Patient Story: In Swaziland, "People are scared of me"

Nikiwe, 30 years old, was diagnosed in early 2009 with drug-resistant tuberculosis (TB). Here, he talks about the daily struggle of being infected and the shame he feels living with his illness in a fearful community.

"My name is Nikiwe Mahlaba. I’m 30 years old and I live in Thunzini in Shiselweni region in the Kingdom of Swaziland. I am a single parent with two children and I live in a one bedroom house with the rest of my family. We are six altogether, including my two brothers and my mother. She is the breadwinner and the pension she receives supports us. In three months she earns 600 Emalangeni (US$80).

The first time I had TB was in 2002. I was coughing profusely and sweating at night. I lost weight and felt very weak for a whole month. I went to the Lavumisa Clinic, and they gave me some common cold medication. There wasn’t any improvement.

I went to Matsanjeni Hospital to have an X-ray and was diagnosed with TB. I started treatment in February that same year. I took oral medication for six full months and eventually I was cured.

Then in 2006, I had a relapse. I was given streptomycin injections for two months and tablets for a whole year. I started treatment at the Manzini TB center. I had to stop working during the entire treatment period and only went back in July 2007.

In August 2008, I had to stop working again due to a never-ending cough. I thought I had the flu and I hoped the cough would cease, but it didn’t. I moved from clinic to clinic for treatment, and my health was deteriorating.

"It was a huge blow for me to stop working and it’s not so easy to make ends meet. I have children to support, I feel like a pathetic loser to depend on my mother in her old age."

—Nikiwe Mahlaba

It was a huge blow for me to stop working and it’s not so easy to make ends meet. I have children to support. I feel like a pathetic loser to depend on my mother in her old age. She is feeding me and my children. She has been my pillar of strength.

In January of this year, I went to the outpatient department at Matsanjeni Hospital. They referred me to the TB section and they discovered I had TB again. Some additional tests showed that I had drug-resistant TB. I then started a new treatment, with injections and oral medication with a larger number of pills than before.

I’m supposed to take these injections for nine months. So far, I’ve only been injected for four months and the pain is unbearable. I really wish there were tablets to substitute the painful injection. I get so worried when I see other patients who are also receiving the same injection, going deaf due to the side effects. It makes me wonder what will happen to me in the long run.

It’s a terrible dilemma—it’s true there are side effects with this TB treatment, but what is better? To go deaf because of the treatment or die because of no treatment at all? I’m sure most people would choose to live.

People are scared of me; they don’t talk to me because of my drug-resistant TB, and it makes me feel terrible and so lonely. For instance, in Lavumisa, where Doctors Without Borders/Médecins Sans Frontières (MSF) rented a one-room flat for me, one of the tenants went to the landlady and told her I have a dangerous TB which is not curable and that something must be done about me. He spread the news to the rest of the tenants. They started avoiding me and I felt like dirt.

TB is curable if you take injections and tablets and do not skip medication unless the doctor says so. I have seen some TB patients who were hopeless and thought they would succumb to death when they began their TB treatment—some came in wheel chairs—but now their health has improved tremendously."