Campbell 24, Gay, Sydney
Campbell is a young man living with HIV, having been diagnosed in his early 20s. He developed a unique way to allow people to share their status on dating apps and is passionate about the needs of young people with HIV.
Give us a little background on your story and your HIV diagnosis
I was the third of five siblings, so I had a strange view on family. I was really good at rugby from a young age and, by the time I turned 18, I’d made the Canterbury, Mid Canterbury and South Canterbury Reps.
Sex education was always weird – I always knew I was gay. A few facts managed to stick in my memory, for example, that using condoms stopped you getting STIs (we called them STDs). Being gay was better left unsaid and HIV never came up in conversation, nor was it mentioned in the Timaru Boys High School curriculum.
I severely repressed my desire for other men because the Pentecostal Church community I was heavily involved in considered homosexuality an abomination. ‘Pray the gay away’ was one option, the other was conversion therapy, which wasn’t my cup of tea. I knew that there was nothing wrong with me.
The Christchurch earthquakes prompted me to leave the safety of my birthplace. I flew to Sydney in 2012 thinking that a more urbane, cosmopolitan life would help unlock the shackles of my teenage years.
Sydney was at once frightening and captivating for the rural boy I was. Events like Mardi Gras were baptisms of fire into a new-found gay lifestyle. I became active within the rainbow youth support community, building networks and liaisons while making new friends. I found a supportive family to come out to, while my friends just knew and accepted me for who I was.
At the end of 2014 I became severely ill and my doctor recommended I get screened for STIs. The result gave me a real jolt: I was diagnosed with HIV. Amid the initial confusion I kept everything to myself — I spent a lot of time in self-reflection and chose to just get on with my life. I decided to reach out and find people with similar stories and experiences.
What prompted you to go public with your HIV status and what was that journey like?
I began seeing a guy who was also HIV+. He was very open about having HIV, engaging with the gay community in a normal way, which encouraged me to do the same. Our discussions, my desire to reach out and my natural honesty led me to decide that my online presence should reflect my HIV status, initially on apps like Scruff and Grindr. This felt the best way to take ownership of my diagnosis.
I also wanted to be seen publicly as a healthy, happy 23-year-old who “just happened to live with HIV” and show that normality was achievable. I experimented with different ways to describe my status on profiles and “designed” the [+u] symbol, signifying that I was HIV+ with an undetectable viral load. My reaching out to the wider community and asking the right questions made the [+u] symbol a global phenomenon — it went viral (excuse the pun).
[+u] is defined on the Scruff app and is referenced in the online urban dictionary. There is artwork based on it and I have spoken at forums and been interviewed by the media about my [+u] message. This followed a worldwide embracing of the symbol, literally overnight.
The lack of visibility of men under the age of 30 living with HIV concerned me and I found it seemingly impossible to make contact with guys of my age and status. This kept worrying me until I concluded something was missing and needed to be addressed with young guys with HIV.
Although being open about my status meant navigating awkward and embarrassing moments, online or in bed, disclosure became easier. New Zealand law requires people living with HIV to take “reasonable precautions” to avoid transmission if they do not disclose their HIV status.
The term “reasonable precautions” has been interpreted by the Court to mean using condoms for sexual intercourse. To date, there has not been a case to test the Court’s interpretation of [+u] (having an undetectable viral load) and whether it would be viewed as taking reasonable precautions.
Have you experienced HIV-related stigma?
The stigma I face most often relates to my youth. Comments can be well meant or they can aim to hurt. I’ve experienced a range of responses, ranging from mild – ‘you should know better’, ‘that’s such a shame’ and, ‘but you’re so young’ – to deliberate condemnation and “slut shaming” attacks, like those in the comments section of a samesame.com.au interview I did.
These voices inform a worldwide conversation based on ignorance, fear, condemnation, hatred and judgment, which upsets me. This kind of sentiment drives a wedge between our communities. The samesame.com.au comments that hurt most came from the same community with which I identify as a gay man and whose rights I uphold in my work at Sydney Mardi Gras.
Conversations around HIV still fail to address or understand the stigma associated with a positive HIV diagnosis, especially for young people. Youth diagnoses are becoming more statistically significant each year.
There is no place for condemnation, judgment, shame and humiliation in conversations about HIV, especially when they relate to young people with HIV. This demographic – my demographic – exhibits strength as well as courage, yet we require just as much love and support as the generations before us.
HIV doesn’t discriminate. It doesn’t care about how old you are, what your heritage is or who you sleep with.
We need new conversations. They need to be of better quality and they need to happen more regularly because there are young people out there who feel they can’t be open and honest about their status. They are afraid to get tested. These fears are all associated with stigma.
Talk to us about starting HIV treatment
Starting treatment was scary! I made the mistake of reading too much and ended up making assumptions that I now know weren’t useful or accurate. It’s easy to do, considering how integral searching online has become to daily life.
I feared starting treatments would make my hair fall out. I thought I would lose or gain weight, become violently ill, suffer allergic reactions and so on. It never occurred to me that I would have no side effects at all but, in fact, my treatment has been free of any medical drama or side effects from the outset.
The quantity of information surrounding HIV online is vast and of questionable quality – it’s easy to get bogged down. It’s important to remember that some of the information is old and out of date. Other information is just wrong, due to ignorance, misunderstanding, or (rarely) malice. For me the best approach is to balance what you read online with peer and health professional guidance. This is one of the key reasons I decided to campaign: youth-led peer guidance and support is sadly absent in HIV advocacy today.
I was lucky to become undetectable within the first month of treatment. I know and respect that the journey other people take may be different or less blessed. It can take a long time for a viral load to become undetectable. Some may never achieve [+u], no matter how hard they strive to adhere to their medication and a professionally monitored, healthy lifestyle.
What does undetectable viral load mean to you?
Being undetectable isn’t a magic bullet and won’t stop me from getting other STI’s. Using a condom combined with my [+u] status is my best option to guarantee safe sexual encounters. The whole reason I came up with [+u] was to be able to negotiate safety whilst still having fun.
Initial findings from the PARTNER study show that the transmission risk could be 4% if the HIV positive partner on HIV treatment with undetectable viral load is the top and 1% if he’s the bottom.
The PARTNER study also announced that, of the 44,400 instances of condomless sex that occurred between HIV+ people on treatment and their negative partners, there were zero instances of transmission. To me this strongly supports other research worldwide that suggests HIV positive partners don’t transmit the disease to their negative partners.
Do you have any advice for people that might be reading this?
Get tested! Knowing is always better than not knowing. Make your health your main priority in life.
Take responsibility for your own sexual health. Don’t place your health and life at risk by trusting what someone else says. There are ways of protecting yourself while still having a good time.
To those who have HIV, like me: you are normal, you are loved, you matter and you are important. Together we can dust off the cobwebs of over 30 years of stigma. The daily new advances in HIV-related science and technology are extremely encouraging. We have so much more than just hope on our side.
Everyone is affected by HIV, whether [+u], positive, negative or unsure. You are never alone. Courageously ask questions and seek help.
Help us provide crucial services and support to Kiwis living with and affected by HIV.