Teenagers born with HIV tell of life under society’s radar.
HIV-positive youngsters who were infected before or at birth reveal their secret lives.
Clive was nine years old when he discovered he was HIV positive. The devastating news that his mother, doctors and support workers had spent years preparing to break to him in the gentlest manner possible, was blurted out by a careless receptionist at his local hospital.
“My mum had bought me to see the doctor because I had earache, and this woman just read it out loud from my notes as she was typing my details into the computer,” says Clive, who celebrated his 18th birthday last week. “I remember standing there, with my mother’s hand around mine, as these feelings of complete confusion and fear washed over me.”
Clive credits the medication given to his mother during her pregnancy for protecting him then from her HIV infection. But, he says, something went catastrophically wrong at the point of delivery, and the infection was passed into his own bloodstream.
After that day at the hospital, however, Clive refused to take medication on his own behalf. “I suddenly realised that the pills my mum had been giving me every day – that I had thought were sweeties – were medicine,” he says. “After that day at the hospital, I would lock myself in the bathroom when my mum took them out of the cupboard. Or I’d pretend to swallow them, then throw them away.”
Clive’s resistance to taking medication became more deep-rooted as he grew up. “The medication makes me feel sick – I was sick every time I took it from 10 to 13 years old. Other times, I just don’t want to remember that side of me. I want to be normal.”
He shrugs sheepishly. “The last time I stopped taking them was because I broke up with my girlfriend and I had other things on my mind.” Clive takes his pills sometimes, he says, but then stops for months at a time. “I know I’m killing myself,” he says truthfully, but with studied nonchalance. An exuberant teenager, full of life, he laughs at my shock. Pulling his homburg hat to a jaunty angle, he throws a caricatured “oh, poor me” puppy dog stare.
But there’s nothing funny about Clive’s attitude towards his HIV status. A decade of sporadic adherence to his drug regime has stunted the teenager’s growth. It has left him close to death three times, and caused him to develop resistance to a number of the drugs that could have almost guaranteed him a long and healthy life. “I was in hospital again in January,” he says, absently drumming a jazz riff on the table in front of him. “But my hospital visit before that was the worst: I got pneumonia after stopping taking my meds. My CD4 count [cells that help fight infection] was down so low that I was basically dead.”
There are around 1,200 children like Clive in the UK and Ireland: young people living with perinatally acquired HIV, contracted from their mother in the womb, at the point of delivery or shortly after birth, while being breastfed.