‘How I started online support group to cope with the shock’

WHEN Pholokgolo Ramothwala first tested positive for HIV, he did not believe it.

“You don’t forget about it. I still replay the experience,” he said. “I still remember the colours of the consulting room and who was sitting where. It’s a mental picture you cannot remove.”

The Stellenbosch University student took two more tests before he finally accepted his positive status.

He sought out a support group in Cape Town but was horrified by how sick the other people looked.

“I walked in and I saw those guys and I said, ‘Hell no. I’m not sick and these guys look sick’,” Ramothwala said.

He did not give up, however, and eventually changed his attitude to the chronic illness. “The more I met people the more I realised I’m not going to die now.”

Ramothwala is now one of the 17.8 percent of people estimated by the Department of Health to be living with HIV.

He is not the first adolescent to struggle psychologically in coping with the disease and he will not be the last.

“If there’s one thing I’ve learned from HIV, it’s that you need support,” Ramothwala said.

He started an online support group in 2010 called Positive Connection Network.

“I have my own (media) business. This is supposed to be a hobby but now it’s becoming a full-time job,” he said.

As the director of Positive Connection Network, Ramothwala works a lot with young people who are struggling psycholog- ically to cope with their HIV-positive status. He acts as a counsellor and connector, bringing together groups of HIV-positive people to help each other with the problems that doctors can’t.

During adolescence, dealing with other developmental challenges can mean psychological struggles for many HIV-positive teens. Nataly Woollett, the technical head of counselling and prevention at the Wits Reproductive Health and HIV Institute, said caregivers and clinicians were often not equipped to recognise depressive symptoms in teenagers dealing with HIV.

“It’s normal for kids to show depressive symptoms. There is often a mix-up between depression, which is a mental health disorder, and traumatic bereavement, which is much different,” she said.

Woollett said it was important for clinicians, teachers and parents to recognise these symptoms because suicide was the secondleading cause of death for adolescents in the world.

“An adolescent that’s having a hard time doesn’t always look like maybe a young kid who’s having a hard time. They put up an attitude,” she said.

This attitude, typical of many teenagers, may cause adults to think there was no problem.

Some warning signs, Woollett said, were defaulting on treatment and rejecting adults.

Unfortunately, psychologically and medically, HIV-positive adolescents struggle to find the support they need.

“We don’t have sufficiently developed clinical care for adolescents,” said Ashraf Coovadia, a paediatric consultant at Rahima Moosa Mother and Child Hospital.

Children were treated in paediatric clinics until adulthood, but few clinics had developed sufficient skills to deal with adolescents, he said.

Less-developed immune systems in adolescents cannot battle the viral load as well as adults, making lifelong treatment a necessity for children and teens.

Ramothwala will attest to the fact that after a while, people just get tired of taking treatment.

Especially around adolescence, this may cause major adherence problems.

“And it becomes quite stressful because there are only three regimens that anyone who is HIV positive can have in this country,” Woollett said. “So if you fail your first regimen, you’re starting to run out of options.”

Ramothwala said: “I had a guy phone me and he said, ‘I just found out that I am HIV positive, I’m going to kill myself,’ and he hung up. I have not heard from him since. He might be dead now, I don’t know. That was in 2001. I’ll never forget that phone call.”