To tell or not to tell?
Understanding the process of HIV disclosure among men in the Netherlands
Master’s thesis for Cultural and Social Anthropology at the Graduate School of Social Sciences (GSSS) Sophie I. Appel, 10875522, sophie.appel@student.uva.nl / sophie.appel@hotmail.com
Supervisor: Danny de Vries
Second readers: Kristina Kraus & Vincent de Rooij Amsterdam, 16-02-2017
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Declaration on Plagiarism and Fraud:I have read and understood the University of Amsterdam plagiarism policy
[http://student.uva.nl/binaries/content/assets/studentensites/uva-studentensite/nl/a-z/regelingen-enreglementen/fraude-en-plagiaatregeling-2010.pdf?1283201371000]. I declare that this assignment is entirely my own work, all sources have been properly acknowledged, and that I have not previously submitted this work, or any version of it, for assessment in any other paper.
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Abstract
The shift from an acute into a chronic illness involves an emphasis among people living with HIV and AIDS (PLWHA) on how to manage long-term psychological, moral and social impacts in their personal experiences outside of formal healthcare. A major element is disclosure. Existing literature suggests HIV disclosure is a process of decision-making but does not give a clear understanding of how this process occurs.
Based on almost four months of fieldwork in Holland, the present research aims to study how disclosure is negotiated in the everyday lives of HIV-positive men. From June till mid- September 2016, I conducted 27 semi-structured interviews focusing on three groups: heterosexual men, homosexual men and a third group of men who identified as (n)either homo- or heterosexual, which I called the (n)eithers. By taking a processual and narrative approach, I reached new perspectives in understanding how HIV disclosure is personally experienced, negotiated and challenged. In other words, how Dutch men gave meaning to the process of HIV disclosure.
Although most PLWHA can resume a “normal” healthy life through Antiretroviral Therapy1 (ART), respondents’ narratives reveal that HIV disclosure is not just about disclosing one’s HIV-status, but about living with HIV. HIV disclosure is a continuing process of giving meaning to oneself and the world around them and is embedded in larger life-histories. First, all respondents negotiated HIV as a stigmatized chronic illness in their disclosure process. Second, my interlocutor’s HIV disclosure narratives revealed a general process of accepting and sometimes even normalizing HIV. This general process consists of four phases: shock, realization, acceptance and normalization in which PLWHA gradually realize and accept that HIV is permanently part of them and continuing a normal life is possible but it will never be exactly the same as before HIV. Although this general pattern is apparent in all my respondents’ personal stories, there are many factors, like sexual orientation, generation, ethnicity and relationship status, that can influence the intensity and/or duration of each phase as well as how HIV disclosure is experienced, negotiated and challenged within each phase. Third, findings show respondents’ negotiations of (non)disclosure are influenced by an intersection of multiple factors.
Going through the stages, determines in some extent readiness to tell or not to tell as this also depends on other intersecting factors. I therefore argue for a more nuanced understanding of when disclosure is appropriate.
Keywords: Netherlands, HIV disclosure, process, men, identity politics, intersectionality, narrative approach, ethnography, interpretative phenomenological analysis
1 Antiretroviral Therapy or ART is medication that treats HIV. The medication does not kill or cure the virus, but slows it down. The pills themselves are referred to as ARV: Antiretrovirals.
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Preface
An anthropologist’s main task is to “make the strange familiar and the familiar strange.” I think I succeeded in both. Before starting this masters I would have never thought of doing research in the field of HIV. For me, HIV was something remote. Born in 1989 and growing up in a small village near Rotterdam, I did not experience the eighties’ HIV epidemic.
Nevertheless, in my search for a research topic, I came across studies of HIV. In 2014, I lived in Cape Town, South-Africa, for about six months. During that period I learned HIV was a big problem. I started looking at the problem of why South-African people did not get tested for HIV. I asked my friends and acquaintances in Africa and my supervisor Danny de Vries, who has a broad network in South-Africa, to get me in contact with organizations and people relevant to my study. However only one organization, in Pretoria, South-Africa, responded. Meanwhile I read an extended amount of literature on HIV and conducted two interviews with HIV-positive homosexuals in Holland (an assignment in
preparation for fieldwork). This made me realize that there are still various problems and issues regarding HIV in the Netherlands that require further investigation. Due to the lack of response from South-Africa, I decided to focus on the Netherlands. Moreover, reading the large scale study Positief Geluid2 and the Uit
de kast campaign by the Hello Gorgeous magazine 3 inspired me more, as did conversations with Adolfo Lopez Mejia, (now ex) Board member of the HIV Vereniging Nederland (HVN),4 and Danny de Vries. HVN concerns make my research project not only of academic interest but also of public importance, as it aims to better understand, reach and counsel PLWHA.
This research project started as something I was unfamiliar with. It became a puzzle. A puzzle I hated at times because of its complexity, but mainly a puzzle which enriched me with knowledge, and allowed me to meet and become friends with great people to whom I am enormously grateful for sharing their very personal stories. I learned so much of how they looked at life and how they coped with taken-for-granted ideas. As the stories of my respondents enriched my life, I am convinced they will also enrich yours. I hope HIV-related organizations like the HVN pick up my suggestions and integrate them in their plans and actions to make the unfamiliar more familiar for many more people and enrich their lives too.
2 Translated as ‘Positive Sound’. This is a large scale research conducted by the Dutch Association of PLWHA (HVN: HIV-Vereniging Nederland) in 2014-2015 to find factors that contributed to a satisfactory quality of life. 3 Translated as ‘Out of the closet’. This magazine featured photographs and stories of several PLWHA, which differ on the basis of age, gender, sexual orientation, encountered problems, to expose HIV to the general public by people with HIV who are open about it. The people of concern were: mothers with and without children and hetero –and homosexual men.
4 HVN is the Dutch Association of people living with HIV and AIDS (PLWHA) in Holland. See:
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Acknowledgements
First and foremost I would like to thank my supervisor Danny de Vries who has always been patient and in for long, interesting and useful discussions which really helped me to lift my thesis to a higher level.
Of course, I am deeply grateful to those who were willing to share their stories with me, despite the intense personal experiences revealed. For some, it meant reliving unpleasant events and feelings, for some, it meant remembering the stigma and shame, and for some it meant recalling the unconditional love and support of their partners, close friends, family, doctors, and nurses. The stories of the men who participated in this study have inspired me and I am sincerely grateful to them all for their openness and trust. They made this research possible.
Special gratitude to Adolfo Lopez Meija and Daan Diederiks of the HIV Association who
believed in the value of this research from its first moment. Thank you for your enthusiasm, unconditional support, and everlasting input. I also must thank the Dutch HIV Association, HIV Vereniging, the DC-clinic, other organizations, and people like Leo Schenk of the magazine Hello Gorgeous who also helped me find respondents.
I would like to thank Professors Alex Strating, Tina Harris, Oskar Verkaaik, and Thijs Schut at the University of Amsterdam, who guided me during this one-year master’s program.
Finally, I would like to acknowledge the great support of my friends and family: my friends (I cannot name you all), who listened to my concerns and kept me motivated; my parents, Marees Derksen and Paul Appel, for their unconditional love and support and creating the opportunities for me to chase my dreams.
Thank you all for making this journey much more pleasant, for your openness, comfort, inspiration, feedback, criticism, sensitivity, and thought-provoking words.
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Table of Contents
1 Introduction: ... 7
1.1 Situating the research empirically: My HVN journey ... 7
1.2 What exactly is disclosure? ... 7
1.3 Thinking about identity politics and politics of difference ... 9
1.4 Study setup ... 10
2 Literature review ... 12
2.1 Intersectionality ... 12
2.2 Disclosure during the age of HIV ... 12
2.3 A narrative approach ... 14
2.4 Existing literature and theories on disclosure ... 15
3 Methods ... 17
3.1 General Approach ... 17
3.2 Detailed method ... 18
3.3 Analysis methods ... 20
3.4 Ethical considerations ... 23
4 Results: Between the mainstream and the medical ... 24
5 Results: The influence of the gay scene... 26
Sam ... 26
Steven ... 30
Marvin ... 33
Chapter conclusion ... 35
6 Results: Nuances -- moving beyond identity politics ... 36
Jeroen ... 36
Karel ... 39
Gavin ... 44
Dirk ... 50
Chapter conclusion ... 55
7 Results: The general process ... 56
8 Discussion: The complexity of the reality ... 61
9 Conclusion ... 67
Bibliography ... 69
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Introduction:
1.1
Situating the research empirically: My HVN journey
I feel happy, honored, and proud to be able to carry out research so the HVN can help HIV-positive people cope with their diagnosis. For me, this is very important because I believe it is unnecessary for HIV-positive people to live in fear of being stigmatized and face the dilemma whether to be open about it. I cannot change the stigma with this research, but I believe it can show how homo- and heterosexual HIV-positive men cope with the dilemma of (non)disclosure and reveal what is at stake for both groups, so people who have just been diagnosed can learn from their experiences and be prepared for the future. (25th of April,
2016).
This was my response after the Board of the HVN said they were “enthusiastic” about my research proposal and gave me a “green light.” This happened a few days after my meeting with Adolfo about a possible study in cooperation with the HVN. The HVN represents the interests of all HIV-positive people, puts people living with HIV and AIDS (PLWHA) in contact with each other, and provides information and advice to PLWHA.
Adolfo and I discussed how the study could serve us both. The HVN finds it hard to reach heterosexual men, and there is still very little research about HIV disclosure in Holland and abroad, specifically concerning heterosexual HIV-positive men. I, after reading much literature on HIV and conducting two interviews with HIV-positive homosexuals in Holland, realized that HIV disclosure can be a dilemma for many PLWHA and therefore needed further investigation. The following research questions were thus developed:
How is disclosure negotiated in the lived experiences of homo- and heterosexual men with HIV in Holland? And what does this tell us about the similarities and differences between these groups?
The answers would allow us to understand if and how homo- and heterosexual men differ in the process of disclosure, which the HVN could incorporate in its attempts to better reach both groups.
1.2
What exactly is disclosure?
“Disclosure, or self-disclosure, is a process in which personal (often private or confidential) information is verbally communicated from one person … to another …” (Chelune, 2015, as cited in Li et al., 2015).
Existing literature emphasizes that disclosure is a gradual, selective process, not a single event (Chaudoir & Fisher, 2010, Chaudoir et al., 2011) and depends on the social and cultural context (Qiao, Li & Stanton, 2012). A growing number of studies focus on the process of disclosure, including decision-making, patterns, and post-disclosure adjustments (Li et al., 2015). It is an ongoing intra- and
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al., 2013: 839). By “negotiation” I mean how my respondents reached an agreement with themselves and their surroundings regarding their (non)disclosure decisions. I consider disclosure (but alsonondisclosure) to be a gradual, selective process in which PLWHA make informed considerations based on subjective, conscious reasoning of the social and cultural contexts through time and space. It is a process that continues over PLWHA’s lifespan. Disclosure is the entire process of decision-making before and during the acts of telling others personal information, in this case about HIV, and can be influenced by the social world.
A recent study of De Vries et al. (2016) among 468 Dutch HIV-positive people shows that many Dutch PLWHA remain caught up in a vicious cycle of stigma and nondisclosure. Their results showed that stigma motivates nondisclosure, selectively and completely. Because nondisclosure implies silence, it allows HIV-related stigmas to endure. This further motivates nondisclosure among PLWHA, who are caught in a vicious cycle of self-stigmatization and nondisclosure. This research emphasized the importance of further study to the disclosure process to identify solutions to break this cycle.
Adolfo had mentioned he was leaving the board of the HVN. He introduced me to Daan Diederiks, a new board member, who became my new contact person. Daan’s main task was to better understand and reach heterosexual, seropositive men, so he also expressed enthusiasm about this research.
On June 1, 2016, the three of us met. Unfortunately, at the last HVN board meeting, the rest of the board expressed uncertainty about the project because they were afraid it would usurp too much time from the staff members, as had happened during Positief Geluid,5 a large-scale study. However, this was definitely not the case now, so I realized the setup, planning, and relevance of this study must be
absolutely clear for the HVN. A document was drawn for Daan to present at the next board meeting (June 15th). I prepared an introductory letter to approach organizations and HIV-positive men with an informed consent. I also prepared a schedule and a document about the relevance of the research for the HVN and existing scientific literature in general. Adolfo and Daan adjusted these documents and we discussed important points. Everything seemed enough to convince the board members. However, whether due to bureaucratic thinking or a misunderstanding of the concept, setup, or value of the research, the Board decided to limit collaboration to sending out the introductory letter and informed consent to heterosexual men known at the HVN. That is where their cooperation stopped. My HVN journey had started out with question marks. My green light had changed to orange.
On one hand, the HVN wants to understand why they cannot reach heterosexual men, but on the other they did not want to give full support to a study that investigates this for them! This paradox made me wonder what other factors contributed to this sudden “orange” light. Nevertheless, I continued my research.
5 Translated as ‘Positive Sound’. This was a successful large-scale study conducted by the Dutch Association of PLWHA (HVN: HIV-Vereniging Nederland) in 2014-2015 to determine factors that contributed to a satisfactory quality of life.
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1.3
Thinking about identity politics and politics of difference
Considering that my research population was essentially defined by the HVN (how better to reach homo- and heterosexuals), I realized this was a form of identity-based politics. Identity politics are political positions or causes “that focus on the interests and perspectives of the social group with which people identify” (De Vries, Brenman & Tang, 2015) and refers to the use of the category of identity – usually in a larger context of inequality or injustice – to organize social and political action “with the aim of asserting group distinctiveness and belonging, and gaining power and recognition” (Neofotistos, 2013). Identity politics as a mode of organization is greatly connected to the idea that some social groups are oppressed or ignored, and such people should assemble based on their shared identity. But apparently, heterosexual HIV-positive men have interests or perspectives different from those of HIV-positive homosexuals. “Central to the practice of identity politics are the notions of sameness and difference, and thus the anthropological study of identity politics involves the study of the politics of difference” (Neofotistos, 2013).
During my field research period, a third group –I named them (n)eithers – appeared: men who identified as (n)either homo- or heterosexual. Some identified as bisexual, for others, identification depended on the situation. Within all groups, other factors – e.g., profession, upbringing – were important determinants: disclosure politics seemed not merely influenced by one identity category such as sexual orientation. This was interesting because it deviates from the social categorization in which the HVN framed the problem of disclosure. My respondents put a nuance to this approach, making me wonder again: Is this institutionalized sexual-based categorization HVN’s problem?
This is where the intersectionality paradigm comes in. “The problem with identity politics is not that it fails to transcend differences … but rather the opposite—that it frequently conflates or ignores intragroup differences (Crenshaw, 1991: 1241).” So not only between, but also within, the three groups, HIV disclosure can be negotiated and experienced differently.
Intersectionality goes beyond categorization based on sexual orientation by emphasizing that multiple other identity categories (age, sexual orientation, geography, etc.) intersect to influence (or not) one’s experience at a particular moment in time and space. This suggests, for example, that a heterosexual man diagnosed in 1999 might show similar HIV-disclosure experiences to a gay man who was diagnosed in 1995 than with a gay man diagnosed in 2012. Or, two men differing in their sexual orientation
diagnosed in 1995 might experience a similar HIV-disclosure process through intersection than the homosexual diagnosed in 2012, because in 2012 much more was known about HIV and side-effects from Antiretroviral Therapy (ART) were practically non-existent (compared to the nineties).
I realized that intersectionality encourages reflection on whether it is possible to identify nuances within what seems, at first glance, a straightforward division – homosexual or heterosexual – to
understand disclosure. Understanding which categories intersect is important to understanding if sexual orientation is the correct perspective to understanding differences/similarities between the three groups.
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With that orange light in the back of my mind, I really wanted to understand whether there is a particular way HIV disclosure is experienced and any interfering factors.Existing literature acknowledges that disclosure is a dynamic ongoing process of carefully managed decision-making based on ongoing intra- and interpersonal negotiations with one’s self, close environment, and society in general. However, studies fail to investigate this from a processual and emic perspective: how PLWHA’s (non)disclosure decisions are made, how they change through time and space, and the consequences these decisions have on future disclosure (non)decisions and well-being. Given the importance of (i) HIV disclosure and (ii) investigating it from a processual perspective (which lacks in existing literature), I decided to look at disclosure in the context of major identity categories: sexual orientation, relationship status, ethnicity, and so on.
Given the importance of HIV disclosure, little research has been conducted on the process in the Netherlands (De Vries et al., 2016). Furthermore, almost no significant research studies if and how hetero-, homo- and other sexually orientated consider (non)disclosing their HIV-positive status. They do summarize a list of reasons for and against disclosure, suggesting that PLWHA assess consequences and outcomes based on such reasons (Stutterheim et al., 2011b; Stutterheim, Bos & Schaalma, 2008; HVN, 2015). However, the process itself is not investigated. Moreover, I am aware of no research focusing on the ongoing process, subsequent consequences of (non)disclosure, future considerations for
(non)disclosure, or their well-being as a result, giving a clear understanding of how these processes transpire.
This study investigates how disclosure is negotiated in the everyday experiences of HIV-positive men in Holland. It does not merely look at and compare why homo-, hetero- and other sexually orientated men tell “others” about their status, but investigates it from a processual and emic perspective: how HIV disclosure is experienced, negotiated, and challenged, to understand the webs in which HIV disclosure is spun. What determines (non)disclose? How do these webs “hang together” with identity politics and intersectionality? What are the consequences? This to get a more nuanced understanding of the process of HIV-(non)disclosure decisions based on sociocultural factors. In doing so, it aims to contribute to
anthropological understandings of (non)disclosure in people’s private and everyday lives. It also offers relevant ethnographic illustrations of how PLWHA make sense of their world and how they deal with taken-for-granted, but flawed, understanding. Therefore, this thesis contributes to anthropological debates of identity politics and intersectionality.
1.4
Study setup
To analyze the disclosure process, this study begins with a literature review regarding concepts of intersectionality, the contemporary meaning of disclosure in the HIV realm, and the significance of looking at HIV disclosure from a narrative and processual approach. Chapter 3 describes the methods as well as my epistemological and ontological stance for collecting narrative data. Chapters 4 to 7 form the Results section, its two-fold aim outlined below.
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Resultssection
Aim 1: To illustrate HIV disclosure as a process of normalization of a
stigmatized illness.
Aim 2: To show that the lens of identity politics based on sexual orientation through which the HVN looks at HIV disclosure is arbitrary and inappropriate. Chapter 4 - Contradiction between ignorance of
mainstream society and medical developments
- respondents’ disclosure experiences. Chapter 5 Seven ethnographic narratives
illustrating:
- this contradiction does not make it any easier to disclose HIV status. The stories make clear that HIV is
stigmatized
- all go through phases of shock, realization, acceptance, and normalization.
HIV-disclosure process of three
homosexual respondents: their experiences are totally different despite the same sexual orientation, illustrating intragroup differences that contradict with the HVN’s approach.
Chapter 6 HIV-disclosure process of four others to
move beyond identity politics and show other intersecting factors.
Chapter 7 Summarizes the general HIV-disclosure process: realizing, accepting, and normalizing HIV as a stigmatized illness.
Chapter 8 discusses the relevance of looking at HIV disclosure on the basis of intersectionality instead of identity politics. Further, an interesting concept is suggested to provoke further discussion on the conceptualization of the HIV-disclosure process as a perpetual liminal process. Finally, the final chapter constitutes the conclusions and answers the research question.
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2
Literature review
2.1
Intersectionality
“Intersectionality” refers to the “interdependent and mutually constitutive relationship between social identities and structural inequities of oppression or privilege” (Logie et al., 2011). This term was first defined by Kimberle Crenshaw (1989, 1991) to understand the experience of oppression due to
intersecting categories of identity. First, it stresses that an individual carries multiple cultural and social role identities including age, gender, race, sexual orientation, ethnicity, race, class, cultural background, religious or spiritual affiliation, geography, family role, employment status, medical health/illness, etc. (Collins, 2000). Second, these multiple identities converge on a particular – metaphorical – intersection at a particular moment in time and space and determines someone’s experience and social location. “Social location” is a “group or individual’s place in society at a given time, based on their intersecting
demographics” (Williams, et al., 2016). Third, certain of these categories carry privileged or disadvantaged positions in a society. The privilege of one category may be subordinate to the
disadvantage conferred by another, depending on time and setting. Because we give meaning to ourselves and others through this changing character of identity, we also experience events differently. So, lastly, and most importantly, as Hankivsky and Christoffersen (2008) state:
It [intersectionality] seeks to disrupt linear thinking that prioritizes any one category of social identity. Instead, it strives to understand what is created and experienced at the intersection of two or more axes of oppression (e.g. race/ethnicity, class, and gender) on the basis that it is precisely at the intersection that a completely new status, that is more than simply the sum of its individual parts, is formed.
The intersection of multiple socially constructed identities form a new identity and experience. Experiences of oppression at micro-level replicate and reflect systems of privilege and oppression (for example sexism, racism, and other socially constructed factors of identity) on macro social-structural levels. As Crenshaw (1989) explains, a black woman does not simply add the burden of black experience to female experience. The meaning of being black and being a woman is different because they comingle with elements of gender, nationality, sexual orientation, and so on, making it a more unique experience. Being a black woman from South Africa is therefore quite different than being a black woman from Holland. During my analysis, I studied if and how identity categories intersected in respondents’ experiences of HIV (non)disclosure to define the changing character of the HIV-disclosure process.
2.2
Disclosure during the age of HIV
Since the introduction of ART in 1996, HIV is no longer seen as a death sentence but as a chronic, manageable disease (Moyer, 2015; Oberjé, 2015). The life expectancy of PLWHA is now, in principal, equal to those living without HIV, provided they are diagnosed and treated early (Oberjé, 2015).
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However, PLWHA still face many stressors. The shift from an acute into a chronic illness involves learning how to manage long-term social impacts in their personal experiences outside of the formal healthcare (Charmaz, 2000: 279). PLWHA have to cope with daily physical, psychological, social, and economic consequences of living with HIV (Ibid.; Swendeman et al; 2009). HIV seems to be different from other chronic illnesses due to sociocultural factors like homophobia and incorrect assumptions that it is contagious and contracted by immoral sexual behaviour (Swendeman et al., 2009; Stuttenheim, Bos, Schaalma, 2008). As a result, stigmatization of PLWHA is more likely. This is in contrast to, say, cancer, which is seen as something that “happens” and is noncontagious (Stuttenheim, Bos, Schaalma, 2008). PLWHA therefore have to cope: “with stigma, shame, discrimination, social rejection, and strategically managing disclosure” (Swendeman et al., 2009: 1329). Thus PLWHA have a double burden: dealing with a chronic illness and dealing with its social stigma.Since HIV is treatable, symptoms are imperceptible (Serovich, 2001; 2008). Furthermore, PLWHA in Holland are not obliged to reveal their HIV diagnosis to anyone (Verdulft, 2015). Therefore, if PLWHA are diagnosed and treated early, disclosure becomes a matter of choice. Deciding when, to whom, and how to disclose can be a major dilemma (Serovich, 2001; Swendeman, 2009 Petrak et al., 2001). In fact, according to Sowell et al. (1997), the greatest concern when diagnosed HIV-positive is that of disclosure. PLWHA may want to keep their HIV-positive status a secret from fear of stigmatization (Stutterheim, Bos, Schaalma, 2008), shame (Stutterheim et al. 2011b; Serovich & Mosack, 2003), or rejection from close ties and subsequent detrimental psychological well-being (Stutterheim et al., 2009; HVN, 2015; Zea et al., 2003). In contrast, disclosing one’s HIV-positive status can result in obtaining “emotional, physical and social resources” (Serovich, 2001). For example, disclosure can lead to more social support, thus reducing perceived stigma, depression, or anxiety (Bos, Schaalma & Pryor, 2008), and higher self-esteem and better psychological wellbeing (Ibid.; HVN, 2015; Stutterheim et al., 2011a). However, disclosure can also lead to stigmatizing reactions (Landau & York, 2004; Smith et al., 2008), resulting in subsequent selective or nondisclosure (Swendeman et al., 2009). Paradoxically, this means that “PLWHA must take the risks of being met with stigmatizing reactions in order to gain the support necessary to deal with stigmatizing reactions” (Stutterheim et al., 2011: 383). Clearly disclosure is a stressful, ongoing process.
By the end of 2014, there were an estimated 22,100 PLWHA in Holland, of which 19,382 (88%) were diagnosed, leaving about 2,700 undiagnosed (Sighem et al., 2015: 11). In total, 17,905 PLWHA were still under care, and 80% of those diagnosed had a suppressed viral load6 (Ibid.). Since 2008, there has been a decreasing trend: about 1,000 new HIV infections annually. In 2014, men who have sex with men (MSM) who identify as homosexual or bisexual were the biggest group (69%) of newly diagnosed HIV infections, followed by heterosexual contact (25%), of which almost 25% were 50 years or older
6 Suppressed viral load, or undetectable, means that after successful treatment, the HIV virus is no longer measurable in the blood after a few months. Resulting in the fact that the virus can no longer be transferred to others. See the large scale research of Rodger et al. (2016)
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(Ibid.: 10). There is a decreasing trend among MSM aged 25-44 (Ibid: 28). Considering that MSM and heterosexual men are the biggest groups with HIV and disclosure is the greatest concern when diagnosed HIV-positive, it is important that research on disclosure focusses on these HIV-positive groups.2.3
A narrative approach
How do PLWHA negotiate (non)disclosure and how and why do they make their decisions? On what basis? What is at stake? This interest stems from a more general anthropological interest to understand how people make decisions and how they give meaning to their lives through interaction with the world. Geertz, an American anthropologist and a leading figure in contemporary anthropology, has been very influential with the development of an interpretative theory to understand how culture leads people to give meaning to certain events. “Believing, with Max Weber, that man is an animal suspended in webs of significance he himself has spun,” Geertz takes “culture to be those webs, and the analysis of it to be therefore not an experimental science in search of law, but an interpretative one in search of meaning” (Geertz, 1973: 5).
He argues for a “semiotic” concept of culture which consists of “socially established structures of meaning” (Ibid.: 12). Consequently, in what webs are HIV disclosures spun? How are these webs
influenced by identity politics and intersectionality?
Squire explained the experience-centered and culturally-orientated approach of narrative theory in “Doing narrative research” (Andrews, Squire & Tamboukou, 2013). It focused on the constructive powers of narrative through time and space. This means narratives can change within social and cultural contexts and through interaction with the world. Personal stories are therefore “narratable ‘truths’” (Ibid.) As HIV disclosure is not just about disclosing one’s HIV-status, but about one’s life with HIV (Davis &
Manderson, 2014: 148), I see the disclosure process a story of causal sequences of events and experiences that unfold meanings (leading, in my case, to a disclosure decision) constructed by the narrator within specific contexts. So, narratives are the imaginative linking of experiences and events into a meaningful story in the eyes of the narrator. Narratives are stories people live in or are trying to construct (Gordon & Paci, 1997). This is exactly what “lived experiences” constitute: “They describe events along with their meaning for persons who live in and through them. They ‘emplot’ experience, revealing its underlying form” (Good, 1994: 121). Narratives are concerned with social interaction and are guided by cultural knowledge, “describing not only what someone does in this world, but also what the world does to that individual” (Engell, 2011). The stories are the object of study in narrative analysis. By analyzing respondents’ stories, I investigated the causal (intersecting) factors through which my respondents give meaning to (non)disclosure decisions. It enabled me to understand how disclosure processes are differentially constructed and therefore negotiated among Dutch HIV-positive men.
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2.4
Existing literature and theories on disclosure
I did extensive research of Dutch and international studies on disclosure to evaluate what is written about the disclosure process among men. A more detailed version of this survey and how I selected them is included in Appendix 1. Here I highlight the main points:
Concerning Dutch studies, I found (only) four studies about disclosure. None took a narrative approach. Only one had a processual perspective (De Vries et al., 2016). The other three (Stutterheim et al., 2011b; Stutterheim, Bos and Schaalma, 2008; HVN, 2015) sum up a list for and against disclosure, but afford no understanding of the process of disclosure itself. Furthermore, they do not differentiate between homo-, hetero- and other sexually orientated men, and they do not assess the consequences that decisions had on future disclosure decisions, suggesting they looked at disclosure as the endpoint.
Regarding international, many focused on reasons for and against disclosure by MSM or homosexual men, (Gorbach et al., 2004; Serovich, 2001; Serovich & Mosack, 2003; Stutterheim, Bos, Schaalma, 2008; Zea et al., 2005) but very few on heterosexual men (Persson, 2012). Reasons for and against disclosure were similar among all men, so it gives us little understanding if and how their negotiation differ. However, these studies suggest that disclosure is a reasoned process because reasons for and against are considered prior! While they do give some understanding of the process – balancing needs and expectations of oneself and others – they do not reveal a full understanding of how it occurs.
What existing studies all have in common is that they focus on disclosure as the “endpoint” of interest but overlook the outcome of disclosure – how disclosure is beneficial or detrimental for the next instance or the person’s wellbeing. Because they overlook the outcome, they also provide no theories regarding the effects of disclosure (i.e., mediating processes). Moreover, they also overlook how
disclosure is embedded in meaning-making, or larger life histories providing meaning that cannot be seen separate from such processes. Disclosures are not outcomes, but instead moments in larger narratives.
There are several theories used to explain HIV disclosure: disease progression theory, consequence theory, social cognitive theory, applied attribution theory, and communication privacy theory. (I shall explain these theories briefly below, but for more detailed explanations, as well as pros and cons, see Appendix 2).
The disease progression theory argues that individuals share their HIV-positive status when they become symptomatic because they can no longer keep it secret (Babcock, 1998; Kalichman, 1998). PLWHA are forced to explain their illness because they need to go to the hospital, experience
deterioration (Kalichman, 1998) or the threat of death, or need social support and to access services to manage their illness (Holt et al., 1998).
The consequence theory is a psychological and sociological perspective that contends that PLWHA are likely to disclose when they perceive more benefits than costs to disclosure (Serovich, 2001; Serovich, Lim & Mason, 2008). People weigh the reasons for (rewards) and against (costs) and decide how “to maximize their profits in their relationships and behaviors” (Serovich 2001: 337).
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The social cognitive theory is a psychological perspective on an interpersonal level introduced by Albert Bandura (1994; 2001). Proponents of this theory believe people are not influenced by others directly, but form expectations about the consequences of future responses based on the anticipated or real observations of the consequences of other people’s behavior.A few authors explain disclosure through the attribution theory, a social psychological perspective that assumes that a person understands, predicts, and controls their environment either through internal (i.e., personal) or external (i.e. environmental/situational) factors (Manusov & Spitzberg, 2008).
Lastly, the communication privacy management theory explains why people reveal or conceal personal information. It outlines six major principles in understanding the communication process, but, like all the theories, it does not take into account the consequences of a single disclosure for the next situation when a person considers (non)disclosure.
Although these theories give us useful and different means for understanding when, why, or how disclosure may happen, they all overlook the essential point of disclosure: that it is an ongoing process of decision- and meaning-making. None of these theories take a processual perspective. The narrative approach gave me the opportunity to meet this study’s objective: to gain an inside look of how HIV-positive Dutch men give meaning to disclosure.
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3
Methods
3.1
General Approach
To understand how Dutch men negotiate their HIV-disclosure process from a narrative approach, I (i) obtained their HIV disclosure narratives, (ii) analyzed how people create, order and construct meaning for a sequence of events, and (iii) investigated the causal (intersecting) factors which lead to HIV
(non)disclosure decisions.
The stories are the object of study and were obtained through semi-structured interviews and life-histories. “Life-history” is an interview method where multiple interviews are conducted with one
participant. Life-histories fit well in the narrative approach and “the ethnographic tradition, because of the emphasis on the meanings the participant/interviewee places on his or her own life story and events…” (O’Reilly, 2005: 128). As mentioned before, narratives are not “true” but “narratable truths” constructed by the narrator that unfold meanings from causal sequences of events and experiences. Life-histories, or life stories as Peacock and Holland (1993) call them, unfold these webs of meanings because:
The telling of life stories, whether to others or self alone, is treated as an important, shaping event social and psychological processes, yet the life stories themselves are considered to be developed in, and the outcomes of, the course of these and other life events (Ibid: 371).
The power of the life-history method is not only that it reveals which meaning the narrator gives an event, but also about the intersecting factors leading to a certain disclosure decision, which are interlinked with broader life-histories providing meaning. Life-history implies the totality of a person’s experience. Life-histories are personal narratives that should be viewed and interpreted as interactive texts because people give meaning to events by interaction with one’s self, one’s close environment, and society in general (Miles & Crush, 1993). Therefore I treated my respondents’ stories as creations of the narrative process of meaning-making.
The aim of life-histories is to get accurate descriptions of interviewees’ life trajectories (Bertaux and Kohli, 1984), staying as close as possible to the words of the interviewee to understand not only their life across time, but also how individual lives interact with the whole (Atkinson, 1998). Therefore, life-histories are especially useful to discover the intersecting factors that ‘interact’ with each other within processual meaning-making in my respondents HIV-disclosure process.
As you will see, the ethnographic descriptions in the Results section reveal that HIV disclosure is a process of changing meanings given to disclosure events by the intersection of certain factors in
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3.2
Detailed method
Participants
I recruited respondents via a number of channels. Daan from the HVN was very keen to help me and gave me contact details of different people in different organizations (e.g., the DC-Clinic, an internist at the OLVG hospital in Amsterdam East where there is an HIV-department, and the magazine Hello
Gorgeous).
I prepared an introductory letter, an informed consent form (see Appendix 3) and a structured document describing the relevance of the research for the OLVG hospital and some HIV-clinics7 that supported me and handed out the introductory letter and consent form to HIV-positive men they thought would be willing to participate. However, no respondents were recruited through them.
I sent Hello Gorgeous an email in June/July, but did not get any response. I later called the contact person who said he had read my email during the holidays and forgot to reply. He was very enthusiastic about the research and proposed to recruit respondents through their website. This resulted in ten respondents. I recruited four respondents through the HVN. Six other respondents were recruited through my own network: a friend’s roommate, my cousin, a fellow student, and a club member at the gym where I work: all knew HIV-positive men who agreed to participate. After each interview, I asked the participant if he knew other HIV-positive men. This, known as snowball sampling, sometimes resulted in more participants (Bryman, 2012: 201).
The respondents who came via the Hello Gorgeous website were prepared to be open. This might seem a weakness, but on the other hand, I can argue that these persons may already be further in the HIV-disclosure process and have more relevant experiences than a person who is, for example, newly
diagnosed and still in shock.
I interviewed twenty HIV-positive men, of which twelve identified as homosexual, four heterosexual, and four as neither or bisexual (the (n)either group). The age of the respondents ranged from 40 to 66 years (average, 49). Diagnosis occurred between 1988 and 2014 (average 2003). As will be clear, I chose respondents for this thesis on the basis of diverse identity characteristics. For example, one man from the (n)either group was diagnosed in 2013 and another from the same group was diagnosed in 1993. For an overview, see Table 1.
Number of persons Average age Generation
Homo 12 (60%) 47 year old 2006
Hetero 4 (20%) 50 years old 2003
(N)either 4 (20%) 51 years old 1997
Total 20 49 years old 2003
Table 1. Number, age and the time of diagnosis (generation) of the respondents in this study
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Most (thirteen) lived in Amsterdam, three in Rotterdam, three in Brabant, one in Limburg and one did not have a permanent residence (lives on a boat).Interviews and selection
I conducted a total of twenty-seven interviews with twenty Dutch men: with thirteen I conducted one semi-structured interview (one with a homosexual couple). With the other seven I conducted histories: two interviews with six, and three interviews with one. The reason I did not conduct life-histories with all of my respondents is because at the end of the first interview I examined if we had discussed their HIV-disclosure process from diagnosis till present. If the process stopped before the present, I asked if they wanted to do a second interview.
Having my respondents sketch their HIV disclosure experiences provoked new memorable events or other life-histories that they related to in their HIV-disclosure experience.
After I transcribed the first interviews, I had more questions to ask during the second interview. I describe herein seven narratives in detail and five in less detail (See Appendix 7). Why I especially chose these particular respondents is because, as stated before, I wanted to clarify that the lens of identity politics through which the HVN looks at the problem of HIV disclosure is rather arbitrary. I first described (three) respondents who seem to comply with the HVN’s concept, but actually show differences. The four other ethnographic narratives show other angles of how Dutch men give meaning to HIV disclosure.
Lastly, the other five respondents (at least one from each group: homo, hetero and (N)either) are selected to confirm, clarify and enforce my statement that I see a general process in all stories,
irrespective of their sexual orientation, age, residence, ethnicity, generation, and so on.
With more time, I would have done more life-histories, but I believe I obtained enough rich data.
Interview approach
All interviews were semi-structured to explore phases in peoples’ lives and identify patterns. After analyzing the first interview, I followed up the stories in the next interview (if it occurred) to get an even clearer understanding of the disclosure process.
Following my interpretative epistemology and constructivist ontology, I do not believe there is one “truth,” because PLWHA socially construct their social reality. I wanted to know their meaning of events important to them and investigate if interviewees shared patterns and pay attention to changes in thinking and prominent things. As O’Reilly states:
In the interpretive tradition, it is those subjectivities, those subtle changes of mind, ambiguities of feelings, those ambivalences, confusions and strongly held beliefs which are most interesting to the researcher. An interpretative sociologist hopes to capture and to interpret these from the interviewee’s perspective. (2005:114).
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To allow the conversation to take an organic flow and reduce formality, I did not focus too much on the typical question-answer format. Nevertheless, I designed a few questions (see Appendix 4) to guide my interview. The interview included four components: (i) personal details, (ii) experiences before HIV diagnosis, (iii) experiences during and shortly after HIV diagnosis, and (iv) experiences after the first consideration of (non)disclosure. This guided my respondents from one experience to another for a full understanding of factors influencing the HIV-disclosure process from diagnosis (and influencing factors before) till “now.” However, I left space for unstructured considerations. “This is because anethnographer is usually attempting to learn about people from their own perspective, to get an insider’s view, and this cannot be done by imposing one’s own line of questioning on people” (O’Reilly, 2005: 117).
The second interview was always based on the previous interview and was different than the first interview. On occasion, I cautiously probed my interviewee for information or brought the interviewee back to the topic under discussion if he wandered too far from it, but I did this gently and slowly “with an awareness that new yet relevant topics may emerge from allowing the interviewee to wander a bit” (Ibid.:118). My intention was to leave space, encourage reflexivity, and to delve into my interviewee’s thoughts, contradictory opinions, doubts, fears, hopes, and so on. I asked them to describe important memorable moments but also moments that were less relevant.
I asked each respondent to draw their experience of HIV disclosure. This proved very helpful in acknowledging that HIV disclosure is experienced as a process (this will become clear especially in Chapter 7).
Most interviews took 1.5-2 hours. This is quite long, but when talking about such a personal subject, conversations tend to be deep. I usually invited respondents to my home; otherwise we met at their house. This was because I sought a private place, and not a library or café where other people might overhear the conversation. My respondents acknowledged this was a nice idea.
3.3
Analysis methods
To investigate how I analyzed the process of disclosure, I first have to explain my basic assumptions about obtaining knowledge. I will clarify my assumptions by my epistemological and ontological stance which prescribe the methods I use.
According to Bryman (2012), epistemology “concerns questions of what is (or should be) regarded as acceptable knowledge in a discipline.” Can the social world be studied according to the same principles as the natural sciences? It concerns a set of assumptions about how we can perceive what “exists.” From an epistemological stance, my research is based on aspects of interpretivism. To understand and define the lived experiences of PLWHA and identify the problems and needs in their social life through interaction, interpretation is necessary. Instead of explaining human behavior, this research will concentrate on understanding it from a hermeneutic and phenomenological perspective. This perspective is based on the idea that human beings construct meaning to their social reality through their
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own interpretation “on the basis of the meaning that they attribute to their acts and to the acts of others,” which determines their social behavior. It was my job “to interpret their actions and their social world from their point of view” (Ibid.).In contrast, ontology is concerned with “the question of whether social entities can and should be considered objective entities that have a reality external to social actors, or whether they can and should be considered social constructions built up from the perceptions and actions of social actors (Ibid.).” From an ontological stance, my research requires a deeper understanding of the social behavior of people. Since it is my intention to interpret and understand the meanings of how social interaction inform the way PLWHA act, I followed the constructivist approach. This ontological stance defines social concepts like HIV, gossip, agency, as continually changing, and that these concepts, the social reality, are accomplished by social actors (Ibid.). It underlines the notion that the people’s social reality is self-constructed.
Therefore qualitative research is needed, which also agrees with the contention that issues faced by PLWHA are best studied by qualitative methods (Parker & Carballo, 1990).
Considering my epistemological and ontological stances, I believe people construct their own meaning to their social reality through interaction with the world, which determines their decisions. To understand the process of disclosure, I need to understand how my respondents themselves give meaning to the sequence of HIV disclosure events.
disclosure narratives explained changes of meanings attributed to sequences of HIV-disclosure events. Paying specific attention to the concepts of identity politics and intersectionality using
Atlas.ti enabled me to code which factors intersected at a particular (non)disclosure event and how they
gave subsequent meaning to the next HIV (non)disclosure experience. I first looked at the moment of diagnosis: How did my respondents experience this? What was the first thing they did after their diagnosis? Telling others or not? Did they have a stigmatized idea about HIV? Were they surprised? I focused on which factors were important and the respondent gave meaning to. This was done inductively, so I did not look at pre-defined factors like age, relationship status, and so on. Instead, I identified factors that were at stake and experiences my respondents themselves brought forward. The reason for this is I believe using standard factors may lead to examining the “wrong intersection,” thus missing critical information necessary to fully understand the disclosure. Instead of using age as an intersecting factor, for example, I used the moment of diagnosis, which I called “generation.” This turned out to be an important determinant because the respondent himself mentioned it as a factor when he explained a (non)disclosure event.
To analyze my data inductively and from a processual perspective (Figure 1), I first looked at the reasons (for instance: ashamed) why a person made the decision of (non)disclosure, and then identified the factors through which he gave meaning to this reason. Then I identified when a feeling or reason changed (was enforced or reduced), and identified which factors cause this.
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Figure 1. Data analysis flow chart – inductive processI attempted to map the disclosure process for every participant, which was quite a task because many events and experiences were discussed and many factors were interrelated (See for examples Appendix 5). I used these mappings to get a better view of each process. By juxtaposing individual disclosure process maps with each other and comparing them with the most frequent themes in Atlas.ti, I was able to determine a general process and look for the most important factors within each.
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3.4
Ethical considerations
Considering that HIV is a personal topic tied to stigmatization and my respondents told me stories in good faith, I wanted to guarantee anonymity and confidentiality.
First, as mentioned, the interviews took place in a home, ensuring privacy and allowing the respondent to talk freely. Second, I protected their identity by using fictitious names in my research and jottings. Never did I put a respondent’s real name on my computer. Third, in accordance with the AAA Code of Ethics (2012), I provided my respondents full disclosure about my research. I explained the purpose and what would be done with the data. I emphasized that anonymity would be assured and personal data would never be provided to third parties without consent. I assured him he could stop the interview or refuse to answer whenever he wanted. I asked all my respondents for permission to record the interview and explained this would be stored on a password-encoded USB-stick only I could access.
All the above was listed on the informed consent form my respondents signed before participation (see Appendix 3). This document also included contact information for me or my supervisor in case questions arose regarding this research. They were given a copy signed by them and me.
Data was treated with care and discretion at all times.
Transcribing, analyzing, and describing the narratives took a long time because I (i) wanted to write a complete and truthful story and (ii) had to consider which details would guarantee anonymity. I tried to keep the story as pure as possible because I think it is important to show everything involved in the HIV-disclosure process so it correctly reflects reality, but I felt the duty and responsibility to ensure my respondents well-being and the trust they gave me. I am very happy with the end result and believe the ethnographic stories in this thesis represent reality while assuring anonymity and confidentiality.
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4
Results: Between the mainstream and the medical
Before I started conducting interviews, I wondered how much Dutch men would be willing to tell me, a stranger, their life-history. I believe the above-mentioned actions gave the respondents a safe feeling to talk freely about their thoughts, feelings, struggles and so on as I acquired many vivid life-histories.
During fieldwork I spoke with many people with different HIV backgrounds: friends, family, people at work (I have been working at a gym for almost two years, and many members know me and are interested in my research), people I meet through my djembe classes, doctors, etc. As I gained more and more knowledge about HIV through literature research, interviews, and dialogues with different
organizations (the HVN, DC-Clinic) and HIV specialists, the ignorance of most people without HIV or any medical background became apparent. It seems that most people who do not have actual HIV-related experiences have an outdated image of HIV.
My half-sister, for example, 25 years old, did not know the difference between HIV and AIDS, and thought HIV was still a very contagious, deadly disease. When I asked her what she felt and knew
about HIV, she replied:
Nothing really … I have never known anybody with HIV. I really thought HIV-positive people could never live a normal life anymore because they get ill and die. I knew there is some treatment, but I thought this only postpones the eventual outcome and that they [PLWHA] can never again have unprotected sex.
She asked me if a person could get it through saliva, which is a classic misunderstanding about HIV transmission. And she is certainly not alone in her attitude. This outdated image of mainstream society is a major reason why many of my respondents hesitated to be open about their HIV-status. However, I realized, as did many of my respondents, that these outmoded misconceptions and
prejudgments are understandable. What did I know about this subject before I started my research? What do I know, for example, about diabetes or colon cancer? Not much! However, it feels wrong and
unnecessary that PLWHA not only have to deal with the burden of a chronic illness but also with the social stigma that comes with it. This double burden does not make HIV disclosure any easier.
Talking about HIV with different people (different ways of transmission, that it can be undetectable and noncontagious, that HIV is now “just” a chronic illness thanks to HIV medication) evoked all kinds of questions such as: “What is the difference between HIV and AIDS?” “If you have AIDS, you die anyway right?” “Are you serious that medication allows people to get better even from AIDS and work again and have children?” People were amazed by – for them – new developments, especially that PLWHA cannot transmit HIV in any way (even through unprotected sex!) when they have an undetectable viral load and adhere to their medicine. and therefore, they can bear children without HIV. Most people I talked to expressed regret for their ignorance, especially since I explained that one of the biggest hindrances for PLWHA to disclose is this misunderstanding.
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One of my family members, an educated heterosexual man in his sixties, mentioned he had a gay friend when he was younger who died of AIDS around 1986. At the funeral, nobody talked about this “scary, deadly disease.” He did not speak about it at home. He remembers Freddy Mercury died from AIDS in 1991 and vividly describes stories on television and in newspapers predicting a large-scale world-wide epidemic. He was not scared of being infected himself: that was something that only happened to homosexuals and drug users. Now, also through the news, he knows that anyone can get it, mainly through unsafe sex, but, for him, “HIV is AIDS. I mean, I know HIV is a pre-stage of AIDS, but it’s the same for me: a person who is getting more and more ill.” Explaining the difference between HIV and AIDS, and that the HIV-virus is undetectable in the blood of PLWHA who adhere to their medicine, resulted in raised eyebrows, silence, and “… Really?”When I told the same to a club member (gay, 37 years old) at the gym where I work, he said he knew all that but always followed “be safe.” He said,
…when I’ve a one-night-stand I don’t know that person well. I mean you don’t know if you can trust that person. You just want to be safe. But if a person told me he has HIV … I don’t know what I would do … I know this sounds hypocritical, because I’ll do it [have sex], safe though, when I don’t know, and hesitate when I do know.… It depends if I know that person.
This shows that even though he is well-aware of HIV, he still fears getting infected through sex with a man he does not know well. It shows that HIV (non)disclosure is also about trust, the kind of relationship you have, and the relevance of it in a specific situation.
But how do HIV-positive men experience this?
What will become clear in the following chapters is that the contradiction between what is known in mainstream society and what is known in medical realm makes HIV disclosure a dilemma. By
disclosing their serostatus, my respondents fear stigmatizing reactions and/or having to explain
themselves. The stories related below are “narratable truths” as expounded upon by Andrews, Squire and Tamboukou (2013). The next three chapters aim to show how my homosexual respondents negotiated the process of HIV disclosure: how decisions of (non)disclosure were made, and the consequences their decisions had for future disclosure decisions and their well-being. It will show what determines whether men disclose or conceal their HIV status. In other words, how do they give meaning to their experience of (non)disclosure?
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5
Results: The influence of the gay scene
Sam
I met Sam, a 55-year-old homosexual, through the HVN. Since 2004, Sam works as an HIV-consultant and has heard many stories from PLWHA. He spoke confidently of professional experiences, but also bared his personal insecurities in being HIV-positive. We had two inspirational interviews. Sam was very honest and eloquent. I asked Sam to draw his disclosure process (Figure 2), and he referred to the poem
Ithaka8 to explain “…the process of disclosure is a process of many other things.” For him, disclosure meant going from “a lonely, introverted, insecure HIV-positive person ” to someone who is “open, can share personal emotions, experiences freedom, and where everything is possible.”
Figure 2. Drawing HIV-disclosure process, Sam, 20-07-2016
At first, Sam did not want to disclose, so he was quiet about it. From today’s perspective, he notes that “disclosure is a process of many things. For me it also means nothing is impossible if you want to achieve something.” For Sam, the disclosure process was a journey of: “overcoming stigma and self-stigma, coming to terms with yourself, and, through interaction with others, … realize that others are not that negative. Provided you also lay a foundation for yourself.” Sam continued, “If you can handle some negative reactions, you will experience support from others. We bring stigma upon ourselves. You can only liberate stigma with a stigma-free life.”
Self-stigma always interested him: “Not only related to HIV, but any self-image that determines how you think the world sees you.” I wondered: of course everyone has an image of themselves, but this image is also created by the world around you. I realized Sam’s aim for a stigma-free life was his journey of which he did not know of in the beginning. He did not know what to gain from sharing his HIV status, but through disclosure, he learned the only one obstructing his journey was himself: “If you take all your fears, anxieties, preconceptions on your journey, you don’t achieve anything. Those ‘demons’ are mostly
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imagined because of uncertainty what to expect.” This is the theme of the poem: the journey, not the goal. For Sam: “Learning about life is a bit from books, but mostly through experience.”As an HIV-consultant, Sam knew first-hand how people coped with HIV, how it is contracted, ARTs, etc. He had worked as an consultant for a year when, in 2005, he learned he was HIV-positive. Before his diagnosis he knew he ran a risk, but refused to test until he had more and more symptoms that were strongly related to acute HIV. This seemed quite a paradox to me: an HIV-consultant denying his own risk? I thought about this, and it became clear that Sam, in his quest for a stigma-free life, was not “stigma-free” at all at first. There were visits to the doctor, but –Sam admits – he knew how to deceive his General Practitioner (GP). They discussed potential causes for his complaints, except HIV. He buried his head in the sand.” Being “HIV-positive” meant admitting his mistakes – unsafe sex – public; “as a professional, that is failure.” He was in a phase of denial or delayed shock.
When he got sicker, his GP referred him to an internist who said, “There are many tests, but let’s start with HIV since you’re homosexual, had unsafe sex, and have these symptoms.” It was the push he needed. The diagnosis was inevitable: HIV. He was not surprised, he said he felt “very ashamed,” blamed himself and felt “loss of face.” “I constantly warn people about unsafe sex, and then I did it.” He could not identify with other PLWHA. “Maybe I was arrogant and felt I could fix it myself.” He knew HIV was not life-threatening anymore. The stigma was the problem: how he contracted HIV interfered with his role as HIV-consultant.
Sam lost weight but kept on working. Just when he got the diagnosis, an internist colleague asked if everything was okay. “You look ill,” and – jokingly – “when was your last HIV test?” Sam told me he thought, “someone looking after me that well should be my internist ” so Sam took him into confidence, which “started the big process of HIV disclosure: whom shall I tell?” For the first two years, he only told his GP, internist, and partner. In the meantime, he moved to Amsterdam and, besides working as an HIV-consultant, started volunteering at safe-sex parties at a club. He met many HIV-positive men who became friends, and to whom he disclosed his serostatus. They did not react weirdly and Sam realized “I was the one who put an enormous blame on it [HIV], not others.” The individuals he confided it just ignored it. “Apparently it was my problem.” He struggled with his nondisclosure at work: “…everybody opened their heart and soul, but … I didn’t speak about my HIV.” He knew he was not obligated to share his HIV-status with his clients, “but, I felt like a hypocrite.” Talking to a psychiatrist gave him strength to be more open to his colleagues and, when relevant, to his patients. However, he did not yet tell family or close friends.
Only his sister, a nurse, knew. She was suspicious, and confronted him point-blank once when he was ill: “Are you positive?” He told her in person. She said, “You should have known” They had a little discussion, Sam said, “because it’s not just the HIV, but also the behavior [unsafe sex] associated with it, taking risks living a totally different life than her norms…” For Sam, sharing his HIV-status meant he allowed other people into his very private world. “By revealing your diagnosis … which can only result from unprotected sex or drugs, you’re revealing something without the associated nuances.” Without the
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nuances referred to Sam’s sister’s allegation that he should have known the risk of unsafe sex. When Sam
contracted HIV, he was unhappy. His relationship with “the man of his life” had ended. (He had a new partner when he was diagnosed.) He was searching for new balance in his life, and crossed borders into a wild, excessive life. She could not understand the risks he took, but he explained that her norms were not his norms.
Sam said that, then, he was very sensitive of what other people would think of him and that was why he wanted to control who he told. In consultation with his sister, he decided he would not tell their mom, who was still mourning the death of his father: “[She was] a worrier. She wouldn’t be able to put it in perspective.” A good friend of Sam’s had died from AIDS in the eighties. His mom “had an outdated image of HIV and I didn’t want to worry her. But now that she is gone, I regret it … because if you love someone, you need to share. But I wanted to protect her.”
Five years after his diagnosis, Sam’s disclosure process “gained momentum” because the HVN heard about him – an HIV-consultant with HIV – and asked him to be on the Board. He realized he had to be open about his serostatus if he did not want his family finding out from a quote or interview. He knew his colleagues, many clients, and the HVN knew he was HIV-positive, but did not know who else knew. “Not having control is a very uncomfortable feeling. If you share with two people, you’ve the illusion of control, but when you tell ten, you no longer have control … you become insecure.”
He realized he did not want to have that feeling, so he decided everybody should know. In 2011, Sam had an interview about his HIV struggles in the magazine Hello Gorgeous.9 He decided to send it to his six siblings. Why? He said when he came out (as a homosexual) he visited all his siblings one by one. It was an emotional rollercoaster. He did not want his HIV disclosure to be the same because it “made it bigger than it is.” Luckily, they all reacted positively.
As he told me, looking back to it now, he felt the process of HIV disclosure was enriching. “It’s about self-forgiveness; realizing that shame and self-blame are inhibiting emotions that don’t contribute anything.” He said he came to terms with or “cleansed” himself meaning he forgave himself for the behavior through which he contracted HIV. “If that part is okay, then the rest follows. That is my process.”
Sam forgave himself by asking, “Why did I contract HIV? This is how I progressed.” He had been desolate losing the man of his life and veered to a wild, excessive life. He sees this in his clients’ stories too. “After a traumatizing event, people must reset, and they end up in a period in which you don’t do the most rational things.” But, “you learn from them.” Once Sam forgave himself and accepted that HIV was forever, he realized he must be open to his clients. With more self-forgiveness, he also felt the urge to tell close friends.
Sam admits he is not the kind of person who asks friends for help. He would rather solves a problem by himself. When he told his closest friends in 2007, their reaction was positive, but they
