An HIV diagnosis continues to cause distress and a loss of sense of self, particularly among people with limited HIV knowledge and temporary migration status. A qualitative study conducted by Dr Nathanael Wells of University of New South Wales and colleagues also showed how initially negative emotions lessened with time, with some experiencing personal and professional growth because of their diagnosis.
The study team interviewed 34 people and followed up with 25 of them for another interview a year later to understand how their HIV diagnosis had affected them.
All participants were diagnosed with HIV between 2016 and 2020. Most were gay men (21) and bisexual men (eight). The others were three heterosexual men and two heterosexual women. The group’s ages ranged between 20 and 59 years old. Most participants were born in Australia (22) or Asia (six). All but one was on HIV treatment and undetectable at the time of their interview.
Uncertain and disrupted life plans
HIV diagnosis was disruptive and impacted participants’ ambitions. Participants who had limited updated HIV knowledge thought HIV was a terminal illness.
“I have lots of plans in my mind. I want to get someone in my life, and I want to get a kid, maybe surrogates … All these things completely faded away … Without all the information [about treatment], I thought that this is the end. Sooner or later, I’m going to die.” Pai, gay man, aged 28.
For others – particularly migrants – an HIV diagnosis was a real threat to their long-term status in Australia (a country that denies long-term visas to migrants with HIV, even if acquired after migration).
“I felt [I] lost my future. I felt [I] lost my family, lost my job. Lost everything … I didn’t think I was going to die at all.… I just thought [about] my future.” Marlon, gay man, aged 37.
Losing hope for new relationships
Participants worried that HIV would impede existing and future romantic relationships. A recurring major concern was being rejected.
“My biggest concern at the time was: who was going to love me now that I’ve got this virus.” Bunji, gay man, aged 41.
Bunji also feared being a burden; that his family would “have to care for me, or [they’ll] abandon me.”
Stigma and self-stigma
For some participants, their diagnosis involved confronting their own HIV stigma which in turn transformed into self-stigma. Many used degrading terms to describe how they felt being HIV positive: “spoiled” “disgusting” and “dirty.” One participant stated that he has been brought up to believe an HIV diagnosis wouldn’t happen to “someone from a good family.”
Moreover, it led to a shift in identity and a sense of failure for this man whose work focused on reducing HIV transmission:
“There was a lot more going on than just the simple result. It was the fact that I felt like I had failed completely myself, as a person who has self-responsibility for sexual health [and] being on the forefront of trying to stop this illness.” Zaid, gay man, aged 40.
For gay and bisexual men there was also an impression of a second ‘coming out’ and - for some - an inevitability.
“Wow! What does this mean for me?” Because I thought, “I’m going to die.” When I came out to my little sister about being gay and I was 19, she started crying. And I’m like: “Why are you crying?” She said, “Because I don’t want you to get sick like that man on TV and die.” She was talking about Tom Hanks from Philadelphia.” Bunji, gay man, aged 41.
For others, they had felt that their class status or being in a monogamous relationship would prevent them from becoming HIV positive, so were distressed at their diagnosis seeing it as “another sub-group of being in the LGBT community that’s ever further a minority.”
“[HIV] is a class thing, very much. [Contracting HIV] is just something that would happen to the uneducated, the stupid. It’s so ignorant it’s ridiculous. It’s staggering, looking back on it … there’s definitely a cultural and a class connotation to HIV.” Rhys, gay man, aged 35.
Rebuilding self-esteem and confidence
All participants experienced challenges in adjusting to their HIV diagnosis, but with time some felt it had brought about positive changes to their lives. One participant shared that being HIV positive had “made me more empathetic.”
Others shared that their diagnosis had made them “more informed” or “more conscious” about their health.
Some participants who had received peer support chose to become peer supporters, which led to their personal growth and professional development.
“[HIV] has given me purpose because there is no support for Indigenous people. It’s made me angry because I see people doing a mediocre job.” Bunji, gay man, aged 41.
“I don’t think [HIV] has changed my life in a bad way. I actually think it’s changed my life in a good way. … I can become a facilitator or become a peer support [worker] for other people who are newly diagnosed. It’s given me something else good in my life to do.” Amber, heterosexual, aged 29.
An HIV diagnosis creates a shift in one’s sense of self and uncertainty about the future. Participants’ worries were due to internalised stigma and (for migrants) the risk of their life trajectory. With time, many adjusted to their diagnosis and linked specific benefits to being HIV positive.
However, gay and bisexual men in particular were confronted with the intersection of HIV stigma and homophobia which complicated their ability to adjust. Moreover, the study highlights that misconceptions that HIV is a terminal illness should be addressed in the wider population so that a positive diagnosis is less devastating.
The authors conclude: “To properly support people living with HIV at diagnosis and beyond, it is important to consider the individual contexts in which diagnoses occur, while also working toward reducing social and structural inequalities and stigmas that can adversely affect individuals living with HIV.”
Wells N et al. HIV Diagnosis as Both Biographical Disruption and Biographical Reinforcement: Experiences of HIV Diagnoses Among Recently Diagnosed People Living With HIV Qualitative Health Research, online ahead of print 12 January 2023.