‘Lack of awareness to blame for AIDS stigma’: An HIV-positive woman speaks

Vivek Singh Chauhan

Lack of awareness, not people, are to blame for the prevailing prejudices against HIV and AIDS in our society, says a 41-year-old HIV-positive woman who has come out in the open to fight the stigma attached to the condition.

Mona Balani has had to endure many a caustic remark of relatives and discriminatory behaviour of the society after she tested positive for HIV (Human Immunodeficiency Virus) almost 18 years ago.

But Balani is no ordinary woman. She is living with HIV and also having a life. She is presently working with the HIV/AIDS Alliance, a non-profit that works towards strengthening the capacity of civil society organisations, government and the private sectors to respond more effectively to HIV/AIDS. She is also a representative of NCPI+ (National Coalition of People Living with HIV in India+).

"People are not genuinely ignoring HIV/AIDS patients but are unaware of the facts related to it. If we can educate them about the disease, it will make the people understand the situation better," Balani told IANS over the phone.

Balani's husband, who also tested positive for HIV in the same year, breathed his last in 2005.

"We faced a lot of problems when we spoke to our family about our HIV status. They were simply clueless. Our dear ones gradually started avoiding us. Not even a glass of water was preferred by people who came to visit my husband when he was in a critical condition," Balani said. 

Balani recalled that because of the couple's HIV status, even some hospitals denied to admit her husband at times. She herself also faced similar treatment. 

"Once I went to a private hospital and after knowing that I am HIV positive, they refused to treat me and referred me to another hospital," said Balani. 

Life took a roller coaster ride for Balani after her husband passed away in the year 2005 and she was left only with her elder son. 

Due to a poor immune system, Balani used to remain unwell most of the time, which further became a reason for her to take refuge at her parents' home.

"One fine day, I suddenly fell sick after which my family took me to a doctor. It was predicted that I am dying of AIDS and my parents were asked to pray for my last breath," Balani said.

"I clearly remember that after they brought me home, I was made to lie on the floor and wrapped with a plain white sheet. All the people gathered there actually started to pray as if they were performing the last rites for me," she recounted.

This incident shook up Balani and she then decided to stand up for herself and undergo further treatment of her illness on her own terms.

"My son sat beside me and uttered helplessly 'Papa left us, you don't leave me'. I don’t know what happened to me and I got up and told them to stop doing this as I am still alive," she said.

"And the very next day, I moved out of my house and since then I am taking my own care," Balani added.

Balani is undergoing antiretroviral therapy (ART) which is a lifelong treatment to suppress the viral load of HIV infection and prevent other opportunistic infections too. 

"ART consists of medications that treat HIV. The drugs do not kill or cure the virus, but it can reduce the load of virus. Now, we can give ART to any person detected with HIV at any CD4 count. With this therapy, a chance of opportunistic infection also falls due to decrease in the viral load," said Manisha Arora of Sri Balaji Action Medical Institute in New Delhi.

"If you are mentally strong enough to fight against the stigma, I am sure no one can stop you from living a life the way you want to live," Balani said.

According to the World Health Organisation (WHO), there were approximately 36.7 million people living with HIV at the end of 2016.

(Vivek Singh Chauhan can be contacted at vivek.c@ians.in)