Table 2 HIV Diagnosis Experience Themes

Diagnosis trauma

Direct trauma

Refers to perception of HIV as a fatal diagnosis, anticipated loss of life goals and dreams.

“When I first got diagnosed, I thought it was a death sentence … I was shocked, disappointed with myself, disappointed with the person that gave it to me, depressed, and that’s pretty much it.” (Participant 5, age 40s, diagnosed 2010s)

“I was overwhelmed, but I didn’t cry … there was so much going wrong in my life it was just another slap in the face … It was so sterile, so detached from emotion. It was like I would have a year left to live” (Participant 10, age 30s, diagnosed 2010s)

“I cried, I thought my life was over, I was like I’m not gonna be able to have any kids, if I tell my parents about this they’re gonna go absolutely nuts … after I found out I was homeless, I had to go into the SRO system … Once I got into my apartment I pretty much was bound (there), stopped hanging out with my friends, stopped going to school, didn’t even go grocery shopping first couple of months, just smoking weed all the time …. I probably missed a lot of appointments, I didn’t really deal with it (Participant 7, age 20s, diagnosed 2010s)

The struggle became even more harder because I had other things that I had to tackle, but that’s what was really the difficult—was the anxiety and the depression, that—it’s just—it’s hard to even explain that mentally, if you have a weak mind and you’re in a weak place, it’s easy for the devil to kind of play on those feelings, those emotions. You’re not suicidal—and I’m not a suicidal person, but I did try to commit suicide when I was with my ex, the ex who gave it to me. I did try to commit suicide while I was with him and we were living together, but again, I’m not a suicidal person. Again, that was one of those situations that was—I was dealing with a mental health situation.” (Participant 13, age 30s, diagnosed 2000s)

Vicarious trauma

Indicates being affected by someone else with HIV being treated poorly or dying. The experiences of others may be witnessed directly or learned about through word of mouth. Usually refers to a family member or someone else emotionally close to the participant.

My grandpa’s brother was gay and died in the 90s from HIV. That was kind of our introduction to it, if you will. Because we grew up in a very religious family, and we didn’t really know too many gay people … a year or so before he died, we were all at my grandpa’s house, and he came over. This was after he’d been diagnosed with HIV, and everyone knew he had HIV. They came over, and they put all the kids in a different house, because my grandpa lived next to his sister. They took all the kids over to his sister’s house, and the adults stayed over at my grandpa’s house, so they could visit with him, but they didn’t want the kids around, because they didn’t want him to infect the kids (Participant 14, age 20s, diagnosed 2010s)

HIV-related and intersectional stigma

Diagnosis added shame to the burden of intersecting stigmas

“My culture is something that is anathema to me … I don’t feel comfortable being who I am having not been able to choose. If I could go back again I would choose something else. It’s a horrible statement because it contradicts my overwhelming sense of pride in being different and unique … because I’ve had so much plight in my life in having to deal with so many obstacles that come from being black, I actually left the country for a number of years as some relief, escape … When I came back, the reverse culture shock was quite [] … being objectified or ostracized solely based on the color of your skin is literally insufferable. I don’t know how we survived for so long with the things that we have to deal with … a lot of oppression has caused me to take on behaviors of the oppress (or) and I tend to discriminate against my own kind. I think I deal with a lot of [homophobia] from black people and a lot of [racism] from gay people and a lot of my strongest fears and most scathing situations have come from other gay black men. [Being positive] is just not something I’m proud of … I don’t want to have that be another object or label that’s put on the already long list of labels. I have to deal with being a minority in several different ways … I haven’t told my family and the reason behind that is my mother, when she found out I was gay, said, ‘I don’t care just don’t get AIDS.’” (Participant 1, age 30s, diagnosed 2000s)

Lack of patient-centeredness

Healthcare system environment

Considers the atmosphere in the clinic or medical office: physical setting (comfortable or not) treatment by staff (welcoming or not, attentive or not), protocols for delivering care

“He was a general practitioner. He wasn’t my doctor. I had no relationship with him so he sent me to a clinic in Newark … there were benches lined up against the wall and people were waiting to be called in … they basically told me to go in peace … There wasn’t any kind of personal relationship. There was really not much else. I was a number.” (Participant 8, age 50s, diagnosed 1990s)

Medical provider

Includes provider affect, experience, identity. Includes provider’s delivery of the diagnosis (callous, sensitive), level of engagement (attentive or not, willing to answer questions or not)

“It was a bit strange … there wasn’t taking by the hand, you have it. It was more like you have it. This is it, so you need to be on medication. They were pretty much straightforward about it. There was no beating around the bush. There was no pity party … They walked out the door and left [me] in a room, alone, by myself, I guess, to absorb this … I was a bit taken aback, so this is how it is when you get infected. This is how you’ve been delivered the message. It’s thrown into your face” (Participant 16, age 40s, diagnosed 2010s)

Acceptance of HIV diagnosis

Disclosure or sharing of diagnosis

Considers length of time before disclosure, with whom the participant shared diagnosis, reactions of those told, factors considered in the decision to disclose

“I feel like when you’re being authentically yourself and you’re being honest with people about it, and you let go of that mentality of feeling like you’re a stigma … Knowing that, for me, is that I’m always aware that if these people are as open-minded as I think they are or expect them to be, then they’re going to take what I’m saying at face value, and they’re gonna take my truth, and they’re going to absorb it and respect that and respect me.. That’s it.” (Participant 13, age 30s, diagnosed 2000s)

Social support

Includes degree of comfort with HIV in social or family networks, nature of interpersonal relationships and emotional ties

“I don’t know adult life without HIV because it happened at 21 … I still struggle sometimes with the stigma because it’s coming back. It used to be really bad in the beginning and then when I moved to New York, people … were so open about it that it actually liberated me as far as the stigma was concerned.” (Participant 2, age 50s, diagnosed 1980s)

Self-motivation/Personal growth

Describes action taken to learn more about HIV, via research or speaking with friends or providers. The additional information created an empowered mindset to view HIV differently from at the time of diagnosis.

“Before I was diagnosed honestly I believe my HIV is my karma because they say you never wish anything on somebody else that’s wrong with yourself. When I was younger I talked about people with AIDS and I honestly thought it was a death sentence. You did this. I thought I would never catch it. Like, I could never catch this. Once catching it, I read up on the information about it, the disease, this, that … I said okay it’s not a death sentence cuz medicine is not where it was … It’s totally different now. It’s manageable now. You can’t be ignorant to being HIV positive. It’s not a death sentence. If you’re taking care of yourself, it can be managed.” (Participant 15, age 30s, diagnosed 2000s)

“Just a few years ago it was a death sentence. In 10 years, you’re gonna die. In five, you’re gonna die and so you gotta take this. You’re gonna lose weight. You’re gonna get skinny … Now people are living with it for 20 years” (Participant 11, age 50s, diagnosed 2010s)

“My therapist was good because she let me know that it’s not a death sentence what I had, so I felt like it wasn’t the end of the world for me … I have a more positive outlook on life itself, being HIV positive is not a death sentence, you know.” (Participant 5, age 40s, diagnosed 2010s)