How I Lost My Brother to the Stigma Surrounding HIV/AIDS in South Africa
HIV is not a death sentence, stigma is.
Itumeleng Letsoalo is a Global Citizen Fellow and content writer in South Africa. Here, she shares her experience of losing her brother, who was HIV+, and why it’s so important to combat stigma around the virus as part of the global effort to end the epidemic of HIV/AIDS by 2030.
For some reason, nobody wants to say HIV/AIDS in South Africa. Instead, we refer to Zet 3, to amagama amathathu (meaning “the three letters”); we call it “the three ships”, or say that the person diagnosed has “stepped on a cable”, among other common euphemisms for the virus.
While some argue that these euphemisms make light of a heavy subject, it’s quite evident that it really stems from the shame that we still attach to HIV/AIDS.
In South Africa, World Aids Day was first launched in 1996 to help raise awareness about HIV/AIDS. The virus was sweeping the world and it was a terrifying time due to lack of information about HIV, the virus that causes AIDS, and the disease itself.
The day — held annually on Dec. 1 — is now more celebratory of the great strides that have been made in combating the virus; like the fact that, between 2005 and 2009, only 5% of people living with HIV died from causes linked to AIDS — down from 78% of people between 1988 and 1995.
But it is also dedicated to commemorating those who have lost their lives to HIV and AIDS related illnesses.
My older brother is one of these people.
He and I are the third and last of my mother’s four children. And so naturally, we were very close.
His favourite story to tell when making fun of me was how 3-year-old Itumeleng would wake him up in the middle of the night asking for bread (he made the best steamed bread). We lived together with my grandmother in Lesotho between 1996 and 2002, so he was really responsible for taking care of me.
Little did we know that, even later in life, we would be left in each other’s care.
After my mother’s death in 2009 (I was 13 at the time and we had moved to South Africa), my brother became my unofficial guardian.
He didn’t have a stable job, yet he managed to put food on the table and make sure that I went to school everyday, without fail.
In 2010, South Africa was hosting the FIFA World Cup, and I remember for me it meant that the winter school holidays were extended, giving me more mornings of tea and fat cakes with my brother.
We saw the cold winter through and, just as the year was ending, my brother started feeling sick. But life went on because we thought it was just a cold.
But his bad health persisted into the new year, eventually causing concern among my other siblings and relatives.
My sister, the eldest of my mother’s children, sent money for my brother to see a doctor and he came back telling us that he had been diagnosed with pneumonia.
Now, as many South Africans know, pneumonia and tuberculosis (TB) are often code for HIV/AIDs because of the stigma attached to the virus.
It was hard for me and my family to tell why the treatment was not working for my brother, but we had no reason to doubt what my brother had told us. Until his health deteriorated drastically.
I was now struggling to balance my home and school life, because of the big responsibility I had of taking care of my brother. This is when it was decided that he go back to Lesotho, where he was eventually hospitalised.
Even though he was in such a bad state of health, he still refused to have any tests done to reveal what was really wrong with him. I believe that he was worried about how my family would react if they knew the truth.
So the doctors were faced with the awkward situation of trying to keep a patient alive, without fully knowing what was wrong with him.
It was only when he was then diagnosed with meningitis that he gave in, had the tests, and it was confirmed that he was living with HIV.
However, it was unfortunately too late. Just two weeks after finding out that my brother had HIV, and that it had now caused AIDS and other illnesses, as mentioned above, he died.
I lost my brother in September 2011, and while eight years have gone by, I cannot shake off that anger.
One of the key messages in global efforts to tackle and end the epidemic of HIV/AIDS is that early detection saves lives.
In fact, the World Health Organisation (WHO) advises that starting treatment as soon as you find out that you are HIV+ can help you stay healthy and enjoy a normal life.
HIV didn’t kill my brother, he died because he didn’t want to live with the virus. It was only after his death that we learnt the full story of what had happened.
My brother had received a call earlier in 2011 from his girlfriend, to tell him that they were expecting a baby.
Because pregnant women are required to get tested for HIV, however, the beautiful news was coupled with the realisation that she was HIV+.
My brother then put two and two together, and he was scared to death that he was living with the virus too.
I often find myself cursing at society for creating this fear. Why was it easier for him to tell us he had pneumonia than telling us he had HIV?
Despite efforts to educate people in South Africa about what’s needed to tackle HIV/AIDS through a number of campaigns, and the school curriculum, most people’s understanding of the virus is still very poor.
With the introduction of effective ways to prevent the virus spreading and improved treatments for it, it’s absurd that we are now being held back by our own attitudes.
Too often, when someone is diagnosed with HIV we still use that diagnosis to judge them, to assume their sexual history, and this all contributes to the overwhelming fear of having to disclose one’s status.
The thought of my brother going through all that pain and shame silently and facing death all alone still terrifies me.
Family is supposed to be a source of support and the one place where one can be vulnerable without shame.
We should be able to speak openly about HIV diagnosis, about treatment and prevention, in order to address the stigma surrounding the virus that, ultimately, cost my brother his life.
How many more friends and family members must we lose before we act right, and change our attitudes so that living with HIV, getting diagnosed, and getting the right treatment, is no longer seen as a source of shame?
If you're living in South Africa, you can find further resources for support with diagnosis, treatment, and prevention of HIV/AIDS here.