Simphiwe is from Pietermaritzburg in the province of KwaZulu-Natal in South Africa. He was invited to attend the Faith Leaders TB Summit in Durban to share his story of surviving multidrug-resistant tuberculosis (MDR-TB). He is 23 years old.
“It felt important to come here and tell my story,” he says. “People listen to the reverends, so if they pass on my story, it might help others.
I contracted MDR-TB in 2015. I was 22 and still at school. I was put on treatment and hospitalised for three months.
I was on medication for nine months in total. The treatment is normally 18 months or more. But the shorter treatment means you have to take more drugs so that you can finish more quickly. For me, that meant injections and 18 pills every day. When they released me from hospital, I had to visit the clinic every day to get the injections. You can’t do those yourself.
Going to school was impossible – I had to drop out. There is no way you can study while taking the drugs because of the side effects – nausea, diarrhoea, exhaustion. My life was about taking medicine – there was no time or energy for anything else.
After I was discharged from hospital, I continued taking the treatment for six months which included four months of injections. It was harsh. If you do not take the treatment, you feel fine! That is so dangerous and that is why people often stop the treatment because, to them, the effects of the drugs are worse than the disease.
My little sister was just 13 years old when she contracted MDR-TB. I had a responsibility to her to carry on because if I dropped out, she might think it was ok to drop out too. I was the big brother, I had to motivate her. My sister did not manage to come through and died. I knew that if I stopped taking the medicines, I would die too.
The doctors were always on my case, they would come to my house, check I was taking my drugs. Even now they are always coming round or I go to them. I know them better than my family! They are determined that the MDR-TB will not come back.
I lost a year of school. But I am now training to be an electrician – I am an apprentice. I feel very positive about my life. To see people die in front of you, it makes you think. I know many people who have died from MDR-TB, close friends, my age.
My advice is do not stop taking the drugs, keep going no matter what. Have faith that you will get better. It does not have to be the end of the world if you have TB. TB does not have to mean that you will die. You can survive. Take your medication every day, do not drink, do not smoke, be as healthy as you can. Follow the instructions from your doctors even if it feels like the hardest thing to do. This is my recipe to survive MDR-TB.
I am well now. I finished my treatment in October 2015. I have come through the other side.