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. More than half (56%) were men. The majority were African American/Black (79%; 15/18), and the remainder were Latinx. All were from low-SES backgrounds and received public health insurance. They had been living with HIV for 3 to 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, findings highlighted the complexity and challenges inherent in managing living with HIV over decades in the context of chronic poverty and forms of symbolic violence. On the one hand, 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 periods of institutional racism, precarity, and social isolation, during which adverse social and structural conditions were internalized as personal failings. These challenging periods were then followed by times of hard-won resilience and re-building. Over time, these repeated cycles shaped participants’ sense of self, optimism for the future, and motivation to engage in HIV care. Specifically, in addition to social isolation and chronic poverty, participants 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, and cyclical or persistent substance use problems. Indeed, stopping ART or non-adherence to ART was mentioned as occurring most frequently during times of high emotional stress, depression, and heavy substance use. Participants noted that their willingness or abilities to take ART and/or to engage in HIV care were highly dependent on the degree to which they valued their own physical and emotional wellbeing within the context of a rigid social hierarchy. Moreover, even when they felt motivated enough to adhere to ART, participants reported that their efforts were continually thwarted by numerous and seemingly insurmountable structural obstacles, including housing instability, financial hardships, and/or incarceration, parole, or probation. At other times, 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, a prominent form of symbolic violence. This commonly involved participants taking deliberate or semi-deliberate breaks from their ART regimens as a means of managing these emotional correlates of living with HIV.
Thus, the concept of symbolic violence was readily apparent throughout these interviews, as participants routinely expressed experiencing multiple intersecting social stigmas, their internalizations, and their effects on health and health behavior. Among the most common manifestations of symbolic violence 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. Indeed, participants often considered 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. 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. However, results complicated the predominant narrative in the field and among PLWH and their social networks of the causes of HIV (namely, due to bad behavior) and “failures” with HIV management over the long term as located at the individual level. Instead, results indicated that powerful social and structural factors, including the external manifestations and internalizations of symbolic violence, shaped the individual decisions and behaviors of PLWH.
Nonetheless, participants commonly did achieve and sustain high levels of ART adherence and HIV viral load suppression for long periods of time, even in the context of symbolic violence and chronic poverty. Yet, to do so, strenuous effort and extreme resilience were required. However, participants’ periods of less optimal HIV management were generally more salient to them than times of optimal engagement along the HIV care continuum. That is, participants often blamed themselves for their perceived failures while not taking credit for their successful efforts to manage HIV. 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 to mitigate the effects of symbolic violence at social and structural levels to better support PLWH. Importantly, participants’ substantial strengths and resilience are embedded within this study.
Overall, results 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 detailed 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 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, along with (4) the experience of restricted autonomy in HIV care settings and the larger context, including mechanisms of surveillance (e.g., probation), reduced HIV care engagement and ART use; 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. The 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 2. A summary of the predominant effects of symbolic violence, and the pathways from symbolic violence to HIV-related decisions and actions derived from the analysis, is presented in Fig. 3.
Being ground down by compounding material, social, and emotional challenges
Participants highlighted that their relationships to HIV infection and their feelings about ART adherence were dynamic and heavily influenced by forms of symbolic violence communicated implicitly or explicitly through range of individual-, social-, and structural-level circumstances or factors. In addition to the marginalized and stigmatized social positions noted above (e.g., chronic poverty, incarceration, substance use problems), most had personal histories marked by periods of street homelessness or unstable housing (e.g., single-room-occupancy residences), chronic unemployment, domestic violence, and food insecurity. Many participants described experiencing these collective hardships as a kind of “grinding down” that 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. Moreover, participants commonly expressed feeling increasingly dehumanized and devalued as their years living with HIV accumulated. Importantly, taking ART served as a near-constant reminder that one was living with HIV and therefore that one would be the potential target of an array of stigmatizing behaviors on the part of strangers and loved ones alike. In many cases, PLWH appeared conscious of the effects of symbolic violence, although they did not use that term, and also showed evidence of resistance to it. Hank was a 52-year-old Black man, diagnosed with HIV 15 years ago. Hank described his awareness of the ways that symbolic violence associated with living with HIV while incarcerated affected his sense of self and behavior, as well as his drive to push back against the effects of symbolic violence by articulating its effects and seeking mental health treatment. Indeed, Hank was highly adherent to ART at the time he was interviewed, and had achieved HIV viral suppression. He noted,
Yeah, so you know during my incarceration you know with the stigma of HIV, AIDS, you know, and you have to go to what’s called pill line to get your medicine. So then you know you got people [asking] what’s wrong with him? Why you going to pill line everyday taking all these pills. You know, so you like man I’m feeling good. I ain’t going up there. That [stigma while incarcerated] and like the mental block, you know [was why I stopped ART]. It was a lot of stuff with it. So from that point on I felt like a monster who needs to be in a cage. You know and then every time I take that medicine it was like a constant reminder. All those feelings come back every time I take those pills, so that’s kind of why I’ve had a problem taking them. You know I’ve expressed that to, you know, the people [at a social service setting]. I’ve been seeking mental help.
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 ART adherence, HIV, and with overall health management. As Barry, a 54-year-old 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. [...] I don’t see why people are cruel still with it.
Notably, the inclination to link HIV-related stigma and associated microaggressions with individually directed ignorance or cruelty, rather than with more systemic forms of social inequality as Barry did, was prevalent throughout interviews. Interestingly, however, Barry, like many participants, still expressed some degree of skepticism regarding whether individual factors were 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. This was typically complicated by continuous and re-lived emotional trauma and a number of internalized social and structural 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 Black man diagnosed with HIV while incarcerated 12 years ago, 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. [...] 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 HIV diagnosis. This acceptance and adaptation, in turn, were necessary if he were to take HIV medication regularly. Ulysses was a 47-year-old Black man who had been living with HIV for 16 years. Similarly, he 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’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 voluntarily 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 symbolic violence manifest in emotional, social, and structural influences. Indeed, for many participants, the decision to sell or “divert” HIV medications to purchase food, pay bills, or visit loved ones 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. Raul lived in a single-room-occupancy residence, which he described “a step above living in a shelter,” but the only realistically affordable option. Similar to many other participants in the study, Raul described a combination of material and emotional pressures related to prison, parole, and his living situation that frequently resulted in what he referred to as a “fuck it attitude”:
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.
Importantly, this “fuck-it attitude” can be interpreted as form of resistance, resilience, and agency; it is a way that Raul has available to him to challenge structural violence, including 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. Consistent with symbolic violence, 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 keenly aware of the effects of dehumanizing physical spaces. 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. 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 resulted in her pre-empting the potential experience of stigmatization (although universal precautions are intended to be de-stigmatizing since all providers are required use them for all encounters that entail patient contact). Moreover, she took ownership of it. Yet, as with many other participants, these experiences still led Sandra to avoid healthcare visits on many occasions. Indeed, the majority of participants experienced myriad inter-connected barriers to HIV management, which cumulatively led to a lengthy process that many participants described as a grinding down, as noted above, even to the point of interfering with their will to live. Put plainly, for almost all participants, forms of symbolic violence such as HIV-related and other related forms of stigma were critical aspects of a larger process that eventually led individuals to “give up” on themselves for periods of time. Moreover, these stigmas quite often served to reproduce social differences in ways that did not always involve overt forms of individual discrimination. 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.
Social isolation and self-isolation
One of the most common strategies for managing the effects of intersecting forms of symbolic violence, specifically stigmatization and marginalization, was to avoid social interactions altogether, thereby effectively excluding themselves 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, participants commonly reported similar stigmatizing experiences at home. For example, family members were known to use disposable dinnerware, refuse to share food, or spray down bathrooms or kitchens with disinfectant when participants exited. Participants often noted that they saw themselves as an outsider within their families. Further, they 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 social interaction. Ernie, a 41-year-old African American man who was diagnosed with HIV at the age of 30, described the initial shock of an HIV diagnosis as 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? [...] 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. [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. [...] 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.
Despite the deleterious effects of social isolation, participants commonly withdrew from much-needed social support and social interaction to avoid the emotionally punishing experiences of enacted and anticipated stigma. 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 noted above, participants frequently relied on substance use to cope with the myriad problems they faced in their everyday lives. This, in turn, often created its own set of challenges with respect to social engagement. Glen, a 47-year-old 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, was a 50-year-old Black man who learned he was HIV-positive at the age of 35 and who described self-isolation as a defense strategy that often led to “shutting down”:
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 [to HIV care]; 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 findings above illustrate, for many, avoidance of social situations was experienced as a form of self-isolation, but the structural factors driving self-isolation were all but unavoidable. For instance, many participants had been placed into supportive housing. These settings were commonly considered substandard and even potentially volatile living situations. This necessitated non-involvement with other residents, who were viewed as sources of stress, caused in large part by participants’ feeling pressured by their other residents to engage in illicit substance use. In many cases, these other residents were seen as potential perpetrators of theft or even physical violence. As Glen, introduced above, noted,
I went to [substance use] 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.
While social engagement was vital to participants’ well-being, their fears they might accidentally disclose their HIV status to others by taking their ART in view of others exacerbated the need for self-isolation in many cases. As, Glen continued,
So I like taking my meds, it's just I forget sometimes. And then sometimes if I do remember […] 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 not necessarily evident in the ways they experienced their everyday lives but instead, when they contrasted their typical experiences in social service and health care settings with occasional involvements in settings they experience as culturally and structurally salient. In particular, they described these latter types of settings as designed specifically to recognize and address the numerous ways this population of PLWH experiences marginalization and dehumanization. Bernard, a 54-year-old 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 as being notable in that while there he felt he was viewed in a positive light:
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.
Harold, 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 man who was diagnosed with HIV at the age of 40, 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, and stressed the importance of being treated with dignity and respect.
Stigmatizing aspects of patient-provider interactions
As noted above, participants consistently reported experiencing the effects of social isolation outside of health care settings. Additionally, 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. This, it was suggested, was often rooted in racial, gendered, or other forms of social inequity. Ernie, introduced above, related the following:
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.
Thus, Ernie experienced a form of verbal symbolic violence enacted through stigmatizing labelling ("prostitute," "streetwalker”), although it was not clear whether such language was explicit, implied, or feared.
Despite commonly having numerous positive experiences with healthcare providers, participants nonetheless described acts of overt discrimination from providers, or they anticipated experiencing negative interactions with providers in the future. Harold, 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 exacerbate 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.
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 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, neglectful, or even harmful, and cited this as a reason to either actively seek welcoming, non-judgmental providers, or to avoid healthcare visits altogether.
Restricted autonomy and surveillance
For nearly all participants, feelings of distrust of and ambivalence and anxiety about health care settings were closely associated with similar emotional and social experiences in non-healthcare settings, which they generally viewed as overlapping. 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 took ART daily in the presence of 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 ART for periods of time. Sal, a 37-year-old 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.
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,” as Sal described above.
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 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:
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, Tyler explained how substance use cessation was 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. This 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, introduced above, 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. [...] 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 symbolic violence in the form of stigmatization, both within and outside of clinical interactions, were commonly experienced as not only demeaning and degrading but as life-threateningly hostile. Further, they contributed to distrust of the healthcare system. 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 interpreted 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 myriad obstacles related to meeting their daily needs, participants nonetheless continuously expressed a desire to “do well” with respect to their health. 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 as prohibitive or at times even overtly hostile, they nonetheless frequently viewed themselves as partially to blame for their lapses in HIV care engagement and/or ART adherence. For instance, many participants noted that they felt that only once one achieved a certain CD4-cell count or HIV viral load level would they deserve equitable treatment in society. 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, faced deeply interconnected barriers to achieving these favorable HIV 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 [would] 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 go 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, including an understanding of the symbolic violence and 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, an internalization of symbolic violence.