An HIV-positive diagnosis can be extremely difficult to cope with. However, this mother is looking forward after her diagnosis, even despite facing many other extreme challenges.
Jyoti Dhawale is a mother, and an HIV survivor. “I share my story because I am convinced that happiness is a personal choice, and I have found it despite what has come my way. Without a pinch of additional drama, my life has been far from what an average person’s life should be,” she says, as she begins to converse.
Jyoti had a ‘Cinderellaesque’ life as a child, courtesy her stepmother. Seeing her half-sister treated with love compounded her own feelings of loneliness. Her father was an Air Force Officer. Naturally, she inherited an intense love for fighter planes. She was, unfortunately, rejected from the Air Force due to the bilateral sensorineural hearing loss she suffered at three (she can only hear sounds of 80 decibels and above). She normally converses through lip reading or written interactions, and can’t pronounce letters like C, X and S.
With many more unforeseen hurdles blocking her way, Jyoti somehow finished her high school education from the National Institute of Open Schooling, New Delhi, but could not make her way to college. She fell in love and got married at 28. Things went well until she discovered her first pregnancy. Her husband then declared that he did not want babies, and eventually got her to abort thrice in two years. She, however, confesses that she was financially and emotionally dependent on him, and was too naive to even know about the Domestic Violence Act.
Jyoti learned the importance of self-respect the hard way, through being severely physically and mentally abused.
This was the beginning of her next ordeal. One of these abortions brought HIV along with it due to medical negligence at the hospital. She was transfused with infected blood. When she received the news of being HIV positive, she was three months pregnant again. This time, she refused to abort. Through God’s mercy, a healthy, HIV negative baby boy was born. However, her ex-husband demanded divorce soon after the child’s birth, and took away their son forcefully.
Jyoti was left alone to deal with the shock of learning that she was HIV positive, as well as postpartum depression. Amidst this, her ex-husband officially declared intent to separate. While Jyoti tried to save her relationship she also started looking for a job herself. She never had a divorce by mutual agreement, so just a forceful signature marked the end of this episode.
“After being in the closet for five years, I decided that I didn’t want to remain in hiding all my life. There is so much more to life than just cowering in fear,” she says. She thus began her journey of learning about HIV through meeting experts, reading online, joining HIV support groups, and so on.
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She continues to work towards getting her son back legally.
In 2013, a solitary ray of hope entered her life and she married a HIV-negative man, Vivek Surve, who has shown her compassion and care. As a mixed-status – or sero-discordant – couple, they have been vocal about their married life and sexual relationships. “My husband is the biggest example and role model for society to banish fear and eradicate stigma against HIV,” Jyoti quips.
What makes Jyoti really special is the fact that she boldly shares her HIV reality with the world to dispel myths and increase awareness and acceptance. She gets queries on her Facebook message box, and some people even turn up at her place with medical files and medicines to learn how to take better care of themselves through adherence, learning to understand lab test reports, understanding the pros and cons of medicine intake, etc.
She works as a HIV Activist, blogs about her life with HIV, and is also the ambassador for many organizations worldwide supporting the cause.
She is also a regular speaker at schools, colleges, events, and organisations, where she educates people regarding HIV. She also imparts knowledge about the PrEP pill (an emergency HIV pill that patients can take for a month).
Despite the harsh struggles, Jyoti now believes in looking at life optimistically, “My biggest strength, I feel, is the fact that I am happy to extend a helping hand, and exchange a warm smile or hug to whosoever needs it. I understand the pain that isolated people suffer from. I also know that I can be happy if I want to be, and not because of someone or something else.”
(Jyoti is a BabyChakra community member, helping spread awareness and knowledge.)