Five years ago, on Christmas Eve, I was diagnosed with multidrug-resistant tuberculosis. I had to spend the festive season in isolation, away from my family and friends, to prevent them from contracting TB from me.
In addition to this, I had to wear a mask in public. People stared at me endlessly and questioned me about it. This experience of TB-related stigma changed my life.
In the eyes of many people, I was an unlikely candidate for tuberculosis: I was a doctor.
I was working at a state hospital in the Western Cape. The long hours I worked weakened my immune system and allowed tuberculosis to develop in my body.
I wore the mask to protect other people from getting infected, but I realised many people have false beliefs about tuberculosis. They would ask me: “What is wrong with you? Why did you get TB?”
When you have tuberculosis, it doesn’t matter who you are; the stigma and discrimination you experience is the same.
People don’t realise that TB is an airborne disease that anyone can get, even if you are young and healthy.
Multidrug-resistant TB is a form of tuberculosis for which many of the drugs used to treat ordinary tuberculosis don’t work. It is much more expensive and complex to deal with and a patient needs to be treated for up to two years instead of the six months for ordinary TB.
According to the World Health Organisation (WHO), only about half of multidrug-resistant TB patients around the world are cured. Four out of 10 die because they either haven’t completed their treatment or the drugs were ineffective.
I am one of the lucky ones who survived multidrug-resistant TB. But I didn’t escape the stigma.
The stigma has a negative effect on diagnosis and treatment. It often prevents people from seeking care early in the course of their disease, when they are more likely to be cured. Patients who start their treatment late are also less likely to complete their drug course. And some people infected with tuberculosis lose their jobs and their social support networks collapse.
According to the 2014 stigma index of the South African National Aids Council and Human Sciences Research Council, about 35% of people with tuberculosis experience external stigma such as being gossiped about, teased or insulted. People also experience internal stigma such as feelings of uncleanliness, guilt and shame.
The WHO’s 2015 global TB report says tuberculosis is the world’s leading cause of death from infectious disease and kills more people than HIV: every 25 seconds TB claims a life.
I wish everyone could understand what it feels like to have tuberculosis because it will increase support for people with TB and improve treatment outcomes so that fewer people die. I’ve learned that first-hand.
- Join the WHO’s Unmask Stigma Challenge and post a selfie with a surgical mask with the hashtag #UnmaskStigma on World TB Day, Thursday March 24. The campaign encourages people to show solidarity with people with tuberculosis. Go to unmaskstigma.org
Dalene von Delft is a medical doctor. She works for nonprofit organisation TB Proof, which was established by South African healthcare workers and students after their personal experiences with occupational tuberculosis, particularly multidrug-resistant TB.