NOVEMBER 29: December 1. It is that time of the year when the red ribbons are out, organisations print new brochures, brush up on their statistics and organise functions to observe World Aids Day. But for HIV/AIDS patients, it is a daily struggle whose only certainty is a slow and painful death. Express Newsline draws the curtain back on a disease that is emerging from the closet but only just. In the first of a three-part series, we look at sections of patients in the country's AIDS capital and how the AIDS virus has irreversibly changed their lives. The first focuses on housewives and the `double burden' they carry.Twenty-eight-year-old Geeta is HIV-positive. Two years ago she probably wasn't. But life changed once she got married and her husband, a clerk in a bank, discovered he had AIDS. Geeta had no choice. She took the Elisa test and even before the result came, she had a bad feeling about it. She tested positive, spent a year nursing her dying husband and now spends every day fighting alosing battle.
While the government and other organisations work at spreading awareness among high-risk groups in red light areas and at truck terminals, behind the walls of many homes are women living shadow lives, coping with the disease and the inevitability of succumbing to it. Having contracted the fatal virus from their husbands, they also grapple with guilt some of them have passed the virus on to their children while struggling to keep their `secret' from the prying ways of every day existence.
With the number of AIDS cases reported in various hospitals on the rise, there is a consequent rise in the number of housewives who are testing positive. While HIV/AIDS projects talk about safe sex with a single partner, these women want to know ``what their fault is''.
Huddled into Dr Aruna Bora's HIV/AIDS Information and Guidance Centre at Ghatkopar are more than 100 women, all HIV-positive and from all walks of life. During the meetings once a month, they talk about things others wouldn'tunderstand... about matters on the home front, their children and growing medical expenses. Sometimes, they also wonder why they have to meet at the centre at all, their emotions fluctuating between despair and anger.
A couple of months after marriage three years ago, Karuna's husband paid a routine visit to the doctor. He thought his persistent fever was normal, but the doctor suggested a blood test. The test was positive and eight months later Karuna's husband, a machine operator at a factory, died. Not only did she have to deal with her husband's death, but also with the fact that he had given her the virus.
``For no fault of mine, I will have to suffer for life,'' says 25-year-old Karuna, who eventually landed a job as a school teacher. ``The family has been supportive but society has not. I will just have to live with this, paying for my treatment and coping with the pain.''
Anita is unemployed and aged 35. Her husband, an unskilled labourer, died five years ago, leaving her with the virus, threechildren and very little money. ``I have not yet found a regular job,'' says Anita. ``My family abandoned us the minute they got to know that my husband had AIDS and I had tested positive. My father-in-law was ashamed of us.''
Today, between persistent colds, coughs, fever and other symptoms, she cares for herself, her children and continues to hunt for an elusive job. ``I live alone, with my three children and my constant worry is their future.''The predicament of these housewives, Dr Aruna Bora told Express Newsline: ``These women usually don't have anybody to fall back on. And the one thing they always worry about is the their children's future. The situation is worse in cases where the children have also tested positive. They are all so young and life has been cruel.''
Adds Dr Shanta Sankaranarayanan, joint director (training and surveillance) at the Mumbai Districts Aids Control Society: ``Housewives have a double burden. First they have to cope with the fact that they have contracted thevirus. Then they have to look after their husbands and family. With every passing day, their troubles only increase.''
Symptomatic treatment of the disease means that the women have to periodically buy medicines for their colds, fevers, tuberculosis. Every trip to the chemist means mounting expenses. Anita can't afford it and Karuna works hard to buy them. Lalita (27), a post-graduate, is luckier, her parents support her.
Bora started her centre because the number of men with AIDS visiting her husband's clinic was alarming. A lot of them were dying and leaving behind a struggling family. When Bora opened her clinic, they were just a dozen women who shared the trauma of living with the virus. Today, just a couple of years later, there are more than 100 of them battling for survival and hoping they live long enough to see their children settled.''
(Names of patients have been changed to protect identities)The HIV/AIDS Information and Guidance Centre Tel: 516 0096
Copyright © 1999 Indian Express Newspapers (Bombay) Ltd.