Spread the facts and not the fear. It was the slogan which medical experts gave two decades back as Indian society then was struggling to accept deadly tentacles of AIDS.
More than 20 years have passed since then. People have accepted that AIDS has found roots in families and neighbourhoods but they are unwilling to own the victims.
“We often meet HIV-affected people who say their families disowned them because of the social stigma attached to it,” Madhya Pradesh Voluntary Health Association (MPVHA), Indore, counsellor Deepmala said.
While the National AIDS Control Programme focused on elimination of stigma for decades, a lot remains to be done. Interventions like plying red ribbon express failed to get the desired impact.
The MPVHA director Mukesh Sinha said the association is working with 81 families in city. “The emphasis is on how to help patients overcome the stigma they face,” he told HT.
The city has about 8,000 AIDS patients. HT brings three case studies which reflect the social and emotional trauma HIV/AIDS patients go through.
Bravehearts who coped with challenges
Prakash Suryavanshi (HIV positive), labourer
When Prakash was diagnosed as HIV positive 10 years back, he was determined not to give up. He struggled hard to overcome the embarrassment caused by his parents, society and employer.
He and his wife were diagnosed as HIV positive together after which his parents threw them out of house. He lost job and his wife had three miscarriages. “God was testing my patience,” Suryavanshi recalled.
He had hard time explaining his parents that he was normal and nobody will contract the disease if he lived in the same house with them. Likewise, it was hard for him to explain the same to teachers and principal of government school where he admitted his two HIV positive children.
But circumstances became normal gradually. A daily wager, Suryavanshi is back with his parents and lives happily.
Varsha Nivaskar, (HIV positive), AIDS counsellor
Diagnosed with disease in 2002, Varsha spends lot of her time with patients of HIV/AIDS to help them overcome the shock, embarrassment and stigma. Working with her husband who is also HIV positive, Varsha feels that accepting that one has contracted the disease is crucial in fighting it out. “You may use latest drugs and technologies. But if you don’t have the will power, the courage to face the society, you can never make it.”
Narrating harrowing tales of how difficult it was for her during initial years, Varsha said, “I see people accusing their daughter-in-law once they come to know she has tested HIV positive. They should not do that. Whosoever was at fault, we should understand that our focus should be on killing the disease and not patient’s spirit.”
Bablu Verma, (HIV positive), plumber
Diagnosed with AIDS in 2005, Bablu recalls his entire journey with a strange confidence in his eyes. “I had to go through lot of hardships. But now I am stronger. AIDS is nothing compared to other diseases like diabetes, hypertension. We can eat whatever we want, travel around and be like normal individuals. Moreover, if we take proper care we can even expand our life span. I don’t understand the drama people create about it.”
His parents died of shock when they came to about his disease. His brothers left him on street. But he struggled, found job and purchased house. Presently, leader of a social group called ‘Nayi Disha’ in his residential colony, Bablu works as a counsellor during his free time. His group works as a support system, a family for other patients.
Nirmala Devre, (AIDS affected)
Part of a social group, Devre’s husband died of AIDS, leaving behind two children. “His death left me shocked. I was a timid housewife facing society, family and children,” recalls Devre. Joining MPHVA-supported groups helped her to cope with challenges. Her cousin, her brother and his wife contracted AIDS. Though her cousin died in 1996, her brother and sister-in-law are still fighting the disease. “Families disown patients, cut off emotional ties at a time when they need it most,” Devre said while recalling her past traumatic journey.