AIDSfree appeal: ‘No one else in my house knows I have HIV’
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A boy who was born with HIV has told how his diagnosis is a family secret and not even the siblings he lives with know that he has the virus.
The 17-year-old said he has always taken medication but was told it was normal. He did not question this until he was told the truth when he was 11.
The student from south London, who is using the pseudonym Sam, said it took three more years for the news to sink in and for him to begin to understand more about the infection. He said that, apart from his parents and grandparents, his family are in the dark.
“My family still struggle to talk about it at home, but my parents know that I’m well educated on HIV and if they want to talk about it then that’s OK,” he said. “But it’s still barely mentioned as no one else in my house knows about my HIV.”
The teenager was born with the infection after his mother was found to be HIV positive during pregnancy.
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When he was 14 he was contacted by the Children’s HIV Association (Chiva), an organisation that supports children and young people living with HIV.
The Elton John AIDS Foundation funds Chiva’s annual support camp in Kent, which allows around 100 people aged 11-16 living with HIV to come together for workshops, talks and activities.
Sam said: “When I was 14, I was really struggling to accept my HIV. I felt alone and depressed, and when I got to go to camp and be surrounded by loads of other people around my age living with HIV too, who knew exactly what I was going through, it was amazing.
“I didn’t have to explain myself to anyone. I didn’t have to live in fear of anyone finding out. I didn’t have to feel like I was lying to everyone. I could just be free to be myself.”
But he added that even though Chiva has helped him to beat “self-stigma” and made him feel more empowered, he still feels lonely.
“I think one of the hardest things is dealing with the feeling of loneliness that comes with having HIV and feeling as if you’re one of the only people with HIV in the world,” he said.
“Hearing the stigmatising things people would say at school, in lessons where we would be taught about HIV, and knowing that no one really knows much, made me feel even lonelier, because I couldn’t correct anyone. I couldn’t even correct the teachers. It’s just a very isolating thing.”
Sam said he is not open about being HIV positive because he is worried what people may think. “There have been times when I’ve told someone and they’ve said, ‘Can we still share drinks?’ or ‘Should I get tested, too?’ Times like that can be really upsetting because people are so uneducated,” he said.
“I’m also scared of people thinking I’ve been lying to them, when I would happily tell people if stigma wasn’t as bad. It’s terrifying telling people when you’ve spent most your life being told to not tell because of the various reasons why it could go wrong.”