“I am divorcing you, I can’t live with you anymore”, said my (ex) husband, whom I married in 2004 (when I was negative and got the virus through MEDICAL NEGLIGENCE), who finally divorced me in 2008, and even took the custody of my only child
“You are HIV Positive?!”, exclaimed the HR of the company “But I thought that only prostitutes and drug users get it.”
“She is HIV positive, don’t even go near her. If you talk to her or even be friends with her, the whole society will outcast you. Even your friends will abandon you…What will people say? We have a reputation to protect”, said a mother of my friend when he spoke of what good work I am doing for the community and disclosed my status to her.
“What did you say? She is HIV Positive? Don’t even bring her inside the house. Get her out from here right now, right this moment”, said a mother of another friend, and she dusted the sofa where I once sat, took the glass of water where I had sipped and threw it in the dustbin.
“My doctor tells me that saliva transmit the virus thus no kissing”, said my boyfriend, “and Jo, he is a well–qualified doctor, who holds several degrees” ..and the lump formed on my throat knowing that nothing I will do or say will convince him that it is NOT true. But still I educated him that the virus in saliva is not transmissible and virus from blood don’t thrive outside the body and die within few seconds after coming in contact with air. At least he listened. – Jyoti Dhawale Surve
In our society, HIV is perceived as a disease of “others” – of people living on the margins of society, whose lifestyles are considered “perverted” and “sinful.” People suffering from it face Denial, stigmatization and Discrimination in every walk of their life. In order to break this preconceived notion of HIV being a “disease”, I interviewed Ms. Jyoti Dhawale Surve, a lady who herself is suffering from HIV.
She is not only a member of the Community advisory for the Well Project USA. According to the website of the organisation, it is “a global hub for resources that help women and girls overcome the inequalities, barriers, and stigma that contribute to the epidemic among women”, but is also the Indian ambassador at the Stigma Project-“An organization that aims to lower the HIV infection rate and neutralize the stigma associated with HIV/AIDS through education and awareness via social media. It seeks to create an HIV neutral world, free of judgement and fear by working with both positive and negative individuals from all walks of life, regardless of their gender, sexual orientation, race, or background,” as per the Stigma Project website. In March 2015, Jyoti Dhawale who is known mononymously as Jo, won the prestigious Karamveer Chakra award in New Delhi. This award is instituted in the partnership with the United Nations for Global empowerment and citizen justice.
Jo contracted HIV due to medical Negligence but definitely NOT from blood transfusion – because as far as she remembers, she never had a blood transfusion during any of those forceful attempts for abortions that I had undergone.
“Forceful” yes, as it wasn’t her idea or wish to abort. Her ex wasn’t ready to start a family and every time she get pregnant (she got pregnant thrice!), she was taken to do MTP.
Before one could think why she hadn’t tried any contraceptive measures, the answer is that she did. “Oral pills had adverse affect on my body and hence I couldn’t take it. Vaginal contraceptive has its own time frame (10-15 minutes of waiting period) and the failure rate is high. Top of all, when a man is forcing himself upon you (which I term as “marital rape”) then one is very helpless in this condition.”
She did not realize it back then but can clearly assert now that she has been a victim of marital rape. “Rape is RAPE, whether in marriage or outside it. Anything that is ‘forced upon’ the body without consent is Rape. If a man does not like to wear a condom, then, a woman, even if she happens to be his wife, has the right to refuse and say NO. Why have I gone through this thrice and ended up being HIV positive? Why am I living with stigma and discrimination – I blame the government first and the Society next! The government – which does not recognize marital rape as a crime; and this society – which blames the woman for everything.” She reiterates .
She was entranced by her ex husbands gentlemanly behaviour. Things went fine until she missed her period for the first time in her life. “When I missed my period, I remember rushing to the store to buy a home pregnancy test kit. Oh! The joy of being a mother; of having a child of my own!” That joy lasted till she informed her husband of the news. “He told me to go in for an abortion,” she recalls.
“I was dealing with the shock of having learnt that I was HIV positive and postpartum depression simultaneously. Amidst this my ex- husband informed me that he had been having an extramarital affair and would be leaving me for her. So I needed to become financially independent, and began searching for a job. I was not yet ready to give up on my marriage. But when my maid informed me that my husband had been bringing his girlfriend to our home behind my back, I knew it was over. Whatever that was written in the divorce agreement was NOT mutual. As per the court, it was the duty of a judge to call the husband and the wife and hear both sides of the story – which in my case has never happened. I was never produced in court, never produced before any judge. A forceful signature means nothing.” Says Ms Surve as she fumes.
Jo has no regrets about her failed marriage as she believe life is a learning experience – LIFE being the greatest teacher and PEOPLE being an experience. She has no regrets because she believes that whatever she went through only made her and moulded her into a better person mentally, emotionally and spiritually.
Jo met her current husband- Vivek Surve an HIV negative partner, in an online chatroom. “He was a ‘chat’ friend. He sent me a request not once, not twice, but five or six times. I kept rejecting him until I decided to scan his profile. What fascinated me (not ‘attracted’, she clarifies) were the biker jacket and Honda Fireblade next to him! That got me to finally accept his request. At that time I was working for an IT firm, doing the graveyard shift. This ‘Hi how are you doing, I am fine, I hope you are fine, take care, bye’ saga continued for six months. Then came a day I could never imagine.”
Her father passed away on 28th June, 2011. She wanted to pay her last respects but her stepmother would not allow her near him. “He was all I had” she says. “Anger and hatred for my stepmother, and grief over my father’s death was eating me up. My best friend was in Dubai. However, Vivek, my new friend, drove down all the way to be with me, emotionally and physically.” They planned to meet the next weekend. “My husband says it was love at second sight for him,” Jyoti says.
“Vivek’s parents were naturally apprehensive about their son marrying an HIV positive partner. But when they saw how happy she made him, their objections dwindled. Their fears were dictated by ignorance. Once they came to know that HIV is nothing more than a illness and that it can be controlled by medication, they accepted me wholeheartedly.” Says Jyoti with a slight blush on her face.
According to Jo,the biggest misconception people have about living with HIV and AIDS is that they think That HIV is a “dangerous” disease. NO IT IS NOT. It can be controlled and managed with proper care and medication.
People also tend to think that HIV and AIDS are the same which isn’t true. Though HIV and AIDS are from the same virus, it is a different medical condition. HIV is an ILLNESS whereas AIDS is a DISEASE. Not necessary all people who suffer from HIV die from AIDS. With better medication coming into the market, one can live a happy healthy positive life despite being HIV Positive. Another misconception among people is that one cannot marry and has to abstain from sexual intercourse with an HIV positive person which isn’t true. One can live a happy healthy married life and even plan to have a baby provided that you follow up on the treatment with strict discipline and never ever miss the dose (of ART medication).
“Now when anyone tells me “You are HIV positive? But I thought that only prostitutes and drug users get it” I reply back with a pitiful smile (pitiful yes, because of their ignorance) “Have you ever tested yourself? You too may never know. I didn’t know I was carrying the virus until my blood got tested when I was undergoing abortion” And I could hear the gasp, I could see their stunned face with wide eyes, open mouth and dropping jaw, and believe me, I ABSOLUTELY love the reactions I get!”
As for “She is positive, don’t even go near her. If you talk to her or even be friends with her, the whole society will outcast you. Even your friends will abandon you…What will people say? We have a reputation to protect”, I had replied to that lady straight on her face, “Aunty, there are thousands of people who admire our courage to speak up. And they are those people who back us up. And your son is one of them who had participated in Awareness Program and who encouraged others to join in.” And she was glaring at her son as if wanting to know what I had just said was right and her son was facing her proudly and boldly saying “She will always be my friend”.
And oh yes….coming to the point of a hysterical mother of my friend “What did you say? She is HIV Positive? Don’t even bring her inside the house. Get her out from here right now, right this moment,”, said a mother of another friend, and she dusted the sofa where I once sat, took the glass of water where I had sipped and threw it in the dustbin. Before leaving the house I had told her that HIV Virus is not transmittable by air/water/sharing. I reminded her that I had come to this house many times and she had served me many tea/coffee/water in crockery that has also been used and reused for other guests. She wasn’t aware of my status then and now that she is, just throwing off one glass in the dustbin won’t suffice, she should throw off all the crockery in the kitchen if and only if she find one of the guest having contracted the same. Having said that, I could almost hear my friend giggle.
My ex boyfriend is now my husband. We got married on 2013. He still kisses me, heck, more than that, the husband-wife do.Once a year he tests himself which is always “negative”. And HIV negative he should always be.
Last but not least, as for the divorce from my ex husband, I am blessed that it had happened because now I realized the “purpose” of my life. This is where I belong and this is where my heart is: HIV Activism….To reach out…To give love to many people who need it and to spread the love to those seeking it. My suffering is not mine alone, it is also their suffering as they are also the part of my journey, walking through the same winding thorny path, having many long way to go, many difficulties and hurdles to cross to finally find the path laden with bed of roses.