Living with HIV is not easy. It takes courage to face the social realities of discrimination and uninformed stigma, while fighting the disease itself.
The World Health Organization has declared it an epidemic, several authors believe the severity and lack of definitive cure of the disease give it the term pandemic. What can be universally agreed, however, is that the world can certainly do with an abundance of kindness towards people living with HIV.
Many around the world have been discriminated against and remain socially alienated because of their HIV status – children are denied access to education and adults lose their jobs. Celebrities like Rihanna, Madonna, Alicia Keys and Shilpa Shetty, among others have raised their voices to spread awareness.
At the same time, many believe that people with HIV who come forward can make a huge difference. Here are four women whose relentless struggle against the opportunity and society will inspire you to be kinder.
Spread the kindness!
A TB HIV activist, Mona Balani has had a long and arduous journey and is now cooperating India HIV / AIDS alliance in Delhi. She was determined to challenge the stigma associated with HIV and raise awareness about the disease, and she joined Network for people with HIV / AIDS in 2007.
Born in Jaipur, Rajasthan, her family life took a sharp turn when Mona and her husband were diagnosed with HIV in 1999. Everyone from family members to health professionals and doctors would discriminate against them and make inappropriate comments.
While Mona lost her husband and youngest son to tuberculosis, she survived tuberculosis twice: lung tuberculosis and abdominal tuberculosis in 2002 and 2006, respectively. However, many doctors and hospitals denied that she had completed her diagnosis as a person with HIV. She contacted a retired doctor she knew who referred her to one of his colleagues and began her diagnosis, albeit wearing double gloves and Mona having to change all the equipment and sheets used.
“People think that HIV only leads to death, but that’s not true. I have proven to the world that you can live a healthy life with HIV, and I still live a healthy life, ” she told UNAIDS.
Jyoti Dhawale believes that happiness is a personal choice and that it has made all the difference, despite challenges that have turned her life upside down time and again.
Being abused by her stepmother and a bilateral sensorineural hearing loss – where she can only hear sounds above 80 decibels – made for a rather unhappy childhood. The latter disqualified her from fulfilling her dream of becoming a fighter pilot, just like her father who was an Air Force officer.
In her marriage, Jyoti only realized afterwards that she was a victim of marital rape and was forced to undergo an abortion three times because her husband did not like to use protection. Blood transfusion during one of these abortions involved contaminated blood, and Jyoti was diagnosed with HIV in 2005.
This diagnosis happened when she gave birth to a child. Later, her husband divorced her, took the child and left her alone to deal with postpartum depression and the news that she was HIV positive.
Today she spreads awareness and debunks the taboo surrounding HIV / AIDS as one blogger, activist, and all that the Indian Ambassador of The Stigma Project. She has also found love and compassion in her husband and girlfriend Vivek Surve.
Pravasini Pradhan’s husband was diagnosed with HIV in 2003. 15 months later, he died of the disease. When Pravasini also tested for HIV, her in-laws were not allowed to speak to her, nor was she allowed to complete her husband’s funeral rites. Other families did not let their children play with her one-year-old daughter, although she tested negative.
The loss of her husband and news of contracting the virus brought social discrimination, but a testing center advisor helped her. She participated in gatherings of people living with HIV / AIDS and learning about their travels inspired her.
Today Pravasini is a committed activist and has the Kalinga network for people with HIV / AIDS (KNP +) in 2006. As the president of the organization, she spreads awareness about the disease to combat social stigmas and taboos in society. The activist also focuses on educating people with HIV about government regulations, health care facilities and available treatment options.
The organization also partners with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) through Solidarity and Action Against the HIV Infection in India (SAATHII).
In 1995, Jahnabi Goswami publicly shared her HIV status, becoming the first woman in Assam and Northeast Indian states to do so. The activist believes that being vocal in this way will drive change and break the myths surrounding HIV / AIDS in society.
In 2004 she adopted founded Assam Network of Positive People (ANPP) and currently serves as the first female president of Indian Network for People living with HIV / AIDS (INP +). According to her, the two most critical issues are the introduction of sex education in schools and securing access to HIV treatment in remote areas of India.
From the loss of her father as a politician by militants to the loss of her husband and two-year-old daughter to HIV, she has challenged all the setbacks that life has brought her. With her mother’s support and motivation, she continues to inspire, 27 years after she was told she only had three months to live.