Growing up in South Africa I had always known about “a long illness” that kills young people at their prime when they should be living their dreams. I remember that on many weekends my parents would go to funerals. The interesting thing is that when I was really young my mom and dad would go to ‘old people’ funerals. They would tell me it would be a certain person’s gran or grandfather, but as time went on it started to change and people being buried started to get younger.
On their return from these funerals my mother and her friends would often discuss the person and a line I remember often being said is, “Cha ubesegulile bandla”. Loosely translated to: “No, they had been sick a while.”
From time to time “a long illness” would eventually get a new name and it would be Tuberculosis (TB). After hearing that a long illness is TB I then started to think that TB was an incurable disease that gives people a slow and painful death. I also remember that some of the people with ‘TB’ I used to see when I was younger were frail. I just didn’t understand why it mainly took young people. This fear was heightened when I heard that a cousin had been admitted to hospital with TB. I remember being told, not asked, by my mother to go to hospital to see the cousin.
We first stopped at the shops to buy apples, bananas and juice for her. I wondered how they were going to manage eating all that food as I had visions of a frail person on their deathbed, at least that is what I had known from seeing other people with a ‘long illness’ that becomes TB.
When we arrived in hospital I realised that hardly anything had changed about my cousin. She was chatting to us as she normally would and told us that she had been given TB medication to take for 6 months, which she did. That day I left the hospital confused because my cousin had TB, but clearly her TB was different from ‘a long illness’ other South Africans get. As a child I just didn’t get it, but that day was the day I started understanding the difference between TB and ‘a long illness’. It was also the day I concluded in my head that a ‘long illness’ must be AIDS then, which my cousin clearly didn’t have. That day I also realised that many people are clearly ashamed to tell others that their loved ones are HIV positive or have full blown AIDS and as a result they settle for the term, ‘a long illness’.
When I was nine-years-old my forward thinking father spoke to me about HIV which we also learnt about at the private primary school I was attending at the time. My mother would often not be a part of these conversations, but she would overhear them and protest without saying many words. All I remember is that she would say: “You guys talk too much, go to bed.” She may have thought I was too young at the time to be discussing sex, but I knew what sex is and had seen condoms, used and unused, even though I wasn’t quite sure how they work in protecting one.
As I got older a friend would tell me about the ‘youth disease’ he would be discussing with his grandmother. I realised that ‘a long illness’ had a different name in his family. It was the same thing and he said when they asked their grandmother what it was, she would say questions should not be asked and all they needed to know was that it was the ‘youth disease’.
Last year I attended a lecture given by South African Health Minister, Dr Aaron Motsoaledi, at the Tshwane University of Technology (TUT) in Pretoria West where he said he believes every TB case should be treated as HIV or AIDS related until proven otherwise. Motsoaledi says the problem is that South Africa only has 7% of the world’s population, but 17% of HIV cases are in South Africa. The United Nations estimates that a massive 5,6 million South Africans are HIV positive – a figure higher than that of any other country in the world.
AIDS was first identified in people 30 years ago and yet in South Africa we still talk about ‘a long illness’ that is killing people. Even some high profile people are dying of a ‘long illness’ and I am by no means saying their ‘long illness’ is the same one named by Motsoaledi but in order for the living to protect themselves against a ‘long illness’ the families of the deceased need to discuss it openly – they owe it to society so we can start reversing negative trends of whichever ‘long illness’ kills their loved ones.