Living with disease

'My medicine is my friend for life': The bitter pills and stoic acceptance of the HIV generation

The HIV-positive children born in the '90s, when the epidemic was at its peak, are now adults. Here is how they are dealing with life.

The first case of HIV in India was detected in 1986 among sex workers in Chennai. In 2015, the total number of people living with HIV in India was estimated at 21.17 lakhs, of which children account to 6.54%, as per the National Aids Control Organisation.

On World AIDS Day, Scroll.in interviewed children born to HIV-positive people in India who are now adults. Many children are told about their HIV-positive status around adolescence, and these experiences are often traumatic. Here’s what they have to say about living and growing with HIV.

Swara*, 18: ‘I was angry that I don’t have a mother like other children and now I also have a lifelong disease’

About a week ago, 18-year-old Swara read a pamphlet placed at a government hospital in Pune. The pamphlet described the various modes of HIV transmission. She has been visiting the hospital frequently with her father to collect medicines for both of them.

“I knew something was wrong with me and my father but no one had told me that I had HIV,” she said.

Swara first began to understand her disease at a gathering of teenagers living with HIV organised by a local charitable institute. “They just told us that the reason we all are taking medicines is because of a bimari – a disease – that can be transmitted by infected blood, needle,” she said. “They also told us that mothers can also pass the disease to their children. I have never got any needle prick, so I think I must have also got the disease from my mother but I don’t understand how my father got it.”

At the hospital when Swara read the pamphlet, she joined the dots and asked her father if the same disease had killed her mother when Swara herself was just two years old. “He asked me to shut up,” recalled Swara.

When Swara was in class six, she was put on antiretroviral therapy. She takes two medicines every day – one in the morning and the other in the evening. The habit earned her an embarrassing moniker at her tuition classes when her teacher started making poking fun at her and other students followed suit. “Everyone started calling me dava wali bai medicine girl.”

The taunt followed Swara to school where the teasing escalated. When she was in class eight, she stained her uniform. “After that other students started calling me mutari [toilet] and I decided to stop going to school,” she said.

Swara who has decided to appear for her class ten exams as a private candidate this year. “I was angry that I don’t have a mother like other children and now I also have a lifelong disease,” she said. However, Swara has not lost hope. She plans to become a beautician. “For now, my medicine is my friend for life.”

 Dinesh Kumar Yadav, 30: ‘I want people to know that there is nothing a HIV positive person cannot do’

Dinesh Kumar Yadav, 30, spent many years of his childhood being ill. Every three months, his parents would take him from their home at Jaunpur city in Uttar Pradesh to a doctor in Mumbai. All three were HIV positive and the city had no facilities that treated HIV patients.

Yadav remembers those days and said, “I was not allowed to go out and play. I would be often weak and sick.”

While he was told about his disease when he was about 12 and started visiting the doctor in Mumbai, he did not understand it until he was nearly 20. An anti-retroviral treatment centre had started in Varanasi, which is near Juanpur, and he started going there.

Yadav talked about the the pity he got from everyone who knew he was HIV positive. He said, “Itna jante the ki AIDS hai to kuch dino ke mehman hai. I knew that I would be alive only for a few years. That really depressed me.”

Dinesh Yadav.
Dinesh Yadav.

Yadav got involved with the Network of Positive People in Varanasi, which works for the rights and dignity of HIV positive people. “I recovered after meeting more people like me,” he said. “I wanted to help others too in a similar situation like me.” He later established the Jaunpur Network for Positive People.

Yadav has moving ahead completing his post graduate degree in philosophy and getting married to a woman who is also HIV positive. He now works in a project involving preventing mother to child transmission of the disease in Jaunpur.

After a sickly childhood, Yadav also felt the need to become healthy and he does that by body-building – a hobby that has earned him a state level championship. “I want people to know that there is nothing a HIV-positive person cannot do,” he said.

Chinmay Modi, 24: ‘You have to be yourself and accept the fact that you are different from others’

When Chinmay Modi was in school in Surat, his photograph appeared on the front pages of national newspapers. In the picture, he is seen on Congress leader Sonia Gandhi’s lap. The caption openly stated that he was HIV positive.

After his picture appeared in the papers teachers at Modi’s school and parents of is classmates wanted him out. “My parents and a non-governmental organisation intervened and explained to the school authorities,” said Modi, who is now 24-years-old working for India HIV/AIDS Alliance, that works for the rights of people living with HIV. He is originally from Surat where his parents run a restaurant.

Though he continued studying in the same school, he would often be discriminated against. “I used to be asked to stand outside class often. But it didn’t bother me. I was still a kind of leader in school,” said Modi.

Modi’s parents encouraged him to be open about his HIV positive status.

A picture of Chinmay Modi sitting on Sonia Gandhi's lap appeared in newspapers.
A picture of Chinmay Modi sitting on Sonia Gandhi's lap appeared in newspapers.

In December 2002, when Modi was just 9, his mother fell terribly sick with a stomach ailment. She tested positive for HIV, and later his father and the boy himself tested positive for the disease.

“Just before I was born, my mother suffered blood loss and underwent transfusion,” said Modi. “We now feel that the blood was infected and thats how all three of us got infected with HIV.”

Those days were tough on the family, especially because they lived in a joint family. “Many relatives would come to visit us, as everyone believed we would die. My parents would lock me in a room, when any relative came over. I would ask them, why everyone is crying,” said Modi.

At the time, the family faced the intense stigma of HIV as even their well wishers did not have enough knowledge about the disease. “My plate would be different,”said Modi. “I could not use the same soap as my cousins. We sat for meals separately.”

His parents, however, gave him courage. “They have only told me that you can lead your life the way you want and told me never to limit myself.”

Modi went on to study Masters in Social Work at Vadodara. “Even in hostel, if someone asked me what my medicines are for, I would tell them,” said Modi, who did not let it bother him if someone stopped talking to him because of his illness. “I feel I have one less person to deal with in this world.”

He feels that many adolescents do not have the kind of support he enjoyed when he was growing up. He said,“You have to be yourself and accept the fact that you are different from others. If you have negative feelings, the side effect is that they get depressed and are not open about their HIV status. They also lose a lot of opportunities from non-governmental organisations working in this sector. I have always accepted all the opportunities.”

The one topic that Modi’s parents stayed away from, however, was that of safe sex. They would talk to their son about how HIV could be transmitted via blood transfusion, from a HIV positive mother to child, and from a contaminated needle but never discussed sexual transmission.

“When I was about 14, I decided to let them know that I know the fourth way of HIV transmission,,” said Modi. “I told them that I know HIV also spreads sexually. I understand why they were so awkward discussing sex.”

Modi has dated women who do not have HIV. “I understand I need to take precautions,” he said. “It is not necessary that my partner has to be HIV positive.”

At the same time, he has never hidden the fact that he is HIV positive. “I tell women on my first date itself that I am HIV positive,” he said.

For Modi’s parents, their sons openness about the subject has been revealing. “They now ask me too many questions (about my sex life),” he said laughing.

*Name changed to protect identity

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This article was produced by the Scroll marketing team on behalf of Lufthansa as part of their More Indian Than You Think initiative and not by the Scroll editorial team.