My name is Saidy Brown, I am a 23-year-old woman living with HIV.
I found out I was HIV positive when I was 14-years-old, and in Grade 10. It was around June (I can’t remember the exact date), but it was a few days prior to Youth Day, and my school – in Itsoseng in the North West – was invited to a Youth Day event. I was one of the learners chosen to represent my school.
At the event in the nearby town of Lichtenburg, an organisation delivered a presentation. They told us if we wanted to have HIV tests done, we should go through to a room at the back, where they were conducting the tests.
Like any other inquisitive teenager, I went! All for the sake of making memories. I wanted to go back home and tell my aunt that I had done an HIV test. Little did I know, I was about to hear news that would change my life forever.
I did not get any pre-test counselling. I don’t understand why not, maybe there were too many of us, I don’t know, but the lady did not give me any counselling before testing me.
All I had was a simple: “Hello, what is your name?”
“What are you going to do if you find out that you are HIV negative?”
“What are you going to do if you find out that you are HIV positive?” And that was it. There was no counselling, nothing!
She went to another room, came back after a few minutes, and said: “Saidy Brown, you are HIV positive,” and that was about it.
I was so confused! I could not understand how this woman, who knew absolutely nothing about me, could look me in the eye and tell me that I was HIV positive. I mean, I was 14. In my head, the only words that kept on ringing were “but I am only 14, what did I do? How? When? HOW?!”
I could not comprehend how I was ever going to be able to look at my family and friends, and tell them that I was HIV positive. I was only 14.
I totally avoided crying, because I knew if I cried in that room, everyone was going to know what was happening. So I composed myself, kept it all to myself, stood up, got out of that room, and carried on with my life, as if I had not just been told that I was HIV positive.
I went back home, and I fought to forget what had happened back in Lichtenburg, back in that room.
Within a week, I was barely coping. I had not told anyone, not even my aunt. A week or two later, I was in desperate need of something to occupy my mind. Something that would keep me busy when I was not at school. At school, I would always portray a happy face. After school, I would drown in my thoughts. So I joined a local drama club.
I do love drama, but in this case, I used it to escape my thoughts. I used my love for the arts to escape my reality.
For the next few months, life was easy. I would go to school, then drama rehearsals, then head home really late, do my school work, then go to bed. My new schedule meant I barely had time to think about HIV or Aids or death.
Around November though, reality started sinking in, because World Aids Day was approaching on the first of December. We were doing a lot of activities in the community, based on HIV/Aids, and every time we had to do those activities, it would kill me.
A few weeks into November, I forced myself to tell my previous maths teacher, Mam Mogatwe, about my HIV status. For the first time in six months, I actually cried about this. For the first time in six months, I could utter the words “I am HIV positive”.
She immediately suggested that we tell my aunt, and she went home with me to do just that. Tears were shed, and my aunt then said we should go to the nearby clinic the next day, to get a second opinion. She also told me that my parents had suffered and died from Aids-related illnesses. It was the first time I heard this about my parents. My aunt did not think I could possibly be living with the virus, so she didn’t see any reason to tell me.
By the time 2010 rolled around, I was preparing to start Grade 11. It was a new year, and I tried hard to forget everything that had happened in 2009. I pushed it to the back of my mind. I stopped thinking about HIV, and how my parents had passed on. I was just living my life in my own bubble. Besides, the drama group I loved so much had shut down, and “forgetting” my pain was now my only option. For three years, until 2013, this is how I lived. I suppressed the thoughts and fears.
Then, two years after matriculating, as an 18-year-old and a bit more grown-up, I started noticing sores around my chest and arms. I had pushed the thought of HIV so far from my mind that I didn’t even think it could be HIV that was causing all these sores. I blamed it on the heat, so I bought an umbrella, and continued with my life like nothing was happening. Then the sores started moving up to my neck and later into my face. I went to the clinic. At that point, I still didn’t imagine it was HIV. I just went because I hoped they could maybe give me an ointment or something to get rid of the sores.
When I got there, the nurses told me the reason I had all these sores was because my condition was deteriorating. My CD4 count at the time was 65. That was the moment reality slapped me in the face.
I had now started dating, so I had to tell the people I had been with, but I was avoiding questions such as, “why didn’t you say anything?” So, I lied and said I had only found out about my status that year. I led a lot of people into believing that I only found out at 18 that I was living with HIV. In a way, my story was believable, because only then was I honest about my feelings. It was only then that I went through all the emotions. It was only then that reality started sinking in.
A month or two after I started taking ARVs, I decided to make a public disclosure on Facebook. I had written many pieces because I refused to go for counselling. I could not talk to anyone about what was happening, so I wrote an open letter to HIV, which I posted on Facebook. This is how people started learning about my status and my journey.
A year later, in 2014, there were poetry sessions close to my home. I went there and I performed this open letter, and disclosed my status to my community. I was 19 years old at the time.
In 2015, I moved to Potchefstroom for school. When I got there, I heard about the local community radio station called Aganang FM. After some hard work, I secured a slot on the station and it allowed me to talk to young people about HIV/Aids. It was a very wonderful time in my life, because I had the chance to share my story with these people who did not really know me, but who trusted me enough to share their stories. I might not have had all things under control in my life, but once a week, I got the community talking about HIV. This was a rewarding moment for me.
In 2016, at the age of 21, I disclosed to the nation on TV, and in February 2017, I randomly posted a tweet that would soon change my life. I tweeted my HIV status for the first time. This is what I wrote:
“Yes, in the beginning, I might have thought that I was going to die, I never even expected to reach 23, but I have grown to realise that HIV is just a virus that lives in my blood, it can never break me!”
My family, friends and community have been loving and supportive. They make me feel like I can conquer anything I put my mind to.
These days, I talk about HIV – a lot. I do this because I know that it is a reality. We might not all be infected with the virus, but we are ALL affected. Everyone knows someone, who knows someone, who is living with HIV.
So, there’s no use pretending this is just something we see on TV or read about in magazines. I am doing it for all the Aids orphans, who are ashamed to talk about what happened to their parents. I am doing it for people who feel like prisoners in their own bodies. I am doing it for everyone who was disowned by their families and shunned by communities. I am doing it for people who are constantly being shamed for living with HIV. I am doing it for my late parents. I am doing it for 14-year-old Saidy Brown.
I believe that disclosure is very important as it destigmatises people living with HIV. It contributes to normalising people who take ARVs. It contributes to the HIV-free generation that we are all striving for, because if we can get to a point where we can stop sweeping HIV under the carpet, then people will become more informed and the new infections won’t increase as rapidly.
My story can help both HIV negative and positive people, because it could make HIV negative people realise it’s possible to live with HIV and HIV positive people could learn to love themselves and acknowledge the fact that we really are greater than HIV. DM
On 29 November 2018, Unicef will be launching the global statistical update on HIV/AIDS in Johannesburg.
Saidy Brown is an HIV activist, working with youth around the continent to dispel illusions and break the stigma around the virus.