UK positive lad battles for awareness in cyberspace

A HIV campaigner tells Stephen Armstrong how he uses social networking and a personal website to put the record straight

“Shortly after I was diagnosed HIV positive, I broke up with my boyfriend – nothing to do with the diagnosis – and he plastered Facebook and Twitter saying I was sleeping with people and giving them HIV without telling them,” says Sam, otherwise known as @UKPositiveLad.

Being tech-savvy – he works in an IT department in Birmingham and he got his first laptop at the age of seven – he decided the best form of counter-attack was education.

“The clinic gave me a bunch of leaflets, but they were trying so hard to avoid stereotyping that all the examples they had were straight couples, older gay couples and single lesbians,’ he explains. “Young gay men like me are still the biggest growth area in HIV and there was nothing that related to my experience.” went online in 2011, and Sam was hugely active on Facebook and Twitter. He posts about his personal experiences, but also gives advice, helps promote campaigns from organisations such as NAT (National Aids Trust) and Terrence Higgins Trust, and keeps track of his own condition, recording his check-ups, viral load, CD4 count and how the physio keeps moaning at him for not doing enough exercise.

“It would be so much harder without social media,” he believes. “If someone e-mailed me trying to find a local GUM [genito-urinary medicine] clinic, it might sit at the bottom of my in box until I got round to replying. With Twitter, I get a push notification and can post a link from my phone immediately.”

He still gets plenty of e-mails – 20 to 30 a day – usually from kids in their teens worried about the symptoms and knowing nothing about the illness, and how they might catch it. “When I left school in 2003, sex education was pretty bad – two days about how hard it was to give birth,” he remembers. “You’d hope by 2012 things had improved, but not at all.”

Posting anonymously – Sam isn’t his real name – means people of all ages approach him. “I think they like to imagine me as the person they really want help from,” he says.

This year he started writing a column for Attitude, speaks at conferences and gets deep satisfaction from the help he can give. “To be honest,” he says thoughtfully, “I think my life had a lot less direction before the diagnosis.”