For this year’s World Tuberculosis Day, ONE’s Cornelia Lluberes sat down with Kedibone Mdolo, a nurse and TB survivor.
Kedibone is an active member of the International Council of Nurses (ICN) and the Democratic Nurses Organisation of South Africa (DENOSA).
In autumn 2008, Kedibone contracted TB on the job – an experience that changed her life forever. Now a passionate advocate for TB, she works tirelessly to empower patients and practitioners to combat stigma and “beat TB together.”
You have such an amazing personal and professional story. What first inspired you to become a nurse?
[Laughter] I’m laughing because when that question comes, I have to give the honest answer. In the beginning, the only thing that made me want to become a nurse was the uniform! In South Africa at that time, nurses would wear this cute white shirt and dress, with a cap on top. So really, it was that cap and those shirts that first inspired me! But… after entering the profession, everything changed. During the first month of orientation, as we went around to hospitals and interacted with patients, I fell in love with nursing. That was when something just came inside of me and said, “I’m in the right place.” I knew then that I could have a positive impact on others.
In 2008, you contracted TB while on the job. What did that feel like?
At that time, I was working in a mobile clinic, in which our job was to conduct infection control around the city. Around October of that year, I had these abnormal flu-like symptoms. I went to the doctor for a consultation, and he treated my symptoms as the flu and gave me an antibiotic. But my cough persisted. I went back to the doctor a second time, and they again gave me antibiotics. But then nothing happened. By that time, I was getting really sick, just coughing and coughing. I was also very tired. So I returned a third time, and they conducted TB test and I was finally diagnosed. The treatment started in December.
So you went a full two months without treatment?
Yes. I still had to go to work during that time, because I only got 1-2 days of sick leave. By December, I was vomiting every day. Come January, I was moved to the hospital, where I remained for a month. I decided to stay at the private hospital; I couldn’t bring myself to go to the public hospital where I usually worked because of the stigma from my colleagues – I decided to isolate myself. I didn’t want to meet with other people. I didn’t want to believe that I had TB. It was the worst time of my life. You know how they call TB a “consumption disease”? Well, that is very true. It did consume me.
Why did you feel this need to isolate yourself? What was the reaction of your friends and family?
When I would look in the mirror, I would think, “This isn’t me.” I was so thin. And many in my family were just waiting to hear when I was going to pass on – they just gave up. But my mother was a very strong woman and took care of me at her home, while my husband came to visit. My husband and my mother were my two pillars. When I was sick, I didn’t want to talk, I was angry. But they were always there to say, “You can be angry, but you just have to fight the disease.” With their help, I managed to do that.
How did your experience shape how you treat TB patients now?
As a health care worker, I used to go to a patient and simply say, “Here are your pills and medications.” My experience taught me that this wasn’t the right approach. First, you need to help the patient psychologically, helping him or her to accept the condition. You tell them, “The disease is here, and you have a choice as an individual – do you want to beat this disease, or do you want the disease to beat you?” I’ve also learned that we as nurses must not label patients as difficult. At the moment of their diagnosis, patients really need us as health care workers. They need our support, understanding, and patience. I was so lucky to have my doctor, who was very patient with me. The second thing I have learned is the importance of family support. Our approach of curing a person must be patient-centered but also encompass the family. We must not only deal with the person who is infected. I wanted to talk, in a broader context, about TB in South Africa, which has the third largest TB burden in the world.
Why do you suspect the rate of TB is still so high in your country?
I believe the biggest issue is socioeconomic status. Most South Africans live in poor environments, where there are significant challenges related to proper housing and sanitation. Also, people are moving from rural areas to urban areas, so there’s congestion, over-population, and the transmission of disease among many people. In urban areas, for example, you often see homes where there are 8 people crowded into a single, unventilated room; if you have one infected person, 6 will definitely end up developing the infection. Issues of public health and housing are thus very important if we want to end the TB epidemic. I was surprised to learn that in South Africa, health care workers are three times more likely to contract TB than the general population and more than seven times more likely to contract drug-resistant TB.
What more do you think should be done to ensure we are better protecting our health workers?
As I’ve alluded, our financial situation and substandard infrastructure makes infection control difficult. In hospitals, the conditions are pathetic, I don’t know how else to say it. The way they’re built, the rooms are like prison cells…they’re no place to live. Without windows or ventilation, the issue of infection control is compromised. As another example, consider protective clothing. It’s not always a given that health care workers will have access to such protection, or that they’ll have time to sufficiently protect themselves in times of crisis. If you’re a health care worker, and you’re with someone who collapses, you’re not going to say, “Where is my mask? Where are my gloves?” The situation wants you to act then and now. The minute that you are looking for masks, gloves, or respirators, the patient may die. During the height of the Ebola crisis, health care workers rightfully received so much praise. President Obama said that they were doing “God’s work,” and TIME magazine named them their “Person of the Year.”
Like you said, nurses and doctors very often risk their lives, putting the needs of patients before their own. Do you think of nursing more as a job or a calling?
When you asked me what first inspired me to go into nursing, I said it was the uniform. But the profession is so personal and, to an extent, it has turned out to be a calling, in which the drive is the satisfaction of taking care of a sick person and then bringing him or her to health. When you enter the health profession, they say that “you are a nurse 24/7.” Your neighbours expect you to do things, even if you aren’t on duty. You are therefore always active, always caring. But as much as our hearts say “we want to volunteer,” it is also important for health care workers to be safe and protected.
One last question, in honour of World TB Day: amidst so many other priorities and global crises, why should policymakers prioritise funding for TB?
TB doesn’t choose who to infect or who not to infect. With other conditions, people have a choice to say “I can prevent this” – they can make proactive decisions to protect themselves. But with TB, it’s impossible to make that decision. In principle, you can eat a healthy diet and exercise, but because TB is airborne, despite all of your strategies, you can still contract it. I don’t believe that Washington ever believed that drug-resistant TB could be possible. But in the U.S., there are 100 cases every year. TB doesn’t choose. Do you want the number of cases in the U.S. to go 1,000? Do you want it to degenerate into an Ebola-like catastrophe? Going forward, if we don’t care about TB, especially drug-resistant TB, it will get to a dangerous stage where it will explode. We have to act now. We cannot wait any longer. TB, like Ebola, is indeed a living creature. It starts by crawling, then by walking. We have to stop it from running.