Published: 01st December 2017
World AIDS Day: Meet the first Indian Woman to come out openly as an AIDS victim
Kousalya Periasamy has been fighting HIV for the past 22 years and helping other victims at the same time
What spreads HIV? read a question in Kousalya Periasamy's nursing examination. She managed to tick the right answer - Having intercourse with multiple partners. "I didn't even know what that actually meant. I was just 19," she recalls. Little did she imagine that the virus would soon become a part of her life, forever.
But she didn't let the virus kill her. She was a fighter. Still is. After all, we're talking about the woman who was the first woman in the country to come out and say, "Yes! I am HIV positive." She didn't stop there. She founded a society called Positive Women's Network to support the victims of HIV.
The braveheart tale: Kousalya Periasamy receiving the Nari Shakti Award from then President Pranab Mukherjee in 2015
'Just remove your uterus and live happily!'
In 1995, at 20, she was married off to her first cousin. All was well for a few days until she fell seriously ill two weeks later. "I was tested HIV positive. I got the virus from my husband who was also positive," she recalls. She didn't really know how to react. She didn't know that the virus in her was incurable. "My husband and I took medicines that were sold under the pretext of curing AIDS. Doctors too weren't much informed about it. In fact, one of them advised me to remove my uterus and live happily with my husband," she recalls. Seven months later, her husband killed himself.
Will I survive?
After her husband's death, Kousalya was asked by the collectorate's media cell if she could speak up about AIDS. She readily accepted. "There wasn't much awareness about it," she says. She recalls meeting another victim who was very thin and had sunken cheeks with prominent cheekbones. "I was scared. I thought I'd grow as unhealthy as him," she says. The awareness by Dr Suniti Solomon, who detected the first case in India at YRG Hospital, and her team was what changed her perspective and inspired her to work for the patients.
However, the social stigma didn't seem to end. Once she was welcomed by the news of an AIDS patient burned to death. This scared her family. They didn't let her go out and talk to the media for long. "For some time, I gave interviews, but didn't let anyone publish my photograph.
ART medicines were subsidised by the government only in 2004. How bad was life for AIDS patients before that? Kausalya paints a picture. She was down with TB and meningitis in 1999. "I was extremely weak and everyone thought I wouldn't survive. I had to buy medicines for Rs 7,500 at that time. The same medicines are available for Rs 300 today," she says.
It was around the same time that she founded Positive Women's Network (PWN) with three other women, Varalakshmi, Jones and Hema. They started advocating for the rights of patients, a better life for children and conducting support group meetings. Within a month, they started getting projects from the government where they were asked to make the patients aware.
We need changes
Currently, PWN supports AIDS victims and their children. They are also pushing for more researching in the field of ART medicines and for a universal guideline to treat positive women. She also rightly says that there has to be a system that ensures easy flow of information between the government and patients.
Mockery behind my back? I don't care
Kousalya wore a bright smile throughout the conversation. "Maybe this is god's gift. He took so much away from me, but he didn't take my smile back," she laughs. Like every other AIDS patient, she too had to go through a lot of stigma and mockery. But she didn't care. "I remember how the nurses were making fun of me as I was newly wed and got infected by the virus. But why should I bother about what people say behind my back? Until now, no one had ever said something nasty to my face," she says.
Wear that red ribbon
Kousalya shows us a packet of red ribbon badges. One badge costs Rs 20. They're selling this on World AIDS Day to raise funds. But that isn't just it. "These ribbons help a lot of AIDS patients directly and indirectly. Also, it shows that you care for the cause," she says.