Ms. R. Panchavarnam, 27 years old, greeted us with a bright smile outside her home in the small Tamil village, Maruooluthu. She led us inside, her tiny frame sliding easily through the small doorway as I ducked and maneuvered to enter the cramped space. We emerged into a multi-purpose bedroom-kitchen area where Panchavarnam, our gracious hostess, insisted we occupy the available seating – a metal frame adorned with a thin plastic mat that also happened to serve as her bed. Only after we declined her third and fourth offer of food and a cold beverage, did the young women hurry out of the house to find her brother, Radhakrishnan, to join us for the interview.

Accompanying me were Rajamuniyammal (the local community organiser for our TB programme) and Jeyachandran (the district organiser). Panchavarnam was briefed in advance on the purpose of my visit: told I was conducting interviews to gauge the impact of stigma and discrimination on the lives of TB patients. She agreed to share her story with me and allowed to me to take photos and videos. I had been briefly prepped on Panchavarnam’s history too. The rest of the details I learned while sitting on the floor of the tiny household, rubbing elbows with Jeyachandran, Rajamuniyammal, Panchavarnam, and Radhakrishnan.

I asked Panchavaram questions. Jeyachandran translated.

After several weeks of incessant coughing and wheezing, Radhakrishnan referred his sister to Rajamuniyammal, the local community organiser. She tested positive for TB and visited the hospital to begin treatment the following day.  The swift detection and testing speaks volumes about India’s progress in TB awareness and treatment availability – even in a relatively isolated village like Maruooluthu. However, the treatment is intensive and means that Panchavarnam can no longer work.  With no husband, her brother has taken responsibility for her well-being. Radhakrishnan is burdened with responsibility, providing for his sister, wife and two children, and helping his mother who, at 65, is still in the workforce.

Radhakrishnan’s wife is approaching her breaking point however, insisting that his time and resources be dedicated to her and their children. He has made many sacrifices for his sister and is desperate for help.  Just that day, for example, Radhakrishnan had to leave work to bring Panchavarnam to the hospital.  The side effects of her treatment medication were becoming more severe; over the past ten days she experienced increased nausea, vomiting and fatigue.

Panchavarnam is quite fortunate compared to others.  Her friends, family, and village have been supportive and news of her diagnosis has not affected her day-to-day life – aside from the trips to the treatment centre.  Jeyachandran explained to me that in other villages a TB diagnosis must be kept extremely private. Patients share the news only with their closest family, if anyone at all.  His visits to patients undergoing treatment have to be disguised, with TB medication masquerading as vitamin supplements. The stigma attached to TB is such that patients may be cut off from friends and family, even long after treatment has ended and the infection is cured.

Much of Panchavarnam’s story sounds like good news for India’s efforts in tackling TB and its surrounding stigma. She has a supporting family, faces no discrimination within her village, and sought out treatment quickly and effectively. However, I couldn’t help but feeling that much was lost in translation as Panchavarnam’s story was relayed to me. Not only was the information literally translated between Tamil and English, but Panchavarnam was not the one imparting it. From the moment he entered the room, Radhakrishnan dominated the dialogue.

I asked Panchavarnam questions. Jeyachandran translated. Radhakrishnan responded.

In fact, most of the hardships I heard about belonged to Radhakrishnan. His sacrifice for his sister, his demanding wife, how he alone bears the weight of so many on his shoulders. Every monologue of his seemed to veer in the same direction: he needed outside support. Not medical support, not social support, unfortunately not really anything which our organisation was equipped to provide. His sister was ill from the medication, but I heard more details about Radhakrishnan leaving work to take her to the hospital than I did about the symptoms ailing her. Panchavarnam managed to eke in sentiments about feeling lonely and bored being cooped up in the house all day, yet from her brother I heard about nothing but the support and indiscriminate acceptance of her village.

In my effort to hear her story in her own words, I found Panchavarnam voiceless. In 90 degree heat, in a house with no power, as she sat across from me with her head resting against the wall, Panchavarnam’s story was told. Told by another person, translated from Tamil into broken English, and now relayed by me – a complete stranger with no idea how to understand her world.

Written by Manar Zaki, Panchavarnam’s story appears as part of the Every Voice Blog Series tackling TB stigma around India, to find out more click here.