Written by a staff member living with HIV.

One of the most amazing things about living with HIV in 2023 is knowing that an undetectable viral load makes transmission of HIV through sex impossible (U=U). However, it's not always quite so simple. 

As someone living with HIV for over a decade, the doors U=U has opened for the community of people living with HIV are uncountable in number. U=U has broken down HIV stigma in our communities on a level which I can’t fully express. Being ‘undetectable’ became a part of my identity when talking about my HIV with whānau, partners, and friends. Every single appointment with my HIV specialist doctor became routine. Every 9 months, I go in and get my bloods done.

So, you can imagine it came as quite a shock when I had a phone call from my doctor who informed me that my viral load was no longer undetectable.

This is called a ‘viral blip’ and it’s a totally normal thing to happen. Doctors still don’t have concrete ideas about why it happens, but it does happen on occasion. But it hadn’t happened to me before.  I was assured that, in all probability, my viral load would be undetectable again by the time I was next tested. That helped a little bit with the anxiety, but not all of it.

In a way, my anxiety really stemmed from feeling as though I had had a piece of my identity robbed. When ‘undetectable’ becomes a part of your identity, a viral blip is a reminder that we can’t take anything for granted. It’s empowering to have conversations about U=U with people I’m dating, hooking up with, or looking to start a relationship. U=U has provided an opportunity to communicate that I care about my health, I am looking after the health of the people I sleep with, and that my status poses no risk to them.

Perhaps there’s so much pressure with some of the old tropes and harmful stereotypes of people with HIV going out of their way to harm others; U=U provides an opportunity for people like me to effectively and succinctly communicate that to others. Since the world has known about U=U from scientific studies, it became the primary way for some of those living with HIV to communicate that they’re not a risk to other people. There’s a lot of pressure for us to try and prove we’re not a risk to HIV negative individuals. The loss of U=U in that moment made me feel that pressure more acutely than ever.

So often, I tell people that U=U ‘helps keep our communities safe’. By being undetectable, I play an important role in making sure our communities are safe. If I am no longer undetectable, does that mean I’m not keeping the community safe anymore? Was I no longer safe? Was my body a weapon? Through no fault of my own, it suddenly felt like I was no longer a part of the solution to stopping HIV transmission.

My friends living with HIV reassured me that viral blips happen. It’s normal. It’s scary, but it’s normal. This was helpful in the reassurance, but I still struggled with the brief loss of identity. U=U was always a place where I could hang my hat at the end of the day to reassure myself and other people that I’m not a risk to others. It was a security blanket that it felt like was taken from me for no reason through no fault of my own.

A few weeks later, I got an email from my doctor: my second set of labs showed me as undetectable again. I felt a huge wave of relief wash over me. However, it’s left me with questions I haven’t considered before. If we think of U=U as a strategy for our community to fight HIV, it puts a lot of pressure on people living with HIV to maintain that undetectable viral load. What about the small group of people who can’t maintain an undetectable viral load? What about people undergoing a viral blip? Does U=U as the primary strategy still put the expectation on people living with HIV to communicate that they’re not a risk to other people? Is putting all the pressure on people living with HIV to communicate they’re not a risk to others fair?

U=U is a strategy, but it’s not the only strategy. We have HIV testing, we have condoms, and we have PrEP. These are actions each and every one of us in the community can take to stop HIV transmission.

Ultimately, this whole event has reminded me of a few truths I hold dear. It is up to each and every single one of us in the community to:

• Educate ourselves and speak openly about HIV.
• Help educate others and lift each other up.
• Speak out against HIV stigma.
• Treat people living with HIV – regardless of their viral load – with respect, kindness, and decency.
• To work towards ending HIV transmission together.

The only way to achieve this is together.