Staying Positive: How an ostracised woman with HIV is helping other patients live with dignity

Priya, one of the co-founders of Cheyutha, says she started the organisation so no one else should face the struggle she did.
Staying Positive: How an ostracised woman with HIV is helping other patients live with dignity
Staying Positive: How an ostracised woman with HIV is helping other patients live with dignity
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Enter the Red Cross Hospital in Hyderabad, and you find an unobtrusive four-room building on the right. The entrance is crowded with donated tables and cupboards, and three sewing machines, where women work to produce hand-made jute bags.

Behind the simple facade of the building, however, is an inspiring tale of self-help and community building. These are the main offices of Cheyutha, a women-centric community based organisation working for the well-being of persons living with HIV (PLHIVs), and run by persons living with the infection themselves.

Priya, one of the founders of the organisation, together with seven volunteers, works day and night out of this office to provide care and support to 300 people, including 33 children, who are living with HIV in the city.

Founded in 2003, Cheyutha aims to help persons living with HIV in the twin cities pursue lives of dignity. Taking a holistic approach, the organisation caters to the physical, psychological, emotional, socio-economic, medical, personal and spiritual needs of PLHIV. This includes conducting regular medical check-ups and providing antiretroviral therapy, providing counselling services and also legal aid for persons facing denials of their rights. For single mothers struggling with the infection, Cheyutha also provide education for the child.

Priya, herself HIV positive, says that the crisis she faced after being diagnosed with HIV pushed her to start Cheyutha.

“I don’t want anybody else to have to go through the struggle I faced,” she says simply.

Life is never easy for HIV positive patients, she adds, and the financial crises that often accompany the diagnosis make even bare survival a challenge for PLHIV.

Priya’s own diagnosis in 1999 and its aftermath were a truly traumatic experience for her.

“I was eight months pregnant when I found out I was HIV positive,” she reveals.

Her husband confessed that he had been diagnosed even before their marriage, but had not told her.  

“I was shocked, angry and hurt, I could not understand what I should do,” she says.

Since that moment, nothing in her life remained the same.

“I did not want my child to suffer from this infection, so I asked the doctor to abort the child. But in the eighth month of pregnancy, that was not possible. None of the hospitals in Hyderabad at that time was ready to do my delivery. Some even refused to touch me. They were all scared of this unknown infection,” she explains.

Even her family and her in-laws abandoned her in this moment of hardship.

“I even tried to commit suicide,” she says, pausing for a few seconds.

Finallly, Priya came to know about a hospital in the city called New City Hospital, which agreed to perform her delivery.

“The doctor said that a caesarean delivery could save my daughter from the infection,” Priya says.

Her hardship only increased from there. A year after she gave birth to her daughter, she lost her husband and was now left to raise her child by herself.

Abandoned by society and family she spent two years in the grip of a crisis. “We did not even have enough food to eat two times a day, and nobody helped us.”

Priya sought out many NGOs in search of job that allow her to take care of herself and her daughter. But people felt threatened by her infection.

In 2002, she found an NGO that worked for the welfare of persons living with HIV. “I was in need of money. I found out that they pay a salary to their volunteers. I insisted that they allow me to join the group,” she said.

After working there for a year, Priya founded an organisation of her own in 2003, together with three others who had experienced similar stigma, called the ‘Network of People Positive’.

“Initially Network of People Positive did not have enough funds to materially help people. We could only give moral support and free counselling. When we could arrange enough money, we used to provide medicines. But after two years, LEPRA society became our partners and since then they have been supporting the organisation. We also then changed the name of the organisation to ‘Cheyutha’ which means ‘helping hand’,” she narrates.

With LEPRA society’s help, Cheyutha expanded the range of support services it provided, and the number of PLHIV it could reach out to. Among its many services, Cheyutha has even managed to conduct a number of positive marriages. “Positive marriages are ones where two HIV positive persons get married. We have conducted 58 such marriages so far,” points out Priya.

However, this year, Cheyutha finds itself in a financial crisis, as the funds have stopped flowing from LEPRA society.

“We are just getting our salaries, which are as less as Rs 5000, and no funds for medicines and other expenses. Most of these people (that Cheyutha works with) belong to poor families, and work as domestic workers or daily wage labourers. They are prone to infections and other problems like skin infections, diarrhoea, vomiting, and weight-loss while they take the Antiretroviral Therapy (ART) that helps control the growth of the virus. To avoid the side effects they need to take other medicines also,” she explains.

Despite the financial crunch, the organisation continues to provide whatever services it can. To manage its expenses Cheyutha has been making and selling jute bags to raise funds, but this is thus far proving insufficient. Besides this, Cheyutha has been receiving occasional support from a few organisations. “The Joy group, Change foundation and Value Lab, an IT company, have been providing occasional donations for medicines to Cheyutha," she explains.

 “However, I believe medical facilities alone won’t help all people. There are many such people who live without exposing their infection fearing society and family,” she adds.

Priya hopes that Cheyutha can find funding to continue its work, as nothing much has changed for PLHIV in society in the nearly two decades since she faced her own crisis. They still remain victims of social discrimination and stigma, she observes.

“My daughter had to change three schools because of this. The moment they find out about my infection, they feel threatened and ask her to take admission in some other school,” she points out.

(Edited by Rakesh Mehar)

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