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Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach a
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Matthew D. Skinta , Benjamin D. Brandrett , William C. Schenk , c
Gregory Wells & James W. Dilley
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Alliance Health Project, Department of Psychiatry, University of California, San Francisco, San Francisco, CA, USA b
School of Medicine, University of Pittsburgh, Pennsylvania, Pittsburgh, PA, USA
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Private Practice, San Francisco, CA, USA Accepted author version posted online: 04 Dec 2013.Published online: 07 Jan 2014.
To cite this article: Matthew D. Skinta, Benjamin D. Brandrett, William C. Schenk, Gregory Wells & James W. Dilley (2014) Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach, Psychology & Health, 29:5, 583-597, DOI: 10.1080/08870446.2013.871283 To link to this article: http://dx.doi.org/10.1080/08870446.2013.871283
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Psychology & Health, 2014 Vol. 29, No. 5, 583–597, http://dx.doi.org/10.1080/08870446.2013.871283
Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach
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Matthew D. Skintaa*, Benjamin D. Brandretta, William C. Schenkb, Gregory Wellsc and James W. Dilleya a Alliance Health Project, Department of Psychiatry, University of California, San Francisco, CA, USA; bSchool of Medicine, University of Pittsburgh, Pennsylvania, Pittsburgh, PA, USA; c Private Practice, San Francisco, CA, USA
(Received 25 June 2013; accepted 25 November 2013) Objective: HIV-related stigma is a major driver of poor prognosis for the treatment and reduced spread of HIV. The present article provides a qualitative analysis surrounding various themes related to stigma and shame as a result HIV. Design: Eight gay men recruited from a community HIV clinic contacted the researchers in response to a study involving participation in a structured, eightweek group intervention for HIV-related stigma. Following this group, three men took part in open-ended interviews about their thoughts and experiences. Methods: Interpretative phenomenological analysis was used to examine the participants’ experiences surrounding shame and stigma related to living with HIV. Results: Three superordinate themes were identified: social support and the disclosure of serostatus, stigma associated with serosorting and attempts to negotiate a spoiled identity. Conclusion: In San Francisco, a city with a great deal of acceptance surrounding HIV and a large, politically active community of persons living with HIV, gay men continue to struggle with disclosure and stigma. This stigma may be an unexpected result of a high degree of HIV testing and attempts by both HIV-positive and negative gay men to practise serosorting. Keywords: HIV; attempting to negotiate a spoiled identity; disclosure; acceptance; stigma; shame; IPA; gay
Introduction HIV-related stigma is associated with a cascade of harmful outcomes for persons living with HIV/AIDS. HIV-related stigma has been found to markedly reduce the well-being of persons living with HIV/AIDS, particularly through its association with reduced medication adherence, reduced contact with medical providers (Sayles, Wong, Kinsler, Martins, & Cunningham, 2009), and reduced disclosure of HIV status resulting in a greater likelihood of serodiscordant sexual partners (Poindexter & Shippy, 2010) and a restricted social support network (Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003) of persons knowledgeable of their serostatus. Further, recent research has largely focused on international and cross-cultural examples of stigma (Genberg et al., 2009, 2008; Maman et al., *Corresponding author. Email: [email protected] © 2013 Taylor & Francis
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2009). A multi-country study of HIV-related stigma in Africa, for instance, noted that quality of life diminished over time in the presence of stigma, regardless of health factors (Greeff et al., 2010). Research in China supports findings that social support mitigates the impact of stigma, though it is unclear whether the stigma is a barrier to support or is a response (Rao et al., 2012). Individual interventions for the likely effects of HIV-related stigma, such as adherence issues, largely target mental disorders (e.g. depression; Safren et al., 2009). For these reasons, the experiences of sexual minority men living with HIVrelated stigma and shame are still poorly understood. Sexual minority stress (SMS) is a term used to describe the psychological stress experienced by sexual minorities (gay, lesbian and bisexual people) who live in a predominantly heterosexual world. As noted in a recent Institute of Medicine (IOM) report, minority stress has established itself as the dominant lens through which the impact of stigma on sexual minorities might be understood (IOM, 2011). SMS considers the full array of proximal and distal stressors as necessary to understand an individual’s experience (Meyer, 1995). SMS is the additive effect of four components: internalised stigma, such as internalised homophobia (internalised negative attitudes and beliefs toward homosexuality); expectation of stigma; concealment of one’s sexual identity and discriminatory events (e.g. violence, bullying and rejection) (Meyer, 2003; Meyer, Schwartz, & Frost, 2008). For many gay and bisexual men, SMS stressors are present prior to an individual’s awareness of his sexuality, since many adult gay and bisexual men report memories of being bullied or stigmatising experiences in early childhood due to perceived gender atypicality (Plöderl & Fartacek, 2009). Historically, most studies have only focused on the role of internalised homophobia. One recent study suggests that discriminatory events and the expectation of stigmatising treatment are the most salient attributes (Kuyper & Fokkema, 2010). For reasons not clearly identified, SMS consistently exerts a greater impact on the mental health and well-being of HIV-positive gay and bisexual men than HIV-negative men (Cochran & Mays, 2009). This may be due, in part, to the synergistic effects of managing both SMS and HIV-related stigma. HIV-related stigma places an additional psychosocial stressor upon gay and bisexual men, and results in worsened medical and psychosocial outcomes. This may be even more pronounced among older adults with HIV (Skinta & Feldman, 2012), defined by the US Center for Disease Control as men over 50 years of age, who now comprise approximately half of the HIV-positive men in San Francisco (Emlet, 2006; Poindexter & Emlet, 2006; San Francisco Department of Public Health, 2010). The experience of SMS may also have a particularly strong association with psychological well-being and disease status. Among HIV-positive gay men, social isolation, lack of condom use and poor medication adherence have been associated with high minority stress (Cochran & Mays, 2006; Cochran et al., 2009). A large body of research suggests that increased stress and a lack of social support are associated with faster HIV-disease progression (Leserman, 2000). The goal of this study is to explore this interaction of SMS and HIV-related stigma in the lives of sexual minority men living with HIV. Data collection Three HIV-positive sexual minority (i.e. gay and bisexual) men were recruited following participation in an acceptance and compassion focused psychotherapy group
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for HIV-related shame (Skinta, Lezama, Wells, & Dilley, 2013); these participants were originally recruited through clinician referral and notices in an HIV community mental health organisation. The participants’ ages ranged from 39 to 58. While enrolment criteria required an HIV diagnosis greater than one year prior, the participants ranged from 2 to 23 years since diagnosis, such that one participant had been living with HIV since prior to the invention of antiretroviral therapies (ART), another was diagnosed shortly after the advent of highly active ART (HAART), while the last was diagnosed after the recent introduction of one-a-day therapies, each diagnosed in their mid-30s. All participants were white, and all were only partially employed at the time of the interviews. The cohort examined were particularly representative of San Francisco’s HIV affected MSM. Data collected by the San Francisco Department of Public Health’s HIV Surveillance Unit showed that among living male HIV cases diagnosed in San Francisco, the majority were male (92%), white (63%) and MSM (73%), with the majority of those affected being over 30 years old (96%). Specifically with regard to HIV among older men, the majority of persons aged 50 years and older living with HIV were found to be male (93%), white (69%) and MSM (74%) (San Francisco Department of Public Health, 2012). It should be noted that none of the men who participated had experience with physical markers of the disease. None had experienced lipodystrophy, facial wasting or other common signifiers of illness, and none had experienced significant illness since testing HIV-positive. Interviews were conducted by the first author in a therapy room within the HIV community mental health agency that the participants were recruited through. All interviews were conducted in 2011. The interviews explored various aspects of the experience of living with HIV, with a particular focus on internalised stigma, the expectation of rejection, discriminatory experiences, concealment and social connectedness (e.g. minority stress experiences; Meyer et al., 2008). The tone of the interview was informal, with time for reflection and follow-up on related themes introduced by the participant as he shared. Interviewees were encouraged to reflect upon related aspects of their experience, and were free to introduce connections between the experience of living with HIV and other aspects of their lives. For this reason, while the interview covered similar topics, each interview provided some unique information and different aspects of reflection upon HIV-related stigma. The interviewer had also served as a co-therapist in the group intervention for living with HIV-related stigma and shame; this may have introduced both limitations and opportunities that would differ from a newly introduced interviewer; this effect is explored further in the discussion section. Ethical approval for the study was granted by the University of California, San Francisco, Committee on Human Research. All participants consented to the use of their de-identified interviews for analysis and publication. Approach Within the current study, we employed interpretative phenomenological analysis (IPA) to explore people’s accounts of their experiences surrounding stigma associated with HIV. IPA is a well-established qualitative research methodology within clinical, health and social psychology (Smith, Flowers, & Larkin, 2009), and has been utilised successfully within a wide variety of other sexual health studies (Duncan, 2001; Flowers, Knussen, & Duncan, 2001). Primarily with an idiographic focus, IPA allows for the
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researcher to tentatively explore how participants make sense of their personal and social world. Adopting this phenomenological approach allows the researcher to rigorously explore personal accounts in a way that offers some richness and depth within the proposed topic (Reid, Flowers, & Larkin, 2005; Smith et al., 2009). Ostensibly, the researcher aims to identify themes within the discourse between the interview and participant that reflect the understandings of a given phenomenon. Within the IPA process, data are recorded through the use of the semi-structured interview. The semi-structured interview allows the interviewer to cultivate an environment that is open-ended, curious and flexible, which subsequently allows for the participant to explore the given topic in some detail. To this effect, within the present study, the interviewer used an ‘interview schedule’ which merely provided a basic trajectory to which the discourse would follow. The interviews were recorded and transcribed using Atlas.ti, a programme that allows for the recording and annotation of large bodies of textual data. The analysts were able to quantify and collect recurring themes and group more basic themes into superordinate themes, which were classed as broader, and more central to the individual’s discourse. Through the interpretation of these themes, the analyst begins to analyse the cognitions and emotions that the participants ascribe to this particular situation in their life. Within the context of the present study, the researchers analysed themes surrounding the participants’ level of felt stigma arising from a diagnosis of HIV. Two analysts (BB and WCS) coded the transcripts in synchrony. After both analysts had finished basic coding, they would meet on a regular basis to compare basic code and discuss apparent themes that were drawn from basic-level annotations. This also allowed for the revision and adjustment of certain codes. By implementing such a methodology, the process developed an analytical method that was constantly being reaffirmed and validated by discussing one another’s analytic insights. Both analysts then moved onto examining the broader, superordinate themes in collaboration with the interviewer. These themes formed as the most prevalent and recurrent ideas central to the interviewee’s discourse. Themes were selected that appeared consistent across all participants’ individual interviews. Unlike typical IPA approaches, it should be noted that the superordinate themes and labels were further influenced by a knowledge of the body of research and theory literature describing HIV-related stigma and SMS. For example, reference to a spoiled identity were inspired by Goffman’s (1963) pioneering work, and particular attention was made to the role of identity management, disclosure and the social and relational aspects of living with HIV. Analysis Our analysis consisted of examining recurrent themes emerging from a discussion of the participants’ experiences surrounding stigma derived from living with HIV. The context of these interviews is of significance, as the participants and the clinic that housed the interviews is situated at one of the first global epicentres of HIV in North America, surrounded by an urban community with a vocal, activist presence around the experience of HIV by sexual minorities. The narratives were consistent with other large, urban gay communities – despite a general awareness of HIV, invisibility and the fear of stigma were prevalent, Internet and smart phone apps were to facilitate the
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widespread practice of Serosorting, and the social impact of HIV are increasingly an experience of older men in the community (e.g. San Francisco Department of Public Health, 2010). The most prevalent themes that arose were: the disclosure of serostatus to others, stigma associated with serosorting and attempting to negotiate a spoiled identity.
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Disclosing serostatus to others The most common recurrent theme across all narratives was the strong, positive relationship that exists between drawing support from meaningful relationships and disclosure of one’s HIV-positive status (Hays et al., 1993; Huber, 1996; Kalichman et al., 2003; Kimberly & Serovich, 1999; Leask, Elford, Bor, Miller, & Johnson, 1997; Marks et al., 1992). The participants described their careful consideration as they perceived a high risk of adverse social consequences, such as rejection, isolation or loneliness. Each also shared an awareness that disclosure was a necessary risk for meaningful support, however. Further, Ian explained that the presence of a partner alleviated the emotional burden of a HIV status within the gay community. That is, he is not perceived as a threat of seroconversion to HIV-negative men that are uncomfortable with the presence of single, sexually active HIV-positive men, or intimidated by ‘magnetic’ relationships in which one partner is HIV-negative and, therefore, at risk. He is also not required to self-disclose for the purpose of dating or sexual connection, which grants Ian more control over when he might choose disclosure as desirable. Yes, I do really manage my public persona as far as being positive. It’s because I [experience] fear from the gay community. Well, because I have a partner, I’m partnered so I feel like I’m not worried about that. We’re both positive, so … (Ian) I felt both a little sadness and sort of a poignancy that she’s so vulnerable now towards the end of her life. I also thought that maybe I probably shouldn’t tell her I’m positive. (Adam)
Adam struggles deeply with his desire to not disclose his status, and his realisation that his life feels emotionally impoverished through a lack of interpersonal relationships. Adam and Ian both expressed a concern that they must control this information and gauge carefully whether or not it could be handled or would end well. I kept thinking I’m gonna prepare them. I’m gonna help them. Like, you can you know just little bits just little bits of words here and there … Somehow I will be able to come out to them and they will be accepting because of the way I did it. Over the years I thought about doing a video, writing letters. The different ways I could do it. (Ian)
Conversely, Kevin explained that he had chosen to not disclose his status to anybody, while simultaneously viewing this as detrimental to his own well-being. Kevin was able to recount, however, one occasion when he disclosed his serostatus to a former romantic partner, which he experienced positively: So … I sat him down and told him, because I ran into him on the street and basically said, ‘I wanna sit down with you and talk to you,’ ‘cause he was back in town and I just wanted
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to … deal with this … and he was so nurturing, he held my hand through me telling him the whole thing. It was absolutely what I didn’t expect. (Kevin)
In this moment, Kevin experienced a mismatch between his imagined and the actual experience of disclosing to a previous partner. Through doing this, Kevin broke the previous trend of ‘bottling up’ his HIV diagnosis. Finally, Ian spoke of his experiences surrounding serostatus disclosure and receiving social support from his family. Ian combined his disclosure to his family that ‘not only [am I] gay, but [I’m] now HIV positive’. After disclosing his serostatus Ian described feeling that his family was standing behind him as he returned to navigate his life. The rationale behind serostatus disclosure differed between each of the men, yet a superordinate theme was shared: if disclosure was not well received, an important, meaningful relationship would be lost. Ian, for example, introduced the idea of managing his public persona and selectively disclosing his status whilst taking into consideration how his disclosure will affect his partner, who is also HIV-positive yet less open regarding his status. Ian’s serostatus disclosure is further mitigated by how his partner would react to disclosure or denial of his serostatus, which could in turn lead to a shaming or stigmatising experience for his partner. This supports recent findings from similar men interviewed in Europe, whereas concerns regarding disclosure and control of information highlight that disclosure remains a complex social phenomenon (Flowers & Davis, 2013), and cannot be reduced to its component parts as an isolated health behaviour that can be promoted or increased in a direct, linear way. In Adam’s case, he focused on how his disclosure might ‘burden’ his ‘vulnerable’ mother, selecting to describe this choice as one of protecting others, as if his identity is so shameful, so aversive, that another could not bear to carry that stigma alongside him. This notion that one can spare family and friends from the mental and emotional strain of providing support is widespread (Smith, Rossetto, & Peterson, 2008), and there may be truth to the notion that some significant relational others may choose to avoid or limit interactions as they perceive the commitment and circumstances may prove too emotionally taxing (Brashers, Neidig, & Goldsmith, 2004). Kevin described compartmentalising the experience of living with HIV as a sign of the shame he experiences around his serostatus, and by not disclosing his HIV status and not talking about it ‘he was poisoning and wounding his soul’. As Kaufman and Raphael (1996) write; ‘silence breeds shame every bit as much as shame breeds further silence’. The choice to actively avoid and not disclose one’s HIV status is a heavy burden, and likely contributes to a sense of distress and loneliness for men living with HIV who make this decision. Further, expecting and fearing stigmatisation and rejection is associated with more constricted social networks. Stigma in response to serosorting Within these narratives, participants mentioned the frequent experience of online serosorting as a primary site of their experiences with stigmatisation. Every participant noted advertisements posted online in which HIV-negative men would explain they were only seeking other HIV-negative men. This is often referred to as the ‘UB2’ phenomena, after the Internet shorthand ‘Neg, UB2’ (i.e. ‘you be, too’), indicating that the person posting the ad is serosorting. This is not a wholly one-sided phenomena,
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however, with many websites and personals ads existing that attest to HIV-positive men only seeking other HIV-positive men in order to avoid the possibility of exposing a partner to HIV. Participants described an experience of serosorting as extending even to individual relationships and communities, whereby both HIV-positive and HIV-negative men might screen prospective social or sexual partners for concordance in HIV status before associating with them. The observation of HIV-negative men serosorting to find HIV-negative partners potentially contributes to elevated levels of felt stigma and social marginalisation, as serosorting renders the positive/negative community divide more visible (Ware, Wyatt, & Tugenburg, 2006). These observations can result in elevated levels of stigma, feelings of ostracism and social marginalisation. Further, the marginalisation appears unidirectional, as there does not appear to be a phenomena in the literature attesting to HIV-negative men feeling left out or excluded by social networks that restrict access to HIV-positive men, which may further exacerbate a sense of undesirability among HIVpositive men. Among HIV-positive gay men, such feelings have a considerable impact on mental and emotional well-being, causing significantly increased levels of anxiety, loneliness, depressive symptoms, suicidal ideation and engagement in avoidant strategies such as social withdrawal (Courtenay-Quirk, Wolitski, Parsons, & Gomez, 2006; Grov, Golub, Parsons, Brennan, & Karpiak, 2010). Each of these strategies was reported by our participants, with most describing withdrawing from the use of many popular social or romantic websites in order to protect themselves from exposure to these messages. So … how did how did your relationship change with negative men at that time? (Interviewer: MDS) Okay, well, I remember standing outside of the Castro movie theatre and just feeling separate from everybody, like … I’m positive and they’re negative. Even though statistically … (Ian) A lot of them are probably positive. (Interviewer) Right, but that’s how I felt or thought and … I thought no one will want me. I thought, that’s a big one … at least with negative men. And if you go online to craigslist or somewhere, it’s like, everybody is … posting they wanna be with a negative person, so I don’t go there anymore. I have a partner now … if you go there and you’re positive, it’s not a good place because you’re reading this ‘negative for negative,’ and I know it’s not personal but …. But it’s bad … it is. (Ian)
Ian explains that after his diagnosis he felt a disconnection from the gay community, and when attempting to meet other men on the Internet, the disconnection he experienced felt reaffirmed by discovering the frequency with which HIV-negative men were serosorting. Ian elaborated that it was his attempts to meet a partner on the Internet that led to his initial experience of stigma as a man living with HIV. I found that when I took to trying to meet people, and deal with people, and play with people, in an Internet arena of choosing people that way … that’s when I really started to experience stigma. (Ian)
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Attempts to negotiate a spoiled identity
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The concept of spoiled identity was originally introduced by Goffman (1963). Goffman defined stigma as a process by which the reaction of others spoils normal identity. Ian, Adam and Kevin all described strategies intended to reduce felt stigma, as well as stigma management strategies intended to repair the disequilibrium caused by the ‘hopelessness’ of living with HIV. Subsequently, participants tended to link these efforts with either the prior or co-occurring management of their identities as gay-identified men. Ian stated that when he was younger he would try and ‘reprogram’ himself as a heterosexual. I remember trying to reprogram myself. I remember looking at my Dad’s Playboy magazines. Like I had heard about … stimulus response and I was like, you know, I didn’t wanna be gay. (Ian)
Similar to the earlier discussion of serostatus, Ian’s words reflect an awareness that society privileges heterosexual experiences over sexual minority identities. Ian’s experience may have been influenced by growing up in a setting which cultivated a belief that the feelings Ian was having needed to be ‘reprogrammed’. Ian’s felt stigma is described primarily as deriving from his religious community and family, who instilled a belief that his same-sex attraction was wrong. Consequently, this contributed to his experience of a spoiled identity and within this history, Ian’s spoiled identity is a product of growing up in an environment that supported therapies that sought to alter a person’s sexual orientation. Further, Ian described speaking with family members that actively stigmatise people living with HIV. Ian:
… with Mom, I can tell you, with Mom she’s afraid of people knowing … they have a small restaurant, and she’s like, if people ever found out here they wouldn’t eat at the restaurant, you know. (Ian) And even this last time, when I was in just a few weeks ago … my Aunt’s a nurse and … I’d sent out this email asking for people to donate for [the] AIDS Walk … so she donated … but she said, you know, like, ‘I was glad to help but that’s just a drop in the bucket, it’s not going to change anything probably’. And she said, ‘Don’t listen to them, they don’t know all the ways you can catch it, because they don’t tell us everything.’ You know, it’s like there’s this suspicion that [AIDS is] more contagious. (Ian)
Goffman (1963) explained that within certain cases, a stigma may possess the ability to become the ‘master status’. That is, a highly stigmatised trait, such as living with HIV, has the capacity to compromise the identity, integrity and complexity of an individual and deduce who they are to a label surrounding their HIV. Subsequently, the person accommodates an identity that is almost entirely encapsulated by their serostatus. Such labels or beliefs may lead to feelings of existential crisis and entrapment. Adam speaks of his HIV as evoking a search for a greater meaning. In this regard, Adam is negotiating a spoiled identity and purposively searching for a ‘greater meaning, or existence’. It is not uncommon that HIV triggers deep spiritual questions about the meaning of the illness, purpose in life, and one’s relationship with God and others (Cotton et al., 2006; Pargament, Koenig, Tarakeshwar, & Hahn, 2004).
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… I don’t know what or where I can go from here until I fall in that 6 foot hole that makes my life more meaningful, more purposeful. (Adam)
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For example, such existentialist questioning prevailed Adam’s dialogue; the above quotation from Adam illustrates a level of uncertainty as to where his life will go from this point, and refers to a metaphor introduced in a group therapy session intended to heighten awareness of the consequences of continuing strategies that have not resolved feelings of despair in order to encourage different courses of action (i.e. creative hopelessness; see Hayes, Strosahl, & Wilson, 1999). You know, I want some kind of intellectual understanding and clarity, and perhaps I want some sort of validation or reinforcement of where I’m trying to stumble around and find values. (Adam)
Adam attempted to negotiate a spoiled identity by searching for values. Throughout Adam’s narrative his experimentation with diverse religious philosophies was central to his experience of what it meant to live with HIV. For Adam, religion or spirituality appeared to provide the most meaningful path to finding answers for the difficulties he experiences navigating the uncertainty of his HIV status. The search for spiritual truth may act as a means of accumulating the resources necessary to cope with one’s serostatus and the responses of others, and may also assuage the difficult experiences of shame and guilt associated with seroconversion. Throughout Adam’s responses, he voiced a sense of existential crisis and endorsed a degree of extrinsic religiosity, perhaps a means ‘to provide security and solace, sociability and distraction, status and self-justification’ (Allport & Ross, 1967, p. 434). I think the thing, probably, that I’ve gotten from the group, and I’ve heard some of this elsewhere in 12 steps and DBT, [is that] there’s more focus now … partly around acceptance, just accepting well the situation of having HIV. That this, I’m living with this body that has HIV and this is my path. (Ian)
Ian regarded his experience of living with HIV as informed by his experience of dialectic behavioral therapy (DBT), alcoholics anonymous and the HIV stigma group he participated in with the first author in acceptance and commitment therapy (ACT). Ian expressed a greater level of acceptance of living with HIV as an attribute that did not fully define his experience – that is, his body possesses HIV, though this does not fully define him or his life. Both therapies Ian references incorporate mindfulness – a focus on paying attention to this present moment in a non-judgemental, kind way – and radical acceptance – a belief that in order to find workable means of navigating life, one must fully embrace what is already present. Ian expressed this as a philosophy he has found deeply meaningful in reducing the centrality of HIV in how he defines himself. You know, I sat there originally when I was on disability and … now I’m this outcast and exile and … HIV-positive disabled person, and … you know that’s not real to me. (Kevin) Now the way I look at shame is: ‘Oh good, there’s a big old vein of love behind this, so let me tolerate it and move through.’ (Kevin)
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As with Ian, Kevin credited the principles of the HIV-stigma group as fundamental in negotiating a spoiled identity. Kevin linked this negotiation with the importance of disclosure, as Flowers, Davis, Larkin, Church, and Marriott (2011) similarly find. He explained that by not disclosing his difficulties to the group, he was able to temporarily avoid experiencing his shame, and thereby avoid being vulnerable among other members. Further, Kevin made the deeper connection that refusing to discuss his HIV status when experiencing shame was not only a tool of keeping others at a distance; Kevin was also closing himself off to the affective experience of closeness and love with others. For this reason, he chose to notice when he experienced shame and used this as an opportunity to remind himself that he would be able to experience love toward others, and receive warmth and love from others, only when he moved more deeply into this vulnerable space. Yeah yeah, and I pretty much thought, yeah, I had a very strong correlation with being gay and HIV positive. (Kevin) I … didn’t realize how much … HIV stigma, gay stigma, effeminate man stigma, being on disability stigma, I didn’t realize the shadow that all that had cast over my entire life, and how many areas of my life the lights had gone out. And that I was just holding onto a few things and going with those, and throwing other stuff overboard, because I just couldn’t fight the total toxicity of stigma. I had to fight my battle, choose my battle … I found … working with stigma to be a gateway, a very deep gateway into like the core of me and to the crossroads where all my different stuff collides. (Ian)
Finally, each narrative drew attention to the ways that HIV only heightened an experience that was already present: the experience of possessing a spoiled identity related to being gay. This played a central, organising experience in their lives prior to seroconversion. As noted above, the emotional demands of testing HIV-positive often provided the impetus to disclose to conservative families. The role of HIV in contributing towards a spoiled identity was symbolic and incidental; as noted above, participants did not bear physical marks of HIV, such as facial wasting. Rather, HIV was perceived by the participants to reinforce their status as other, the differentness that shaped their lives as a result of being gay, having sex with other men. In this way, HIV might be seen as, principally, heightening the salience of not belonging to the majority group due to one’s sexuality. It is the secondary discrimination within the gay community that, in turn, established minority status and a spoiled identity as a fixed status. Discussion These three narratives expressed a sense that there is something damaged, something toxic, about being HIV-positive. Further, with some exception, the prior experiences of participants highlighted the ways in which HIV might assume centrality in their lives and definition of the self. Similar to recent samples in Europe, the men in this cohort described their HIV as a central, unifying element in their sense of self (Flowers & Davis, 2012). Surprisingly, the distress associated with HIV was most often related to relationships within the gay male community, the search for friends or lovers and the salience of serosorting as a social practice that perpetuates a message that HIV makes one different and sets one apart from acceptable social belonging. The extant literature
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does not speak to the long-term topology of HIV self-stigma; it is unfortunately and truly unknown whether a standard trajectory exists, how it ameliorates outside of active treatment, and whether the few attempts at targeting HIV-related self-stigma or shame for treatment have a positive effect on the health and well-being of participants. These narratives do highlight the struggle to maintain meaningful, beneficial relationships, however. The experiences of Ian, Adam and Kevin are further clarified through the lens of experiential avoidance. ACT (Hayes et al., 1999) considers the central experience of avoidance of unwanted emotions, mental content and verbalisations, and efforts to distract or control the moment-to-moment experience of these, as a taxing form of mental behaviour that paradoxically increases the subjective experience of stress. In the case of relationships, the vulnerability and disclosure required to feel intimately connected with others are behaviourally avoided in an attempt to reduce contacting shame in that moment. That is, if the likelihood of discovery or disclosure is believed to give rise to an overwhelming internal experience, one means of controlling that would be to remain guarded in the presence of others, not avoid or adopt attitudes dismissive of romantic relationships, or to minimise self-disclosures. Attempts to control internal processes, however, are generally unsuccessful (Wenzlaff & Wegner, 2000), meaning that through reducing opportunities to connect in efforts to control and prevent experiencing shame and stigmatising thoughts, these men may have been more likely to experience shame. In the case of shame and stigma, these unwanted experiences belong to the traits, attitudes and labels that one has assigned as properties of the self (Luoma, Kohlenberg, Hayes, & Fletcher, 2012). In practice, this will result in a restriction of meaningful relationships – e.g. ‘I can protect myself from the hurt of rejection if I keep everyone too far away to realize that I am damaged/spoiled/unwanted’. The relationship between gay men living with HIV and the likely causal role of sexual intercourse may create a particularly charged context in which social partners attempt to control or reduce the mutual flow of information. For instance, early research on HIV found that the inference of high-risk behaviours that led to seroconversion are often negatively evaluated, leading to less support (Bennett, 1990; Berk, 1990). Likewise, the relationship between HIV-related stigma and reduced medication adherence or contact with medical providers may also be explained in this way (Sayles et al., 2009). Specifically, despite important reductions in the number of medications required to sustain an undetectable viral load, even a single pill regimen serves as a daily reminder of one’s HIV status. Finally, there is a great deal of attention, fear and avoidance in the gay community surrounding the reduced disclosure of HIV status to one’s sexual partners, which may result in a greater likelihood of serodiscordant sexual partners (Poindexter & Shippy, 2010). This is a bidirectional relationship, however, with both HIV-negative and HIV-positive men inferring that a lack of discussion and willingness to participate in condomless intercourse implies seroconcordance; this is a phenomenon identified by early studies of HIV and gay and bisexual men (Gold & Skinner, 1993; Halkitis & Parsons, 2003; Parsons et al., 2005, 2006; Suarez & Miller, 2001). This pattern of assumptions has been highly stable throughout the history of the pandemic, and does not appear to have shifted over time. Further, serosorting or open discussion surrounding serostatus has been a controversial, unpopular focus of intervention – societal experiential avoidance appears to contribute toward the marginalisation of these discussions. Within this specific group of men, there were a number of unique factors that may not capture the entirety of current experiences living with HIV. Despite the frequency
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with which older men have been exposed to highly toxic early regimens, the men that participated in these interviews reported a surprising degree of freedom from side effects, and no member bore visibly identifiable marks of serostatus. This may not only reduce the generalisability of these findings to other white, gay men affected by HIV, it may mask important aspects of intersectionality more typical of aging men experiencing HIV-related stigma. Further, the social landscape in which HIV is experienced is currently in flux. With renewed faith that an undetectable viral load may be an effective deterrent to the transmission of the virus, as well as a high rate of adoption of pre-exposure prophylaxis (PrEP) among HIV-negative gay men in San Francisco, even in the short period since these interviews were conducted, changes have begun to happen again. As a local physician and HIV researcher quipped regarding PrEP in a local lecture, ‘If everyone in the gay community is taking a pill a day, and seroconversion has stopped, will there really be a positive and negative divide anymore?’ This may further complicate the ‘obstinant essentialism’ noted among gay men living in Scotland (Flowers & Davis, 2013). While it may be too soon to predict, there is every reason to believe that this is a quickly changing aspect of the HIV-positive experience. Further, the concerns of managing an immunological status that is not immediately visible affect multiple domains in health psychology, such as chronic pain, diabetes or Hepatitis C. Despite the unique medicalisation of HIV status, each of these conditions concern a pervasive diagnosis requiring disclosure, the potential for chronic management and the likelihood of rejection or adverse reactions. In conclusion, despite increases in the efficacy of ART, a reduction in visible signs of HIV, and the high prevalence of visible HIV-positive communities in major urban areas, HIV-related stigma continues to pose difficulties and challenges to the integrity of gay men. Our research indicates that the struggle of how one defines and manages a definition of the self as possessing a potentially fatal disease is a central driver of behaviour, affect and relationships among HIV-positive men. As HIV-positive men are aging in North America and Europe, it is important for providers to be mindful that most persons living with and affected by HIV learned in their youth that seroconversion was a death sentence. For this reason, as HIV becomes increasingly difficult to detect through bodily signs, and as medical trajectories continue to converge with those of HIV-negative persons, it is imperative to remember the psychological burden of HIV and the myriad invisible forms of suffering it births. Acknowledgements This study was funded by the New Investigator Award from the Center for AIDS Prevention Studies Innovative Grants Program 2010. We also thank the participants, as well as Aishat Giwa, Megan Sirna, Lauren McGuire, and Jessie Murphy for administrative and logistic support for this study.
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Psychology & Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/gpsh20
Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach a
a
b
Matthew D. Skinta , Benjamin D. Brandrett , William C. Schenk , c
Gregory Wells & James W. Dilley
a
a
Alliance Health Project, Department of Psychiatry, University of California, San Francisco, San Francisco, CA, USA b
School of Medicine, University of Pittsburgh, Pennsylvania, Pittsburgh, PA, USA
Click for updates
c
Private Practice, San Francisco, CA, USA Accepted author version posted online: 04 Dec 2013.Published online: 07 Jan 2014.
To cite this article: Matthew D. Skinta, Benjamin D. Brandrett, William C. Schenk, Gregory Wells & James W. Dilley (2014) Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach, Psychology & Health, 29:5, 583-597, DOI: 10.1080/08870446.2013.871283 To link to this article: http://dx.doi.org/10.1080/08870446.2013.871283
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Psychology & Health, 2014 Vol. 29, No. 5, 583–597, http://dx.doi.org/10.1080/08870446.2013.871283
Shame, self-acceptance and disclosure in the lives of gay men living with HIV: An interpretative phenomenological analysis approach
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Matthew D. Skintaa*, Benjamin D. Brandretta, William C. Schenkb, Gregory Wellsc and James W. Dilleya a Alliance Health Project, Department of Psychiatry, University of California, San Francisco, CA, USA; bSchool of Medicine, University of Pittsburgh, Pennsylvania, Pittsburgh, PA, USA; c Private Practice, San Francisco, CA, USA
(Received 25 June 2013; accepted 25 November 2013) Objective: HIV-related stigma is a major driver of poor prognosis for the treatment and reduced spread of HIV. The present article provides a qualitative analysis surrounding various themes related to stigma and shame as a result HIV. Design: Eight gay men recruited from a community HIV clinic contacted the researchers in response to a study involving participation in a structured, eightweek group intervention for HIV-related stigma. Following this group, three men took part in open-ended interviews about their thoughts and experiences. Methods: Interpretative phenomenological analysis was used to examine the participants’ experiences surrounding shame and stigma related to living with HIV. Results: Three superordinate themes were identified: social support and the disclosure of serostatus, stigma associated with serosorting and attempts to negotiate a spoiled identity. Conclusion: In San Francisco, a city with a great deal of acceptance surrounding HIV and a large, politically active community of persons living with HIV, gay men continue to struggle with disclosure and stigma. This stigma may be an unexpected result of a high degree of HIV testing and attempts by both HIV-positive and negative gay men to practise serosorting. Keywords: HIV; attempting to negotiate a spoiled identity; disclosure; acceptance; stigma; shame; IPA; gay
Introduction HIV-related stigma is associated with a cascade of harmful outcomes for persons living with HIV/AIDS. HIV-related stigma has been found to markedly reduce the well-being of persons living with HIV/AIDS, particularly through its association with reduced medication adherence, reduced contact with medical providers (Sayles, Wong, Kinsler, Martins, & Cunningham, 2009), and reduced disclosure of HIV status resulting in a greater likelihood of serodiscordant sexual partners (Poindexter & Shippy, 2010) and a restricted social support network (Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003) of persons knowledgeable of their serostatus. Further, recent research has largely focused on international and cross-cultural examples of stigma (Genberg et al., 2009, 2008; Maman et al., *Corresponding author. Email: [email protected] © 2013 Taylor & Francis
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2009). A multi-country study of HIV-related stigma in Africa, for instance, noted that quality of life diminished over time in the presence of stigma, regardless of health factors (Greeff et al., 2010). Research in China supports findings that social support mitigates the impact of stigma, though it is unclear whether the stigma is a barrier to support or is a response (Rao et al., 2012). Individual interventions for the likely effects of HIV-related stigma, such as adherence issues, largely target mental disorders (e.g. depression; Safren et al., 2009). For these reasons, the experiences of sexual minority men living with HIVrelated stigma and shame are still poorly understood. Sexual minority stress (SMS) is a term used to describe the psychological stress experienced by sexual minorities (gay, lesbian and bisexual people) who live in a predominantly heterosexual world. As noted in a recent Institute of Medicine (IOM) report, minority stress has established itself as the dominant lens through which the impact of stigma on sexual minorities might be understood (IOM, 2011). SMS considers the full array of proximal and distal stressors as necessary to understand an individual’s experience (Meyer, 1995). SMS is the additive effect of four components: internalised stigma, such as internalised homophobia (internalised negative attitudes and beliefs toward homosexuality); expectation of stigma; concealment of one’s sexual identity and discriminatory events (e.g. violence, bullying and rejection) (Meyer, 2003; Meyer, Schwartz, & Frost, 2008). For many gay and bisexual men, SMS stressors are present prior to an individual’s awareness of his sexuality, since many adult gay and bisexual men report memories of being bullied or stigmatising experiences in early childhood due to perceived gender atypicality (Plöderl & Fartacek, 2009). Historically, most studies have only focused on the role of internalised homophobia. One recent study suggests that discriminatory events and the expectation of stigmatising treatment are the most salient attributes (Kuyper & Fokkema, 2010). For reasons not clearly identified, SMS consistently exerts a greater impact on the mental health and well-being of HIV-positive gay and bisexual men than HIV-negative men (Cochran & Mays, 2009). This may be due, in part, to the synergistic effects of managing both SMS and HIV-related stigma. HIV-related stigma places an additional psychosocial stressor upon gay and bisexual men, and results in worsened medical and psychosocial outcomes. This may be even more pronounced among older adults with HIV (Skinta & Feldman, 2012), defined by the US Center for Disease Control as men over 50 years of age, who now comprise approximately half of the HIV-positive men in San Francisco (Emlet, 2006; Poindexter & Emlet, 2006; San Francisco Department of Public Health, 2010). The experience of SMS may also have a particularly strong association with psychological well-being and disease status. Among HIV-positive gay men, social isolation, lack of condom use and poor medication adherence have been associated with high minority stress (Cochran & Mays, 2006; Cochran et al., 2009). A large body of research suggests that increased stress and a lack of social support are associated with faster HIV-disease progression (Leserman, 2000). The goal of this study is to explore this interaction of SMS and HIV-related stigma in the lives of sexual minority men living with HIV. Data collection Three HIV-positive sexual minority (i.e. gay and bisexual) men were recruited following participation in an acceptance and compassion focused psychotherapy group
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for HIV-related shame (Skinta, Lezama, Wells, & Dilley, 2013); these participants were originally recruited through clinician referral and notices in an HIV community mental health organisation. The participants’ ages ranged from 39 to 58. While enrolment criteria required an HIV diagnosis greater than one year prior, the participants ranged from 2 to 23 years since diagnosis, such that one participant had been living with HIV since prior to the invention of antiretroviral therapies (ART), another was diagnosed shortly after the advent of highly active ART (HAART), while the last was diagnosed after the recent introduction of one-a-day therapies, each diagnosed in their mid-30s. All participants were white, and all were only partially employed at the time of the interviews. The cohort examined were particularly representative of San Francisco’s HIV affected MSM. Data collected by the San Francisco Department of Public Health’s HIV Surveillance Unit showed that among living male HIV cases diagnosed in San Francisco, the majority were male (92%), white (63%) and MSM (73%), with the majority of those affected being over 30 years old (96%). Specifically with regard to HIV among older men, the majority of persons aged 50 years and older living with HIV were found to be male (93%), white (69%) and MSM (74%) (San Francisco Department of Public Health, 2012). It should be noted that none of the men who participated had experience with physical markers of the disease. None had experienced lipodystrophy, facial wasting or other common signifiers of illness, and none had experienced significant illness since testing HIV-positive. Interviews were conducted by the first author in a therapy room within the HIV community mental health agency that the participants were recruited through. All interviews were conducted in 2011. The interviews explored various aspects of the experience of living with HIV, with a particular focus on internalised stigma, the expectation of rejection, discriminatory experiences, concealment and social connectedness (e.g. minority stress experiences; Meyer et al., 2008). The tone of the interview was informal, with time for reflection and follow-up on related themes introduced by the participant as he shared. Interviewees were encouraged to reflect upon related aspects of their experience, and were free to introduce connections between the experience of living with HIV and other aspects of their lives. For this reason, while the interview covered similar topics, each interview provided some unique information and different aspects of reflection upon HIV-related stigma. The interviewer had also served as a co-therapist in the group intervention for living with HIV-related stigma and shame; this may have introduced both limitations and opportunities that would differ from a newly introduced interviewer; this effect is explored further in the discussion section. Ethical approval for the study was granted by the University of California, San Francisco, Committee on Human Research. All participants consented to the use of their de-identified interviews for analysis and publication. Approach Within the current study, we employed interpretative phenomenological analysis (IPA) to explore people’s accounts of their experiences surrounding stigma associated with HIV. IPA is a well-established qualitative research methodology within clinical, health and social psychology (Smith, Flowers, & Larkin, 2009), and has been utilised successfully within a wide variety of other sexual health studies (Duncan, 2001; Flowers, Knussen, & Duncan, 2001). Primarily with an idiographic focus, IPA allows for the
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researcher to tentatively explore how participants make sense of their personal and social world. Adopting this phenomenological approach allows the researcher to rigorously explore personal accounts in a way that offers some richness and depth within the proposed topic (Reid, Flowers, & Larkin, 2005; Smith et al., 2009). Ostensibly, the researcher aims to identify themes within the discourse between the interview and participant that reflect the understandings of a given phenomenon. Within the IPA process, data are recorded through the use of the semi-structured interview. The semi-structured interview allows the interviewer to cultivate an environment that is open-ended, curious and flexible, which subsequently allows for the participant to explore the given topic in some detail. To this effect, within the present study, the interviewer used an ‘interview schedule’ which merely provided a basic trajectory to which the discourse would follow. The interviews were recorded and transcribed using Atlas.ti, a programme that allows for the recording and annotation of large bodies of textual data. The analysts were able to quantify and collect recurring themes and group more basic themes into superordinate themes, which were classed as broader, and more central to the individual’s discourse. Through the interpretation of these themes, the analyst begins to analyse the cognitions and emotions that the participants ascribe to this particular situation in their life. Within the context of the present study, the researchers analysed themes surrounding the participants’ level of felt stigma arising from a diagnosis of HIV. Two analysts (BB and WCS) coded the transcripts in synchrony. After both analysts had finished basic coding, they would meet on a regular basis to compare basic code and discuss apparent themes that were drawn from basic-level annotations. This also allowed for the revision and adjustment of certain codes. By implementing such a methodology, the process developed an analytical method that was constantly being reaffirmed and validated by discussing one another’s analytic insights. Both analysts then moved onto examining the broader, superordinate themes in collaboration with the interviewer. These themes formed as the most prevalent and recurrent ideas central to the interviewee’s discourse. Themes were selected that appeared consistent across all participants’ individual interviews. Unlike typical IPA approaches, it should be noted that the superordinate themes and labels were further influenced by a knowledge of the body of research and theory literature describing HIV-related stigma and SMS. For example, reference to a spoiled identity were inspired by Goffman’s (1963) pioneering work, and particular attention was made to the role of identity management, disclosure and the social and relational aspects of living with HIV. Analysis Our analysis consisted of examining recurrent themes emerging from a discussion of the participants’ experiences surrounding stigma derived from living with HIV. The context of these interviews is of significance, as the participants and the clinic that housed the interviews is situated at one of the first global epicentres of HIV in North America, surrounded by an urban community with a vocal, activist presence around the experience of HIV by sexual minorities. The narratives were consistent with other large, urban gay communities – despite a general awareness of HIV, invisibility and the fear of stigma were prevalent, Internet and smart phone apps were to facilitate the
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widespread practice of Serosorting, and the social impact of HIV are increasingly an experience of older men in the community (e.g. San Francisco Department of Public Health, 2010). The most prevalent themes that arose were: the disclosure of serostatus to others, stigma associated with serosorting and attempting to negotiate a spoiled identity.
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Disclosing serostatus to others The most common recurrent theme across all narratives was the strong, positive relationship that exists between drawing support from meaningful relationships and disclosure of one’s HIV-positive status (Hays et al., 1993; Huber, 1996; Kalichman et al., 2003; Kimberly & Serovich, 1999; Leask, Elford, Bor, Miller, & Johnson, 1997; Marks et al., 1992). The participants described their careful consideration as they perceived a high risk of adverse social consequences, such as rejection, isolation or loneliness. Each also shared an awareness that disclosure was a necessary risk for meaningful support, however. Further, Ian explained that the presence of a partner alleviated the emotional burden of a HIV status within the gay community. That is, he is not perceived as a threat of seroconversion to HIV-negative men that are uncomfortable with the presence of single, sexually active HIV-positive men, or intimidated by ‘magnetic’ relationships in which one partner is HIV-negative and, therefore, at risk. He is also not required to self-disclose for the purpose of dating or sexual connection, which grants Ian more control over when he might choose disclosure as desirable. Yes, I do really manage my public persona as far as being positive. It’s because I [experience] fear from the gay community. Well, because I have a partner, I’m partnered so I feel like I’m not worried about that. We’re both positive, so … (Ian) I felt both a little sadness and sort of a poignancy that she’s so vulnerable now towards the end of her life. I also thought that maybe I probably shouldn’t tell her I’m positive. (Adam)
Adam struggles deeply with his desire to not disclose his status, and his realisation that his life feels emotionally impoverished through a lack of interpersonal relationships. Adam and Ian both expressed a concern that they must control this information and gauge carefully whether or not it could be handled or would end well. I kept thinking I’m gonna prepare them. I’m gonna help them. Like, you can you know just little bits just little bits of words here and there … Somehow I will be able to come out to them and they will be accepting because of the way I did it. Over the years I thought about doing a video, writing letters. The different ways I could do it. (Ian)
Conversely, Kevin explained that he had chosen to not disclose his status to anybody, while simultaneously viewing this as detrimental to his own well-being. Kevin was able to recount, however, one occasion when he disclosed his serostatus to a former romantic partner, which he experienced positively: So … I sat him down and told him, because I ran into him on the street and basically said, ‘I wanna sit down with you and talk to you,’ ‘cause he was back in town and I just wanted
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to … deal with this … and he was so nurturing, he held my hand through me telling him the whole thing. It was absolutely what I didn’t expect. (Kevin)
In this moment, Kevin experienced a mismatch between his imagined and the actual experience of disclosing to a previous partner. Through doing this, Kevin broke the previous trend of ‘bottling up’ his HIV diagnosis. Finally, Ian spoke of his experiences surrounding serostatus disclosure and receiving social support from his family. Ian combined his disclosure to his family that ‘not only [am I] gay, but [I’m] now HIV positive’. After disclosing his serostatus Ian described feeling that his family was standing behind him as he returned to navigate his life. The rationale behind serostatus disclosure differed between each of the men, yet a superordinate theme was shared: if disclosure was not well received, an important, meaningful relationship would be lost. Ian, for example, introduced the idea of managing his public persona and selectively disclosing his status whilst taking into consideration how his disclosure will affect his partner, who is also HIV-positive yet less open regarding his status. Ian’s serostatus disclosure is further mitigated by how his partner would react to disclosure or denial of his serostatus, which could in turn lead to a shaming or stigmatising experience for his partner. This supports recent findings from similar men interviewed in Europe, whereas concerns regarding disclosure and control of information highlight that disclosure remains a complex social phenomenon (Flowers & Davis, 2013), and cannot be reduced to its component parts as an isolated health behaviour that can be promoted or increased in a direct, linear way. In Adam’s case, he focused on how his disclosure might ‘burden’ his ‘vulnerable’ mother, selecting to describe this choice as one of protecting others, as if his identity is so shameful, so aversive, that another could not bear to carry that stigma alongside him. This notion that one can spare family and friends from the mental and emotional strain of providing support is widespread (Smith, Rossetto, & Peterson, 2008), and there may be truth to the notion that some significant relational others may choose to avoid or limit interactions as they perceive the commitment and circumstances may prove too emotionally taxing (Brashers, Neidig, & Goldsmith, 2004). Kevin described compartmentalising the experience of living with HIV as a sign of the shame he experiences around his serostatus, and by not disclosing his HIV status and not talking about it ‘he was poisoning and wounding his soul’. As Kaufman and Raphael (1996) write; ‘silence breeds shame every bit as much as shame breeds further silence’. The choice to actively avoid and not disclose one’s HIV status is a heavy burden, and likely contributes to a sense of distress and loneliness for men living with HIV who make this decision. Further, expecting and fearing stigmatisation and rejection is associated with more constricted social networks. Stigma in response to serosorting Within these narratives, participants mentioned the frequent experience of online serosorting as a primary site of their experiences with stigmatisation. Every participant noted advertisements posted online in which HIV-negative men would explain they were only seeking other HIV-negative men. This is often referred to as the ‘UB2’ phenomena, after the Internet shorthand ‘Neg, UB2’ (i.e. ‘you be, too’), indicating that the person posting the ad is serosorting. This is not a wholly one-sided phenomena,
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however, with many websites and personals ads existing that attest to HIV-positive men only seeking other HIV-positive men in order to avoid the possibility of exposing a partner to HIV. Participants described an experience of serosorting as extending even to individual relationships and communities, whereby both HIV-positive and HIV-negative men might screen prospective social or sexual partners for concordance in HIV status before associating with them. The observation of HIV-negative men serosorting to find HIV-negative partners potentially contributes to elevated levels of felt stigma and social marginalisation, as serosorting renders the positive/negative community divide more visible (Ware, Wyatt, & Tugenburg, 2006). These observations can result in elevated levels of stigma, feelings of ostracism and social marginalisation. Further, the marginalisation appears unidirectional, as there does not appear to be a phenomena in the literature attesting to HIV-negative men feeling left out or excluded by social networks that restrict access to HIV-positive men, which may further exacerbate a sense of undesirability among HIVpositive men. Among HIV-positive gay men, such feelings have a considerable impact on mental and emotional well-being, causing significantly increased levels of anxiety, loneliness, depressive symptoms, suicidal ideation and engagement in avoidant strategies such as social withdrawal (Courtenay-Quirk, Wolitski, Parsons, & Gomez, 2006; Grov, Golub, Parsons, Brennan, & Karpiak, 2010). Each of these strategies was reported by our participants, with most describing withdrawing from the use of many popular social or romantic websites in order to protect themselves from exposure to these messages. So … how did how did your relationship change with negative men at that time? (Interviewer: MDS) Okay, well, I remember standing outside of the Castro movie theatre and just feeling separate from everybody, like … I’m positive and they’re negative. Even though statistically … (Ian) A lot of them are probably positive. (Interviewer) Right, but that’s how I felt or thought and … I thought no one will want me. I thought, that’s a big one … at least with negative men. And if you go online to craigslist or somewhere, it’s like, everybody is … posting they wanna be with a negative person, so I don’t go there anymore. I have a partner now … if you go there and you’re positive, it’s not a good place because you’re reading this ‘negative for negative,’ and I know it’s not personal but …. But it’s bad … it is. (Ian)
Ian explains that after his diagnosis he felt a disconnection from the gay community, and when attempting to meet other men on the Internet, the disconnection he experienced felt reaffirmed by discovering the frequency with which HIV-negative men were serosorting. Ian elaborated that it was his attempts to meet a partner on the Internet that led to his initial experience of stigma as a man living with HIV. I found that when I took to trying to meet people, and deal with people, and play with people, in an Internet arena of choosing people that way … that’s when I really started to experience stigma. (Ian)
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Attempts to negotiate a spoiled identity
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The concept of spoiled identity was originally introduced by Goffman (1963). Goffman defined stigma as a process by which the reaction of others spoils normal identity. Ian, Adam and Kevin all described strategies intended to reduce felt stigma, as well as stigma management strategies intended to repair the disequilibrium caused by the ‘hopelessness’ of living with HIV. Subsequently, participants tended to link these efforts with either the prior or co-occurring management of their identities as gay-identified men. Ian stated that when he was younger he would try and ‘reprogram’ himself as a heterosexual. I remember trying to reprogram myself. I remember looking at my Dad’s Playboy magazines. Like I had heard about … stimulus response and I was like, you know, I didn’t wanna be gay. (Ian)
Similar to the earlier discussion of serostatus, Ian’s words reflect an awareness that society privileges heterosexual experiences over sexual minority identities. Ian’s experience may have been influenced by growing up in a setting which cultivated a belief that the feelings Ian was having needed to be ‘reprogrammed’. Ian’s felt stigma is described primarily as deriving from his religious community and family, who instilled a belief that his same-sex attraction was wrong. Consequently, this contributed to his experience of a spoiled identity and within this history, Ian’s spoiled identity is a product of growing up in an environment that supported therapies that sought to alter a person’s sexual orientation. Further, Ian described speaking with family members that actively stigmatise people living with HIV. Ian:
… with Mom, I can tell you, with Mom she’s afraid of people knowing … they have a small restaurant, and she’s like, if people ever found out here they wouldn’t eat at the restaurant, you know. (Ian) And even this last time, when I was in just a few weeks ago … my Aunt’s a nurse and … I’d sent out this email asking for people to donate for [the] AIDS Walk … so she donated … but she said, you know, like, ‘I was glad to help but that’s just a drop in the bucket, it’s not going to change anything probably’. And she said, ‘Don’t listen to them, they don’t know all the ways you can catch it, because they don’t tell us everything.’ You know, it’s like there’s this suspicion that [AIDS is] more contagious. (Ian)
Goffman (1963) explained that within certain cases, a stigma may possess the ability to become the ‘master status’. That is, a highly stigmatised trait, such as living with HIV, has the capacity to compromise the identity, integrity and complexity of an individual and deduce who they are to a label surrounding their HIV. Subsequently, the person accommodates an identity that is almost entirely encapsulated by their serostatus. Such labels or beliefs may lead to feelings of existential crisis and entrapment. Adam speaks of his HIV as evoking a search for a greater meaning. In this regard, Adam is negotiating a spoiled identity and purposively searching for a ‘greater meaning, or existence’. It is not uncommon that HIV triggers deep spiritual questions about the meaning of the illness, purpose in life, and one’s relationship with God and others (Cotton et al., 2006; Pargament, Koenig, Tarakeshwar, & Hahn, 2004).
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… I don’t know what or where I can go from here until I fall in that 6 foot hole that makes my life more meaningful, more purposeful. (Adam)
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For example, such existentialist questioning prevailed Adam’s dialogue; the above quotation from Adam illustrates a level of uncertainty as to where his life will go from this point, and refers to a metaphor introduced in a group therapy session intended to heighten awareness of the consequences of continuing strategies that have not resolved feelings of despair in order to encourage different courses of action (i.e. creative hopelessness; see Hayes, Strosahl, & Wilson, 1999). You know, I want some kind of intellectual understanding and clarity, and perhaps I want some sort of validation or reinforcement of where I’m trying to stumble around and find values. (Adam)
Adam attempted to negotiate a spoiled identity by searching for values. Throughout Adam’s narrative his experimentation with diverse religious philosophies was central to his experience of what it meant to live with HIV. For Adam, religion or spirituality appeared to provide the most meaningful path to finding answers for the difficulties he experiences navigating the uncertainty of his HIV status. The search for spiritual truth may act as a means of accumulating the resources necessary to cope with one’s serostatus and the responses of others, and may also assuage the difficult experiences of shame and guilt associated with seroconversion. Throughout Adam’s responses, he voiced a sense of existential crisis and endorsed a degree of extrinsic religiosity, perhaps a means ‘to provide security and solace, sociability and distraction, status and self-justification’ (Allport & Ross, 1967, p. 434). I think the thing, probably, that I’ve gotten from the group, and I’ve heard some of this elsewhere in 12 steps and DBT, [is that] there’s more focus now … partly around acceptance, just accepting well the situation of having HIV. That this, I’m living with this body that has HIV and this is my path. (Ian)
Ian regarded his experience of living with HIV as informed by his experience of dialectic behavioral therapy (DBT), alcoholics anonymous and the HIV stigma group he participated in with the first author in acceptance and commitment therapy (ACT). Ian expressed a greater level of acceptance of living with HIV as an attribute that did not fully define his experience – that is, his body possesses HIV, though this does not fully define him or his life. Both therapies Ian references incorporate mindfulness – a focus on paying attention to this present moment in a non-judgemental, kind way – and radical acceptance – a belief that in order to find workable means of navigating life, one must fully embrace what is already present. Ian expressed this as a philosophy he has found deeply meaningful in reducing the centrality of HIV in how he defines himself. You know, I sat there originally when I was on disability and … now I’m this outcast and exile and … HIV-positive disabled person, and … you know that’s not real to me. (Kevin) Now the way I look at shame is: ‘Oh good, there’s a big old vein of love behind this, so let me tolerate it and move through.’ (Kevin)
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As with Ian, Kevin credited the principles of the HIV-stigma group as fundamental in negotiating a spoiled identity. Kevin linked this negotiation with the importance of disclosure, as Flowers, Davis, Larkin, Church, and Marriott (2011) similarly find. He explained that by not disclosing his difficulties to the group, he was able to temporarily avoid experiencing his shame, and thereby avoid being vulnerable among other members. Further, Kevin made the deeper connection that refusing to discuss his HIV status when experiencing shame was not only a tool of keeping others at a distance; Kevin was also closing himself off to the affective experience of closeness and love with others. For this reason, he chose to notice when he experienced shame and used this as an opportunity to remind himself that he would be able to experience love toward others, and receive warmth and love from others, only when he moved more deeply into this vulnerable space. Yeah yeah, and I pretty much thought, yeah, I had a very strong correlation with being gay and HIV positive. (Kevin) I … didn’t realize how much … HIV stigma, gay stigma, effeminate man stigma, being on disability stigma, I didn’t realize the shadow that all that had cast over my entire life, and how many areas of my life the lights had gone out. And that I was just holding onto a few things and going with those, and throwing other stuff overboard, because I just couldn’t fight the total toxicity of stigma. I had to fight my battle, choose my battle … I found … working with stigma to be a gateway, a very deep gateway into like the core of me and to the crossroads where all my different stuff collides. (Ian)
Finally, each narrative drew attention to the ways that HIV only heightened an experience that was already present: the experience of possessing a spoiled identity related to being gay. This played a central, organising experience in their lives prior to seroconversion. As noted above, the emotional demands of testing HIV-positive often provided the impetus to disclose to conservative families. The role of HIV in contributing towards a spoiled identity was symbolic and incidental; as noted above, participants did not bear physical marks of HIV, such as facial wasting. Rather, HIV was perceived by the participants to reinforce their status as other, the differentness that shaped their lives as a result of being gay, having sex with other men. In this way, HIV might be seen as, principally, heightening the salience of not belonging to the majority group due to one’s sexuality. It is the secondary discrimination within the gay community that, in turn, established minority status and a spoiled identity as a fixed status. Discussion These three narratives expressed a sense that there is something damaged, something toxic, about being HIV-positive. Further, with some exception, the prior experiences of participants highlighted the ways in which HIV might assume centrality in their lives and definition of the self. Similar to recent samples in Europe, the men in this cohort described their HIV as a central, unifying element in their sense of self (Flowers & Davis, 2012). Surprisingly, the distress associated with HIV was most often related to relationships within the gay male community, the search for friends or lovers and the salience of serosorting as a social practice that perpetuates a message that HIV makes one different and sets one apart from acceptable social belonging. The extant literature
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does not speak to the long-term topology of HIV self-stigma; it is unfortunately and truly unknown whether a standard trajectory exists, how it ameliorates outside of active treatment, and whether the few attempts at targeting HIV-related self-stigma or shame for treatment have a positive effect on the health and well-being of participants. These narratives do highlight the struggle to maintain meaningful, beneficial relationships, however. The experiences of Ian, Adam and Kevin are further clarified through the lens of experiential avoidance. ACT (Hayes et al., 1999) considers the central experience of avoidance of unwanted emotions, mental content and verbalisations, and efforts to distract or control the moment-to-moment experience of these, as a taxing form of mental behaviour that paradoxically increases the subjective experience of stress. In the case of relationships, the vulnerability and disclosure required to feel intimately connected with others are behaviourally avoided in an attempt to reduce contacting shame in that moment. That is, if the likelihood of discovery or disclosure is believed to give rise to an overwhelming internal experience, one means of controlling that would be to remain guarded in the presence of others, not avoid or adopt attitudes dismissive of romantic relationships, or to minimise self-disclosures. Attempts to control internal processes, however, are generally unsuccessful (Wenzlaff & Wegner, 2000), meaning that through reducing opportunities to connect in efforts to control and prevent experiencing shame and stigmatising thoughts, these men may have been more likely to experience shame. In the case of shame and stigma, these unwanted experiences belong to the traits, attitudes and labels that one has assigned as properties of the self (Luoma, Kohlenberg, Hayes, & Fletcher, 2012). In practice, this will result in a restriction of meaningful relationships – e.g. ‘I can protect myself from the hurt of rejection if I keep everyone too far away to realize that I am damaged/spoiled/unwanted’. The relationship between gay men living with HIV and the likely causal role of sexual intercourse may create a particularly charged context in which social partners attempt to control or reduce the mutual flow of information. For instance, early research on HIV found that the inference of high-risk behaviours that led to seroconversion are often negatively evaluated, leading to less support (Bennett, 1990; Berk, 1990). Likewise, the relationship between HIV-related stigma and reduced medication adherence or contact with medical providers may also be explained in this way (Sayles et al., 2009). Specifically, despite important reductions in the number of medications required to sustain an undetectable viral load, even a single pill regimen serves as a daily reminder of one’s HIV status. Finally, there is a great deal of attention, fear and avoidance in the gay community surrounding the reduced disclosure of HIV status to one’s sexual partners, which may result in a greater likelihood of serodiscordant sexual partners (Poindexter & Shippy, 2010). This is a bidirectional relationship, however, with both HIV-negative and HIV-positive men inferring that a lack of discussion and willingness to participate in condomless intercourse implies seroconcordance; this is a phenomenon identified by early studies of HIV and gay and bisexual men (Gold & Skinner, 1993; Halkitis & Parsons, 2003; Parsons et al., 2005, 2006; Suarez & Miller, 2001). This pattern of assumptions has been highly stable throughout the history of the pandemic, and does not appear to have shifted over time. Further, serosorting or open discussion surrounding serostatus has been a controversial, unpopular focus of intervention – societal experiential avoidance appears to contribute toward the marginalisation of these discussions. Within this specific group of men, there were a number of unique factors that may not capture the entirety of current experiences living with HIV. Despite the frequency
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with which older men have been exposed to highly toxic early regimens, the men that participated in these interviews reported a surprising degree of freedom from side effects, and no member bore visibly identifiable marks of serostatus. This may not only reduce the generalisability of these findings to other white, gay men affected by HIV, it may mask important aspects of intersectionality more typical of aging men experiencing HIV-related stigma. Further, the social landscape in which HIV is experienced is currently in flux. With renewed faith that an undetectable viral load may be an effective deterrent to the transmission of the virus, as well as a high rate of adoption of pre-exposure prophylaxis (PrEP) among HIV-negative gay men in San Francisco, even in the short period since these interviews were conducted, changes have begun to happen again. As a local physician and HIV researcher quipped regarding PrEP in a local lecture, ‘If everyone in the gay community is taking a pill a day, and seroconversion has stopped, will there really be a positive and negative divide anymore?’ This may further complicate the ‘obstinant essentialism’ noted among gay men living in Scotland (Flowers & Davis, 2013). While it may be too soon to predict, there is every reason to believe that this is a quickly changing aspect of the HIV-positive experience. Further, the concerns of managing an immunological status that is not immediately visible affect multiple domains in health psychology, such as chronic pain, diabetes or Hepatitis C. Despite the unique medicalisation of HIV status, each of these conditions concern a pervasive diagnosis requiring disclosure, the potential for chronic management and the likelihood of rejection or adverse reactions. In conclusion, despite increases in the efficacy of ART, a reduction in visible signs of HIV, and the high prevalence of visible HIV-positive communities in major urban areas, HIV-related stigma continues to pose difficulties and challenges to the integrity of gay men. Our research indicates that the struggle of how one defines and manages a definition of the self as possessing a potentially fatal disease is a central driver of behaviour, affect and relationships among HIV-positive men. As HIV-positive men are aging in North America and Europe, it is important for providers to be mindful that most persons living with and affected by HIV learned in their youth that seroconversion was a death sentence. For this reason, as HIV becomes increasingly difficult to detect through bodily signs, and as medical trajectories continue to converge with those of HIV-negative persons, it is imperative to remember the psychological burden of HIV and the myriad invisible forms of suffering it births. Acknowledgements This study was funded by the New Investigator Award from the Center for AIDS Prevention Studies Innovative Grants Program 2010. We also thank the participants, as well as Aishat Giwa, Megan Sirna, Lauren McGuire, and Jessie Murphy for administrative and logistic support for this study.
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