In December 2003, when Chinmay Dharmesh Modi was 9, his parents discovered that they were suffering from AIDS. It was like a bolt from the blue. The situation became turbulent for Chinmay’s family, whereas he was too young to realise the implications of the disease.
“My mother had a gynaecological problem, and so her doctor referred her for a few medical tests. Everything seemed to be perfect, except the HIV test. The doctor, for his re-confirmation and satisfaction, called my mother for a second time,” Chinmay, now 23, said.
“The doctor later revealed that her HIV Test was positive. Everyone was shocked with the report — later, my father and I, too, were found to be HIV positive,” he added.
Chinmay, young as he was, grew terrified, being unable to understand why everyone who visited them was screaming and crying loudly. He refers to that phase as the worst of his life.
An HIV-infected person can additionally suffer from mental health problems. When one’s immune system is damaged by HIV, some infections tend to easily affect the nervous system.
“Apart from destroying the immunity system of the body, depression is most common among HIV-positive people. It all starts with a sense of disbelief when tested positive and then the patient loses all hope, leading to panic and fear,” Gorav Gupta, Director, Tulasi Healthcare, New Delhi, said.
“Many people living with HIV are at an increased risk of developing mood swings, cognitive or anxiety disorders,” Gupta added.
The consequences of stigma and discrimination against HIV positives are wide-ranging. Some people are shunned by their family and friends, or by their community. Many others face poor treatment in healthcare and educational settings.
Chinmay recalled how he was thrown out of school when the authorities learned that he was HIV positive. But later, due to pressure from an NGO, Gujarat State Network of People Living with HIV/AIDS, the school had to take him back.
“Even when I was back to school, I was secluded by my teachers and friends. I used to be all alone most of the time,” Chinmay rued.
“Even the doctors exploited and discriminated against us. My parents, who suffered from weak eyesight, are now blind due to negligence and late treatment by doctors, and it shook me,” he said.
Strong-willed Chinmay, who is now an Executive Member representing Youth and Adolescents living with HIV in the National Coalition of People Living with HIV in India (NCPI+), was also the victim of ex-pulmonary tuberculosis a few years back during his graduation.
“There is a need to create awareness and bust myths to prevent stigmatisation of such individuals as well as their families. We also need to develop an empathetic attitude and offer our support to them,” Samir Parikh, Director, Department Mental Health and Behavioural Sciences, Fortis Healthcare, said.
Firoz Khan, the NCPI+ National Coordinator, said: “HIV positive people are as normal as others and we are not demanding any special status. The society should treat us with respect and dignity, as it will enable more people to come forward and live a normal life.”
Chinmay, who is currently a professional social worker, has also worked with some big names, including late President A.P.J Abdul Kalam, Congress President Sonia Gandhi, the South African Cricket Team and veteran actress Sharmila Tagore. He also represented India at the International Congress on AIDS in Asia and the Pacific (ICAAP) in Sri Lanka (2007) and Bangladesh (2016).
To remove the social stigma over AIDS, people need to be educated about the myths and actual causes of the disease, Chinmay noted.
“One of the best ways to fight stigma and empower ourselves against HIV is by speaking out openly, honestly and loudly about who we are and what we experience. Doing this will make you feel happy, fresh, healthy and energetic,” Chinmay asserted.
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