Ufrieda Ho, Spotlight, and Leonora Mathe, Treatment Action Campaign
Saidy Brown shares how she used social media to speak openly about her HIV
Doctor Google terrified Saidy Brown. For Saidy, when she was diagnosed with HIV at the age of 14, all the online information sounded like a visitation from hell.
“I read that my teeth and my hair would fall out, and that I’d get a hump on my back. I was so scared, I went into denial,” says Saidy (22), who lives in Mafikeng in the North West Province.
She ignored the results of the random HIV-testing day that she attended as a representative for her school. Denial made her keep her status a secret, even as she continued to Google and the search results continued to freak her out. Eventually – about six months later – she told a teacher, who went with her to tell her aunt.
“I hadn’t been intimate with anyone; and that’s when we realised that I must have been born with HIV,” she says.
Saidy’s dad died when she was nine; her mom, a year later. Her two older siblings, who were tested later, were HIV-negative. “I was really angry, and I couldn’t relate to anyone. I resented my aunt and my siblings and my parents,” she says.
All the while she stayed silent, keeping the secret to just her immediate family. It wasn’t until she turned 18, when sores on her chest spread to her face and neck, that she knew she had to act.
“I was still blaming the sores on the heat, and I would buy umbrellas and shades and hide behind those; but I did know something wasn’t right, so I went to the clinic. They had my records from four years earlier, and the counsellor started to talk to me, and told me to stop believing all the stuff I had Googled about antiretrovirals.
“I said I’d only give six months of my life to the drugs. But it turned out I didn’t have any side effects, apart from some dizziness – but that was okay, because I took my tablets at night,” says Saidy, who’s on a fixed drug combination treatment.
Finding that peace and having the support of her family allowed Saidy to disclose her status; and that’s when she decided to take to Facebook. Her long post, pouring her heart out about everything she had been through over four years, was part of what she calls her personal journey.
And people supported her. There was no judgement, and she didn’t lose a single friend after posting her story. In fact, she’s gained more followers on social media.
But Saidy admits it hasn’t all been plain sailing with her relationships. When she was intimate with a partner for the first time, at 17, she used condoms, but she didn’t tell him her HIV status. She remembers being so in love, but being so scared that she was going to infect him.
Two years ago she was rejected by someone she cared for, who told her he couldn’t have a relationship with her because of her HIV-positive status.
“I won’t lie; it really broke me that he rejected me because of my status. But I think it made me stronger; because if that ever happens again, I think I will be able to handle it better,” she says now.
Today, Saidy says, she feels healthy and strong, and she continues her advocacy work around awareness and drug adherence. She’s part of a youth network for people living with HIV called SAY+, and she counsels other young people about testing, disclosing and managing relationships as an HIV-positive person. She’d like to work in communications one day, and practises by contributing to campaigns in which she shares her story with people – so that they don’t feel they have no-one to turn to, as she did when she was 14.
“I believe that disclosing your status means you’re halfway there. And these days, social media can help to connect you to many people. When you disclose, it’s a moment of accepting that things are what they are, and then you can start getting help,” she says.
Even with her courageous attitude, Saidy admits she still has fears about living with HIV. Fears of inadvertently infecting a partner, and fears that if she has a child one day, she may transmit HIV to her baby. Still, she tries to take her own advice at those emotionally low moments.
“I always let myself go with my emotions, whether I’m sad or angry, and then I remember that these feelings pass and things do get better, and things will be okay,” she says.