social support, adaptive coping, and HIV identity centrality can be effective against anticipated stigmatisation but have failed to produce a resilient effect on stress resulting from enacted stigmatisation. This situation suggests that different measures are needed to tackle the complexity of HIV-related stigma. Interventions aimed at preventing HIV-related stigma should therefore have multiple focuses: 1) to decrease enacted stigmatisation by targeting the general public, the gay community, and the health system; and 2) strengthening personal resources in individuals living with HIV to target anticipated stigmatisation and self-stigma.
Because this study investigates the perceptions of 10 GMLH, more qualitative and quantitative research will be needed to further investigate correlations and how common these experiences are. More in-depth research should focus on the positive aspects gained by living with concealable stigmas. It should also investigate what contributes to positive and optimistic attitudes towards the stigma and the future among those living with HIV. There seems to be little research on the potential positive aspects of living with secrets or on what characterises those individuals holding these attitudes. This oversight holds potential for interesting future research.
There are several limitations to this study that should be considered. As is typical for qualitative research, the study is in no way intended to be representative for all GMLH. Still, it is worth reflecting on how all participants were willing participants who were available in the Oslo area, and all were recruited through HIV-related organisations. It is therefore even more unlikely to be representative in relation to GMLH from other demographic backgrounds. Due to the sensitive nature of the subject, and because many in this population group would like their identity to remain hidden, it is also likely that those who are less open will be less likely to participate. Additionally, this study consisted of only 10 participants. A higher number of participants might have provided a wider range of narratives. Nevertheless, we feel that our participant group provided a good variety of narratives. We also feel that a certain saturation of the data was achieved, as similarities between narratives were easily observed at the later stages of the interviewing process.
Keeping in mind that because the researcher is a white female in her 20s, the data may have been influenced in several ways. Not being a member of the same reference group as the participants may have prompted communication and may have increased acceptance for further questions. Some participants seemed to keep in mind the non-belongingness of the interviewer and thoroughly explained aspects of the gay community that may be commonly known among gay men but unknown to outsiders. In this way, the visible differences between the interviewer and the participants may have been an advantage.
This study has investigated the experiences and perceptions of 10 Norwegian gay men living with HIV (GMLH) on HIV-related stigmatisation. One should be careful about drawing generalised conclusions based on the experiences and perceptions in such studies. Nevertheless, based on the participants’ statements, some careful conclusions can be made. First of all, the study has been able to show that a great variety of experiences and perceptions about HIV-related stigma exist among gay men living with HIV. To view HIV-positive gay men as a homogenous group with similar needs will therefore be limiting, in both medical and social settings.
Some gay men living with HIV do experience stigmatisation and prejudice.
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