‘Undetectable’ is both a milestone and an identity for gay men recently diagnosed with HIV

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Achieving an undetectable viral load is a key milestone in the period after diagnosis with HIV, qualitative interviews with Canadian gay men suggest. Men incorporated knowledge of their own undetectable status into their identities as HIV-positive gay men and their sexual decision making, according to a study published in the August issue of AIDS Education and Prevention. Being undetectable helped many men feel ‘responsible’ and ‘normal’.

The findings come from in-depth, qualitative interviews with 25 gay men diagnosed with HIV in British Columbia, Canada between 2009 and 2012. All had acquired HIV less than a year before their diagnosis and half had been diagnosed with acute (very recent) infection. Up to four interviews were done, in order to see how experiences changed during the year after diagnosis.

Interviewees typically reported a period of sexual abstinence immediately after being diagnosed with HIV. During this period of adjustment, many men had no sex drive. Avoiding HIV transmission was a major concern for many, including this man:

Glossary

acute infection

The very first few weeks of infection, until the body has created antibodies against the infection. During acute HIV infection, HIV is highly infectious because the virus is multiplying at a very rapid rate. The symptoms of acute HIV infection can include fever, rash, chills, headache, fatigue, nausea, diarrhoea, sore throat, night sweats, appetite loss, mouth ulcers, swollen lymph nodes, muscle and joint aches – all of them symptoms of an acute inflammation (immune reaction).

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

treatment as prevention (TasP)

A public health strategy involving the prompt provision of antiretroviral treatment in people with HIV in order to reduce their risk of transmitting the virus to others through sex.

“First of all, I killed my sex life. I was like, you know, I don’t want to infect anyone, I don’t want to take the risk and I don’t want to disclose, so the way of not doing is just not having sex.”

When participants did start to have sex again, they found themselves in an altered sexual landscape, facing new scenarios, challenges and possibilities. Faced with the difficulty of talking about having HIV with new partners, some sought out other HIV-positive men. Others avoided anal sex, even with condoms.

Learning that one’s viral load was undetectable could open up new possibilities:

“I didn’t play around when I was not sure… if I was undetectable or not. I didn’t play. They [sexual partners] would be open to it, but I didn’t want… Personally I didn’t feel comfortable, so I didn’t play until I was undetectable.”

“I started taking medication and when the viral load became undetectable, up until then my sex drive was just very low. After [it was] undetectable, I started feeling a bit more active than, you know, before and started taking – going out to see friends, bathhouses, tried to seek out, you know, some friends online. Became a bit more active in that regard.”

While some respondents had sex without a condom when their viral load was undetectable, others needed to use condoms and be undetectable to feel comfortable having anal sex.

Respondents had seen other men describe their HIV status on dating apps as “undetectable” rather than “positive”. They said that having an undetectable viral load made it easier to disclose their own HIV status:

“I’d say, I’m undetectable, I’m on medication, and they kind of, some people who know about HIV they figure it out. You know, have more open, they have sex with me.”

In talking about viral load with the researchers, many men spoke of “achieving” or “getting to” undetectable. It was presented as an important milestone, one which helped them feel normal.

“Having an undetectable viral load was the milestone of, number one, accepting that I actually have this condition and number two, taking proactive steps to manage it… In a very vague sort of way, you could say that being undetectable means I am normal again.”

“Once the doctor says to you that you are undetectable and you are, like, well on your way, and when you find out that you are this healthy, I mean, how do you go wrong? Where do you go wrong with that?”

The findings may not be generalisable to all settings. Many of the participants were diagnosed during acute infection, with an exceptionally high viral load, so may be more conscious of viral load than other people living with HIV. Also, they come from British Columbia, where ‘treatment as prevention’ has been widely discussed. On the other hand, these concepts have become more mainstream in other places since the interviews were conducted in 2009 to 2012.

The authors sum up their data: “In the year following HIV diagnoses, participants’ narratives reveal ongoing engagement with the concepts of HIV viral load, treatment and being undetectable. Nearly all participants reported that having an undetectable viral load was an important milestone that increased comfort and possibilities for negotiating sex as a gay man living with HIV.”

References

Grace D et al. Becoming “Undetectable”: Longitudinal Narratives of Gay Men's Sex Lives After a Recent HIV Diagnosis. AIDS Education and Prevention 27: 333–349, 2015. (Abstract).