For thousands of patients quarantined for up to a year with multidrug-resistant or extensively drug-resistant tuberculosis (MDR-TB and XDR-TB), the Easter holiday period only reinforces their loneliness.
Last December, patients in Gauteng and the Eastern Cape broke out of TB hospitals to be with their families during the festive season. At Fort Grey hospital in East London, 49 patients escaped, while patients at Sizwe Tropical Disease Medical Hospital in Johannesburg toyi-toyied and blocked the entrance to the hospital, demanding to be discharged. This led to a guard being stabbed and a patient shot.
At least 21 drug-resistant TB patients who ran away from a Port Elizabeth hospital last week returned on the weekend, Eastern Cape health spokesperson Sizwe Kupelo said on Monday. Last Thursday, 33 patients forced their way out of the Jose Pearson Hospital.
The Department of Health has been trying to improve living conditions to alleviate the patients’ boredom and frustration. It has delivered TV sets, sewing machines, pool tables and sports equipment to hospitals, but for patients who have been isolated from their families for months, this is little comfort.
Nobubele Mathenjwa (36), from Ladysmith in KwaZulu-Natal, was diagnosed with MDR-TB in 2005 and quarantined against her will for almost a year at King George V Hospital. “After under going TB treatment for six weeks with no results, I went to see another doctor. He ran tests on me and I was admitted to hospital. They did not explain that I had MDR-TB.”
Mathenjwa was quarantined just a month after she gave birth to her son. “When I started getting sick and had to be quarantined, my relationship with my husband deteriorated. I was dead to him.” She struggles to conceal her pain when she recalls her stay at the hospital. “Random people used to come into my room all the time. There was a big red sign that warned people to keep away or wear protective gear when coming in. I became a mystery and a spectacle.”
She says family support is key to helping quarantined patients heal. “Without my mother’s support I would have lost hope. She used to bring my son sometimes,” she says, her voice dropping as she fights back the tears. She was allowed to see her son only in the doorway, without physical contact.
Patrick Dladla*, an MDR-TB patient at Sizwe Tropical Disease Medical Hospital in Sandringham, says he thought he was going to the hospital to be tested, but found himself “imprisoned” for the past five months.
“As you can see I am fine, I can walk, I have energy. I do not have any symptoms. It makes it difficult to be stuck here for months with nothing to do other than sleep and take medication.”
The hospital is isolated by tall eucalyptus trees, where vervet monkeys play freely. The patients watch them and envy their freedom. “I feel like a prisoner in here, but prisoners are better off than us — at least they know when they will get out. We never know when we will be released. So we sit waiting, longingly every day,” says Dladla.
His wife, Thobekile Dube* (28), says life became more difficult when her husband was quarantined. “I cried every day. I was so scared he was going to die.” With no family or friends living in Jo’burg, Dube had no one to turn to.
Dladla agrees. “It’s very difficult. Being here does not help us heal; I think it makes us worse. We have no motivation. We just sit here all day staring at the gate,” he says. “I live in my head. I’m always thinking about my life, that I should be out there helping with rent and raising my kids.”
He walks to the gate where six guards stand watch. “When I look at these gates, my spirit breaks. I understand why some people escape and give up on their healing,” he says, holding his wife’s hand and trying to maintain a brave face. “Thank you for coming to see me. I wasn’t sure I would see anyone today. Thank you for coming!”
* Not their real names