This is how Dr Zolelwa Sifumba – who was diagnosed with Multidrug Resistant Tuberculosis Lymphadenitis (MDR TB) – described her struggle with the disease during a keynote address at UKZN to commemorate World TB Day.
The event was organised by the UKZN branch of the South African Medical Students Association (SAMSA) with the message of the day being: Every Breath Counts – Stop TB Now.
Media and Publicity Officer of UKZN’s SAMSA, Ms Amanda Mlambo said: ‘The aim of the event was to help raise awareness about TB and more importantly fight the stigma associated with the illness. A lot of our students have heard and read about the disease in textbooks but it’s not often that you hear the perspective of someone who has experienced all there is to TB – the treatment, the anxiety and stigma/discrimination that comes with it.
‘So we partnered with Sifumba who spoke in depth about her experiences. We thought it was important for her to share her story and thus enlighten all of us about how we contribute to the mistreatment of people with TB and how we can stop doing that.’
Sifumba was a Medical student at the University of Cape Town when she contracted TB while doing clinical rotations in hospitals. ‘Going through treatment was a nightmare. I had side effects daily – nausea and vomiting, diarrhoea and insomnia, as well as a darkness that came over me, a deep depression, which is a known side effect of treatment,’ she said.
‘I had to endure 21 pills a day for 18 months and six months of daily injections that left my buttocks black and blue and me in constant pain. Added to that was the constant fear of losing my hearing, becoming psychotic or the failure of my kidneys or liver. I went through daily suffering from isolation and minimal support from loved ones, confusion of whether I would return to Medicine as a career, side effects of treatment and the prospect of my life ending at the age of 22 from an ancient illness that I’d contracted the disease from being exposed to it in the career path that I’d chosen. It was hell – a daily dose of it,’ said Sifumba.
Sifumba, who regards herself as an occupational MDR TB survivor and activist, spends much of her time educating people about the effects of TB, especially health workers, many of whom feel they are not at risk of contracting TB. ‘It is an airborne disease. We can all get it. A lot of healthcare workers get TB but a lot of them are quiet about it.
‘Stigma associated with TB is a long-standing issue and can result in people not wanting to be seen walking into a clearly labeled TB clinic to see a doctor. Loneliness and despair can convince sufferers that health doesn’t matter and there’s no need to take the pills. Stigma also silences people so they never organise, influence funding, or change perceptions about TB. Essentially, stigma means more stigma.
‘Unmask the stigma now and get the treatment you need. Be supportive of those living with TB and let’s contribute to a TB free world,’ said Sifumba.
Words: MaryAnn Francis