Description of participants
Participants in the two studies were comparable on key sociodemographic and HIV history characteristics, and the two samples included similar patterns of variability with respect to past and present ART use and adherence patterns, although as noted above, more detailed sociodemographic and background data were available on participants in Study 2. In both studies, participants had lived with HIV for 20 years, on average. Participants in Study 1 ranged between the ages of 50 and 69 years. Most (56%) were men. The majority were African American/Black (79%; 15/18) and the remainder were Hispanic/Latinx. All were from low SES backgrounds and received public health insurance. They had been living with HIV from between 3 and 33 years, with an average of 21 years living with HIV. All had taken ART in the past, including for substantial periods of time. At the time of the present study, 61% reported taking ART with high levels of adherence in the past month (see Table 1). Those in Study 2 were 49 years old, on average, and the majority were men (78%) and African American/Black (78%). A third of the men (34.4%) in the study identified as gay, bisexual, or queer. Most participants (83%) had a high school diploma/GED or higher. Indices of extreme poverty were common: approximately half (49%) ran out of funds for necessities monthly or more in the past year and 85% reported food insecurity. Approximately half (49%) were stably housed. Participants had lived with HIV for 19 years, on average (range 3–33 years). All had taken ART in the past, including for substantial periods. At the time of the present study, 60% reported taking ART with high levels of adherence in the past month. Other background and health characteristics including substance use patterns are presented in Table 2.
Overview of results
Overall, we found that the challenges inherent in managing HIV over decades in the context of chronic poverty cannot be overstated. On the one hand, results highlighted that participants understood the importance of taking ART consistently as their best chance for a long and healthy life. Yet, their years living with HIV were largely characterized by the oscillation of periods of precarity and social isolation, during which adverse social and structural conditions were internalized as personal failings, followed by times of hard-won resilience and re-building. Over time, these repeated cycles of social and economic hardship followed by resilience served to shape participants’ sense of self, optimism for the future, and motivation to engage in HIV care and take ART. Specifically, participants in the present study generally described their long histories of living with HIV as marked by substantial and recurring periods of emotional and material instability, including severe depression and anxiety, cyclical or persistent substance use problems, social isolation, and chronic poverty. For most participants, the perceived ability or inability to successfully manage HIV infection and ART regimens also often shaped their sense of self-worth. Indeed, participants noted that their willingness or ability to take ART and/or to engage in HIV care was highly dependent on the degree to which they valued their own physical and emotional wellbeing, which in turn was frequently calculated in terms of how they experienced themselves as valued or not valued by others within the context of an often rigid social hierarchy. Moreover, participants noted that even in times during which they were able to feel motivated enough to successfully manage their HIV infection, they nevertheless reported that their efforts were continually thwarted by numerous and often seemingly insurmountable structural obstacles, including housing instability, financial hardships, and/or incarceration, parole, or probation. Indeed, at various points during interviews, stopping ART or non-adherence to ART was mentioned as occurring most frequently during times of high emotional stress, depression, and heavy substance use. At others, decisions not to take ART were closely associated with an ambivalent or even traumatic relationship with both their HIV medications and the burden of HIV-related stigma, and frequently involved participants taking deliberate or semi-deliberate breaks from their ART regimens as a means of managing these emotional correlates of living with HIV.
The theme of symbolic violence, embedded in a multi-layered intersectional framework, was readily apparent throughout these interviews, as participants routinely expressed experiencing the convergence of multiple intersecting social stigmas, which in many instances resulted in periods of relative diminution of self-worth and self-isolation alternating with a resilience in better navigating HIV and ART. Among the most common stigmas referenced by participants were those related to race/ethnicity, social class, gender, sexual orientation and sexuality, HIV status, substance use, and involvement with the criminal justice system. Notably, the majority of participants experienced these and other limits imposed upon them as ordinary and inevitable, and indeed often cited themselves as the root cause of their own suffering, even while referencing the social and structural contexts that promoted or impeded their abilities to manage HIV effectively. In fact, many participants understood the circumstances within which they believed they initially contracted HIV as a direct result of what they viewed as their own personal shortcomings, an understanding that appeared to be reaffirmed and indeed exacerbated as participants struggled to attend medical appointments, adhere to HIV medications, and reduce substance use. For most participants, the shame and stigma attached to their HIV status began with their initial diagnosis and continued throughout their time living with HIV. But, study findings complicated or even contradicted the predominant narrative of the causes of contracting HIV and struggling with HIV management over the long term as located at the individual level of influence. Instead, results indicated that powerful social and structural factors shaped the individual decisions and behaviors of PLWH, and these mainly adverse social/structural factors had significant negative cumulative effects on PLWH over time. Indeed, although participants might at times recognize social and structural influences to HIV care engagement and ART adherence as outside of themselves, they more commonly experienced poor ART adherence as a personal failure. Participants commonly did achieve high levels of adherence for long periods of time (including, for most, at the time they were interviewed for the present study), and the extent to which heroic effort and extreme resilience were required to adhere to ART for long stretches in the context of symbolic violence and chronic poverty cannot be overstated. However, participants’ periods of poor HIV management were generally more salient to them than times of optimal engagement along the HIV care continuum. Thus, in the sections that follow we focus primarily on the factors that combined to impede ART uptake and sustained adherence, in order to give voice to participants’ experiences and perspectives, and point the way to policy and health care setting changes at social and structural levels to better support PLWH. Yet clearly participants’ substantial strengths and resilience are embedded within these findings.
Overall, study findings were grouped into one main theme and five interrelated sub-themes. The primary theme involved symbolic violence, which produced a potent negative and counter-productive intra-psychic, emotional, and inter-personal context that served as a primary cause of nonadherence to ART. The sub-themes explored in detail factors that created this counter-productive context and therefore influenced the phenomenon of managing HIV health and ART over the long-term, including: 1) the compounded effects of material, social, and emotional challenges, including stigma, along with life events that disrupted ART adherence, which combined over time to “grind down” participants and eventually diminish their sense of self-worth or even, at times, their will to live, 2) extreme social isolation based in part on a hyper-awareness of how they are viewed and consequently devalued and dehumanized by society, all of which dramatically affected the emotional context within which ART adherence took place, 3) stigmatizing aspects of patient-provider interactions, both experienced and anticipated, that promoted or impeded ART adherence, 4) a perceived lack of autonomy in making personal decisions both directly and indirectly related to HIV care, and 5) over time, the internalized experience of one’s inability to maintain ART adherence as an unmitigated personal failure, despite evidence to the contrary.
Throughout, statements from participants made clear that they saw themselves as occupying a marginal, if not perilous, position within society, which in turn was integral to ART nonadherence. The public health and HIV care systems were experienced by participants as both making good-faith attempts to address HIV-related stigma and to support participants’ health goals, while at the same time also reflecting, or even perpetuating, symbolic violence related to these and other stigmas. Further, as noted above, although external conditions were not generally conducive to effective HIV management, strong and consistent evidence of resilience and successful HIV management are embedded in the findings on difficulties with HIV management presented below. We found during data analyses that themes from the two studies were highly consistent with each other and we therefore present an integrated set of results. Names presented in the sections that follow are pseudonyms and some identifying details have been changed to protect participants’ confidentiality. Subthemes, including the underlying theme of resilience incorporated into the other five subthemes, are summarized in Fig. 1. A summary of the predominant pathway from symbolic violence to HIV-related decisions and actions derived from the analysis is presented in Fig. 2.
Being ground down by compounding material, social, and emotional challenges
Participants stressed that their relationships to HIV infection and their feelings about ART adherence were dynamic and heavily influenced by a range of individual-, social-, and structural-level factors. All participants were located at the intersection of multiple, marginalized and stigmatized social positions, including those related to race/ethnicity, gender, social class, sexual orientation and sexuality, substance use (past or current), and HIV status, and most had personal histories marked by problematic substance use, periods of incarceration, street homelessness or unstable housing such as single room occupancy residences, chronic unemployment, domestic violence, chronic poverty, and food insecurity. Many participants described experiencing these collective hardships as a kind of “grinding down” that frequently resulted in feeling that one’s life or health simply was not worth the effort of the emotional, social, and practical challenges of adhering to ART. In fact, taking ART served as a near-constant reminder that one was living with HIV and therefore also the potential target of an array of stigmatizing behaviors on the part of strangers and loved ones alike. As a result, participants commonly expressed feeling increasingly dehumanized and devalued as their years living with HIV accumulated. Further, they noted that the harms caused to them by others, such as incarceration, sexual assault, explicit insults, or denial of basic needs and services, were commonly minimized or dismissed entirely by those who perpetrated the harm, as well as by witnesses and/or potential sources of comfort or support. Indeed, it is within this context that many participants experienced the evolution of their own sense of personal value and self-worth (or lack thereof), including with respect to their relationships to ART adherence, HIV, and indeed with overall health management. As Barry, a 54-year-old African American/Black man diagnosed with HIV at the age of 24 put it,
It’s nothing you can really say to their ignorance that’ll change their mind, but I don’t think I know anybody that’s not affected by [HIV]. Either they know somebody that has it - a family member that has it - or they know somebody that has it. I don’t see why people are cruel still with it.
Notably, Barry’s inclination to link HIV-related stigma and associated microaggressions with individually-directed ignorance or cruelty rather than with more systemic forms of social inequality is prevalent throughout interviews with participants. Interestingly, however, as the above indicates, Barry, like many participants, still expressed some degree of skepticism regarding whether individual factors are adequate in explaining the persistence and prevalence of HIV-related stigma.
Participants’ relationships to ART were also related in large measure to their initial reactions to receiving their HIV diagnoses and the difficulties they faced adapting to the new diagnosis, typically complicated by continuous and re-lived emotional trauma, and a number of internalized stigmas. Indeed, we found a cluster of experiences around acceptance of HIV, grief and loss, continuous trauma, and stigma surrounding HIV, which created serious barriers to sustaining consistent adherence to ART. Harold, a 52-year-old African American/Black man diagnosed with HIV while incarcerated 12 years ago, described that he continued to struggle with acceptance of his diagnosis, with ART adherence, with the loss of what his life might have been, and with a sense of purpose in life, and attributed these struggles directly to HIV-related stigmas:
Yeah, I struggled [with my diagnosis]. That was the hardest part about it - accepting that I was going to have to die. Even though you know you’re eventually going to die but to have something accelerate it like HIV could - it was hard for me. I mean, I was thinking of all the possibilities I was losing as in having kids, having a meaningful relationship and so forth. So, I lost my purpose to live. That was my reason for struggling with the whole thing [HIV care and ART adherence]. [...] But [even] now I’m stuck with this stigma of either I’m gay or I’m strung out on crack or something like that, and I get treated as such. And that’s like stuff that I’m still dealing with now with the stigma of [HIV].
Harold understood the role of discrimination in the difficulties he experienced accepting and adapting to his diagnosis, which, in turn, was necessary if he were to take HIV medication regularly. Yet, feeling disrespected and marginalized, along with experiencing a cascade of losses associated with his diagnosis, including a loss of a sense of purpose, nonetheless still remained significant obstacles to consistent ART adherence.
Similarly, Ulysses, a 47-year-old African American/Black man who had been living with HIV for 16 years, described being perceived as both HIV-positive and gay as “a struggle” so seemingly overwhelming that he at times intentionally sought refuge in a local psychiatric ward. Ulysses also discussed his financial and mental health struggles and how these factors influenced his HIV medication adherence:
Well, I just gave up. And money was hard, so people pay for (HIV) meds, and I needed money. Sometimes I needed the money not so much for recreational use, for drugs or nothing, sometimes I just needed money for food. Or some things I needed in the house, toiletries. So I just said, hey, [I miss a month of ART], I just sell a bottle, hey. Sometimes it’s because I just give up, I’m depressed. Sometimes I lay there and – the medicine’s right there and I just don’t get up and take it. Because if my depression gets down, I don’t even have to eat. I don’t even have to drink water. I could lay there in bed for three days and don’t even have to pee. I’ve been in the bed for three days and I didn’t even have to pee. I’m so depressed. Didn’t even drink any water. Just laying there.
What is notable here is that for Ulysses, his decision to sell his HIV medications was precipitated by the fact that he “gave up,” rather than vice versa. That is, for Ulysses choosing to sell his HIV medication for basic life necessities and to admit himself to a psychiatric ward for much-needed rest was presented as a lack of motivation to care for himself rather than the result of emotional, social, and structural factors such as the lack of high-quality, accessible, and affordable mental health care, and chronic poverty. Indeed, for many participants, the decision to sell or “divert” HIV medications was indicative of their experiences related to socio-economic indicators (e.g., the need to purchase food, pay bills, or visit loved ones) and their mental health and emotional state. These served as important factors impeding ART uptake and adherence.
Raul was a 56-year-old Latino man who was diagnosed with HIV at the age of 29 years, and for whom living in a single-room occupancy residence, which did not provide a kitchen or private bathroom, and which he described “a step above living in a shelter,” was the only realistically affordable option. What Raul experienced as the often insurmountable material and emotional pressures of prison, parole, and his living situation frequently resulted in what he referred to as a “fuck it attitude” expressed by many participants in his situation:
You know, in my situation, being positive for 37-plus years, homeless, you know, it's like the worst. You know, because as soon as something doesn't fit in, you think the worst. Yeah, giving up, fuck it. F-you's and you, and fuck all this. And you run to the street. And it's not a good thing.
Yet, this “fuck-it attitude” can be interpreted as form of resistance, resilience, and agency, in that it is a way that Raul has available to him to challenge a set of hegemonic structural inequalities.
Like most participants in the present study, Raul described social service and health care settings, as well as single-room occupancy residences (a setting where many participants resided), as dilapidated, overburdened, and over-institutionalized. These characteristics, in turn, were commonly interpreted as a near-constant reminder that participants were either not wanted or were devalued in the majority of spaces through which they traveled on a daily basis, and/or even that they were seen by larger societal forces as less-than-human. In fact, many participants were at times keenly aware of the relationship between dehumanizing physical spaces and what they frequently described as “self-isolation.” Nonetheless, Raul insisted upon establishing and maintaining his autonomy with healthcare providers despite these obstacles: “You know, they’re not going to break me. You know, they’re going to have to work with me.” Indeed, some participants even sought to actively preempt stigmatizing interactions; for example, by normalizing universal precautions taken by providers such as wearing medical gloves during health care encounters. Sandra, a 41-year-old Black woman who had been living with HIV for 14 years, described her strategies to manage being seen as a “pariah” as follows:
I always tell [the doctor], can you put on gloves, please? You know, because I’m still feeling that way. She’s like, girl, please.
As was the case with many other participants, Sandra’s repeated experiences of being feared and judged based on, among other things, her history of substance use and her HIV status, resulted not only in her pre-empting the experience of stigmatization (although universal precautions are intended to be de-stigmatizing since all providers in settings where they are required use them for all encounters where providers may come in contact with bodily fluids), but in taking ownership of it. Yet, as with many other participants, these experiences still led Sandra to avoid healthcare visits on many occasions. Further, at times she experienced substandard healthcare conditions, which she came to view as normal, even when her interactions with individual healthcare providers were positive. Indeed, the majority of participants experienced myriad inter-connected individual, social, and structural barriers to successful and sustained HIV management, each of which exacerbated the others, and which cumulatively lead to a lengthy process that many participants described as a grinding down, even to the point of interfering with their will to live. Put plainly, for almost all participants, HIV and other related forms of stigma were one critical aspect of a larger process that eventually led individuals to “give up” on themselves for periods of time, and which quite often served to reproduce social differences in ways that did not always involve overt forms of individual discrimination. And, those who gave up on themselves were in no position to take ART or engage in HIV care or other health-protective actions. On the other hand, participants commonly found a way out of this state of giving up on themselves, sometimes in conjunction with health care facilities and providers, and other times seemingly in spite of them, highlighting the challenging cycles and tensions inherent in living with HIV over decades.
Social Isolation and Self-Isolation
For most participants, one of the most common strategies for managing the effects of intersecting forms of stigmatization and marginalization based on race/ethnicity, gender, class, sexuality, substance use, and HIV status was to avoid social interactions altogether, thereby effectively excluding them from much of society. Notably, this strategy included self-isolation from friends, family, and loved ones as well as from health care and social service professionals and the larger society. Thus, in addition to feeling stigmatized in daily interactions with unfamiliar individuals, several participants reported similar stigmatizing experiences at home, including with family members who used disposable dinnerware, refused to share food, or sprayed down bathrooms or kitchens with disinfectant when they exited. Several participants noted that they saw themselves as an outsider within their families, and reported familial rejection and persistent anxiety regarding when or whether to disclose their HIV status to friends, family, and potential romantic or sexual partners over time as reasons for eventually choosing social isolation over increased interaction. Ernie was a 41-year-old African American/Black man who was diagnosed with HIV at the age of 30. Like many participants, the initial shock of an HIV diagnosis was almost immediately accompanied by rejection and judgment from family and friends, leaving him feeling “unwanted”:
That made them feel small, very small. They were inviting me over to come eat, and I wouldn't even go. Well, why don't you come? Really? Really you're going to ask me that question? Why didn't you come? Yeah, why didn't you come? Because I didn't feel like being stereotyped. I didn't feel like you running behind me every time I go to use the bathroom. I didn't want to deal with that. [Crying] I didn't want to deal with that at all, so I just stayed away from them. I still to this day stay away from them. My cousin is like, "Why don't you come over to the house?" Mm-mm, because my little cousins don't know I have it [HIV]. I don't want to be talking to the ones that do know I have it, and they overhear our conversation, and then I got to deal with that [disclosure] all over again. So I just stay away, and I expand my own family by meeting people and getting close – other people that's [HIV] positive, like me – in my family.
Thus, participants commonly withdrew from much-needed social support and social interaction to avoid the emotionally punishing experiences of enacted and anticipated stigma. Certainly, this self-isolation was a form of self-protection and coping, despite its deleterious effects. On the other hand, Ernie highlighted the critical role of “found family” or “family of choice,” including others living with HIV, when support from families-of-origin was lacking.
As is noted above, many participants frequently relied on substance use to cope with the myriad problems they faced in their everyday lives, which in turn often presented its own set of challenges with respect to social engagement. Glen, a 47-year old African American/Black man who had been living with HIV for 28 years, along with co-occurring, episodic substance use problems, summed up many participants’ responses to these conditions as follows:
I always embraced venturing into the unknown, but when I started getting high it was just like I'm scared, you know, I've been doing this so long, I was getting high so long. And I secluded myself so long that it was like I was scared to go out, I was scared to succeed, I was scared to try. It was just like I was a fucking hermit, yes, and it took a minute for me to come out of that, you know.
Likewise, Rodney, a 50-year-old African American/Black man who learned he was HIV-positive at the age of 35 and who frequently used alcohol as a coping mechanism when he was first diagnosed, described self-isolation as a defense strategy that often led to “shutting down,” which for him also included not taking HIV medication:
I would make them [doctor’s appointments] but then I would break them because there was just so much going on. And then I’d get to drinking because I’m frustrated and [when I am] drinking I would just be like, oh, well, fuck it, go on and reschedule [the doctor’s appointment]. And there were times when I did that and made like four different appointments and wouldn’t keep them, and then after a while I was just like, okay, fuck it. […] Like when I was just frustrated; when I just had so much of everything, problems, you know life, you know what I’m saying? Things that happen in life, you know what I’m saying? I’m the type of person, I will just pretty much shut down. When things get too hectic for me then I’ll just shut down and pretty much isolate myself. [...] That’s pretty much it, but like I said, the thing was, was when I would get annoyed, frustrated or overwhelmed with some of the stuff then it would be like I just kind of shut down and wouldn’t take [the HIV medication].
Yet, Rodney went on to highlight the cyclical nature of substance use problems and re-engagement in HIV care and ART, noting
Then after a while I was like, no, I need to go; I really need to go, you know what I’m
saying, so I’d call and then make an appointment. As of now - like I said I went about a
month ago - yes, I’m undetectable and all that and I’m cleared of STDs [sexually
transmitted diseases]. [...] I’m more relaxed; a little more relaxed now, undetectable but I
want to make sure I stay there, you know what I’m saying?
However, as the results provided above illustrate, despite the fact that the avoidance of social situations was most often experienced by participants as a form of self-isolation, the contributing structural factors driving self-isolation were for many individuals all but unavoidable. For instance, many participants had been placed into supportive housing (such as single room occupancy residences), wherein substandard and potentially volatile living situations necessitated non-involvement with other residents who were viewed by participants as sources of stress, in part because they pressured participants to engage in illicit substance use, or were seen as potential perpetrators of theft or even physical violence. As Glen, introduced above, noted,
I went to rehab in the middle of April, so I've been clean for about a month and a half two months. Yes, so it's kind of a struggle, you know what I mean? Trying to stay clean when you got so much temptation around you […] Because when I was home it was just like every time the doorbell rung I would open it [but] I knew it was drugs or (someone wanting) money. You know, so I was always putting myself in harm's way.
The effects of what participants described as self-isolation were often further exacerbated when they were faced with the risk that they might accidentally disclose their HIV status to others by taking their ART in view of others. As, Glen continued,
So I like taking my meds, it's just I forget sometimes. And then sometimes if I do remember like I said in the past, it was like (if somebody else) is around me and I don't want to take them, because you know, they already think you positive. But then when you pull out medication they know you're positive. But I found a way to get around that at some point (by hiding individual pills in his clothing and later taking them in private).
In fact, perhaps one of the clearest manifestations of symbolic violence among participants was evident not necessarily in the ways in which they experienced their everyday lives. Instead, symbolic violence was most evident when contrasted with participants’ occasional experiences in culturally and structurally salient public health interventions they described as designed specifically to recognize and address the numerous ways this population of PLWH experiences marginalization and dehumanization. Bernard, a 54-year-old African American/Black man who had been living with HIV for 23 years, described his positive experiences with one particular highly-resourced social service and research setting, located in an affluent mixed residential and commercial district in New York City. Bernard described this setting as being notable in that while there he felt he was viewed as a whole person, had his experiences and the structural causes of stress, stigma, and isolation validated, and that his personal health decisions were respected. Bernard related the following:
I've discovered that I'm really not a bad person at all. This is the overall, but I've discovered that I'm not a bad person, and I need to stop punishing myself. [...] (Before coming here) I didn't care. I didn't care.
Hendrick, introduced above, contrasted his positive experiences with this same service setting with those in other, far less welcoming environments:
You know, it's like you don't feel like a pariah (there), you don't feel like nobody's scared of you because you're HIV positive. It's like people talk to you like a real person, and that matters more than anything.
Jackson, a 61-year-old African American/Black man who was diagnosed with HIV at the age of 40, who also attended programs at this setting, similarly described some of the reasons he believed people living in situations similar to his own feel more motivated to engage with others and to begin to care for themselves when being treated with understanding and compassion:
People come down here because they're trying to escape where they're at, and they come down here and they feel more relaxed. (Staff) say, “How are you doing? You all right?” They say good morning. Good morning. You know, and usually they're not used to that. [...] We forget that we're human. We are. We are human beings.
Indeed, participants frequently noted that their visits to this service and research setting provided far more than an opportunity to speak with staff about their personal and medical issues. Many participants stressed that they planned their entire day around this singular visit, noting that being around a bustling, affluent area in lower Manhattan afforded them the opportunity to “get out of the house” and to escape neighborhoods they described as rife with violence, substance use, and extreme poverty.
Stigmatizing aspects of patient-provider interactions
In addition to feeling the effects of non-healthcare related social isolation, some participants brought to many clinical interactions not only expectations of substandard medical care, but also a diminished sense of personal autonomy and a learned deference to perceived medical authorities, who indeed made the ultimate decision regarding whether to prescribe ART and/or other medications. For Ernie, introduced above, moving away from the city to get away from violence related to gang activity unfortunately resulted in his being refused medical care in that new setting because of his active substance use, which in turn led him to stop taking HIV medications altogether:
Finding the right doctor without being judged, without being discriminated against [is challenging]. I was going through several different doctors to get HIV under control, and the first thing they thought – okay, he's positive, he's Black, he had to get it from sex, and I didn't get it through sex. [...] No, I'm not a streetwalker. No, I'm not a call girl or a prostitute – nothing like that. [...] I just stopped taking medications completely.
Indeed, participants typically had numerous positive experiences with healthcare providers, along with experiences of overt discrimination from providers, or they anticipated experiencing negative interactions with providers in the future. Thus, managing HIV-related and other forms of stigma in health care settings frequently led to an avoidance of visits to health care providers, driven in part by negative emotional experiences when anticipating or engaging in health care encounters. Hendrick, mentioned above, described the direct correlation between stigmatizing healthcare interactions and a reluctance to seek care at all:
Usually when you go to places like this [health care setting], people make you feel like, you know, hands off. They don't make you feel comfortable at all. It's like totally psychological, and sometimes, you know, you ain't in the mood for that shit.
Before visiting a new health care provider, participants often considered whether this new interaction would recall or even multiply and exacerbate already existing traumas, including regarding their initial HIV diagnosis and the circumstances within which they believed they were infected with HIV. Sandra, introduced above, described a long series of retraumatizing healthcare experiences:
They'd just rather you die. So the care was not accessible or – to me my experience was bigoted. [...] I had a little fight left in me, so I decided to go to [another clinic] [...] They just [communicated to me], you're not important. You just like go through the mills. Like I went in there, I had a high anxiety. [...] Because everybody wanted a piece of me, is how I felt. And [I was] just overwhelmed. I'm literally crying. I broke down in tears. Lady had to give me something to calm me down. Because it was just overwhelming having all these people in my face while I'm trying to talk about my [situation].
For these and most other participants, experiences with healthcare providers were inseparable from other social interactions, and participants carried with them their experiences of dehumanization. As a result, many participants’ statements revealed the ways in which internalized and anticipated stigma, whether directly experienced with each health care provider or not, sometimes resulted in expecting or even normalizing substandard medical care. Notably, many participants shared accounts of working individually with healthcare providers with whom they had overwhelmingly positive experiences, often described as “life-saving.” Nonetheless, even these participants frequently viewed the healthcare system as a whole as unwelcoming or adverse, and cited this as a reason to either actively seek welcoming, non-judgmental providers, or to avoid healthcare visits altogether.
Restricted autonomy
As noted above, despite reporting myriad positive experiences with individual healthcare providers, participants nonetheless recounted feelings of ambivalence and anxiety when discussing their past, present, and future relations with the healthcare system as a whole. Indeed, for nearly all participants these feelings were closely associated with similar emotional and social experiences in non-health care settings, which they viewed as often overlapping. In addition to facing a multitude of psychosocial and socio-economic hardships, participants were hyper-aware of being continuously subjected to a constellation of seemingly unrelated surveillance mechanisms such as prison, parole, probation, court-mandated substance use treatment, supportive housing, child protective services, and, in some cases, directly observed therapy (where PLWH are observed taking their medication daily by health care professionals). As a result, participants often expressed feeling their autonomy was restricted or denied with respect to personal decision making, and also noted that the harms caused to them by others were commonly minimized or dismissed entirely. As a result, participants frequently reported responding to these experiences by simultaneously expecting and recognizing a lower standard of care, but also by asserting their autonomy through an avoidance of healthcare visits or medication for periods of time. Sal, a 37-year-old African American/Black man who had been living with HIV for three years, drew a direct line between feeling disempowered and intentionally avoiding healthcare visits:
A year ago I didn't care about being treated (for HIV). I didn't care about taking medications. Really it was kind of because of the whole healthcare system and the frustrations I was going through as far as actually getting medicated and getting care – stuff like that. [...] They would use my medicine as a carrot. They would make me jump through hoops and do all sorts of types of things in order to get medicated, and I didn't feel that I wanted to go through that. I didn't feel that was a correct way of treating somebody with the virus. There was no compassion. We were grouped into almost a meat market of people, and everybody was just there to be treated. We were separated from other people [in an HIV clinic]. It was known that this was the [HIV] clinic, you know what I'm saying? So the whole embarrassment and stigmatism of going there to get medicated... I had decided to myself that I didn't want to go through that. [...] The whole thing was they were trying to get paid for the appointment. You know, they can bill by Medicaid [public insurance for low-income populations] for how many times I come down there for an appointment. So they were trying to get as many appointments out of me as possible, and every little thing was appointment, appointment, appointment – when I know there could've been a better or easier way.
As was noted above, for most participants equitable health care was rarely expected - an expectation that was also frequently borne out in patient-provider interactions. On the other hand, even if equitable care was not expected, participants expressed frustration in the face of substandard care conditions. Indeed, many participants understood the primary function of healthcare systems, from primary care providers, HIV and other specialists, pharmacies, and incentive-driven HIV research, not as providing the best quality, convenient, confidential, and patient-centered care possible to each patient, but rather as meeting “the bottom line.”
For others, interactions with various providers made it abundantly clear that participants were considered unable to make healthcare decisions for themselves. Wayne, a 52-year-old African American/Black man who was diagnosed with HIV at the age of 28, described being tested for illicit substances without his consent, and explained how this directly led to his decision to miss appointments with his HIV care provider:
And I turn around and got into there, and she’s talking about giving me drug tests, and I had no idea that she was giving me drug tests. [...] Cocaine, crack cocaine, blah, blah, blah. And each time I went to [see] her, she’s like, “Okay. You ain’t getting high. You don’t get high.” I was like, get high? Wait a minute. You mean – how you know that? How do you took a doggone drug test and ain’t tell me about it? I mean – even jobs, when they turn around and they tell you they’re going to drug test – they tell you they’re going to drug test you. [...] You just turn around and took it upon yourself to turn around and give me a drug test? You told me everything else but you ain’t tell me that? I was like, that’s fucked up. Okay. “What if I was dirty? Then what would’ve happened?” I told her. She said, “Then I would’ve handled you in a different way.” I’m like, “Handle me in a different way?” You ain’t supposed to show no partism to a person who smokes and a person who doesn’t smoke.” You’re supposed to give them all the same treatment regardless of what they do with the medication that you give or the information that they give you. I was like, “I don’t really like the way you handle this.” So I been dealing with that. [...] And then, when I left, when I left, I missed my appointment on purpose. My next appointment, I missed it on purpose.
Similarly, despite a robust body of research indicating that substance use does not necessarily preclude high levels of adherence to ART (51), Tyler explained how substance use cessation is in many cases a precondition put forth by providers for being prescribed HIV medications in the first place:
I’ve had other physicians that they’re very judgmental. You know, you’re doing drugs, you’re not going to take these meds, you’re going to sell them, so I’m not going to give you these medications. They figured this [ART] is just going to make you worse.
Yet, in contrast, Tyler’s health care provider in another setting brought a harm reduction approach to their discussions, which fostered his ability to manage HIV even when using illicit drugs, an approach consistent with autonomy support.
So over the course of, I guess years, I just became more adherent to taking the meds and I would slowly wean myself off of the other street drugs, you know.[…] [My doctor] was very progressive.[…] She was an excellent doctor, and very open and very understanding.[…] Not stigmatizing.[…] So, she was very, proactive–telling me, well, the same routine that you do your street drugs, I would like you to take these HIV meds. So, that kind of clicked in and that made me adherent. And, then, over the course of time, I just decided to reduce the harmful street drugs.
Yet, for many participants, it was more common for any sense of personal autonomy to be further undermined by an understanding that they were being deliberately taken advantage of by the healthcare system as a whole. Jackson, 61-year-old African American/Black man who had been HIV positive for 21 years, described the following:
But I'll tell you one thing. I'll get tired of taking this medication because right now I'm in crisis. [...] Because it's been a battle, man. You know, let me tell you something. They experiment on a lot of us, you know, and it's sad, man. You know, using medicine, to get approval. You know, and to get in with these pharmacies. You know, come on, man, you're messing with people's lives. And I'm going to see a lawyer and I believe lawyer will understand what I'm saying, you know? Messing with people's life. You're messing with my life. [...] I'm just a little fed up, that's all. You know, and you know, I keep it real with you. I [don’t] feel like going into any of these buildings [where health care is provided] because they're trying to kill me.
For Jackson, as for many participants, implicit and explicit stigmatization both within and outside of clinical interactions were commonly experienced not only demeaning and degrading but as life-threateningly hostile, and contributed to mistrust of the healthcare system, as well as causing emotional distress. Nonetheless, it is worth noting that it was within discussions of autonomy (or a perceived lack thereof) that the effects of symbolic violence were readily visible, as participants continually struggled to locate themselves positively within the healthcare system as a whole.
The Sense of Personal Failure if not on ART
Despite experiencing and recognizing all of the emotional, social, and material challenges enumerated above, participants who had achieved HIV viral suppression or who had successfully adhered to ART nonetheless often retroactively experienced past ART periods of non-adherence as the result of personal shortcomings. That is, for many participants, successfully attending HIV care appointments and adhering to ART in the present often served as a powerful reminder of what many perceived as personal failings in the past. Despite facing what were often seemingly insurmountable obstacles related to meeting their daily needs, participants nonetheless continuously expressed a desire to “do well” with respect to their HIV care and ART adherence. Indeed, for nearly all participants, and consistent with health care providers’ views, biomarkers such as high CD4-cell counts and low HIV viral load levels served as markers of success. However, many participants’ self-narratives suggested that although they understood the context within which they were expected to adhere to ART and to ultimately achieve viral suppression as often prohibitive or at times even overtly hostile, they nonetheless frequently viewed themselves as at least partially to blame for their lapses in HIV care engagement and/or ART adherence. In these narratives, participants noted that they felt that only once one achieved a certain CD4-cell count or HIV viral load would they achieve the status of one who deserved equitable treatment in society; namely, they now deserved interactions with health care providers that were not perceived as confrontational, suspicious, coercive, and judgmental. As Sandra, introduced above, noted:
I felt like people were judging me or, you know, they don't know my story the way they act towards you, especially if you're coming in with such a high viral load. They look at you like you're careless. You don't know my story, you don't know what I've been going through. You don’t know that I have private insurance and I got kicked off my insurance plan because of my, you know, my illness. You don't know the background of why I'm not able to get my meds.
Similarly, Mona, a 33-year-old Latina woman who was diagnosed with HIV at the age of 23, fully understood ART adherence and viral load suppression as desirable health outcomes, but nonetheless faced deeply interconnected barriers to achieving these outcomes:
Of course, yes, I should be taking my meds. You know, I want to take my meds. I know and hear the importance of taking your meds. It’s already proven that without meds I become very ill. [...] Right, but the biggest problem right now is money, right. And sometimes you say you just don’t feel like taking [the meds] … Honestly I would just want my CD4 to be in the normal range, or at least higher than 28 [a very low CD4 cell count] so I could feel good and feel better. And maybe I think when you feel better physically you think better mentally. So you know, I feel like I’m a regular person. When I’m sick and feeling not so well I’m a little depressed, you know, and I got through my little shit. But when everything seems okay you want to take your meds, you want to do good.
For Mona, feeling “a little depressed” and unlike “a regular person” often spiraled quickly into a situation wherein she ended up feeling “dead inside” and missing doses or selling/diverting her medications altogether, which she noted repeatedly was often her only option for survival: “Yes, honestly (when) it’s not difficult … I don’t have to sell them.” As is the case with many participants, Mona saw depression, stigmatization, and financial necessity as deeply interconnected, if not indistinguishable. Again, within these narratives, the unwillingness or inability to regularly take HIV medications was sometimes understood as a personal failure rather than a failure of a larger system to provide appropriate supports such as high-quality housing, an adequate food supply (as food insecurity was endemic in this population), and sufficient entitlements to allow participants to make ends meet, along with their health care providers’ failure to understand things from their perspectives, including an understanding of the structural barriers that characterized so many aspects of their lives. Mona, introduced above, described her situation as follows:
Nobody wants to be a bum or a drug addict, and it just doesn't happen, life happens. You know, sometimes when you don't have a friend you don't know how to cope. And you turn to drugs, and you get fucked up physically, you know, you just change who you are. I felt like that was happening to me too. [...] I just want to enjoy life for what it is. I don't want to be rich. I just want normal. I just want furniture in my living room. I want everything a normal mom wants. I don't want nothing more. I don't want nothing less. That's it. I just think I compromise too much.
Like Mona, nearly all participants described “normality” as an all but untenable goal in the past, present, and/or future, and viewed themselves as largely responsible for having not achieved that goal.