“When you are told you have only six months to live, you can either make every day count or wait for death to arrive. In my case, I wanted to do neither. I wanted to end my life immediately,” Surender Kaur tells The Better India.
In 1995, when she was merely 19, Surender was diagnosed with HIV.
Those around her, including her in-laws, abused and shamed her for contracting a disease whose treatment was not yet known to them. But everyone turned a blind eye to how she got the disease in the first place — from her husband, who worked as a truck driver.
No one blamed him for cheating on his new bride and having unprotected sex with a stranger. It was unfair and cruel, she thought, to be punished for something she had no control over.
Her in-laws threw her out of the house, but fortunately, her parents took her in.
For women like Surender, who come from small towns like Rohtak, getting HIV was considered the worst crime, the sins of which could only be washed away by dying. She was ‘advised’ to follow the same route.
She recalls that thoughts of suicide did cross her mind, but she did not follow through. There was a voice in her head that gave her the strength to keep fighting.
And this very voice has not only helped her survive for more than ten years without any medication but has also given her the courage to help other women like her.
Was marriage the only way to break the cycle of poverty?
Surender grew up in a family of six members. Her parents worked day and night to provide basic needs like food and clothing to their kids. She recalls that while education was never the primary focus, the children went to school.
Surender, who was a good student, was among the few girls in her village to clear Class 10. However, her destiny was also fixed. She was married off as soon as her exams were over so that her parents would have one less mouth to feed.
“In most families of my village, parents are desperate to marry their daughters to ensure their sons get more facilities. I was never very keen on pursuing education, but if I had the chance, I would have made something of myself. Like every excited bride, I was looking forward to my new life,” she says.
Within 17 months of her marriage, she was diagnosed with HIV. Her newborn daughter was taken away from her in-laws from the fear that she would die too.
With nowhere to go, Surender went back to her parents’ house in Rajasthan’s Alwar district, and started counting her days.
Loose motion, fever, and body pains became an everyday affair. With no treatment or medication in place for HIV, she would remain confined to her room. For nearly ten years, she avoided stepping out of her house.
“It felt like my parents were waiting for me to die. People treated me differently all the time. Those ten years were terrible, not just physically, but also mentally. My parents did not earn enough to support me, but they still took care and I am grateful to them,” she recalls.
It was only in 2005 that Surender came in contact with Network for HIV Positive People, a Gurugram-based NGO, that informed her about antiretroviral therapy (ART). For the first time, she was taking medications. It was through their support that she decided to work.
“I was told about the free medications and volunteering opportunities I could take. I was actively looking for jobs to support myself, but my condition came in the way. I joined the Haryana AIDS Control Society (HACS) and worked there for four years. My monthly income was Rs 4,000 back then, which was sufficient for myself,” she says.
It was while working with the organisation that Surender found her calling. She came across several women who had been deserted, discriminated against, and ill-treated. She did not want anyone else to go through what she had been through. She worked as a counsellor and helped many HIV patients get medications on time.
After this, she worked with VIHAAN to provide rehabilitation to HIV patients till 2017, before moving on to SAATHII (Solidarity and Action Against The HIV Infection in India), her current workplace. She also moved to Rohtak and started living independently.
On eliminating mother to child transmission
Surender says that so far, she has worked with more than 200 pregnant women, of which only two developed complications due to HIV. She counsels and works with pregnant women right from the trimester stage till the baby is two years old.
She ensures that the women take their medication, go for regular doctor visits, and are mentally stable.
Surender says that even today, despite access to medication, many families prefer keeping the disease under wraps due to fear of judgement. In such cases, the mothers are discouraged from visiting doctors or even taking tests after their husbands are diagnosed with HIV.
“Compared to men, women take more and timely medicines. For instance, we had one case of a husband-wife duo. The husband was diagnosed with HIV by a private lab and was directed to SAATHII for help, but he never showed up during the pandemic. During the lockdown, his wife, who was well aware of his condition, became pregnant and risked the unborn and herself. Only after her husband died did she came to us for help. During a session, she opened up and shared that her in-laws had forced her to not tell anyone about it. However, she realised the situation soon and began her medications. She delivered a healthy baby,” Surender shares.
However, she adds that she is unsure of how long the mother will continue her medication.
“Most women stop medication after giving birth and knowing that their newborns are safe. Some women also take the abortion route, which can be avoided with timely intervention. If the newborn is given certain medication within 72 hours of birth, it is safe,” she says.
Due to lack of awareness, stigma, and fear, many women end up transmitting the disease to their babies and risking their lives. Besides accompanying the women to medical facilities and helping them avail free treatment services, Surender helps them with government schemes. While there is no concrete pension scheme for HIV patients yet, Surender identifies social work schemes and widow pensions.
Well aware of the economic status of HIV positive women, she often goes out of her way to provide help despite her own meagre salary.
“The women sometimes do not have money to take a bus and come here. Some do not have money to buy nutritious food that is good for them and the unborn. In such cases, I try to provide some of my money or take help from SAATHII. My treatment is still on, but I am happy that I am no more than that helpless girl who lived in fear,” she adds.