Finding out that you are HIV positive is a scary thing. Finding out when you are at your sexual prime is even scarier.

I was 19 when the news of my status came to light. That was in 2008. Sick with TB and other opportunistic infections, bedridden and scared, I began to question the meaning of it all, what spaces I could now occupy, and what I could and could not do.

After initially vowing to never have sex, Phindile empowered herself through education to discover and embrace her sexuality following her HIV diagnosis. Credit: Mercedes Sayagues/IPS

Although the AIDS epidemic had raged through my country, South Africa, for more than a decade, I had only heard about HIV through hushed whispers at school. HIV was something that happened to the proverbial other. With my private school education, I was exempt of it. HIV was not a part of my history or of my future. HIV was not a possibility. But now, it was a reality.

I had been told that my parents had died of “respiratory infection”. It turned out that they had died from AIDS when I was young and I had been born with HIV. But my adoptive parents did not know this. I grew up sheltered from the reality of my parents’ and my own HIV-positive status.

I was a fairly well-behaved teenager, who was afforded the opportunities that most don’t have. Well before the HIV diagnosis, I understood the emotional implications of having sex.  For the wide-eyed, naïve romantic and wannabe writer I was, it only seemed right that I wait it out. I wanted the experience to be as amazing and life changing as possible. Love-making for the first time should be with someone I trust, love and respect.

After the shocking news, I wondered about the sexual encounters I might have had, had I decided not to wait; about the week spent with my peers enjoying sandy beaches and more alcohol than my teenage life had ever seen, at the end of my high school year; about how seriously awry things could have gone, and how I might have been responsible for other people’s pain and shame upon finding out they live with the virus.

Stuck in bed, left with my own thoughts and teenage ideas of  HIV, I resolved to never have sex, as long as I lived.

Although my adoptive mother got me the best medical treatment,  it was  emotional treatment that I needed most – someone to talk to about what being HIV-positive meant, beyond taking ARVs and CD4 counts, but that day never came.

Reading, learning and changing

It was only in my first year of university, with my first boyfriend, and the emotional and physical challenges this presented,  that I started to research, finding everything I could about my self-imposed chastity belt, my scarlet letter.

Through research papers and  articles online, I started to navigate the tricky line of my sexuality. Eventually, I realized  that I didn’t have to withhold from sex. I learned about safe sexual practices, to use a condom and keep my partner safe, although it took me a while to engage in any sort of sexual activity.

Had I not had access to the internet or the knowledge to decipher those articles, my life would have been spent in the baggy t-shirts and jeans that I wore to conceal my femininity when I found out about my HIV status.

After many years of  research, I have taught myself, like a baby learning to walk,  the limitations and opportunities available to me, and how, for this still  wide-eyed but a little less naïve young woman, loving and making love is  a real possibility.

Phindile Sithole-Spong is a red-lipped, wannabe yogi and sexual anthropologist living in Johannesburg, South Africa, where she splits her time between writing, cooking and running her company Rebranding HIV, an HIV consultancy company that applies branding strategies to HIV/AIDS.