"People would laugh at me." The stigma of having tuberculosis

Published: 24 March 2016 10:00 CET

Tuberculosis (TB) is a disease caused by bacteria that are spread from person to person through the air. TB usually affects the lungs, but it can also affect other parts of the body, such as the brain, the kidneys, or the spine. In most cases, TB is treatable and curable, however, death can occur if people do not get proper treatment. Multidrug-resistant TB (MDR TB) is caused by an organism that is resistant to at least two of the most potent TB drugs used in treatment.

South Africa has one of the highest rates of TB in the world, with 68,000 reported cases in 2014 (World Health Organization). Since 2007, the South African Red Cross Society has been implementing an integrated HIV and TB programme which aims to raise awareness about the disease, promote prevention, reduce stigma and discrimination among sufferers, and provide treatment and care to those in need.

Siphokazi Kosopi, 24, lives in Port Elizabeth, Eastern Cape Province in South Africa. She is six months pregnant with her first child. Three years ago, she became seriously ill and was diagnosed with tuberculosis. During a recent screening of a MDR-TB documentary, Siphokazi talked about the emotional trauma she suffered when stigmatized by her own community.

This is her story.


In 2013 while I was working at a fast food restaurant, I started getting tired a lot and losing a lot of weight. I would also sweat at night and had a slight cough. I told my parents and they suggested I go to the clinic where I had to cough, and was later told I had normal tuberculosis (TB). Within two months of taking my treatment, I became even more sick. I was vomiting and continued to lose a lot of weight. It was then that I was admitted to Livingstone Hospital in Port Elizabeth, Eastern Cape Province.

While there, I kept on getting worse and would see people dying in front of me and that made me scared. After two months, I was moved to an isolated room. I did not understand why I had to be isolated from other people. When I asked the nurses, I was told I had a stomach bug and since my stomach was running they did not want me to infect others, or to use the same toilet as other patients. My room door was always closed and when someone would enter, they would have a mask, gloves and an apron. I was scared, felt like I was in prison, and wondered what was wrong with me. During meal times, my food was placed on the trolley right by the door. As weak as I was, I had to get up and bring the food closer to eat.

One day they did an operation to insert a drain inside me. I could no longer walk as my feet were painful, as was the drain. My mother would be the one to clean my room and change my bed linen and clean my wound.

After six months of me being in hospital, I was informed that I was being discharged and taken to Jose Pearson TB Hospital. It was at this hospital where I was informed that I had multi-drug-resistant tuberculosis (MDR-TB).

While in Jose Pearson, I had another drain inserted and felt like I wanted to die. It was so painful. After five months I was discharged home. It felt good to be home though my community treated me differently. People would laugh and look at me as if I was the first person to be sick, and I felt so embarrassed and ashamed when I needed to walk past them when going to the clinic.

The clinic nurse was very nice and friendly and helped me to understand a little about MDR-TB. I had a Red Cross care giver who started visiting me and she educated my family and me on MDR-TB, the pills, the side effects, about eating right and being on a healthy diet, and how to make sure I did not infect others. She would plead with me to stay on my treatment when I was feeling extremely down. When both my parents lost their jobs, the care giver started giving me food parcels and hygiene parcels which were very helpful.

What I would like to say to anyone who is going through the same situation, don’t lose hope, stay positive, listen to what they are saying to you at the clinic, and take your treatment. Although it will not be easy, if you do as such, you will see the results and have a smile like mine today.

Today as I am talking to you, I am discharged from treatment.