Bulele Ncanywa


In 2011, an estimated 5.6 million people were living with HIV in South Africa. Bulela found out about her mothers’ illness when she was critically sick. The strength that her mother showed to get through and take care of her family became the inspiration that Bulela needed to overcome her own health condition.

Bulela Ncanywa, 16, from Gugulethu was born in what is commonly known as a ‘squatter camp’. She lived with her parents and two siblings until the age of four in New Rest, ‘our living conditions were difficult, we lived in extreme poverty and my auntie took me in at a young age so that I could have a better life. My parents continued to visit me as often as they could.’

In her early years of primary school, Bulela noticed that her mother would visit less and less, ‘I couldn’t understand why and no one would tell me. But one day I overheard my auntie on the phone talking with my grandmother about how sick my mother was. This was a shock to me as the last time I saw her she looked fine and healthy, I couldn’t believe it.’

Bulela’s mother had gone to the Eastern Cape when she fell ill. ‘My mom looked so thin and frail when she was back, she soon became bedridden and I noticed that people were treating her differently. They were not giving her the emotional support she needed and would avoid to be in the same room as her, this broke my heart.’ It was at this time that Bulela’s mother revealed the reason for her illness, ‘she called me over to her bed and told me that she had HIV. I was so shocked; I remember I had so many questions. How she got it? Was she going to die? How would I look after my siblings if she did? I had no hope.’

‘At school I became very quiet because I was too overwhelmed with my mom’s situation. I was bullied badly, because I was so quiet. My friends took advantage of me, asking me to do things for them all the time and blaming me for their mistakes. They threatened me many times and I used to cry often.’ The bullying became so bad that Bulela had to move to a different school.

In the following years, Bulela’s mother started to get better ‘I noticed that she was gaining weight and she was able to support us even after my auntie moved away. I think she started to take treatment. We moved back to the squatter camp and after some time the government gave us an RDP house. Life was getting better, my mom found a job and we were all together again.’

Bulela’s mother continued to get stronger and was able to manage her illness well, however at the age of 11, Bulela started to develop health problems herself. ‘I was in grade 5 and I noticed a white blotch on my face. It appeared, disappeared and then came back on the other side of my face. It also spread to my hands. I didn’t know what it was and it affected my confidence negatively. I would shy away from answering in class and if I did have to stand up and speak I would run to the toilets and hide.’ Bulela struggled at school, ‘the toughest thing was people looking at me, treating me as if I was different. For two years, I felt frustrated and believed that I looked like an alien.’ In grade 7, Bulela was finally diagnosed with the condition called Vitiligo, this is an auto immune disease that affects a persons skin pigmentation. It is more noticeable in people of darker skin because their skin turns in white patches. ‘I was so relieved to find out what it was, I watched a documentary on the condition and this motivated me to go and start doing my own research on it. It was encouraging to find out that there are other people with the same condition and that I wasn’t the only one. I read many stories and this gave me hope. Also I discovered that it was something that could be managed through my diet and although I knew this would be challenging it gave me a way to take control of my body again.’ Bulela needed to change her life style drastically; her diet became restricted, as she could not eat many foods including dairy and red meat. ‘Coming from a family deep rooted in tradition and who loves meat, my new diet was difficult but I was determined to control my condition.’

Bulela recalls, ‘seeing the strength of my mother overcome her own health condition motivated and inspired me to take control of mine. Supportive friends also surrounded me and my primary school teacher taught me a valuable lesson that I still hold close to my heart today. She said, “do not care for what people say and just be yourself. Let your beauty come from the inside out”.

‘Everyday I look in the mirror I tell myself that I am beautiful. Even if my condition spreads and affects my whole body I will embrace myself and take each day as it comes. This gives me strength and I go to bed each night at peace with myself.’

During the interview, Bulela displayed a courage that is unusual for a person of her age. She embraces both her own and her mother’s medical conditions with a victorious mind. When asked what advice she would give to others she said, ‘do something positive for yourself every day. Give that moment to yourself because you deserve it.’

Bulela is a Leaders’ Quest participant, an intervention offered by Salesian Life Choices

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