A total of 47 PLWH attended Session 1, completed the informed consent and stigma survey, and were issued a camera. Of those, 35 completed sessions 2 and 3 and included their final photo display in the exhibits. Most (66%) self-identified as Christian, and nearly 40% attended church or a place of worship weekly. PLWH worried about church rejection (34%), felt guilty (21%), and ashamed (34%). Participants self-identified as cis MSM (n = 18), ciswoman (n = 5), transwoman (n = 10), and non-binary (n = 2). Participant discussions of stigma uncovered how support was a complex issue in their lives and came at a cost. For example, participants identified four key areas in which support intertwined with stigma and complicated their use and access to external and internal resources. Four themes emerged: medical care, social support, church, and self. Each theme is described below in detail.
Medical care as support and stigma
In general, PLWH in our cohort agreed HIV is no longer a death sentence as they recognized they are living proof of all possibilities. Participants self-disclosed the time frame of their diagnosis ranging from 2 years ago to at least 30 years. The importance of medication adherence facilitates improved health outcomes as expressed by a participant:
It’s not a death sentence. You can live as long as you want with HIV as long as you take your medicine every day. It’s been 2 years with me and you see I am moving on, staying positive. (transwoman).
Taking a daily pill was perceived as low burden as well as going to regular doctor appointments. Examples were shared by PLWH on how treatment gave them a sense of being in charge of their health and giving them a new outlook on life.
If I don’t take these two little pills every single day like clockwork for the rest of my life. I can’t play. I can’t work. I can’t love. I can’t get to that marriage or the kids. It’s my lifeline unfortunately. (cisgender male) (Fig. 1).
For others, the path to acceptance of an HIV diagnosis is not always as easy and in fact more complex. Taking daily medication can be a “constant trauma and reminder” of poor treatment received in medical settings and fear of being ‘outed’ as one participant explained:
Even though medicines can help you live a long time, sometimes because of how you’re treated, how you feel can make you even consider taking your own life or doing some other hard stuff to cope. (cisgender male).
There were descriptions of medical providers at the local health department interrogating participants while taking sexual history about time spent in jail, sex partners, and accusations of having sex with underage minors. One participant recollected their visit:
The lady was loud with the door cracked … I was thinking … ‘people don’t want to come back here once they hear someone talking to them like that.’ People will say, ‘I’ll stay away and just go and die.’ (cisgender male).
Lack of privacy and physical safe space further exacerbated feelings of shame of others seeing them at HIV care clinics for medical appointments or fear that others would find out they were living with HIV.
Social support as support and stigma
PLWH discussed both family and peers as sources of support and in some cases facilitators of medication adherence and eventual undetectable viral load. Familial ties give power to deal with others who do not support PLWH and facilitate coping mechanisms. One participant said:
The thing that helped me become undetectable as soon as I did was sticking to my medication regimen … and I had friends that were [HIV] positive that were encouraging me. They were like, ‘It’s going to be OK. You’ll be fine.’ … It was having camaraderie and family around you saying, ‘You’ll be OK. Everything is going to be OK...’
With support from an interpersonal network, PLWH were able to disclose their status and work toward healthier behaviors to improve HIV outcomes.
In other scenarios, family and peers particularly from the LGBTQ+ community were less supportive. Internalizations of being shamed for life choices on who you love and blamed for HIV diagnosis emerged. A cisgender male told his story of dialogue with his mother:
People condemn you for the way you are living your life. They want you to change who you choose to love. My mother said: ‘You got the virus, and it’s probably because of the way that you are living.’ They just want to preach to you. It’s an everyday struggle. It’s not just today. I feel like I hear these words every day.
PLWH desire genuine love. There were protective mechanisms described on HIV disclosure to minimize the internalizations of hurt from loved ones as one participant shares:
[Telling people and having them reject me] started as being my driving force. It was like, OK, let me get on top of my $%#* because when they get rid of me. I want to be able to take care of myself because it’s going to happen.
The LGBTQ+ peer network was described as both a source of strength and support as well as stigmatizing. Within network disagreements, presented barriers to working together as a cohesive community of LGBT to armor up to “see the enemy coming.” ( Fig 2).
Church as support and stigma
Several participants identified the Black church as a source of support for themselves currently or their family historically. For example, participant #12 talked about his commitment to his church and how he wanted to provide education to his pastor and to the congregation about HIV. He has made educating his faith-based institution and other faith-based institutions his life’s mantra. He strongly believes in using his own personal face and story to help reduce negative perceptions about people living with HIV. Others wanted to see their churches as supportive but saw limitations to this. For example, participant #8 said their church prayed for people with cancer and although they hoped that HIV would receive the same level of care – they admitted, “it wouldn’t be the same prayer.” (Fig 3). Participant #9 described how their church had a sign indicating “love without limits” but that it was “a lie” because that church would not allow PLWH to come and speak there.
Others talked directly about discrimination at the church. For example, participant #16 said, “When I was first diagnosed, I went to my Pastor. He pretty much turned his back on me after I served on the usher board for four years. I felt like I could go to him.” Participant #28 (transwoman) added that they were called names (“faggot, punk, boy, sissy”) in the church. Others, like participant #45, described how he expected protection but instead experienced abuse by church members.
When I was small, all we did was stay in the church, from sunup to sundown … that’s where I was supposed to have been protected. I was not protected, I was abused. Just evil in my eyesight because the things I went through … It still bothers me right now, so that’s where a little of my stigma comes from, the church, because there’s a lot of things that happened to me in church.
The Black Church was not a single experience for people, however. Some received support, others wanted it, but didn’t find it, and others, were hurt by the church – and regardless of experience, many still wanted and held hope that the church could be “open and understanding of people’s lives” (Participant #28). Participant #8 described the complexities and ironies best when he said:
They [church] are either judgmental or they will embrace you. When you walk into a church, it’s beautiful. It’s shining. It’s clean. It’s got the chandelier, you get a lot of judgment in that place.
Self as inner support and stigma
Self-strength or resilience was a source of support for participants, but internalized stigma also manifested among participants – and challenged their ability to protect themselves from stigma. Several participants said they believed that they did something wrong to get HIV and thus, hid it from people. For instance, participant #15 said “I was mad at myself because I allowed myself to be in this situation, so I was blaming me for having HIV. I waited about 13 years before I told anyone.” Participant #23 noted he could internalize stigma by saying it could get under his skin and then he would “start crumbling.” Similarly, participant #44 showed a picture of a trash can to show that stigma could make one feel “unimportant” and “like trash.”
Other participants relied deeply on their internal resources to overcome stigma. This was a particular key theme among transgender participants as compared to cisgender participants. For example, this theme was apparent among discussions of ten participants who identified as transgender in the study and twenty-three who identified as cisgender so it was a notable difference. These participants also commonly noted the layered and intersectional stigma regarding their HIV and gender status, like participant #24:
We all experience some type of trauma, whether it’s emotional, mental, or physical trauma. Having HIV or having any STD, you being trans or gay, it’s not just something that’s going to stop. It’s always going to be a discrimination behind it or somebody criticizing what you do. I took a picture of the sign to remind us that you always can move ahead (Fig. 4).
Participant #27 discussed police violence – and specifically police “dumping” trans people across the state border, but noted, “we’re here to stay, and you cannot take us down.”
Others also noted moving forward amid challenges via inner strength and positivity. Participant #22 noted that people may judge or “put stigma on me” but that “No matter what, we all are human. We’re all valid, we all have a voice in this world, and we all have special talents … [Stigma] is not me. I’m me. I’m an individual and I stand alone.” Participant #22 also said it was important to “demand respect,” an idea shared by others. Participant #49 said he was “strong, a fighter” and Participant #31 defined herself as a “hero” explaining:
I love myself and I love waking up seeing myself as a girl. I want them to know that’s a hero. A black African hero. Being trans, they can know that you can survive for you, you can still live, because you got some trans that don’t care about life.
Similarly, participant #43 said that taking the shame off of HIV helped him and others to gain “knowledge, a sustainable life, and a good life.”