Getting infected with HIV is not anyone’s wish and it’s probably the worst blow that life can deal you, especially if you’re young and dreaming about the best life ever. But experience shows that after about 30 years of HIV’s existence, there are few support systems for HIV-infected youths.
‘There’s nowhere that they can go. There’s insufficient attention that’s been paid to supporting HIV-positive young people. And it’s a problem compounded by the fact that their needs are largely unknown. So, it ends up being a very lonely place for young people’, says Saranne Meyersfeld, a researcher and programme developer for HIV interventions.
For Anonymous, who calls herself Katleho Letsoalo for this report’s purposes, finding out that she had HIV in March last year at age 22, was a complete shock.
‘I was just shocked with the information that I was positive that everything that the counselor said just went in one ear and went out the other’, she says.
Until today, Katleho has never disclosed her HIV status. Hence, she uses a pseudonym. Her reason for going underground is well-established.
‘Obviously, the reason that they are scared to disclose openly is because of the stigma, because of the rejection factors isolating them even further… the fear of rejection from their peers, their school mates’¦ from anything that they consider to be normal’, says Meyersfeld.
For Katleho, the counselling that she got before and after she tested wasn’t enough to after she had heard that she had the virus that causes AIDS.
‘A counselor is a counselor. It’s their job’¦ I just needed that motivation’¦ to see that person’¦ have an intimate conversation with a person who’s living with the virus and whom I can see that, ‘okay, this person is positive and they’re living their life and they’re not looking like they are about to die’. I just needed that. I just needed to internalise it, in a sense’, Katleho says.
Twenty-five year-old Sifundo Nkwanyana tested HIV-positive when she was 19. She agrees with Katleho.
‘Sometimes, it’s better off to actually hear it from somebody who is experiencing that thing. Once somebody tells you that ‘you’re going to live, you’re going to have a healthy life as long as you eat healthy, you exercise’¦ just be positive’, you kind of believe it. But coming from a person who is actually going through that, makes even more sense because you understand’¦ You see them. They are alive and they are happy, they are good, everything is fine with them. You get that sense of hope’¦ I can live longer. Look at this guy’¦ He’s been positive for so long and all that’, Sifundo adds.
She says had she heard such a personal testimony, she could have dealt better with her HIV diagnosis, which she initially hid away from people.
‘I needed motivation then and I needed more information on ‘HIV is not a death sentence’. I could have prevented the whole thing of me being in denial for four years. I know the time would have come when I had to be on medication, but I had to start medication because I had TB then, because I was so in denial until I got opportunistic infections and stuff like that. That’s when I had to sit down and deal with the fact that I was HIV-positive’, she says.
Both Sifundo and Katleho eventually found the motivation they desperately needed in a support group for HIV-positive students which was formed in 2008 at the University of Johannesburg, where they study.
‘It’s a voluntary group. We’ve created a space and environment whereby we can sit down and talk about our challenges as students living with HIV’, says Katleho about the group.
Joining the support group has completely changed the way Sifundo used to think about HIV.
‘I’m probably the tiniest person in the group, and then, I thought: ‘Oh, my Gosh! People would see that I’ve got HIV’. But, then, once I met other fellow students, I thought, ‘oh, okay’! Now we’ve got other people from out there who are mentoring us, people who are activists, people who are changing the whole face of HIV. It’s a good thing, actually. We’re meeting other people who were also probably diagnosed on campus and now they’re in the corporate world. So, we meet them… How do they cope?… Issues of disclosure, nutrition and everything else’, she says.
It’s crucial for young people to have support structures, says HIV researcher, Saranne Meyersfeld.
‘It is crucially important if they are available. And if only communities could actually get together and make concerted efforts to develop support groups and support systems. The benefits are enormous. The isolation that an HIV-positive adolescent or anybody else experiences is enormous. Just the fact that somebody knows and is there for you increases the person’s sense of well-being and, by definition, their health. If somebody’s supported, they are happier’, Meyersfeld says.