Happy to discuss his status as co-infected with HIV and TB with strangers, the one thing that 18-year old Vijayakumar would not risk was people he knew finding out. When a close family friend, someone he referred to as ‘Uncle’ happened to walk past our meeting place, just as we were about to begin, and joined the conversation, we talked about Vijayakumar and his life, whispered conversation taking place when the Uncle was out of earshot as we walked. It was only as we sat in a half-built church in Virudhunagar District, away from the road, waiting for the Uncle to get coconuts and after the elder man left that he could open up.
While his Uncle sat with us, Vijayakumar talked about his first year at university where he is studying for a BA in Tamil Literature, with hopes of taking the highly competitive Tamil Nadu Public Commission Service exam after graduation and getting a job with the state government. From a scheduled caste family, his father is a fruit seller, his mother a cattle herder. He, his elder brother and sister have aimed high. His elder brother is now a civil engineer and his sister is training to be a teacher. His family are also the only four people that know of his current TB positive status, aside from his Directly Observed Short (DOTS) Course Monitor and the Rainbow TB Forum members who assist him.
At the age of eight Vijayakumar learnt that he was HIV positive but for the next ten years his CD4 count was high enough that he only needed pre-Anti-Retroviral Treatment (ART). That changed at the beginning of this year and since January he has been on ARTs. January was also the month that he got his sputum test results back and learnt that he had TB, again. In 2007, he had faced the same problem: a TB positive sputum test and the six month treatment course. Nearly ten years ago when his sputum test after treatment came back negative he thought that was it, he was classified as completed and cured.
His fight with TB should have been over but when his father noticed him losing weight and having fevers he turned to patient advocate Rajamuniyammal. Vijayakumar’s father was well aware of the risks of HIV/TB co-infection, being HIV+ himself. Knowing Rajamuniyammal and her involvement with health issues, Vijayakumar’s father asked her advice. Rajamuniyammal came to Vijayakumar and helped him first to get his CD4 count checked and then to get tested for TB. Neither test result was good.
Although the TB medicine makes him nauseous and dizzy, he makes every effort to hide his co-infected status from everyone around him, not an easy task as he needs to take both ARTs and TB medication at regular intervals. He also has to be very careful of his diet, ensuring that he gets enough of the right food to sustain himself through the treatment which consists of pills and injections while trying not to stand out.
The only place he doesn’t face stigma is the treatment centre, he is one of the lucky ones. He is treated at the primary health care centre for his injections and has a village health care nurse who provides him with pills. Rajamuniyammal calls to make sure he remembers that he is due for more before he runs out and also supports him emotionally. She visits every couple of weeks to make sure he is doing okay.
Vijayakumar knew the injections were for TB treatment, but when asked why he was receiving both injections and pills, he was unable to produce an answer. We asked if he had Multi-Drug Resistant TB, he did not know; he had never asked. It seemed that stigma is so high that for some patients the word “tuberculosis” is enough, no more questions asked. Just take the drugs, wait for it to go away and try and return to a normal life.
Although for Vijayakumar he will never truly be able to step out of the shadows, even when his fight for TB ends there is still the burden of being HIV positive in an unforgiving society.