Work by Sisters of the Holy Spirit diminishes HIV stigma in central India

Nehal Patel used to shy away from people with HIV/AIDS who visit a care center that shares space on her high school campus, but now she is no longer afraid to sit near them and exchange pleasantries.

"I could not have imagined doing this some years ago, as I thought it was dangerous even to go near an HIV person," said the Hindu teenager, who completed 12th grade last spring in a Catholic school in central India.

Patel, 17, credits the change in her attitude to the Sisters of the Holy Spirit, who run St. Raphael's Higher Secondary School in Indore. The congregation also manages Vishwas (meaning "trust"), a medical and counseling support center for people living with HIV/AIDS. It operates from a corner of the school campus.

"When I saw sisters, volunteers and workers in Vishwas interacting freely with HIV patients, I realized the disease did not spread the way I thought," Patel told Global Sisters Report. Those with the virus "are like us and have every right to live in society," she asserted.

Such gradual change in popular perception about HIV/AIDS is one of the achievements of Vishwas, says Sr. Jaisa Antony, founder of the center, which was opened in 2003. In the past 15 years, she says, it has helped more than 5,000 people with HIV lead normal lives.

Sr. Preethi Thomas, the school principal who was congregation provincial when the center started, said Vishwas was the outcome of their congregation's general chapter earlier that year, during which its members were encouraged to reach out to frontier areas.

However, implementing the decision had some practical problems.

"We were forced to open Vishwas on the school campus because the local people refused to rent us a place to accommodate HIV people," Thomas said.

Their trouble did not end there. Even teachers, students and parents opposed the center's presence on the campus. The nuns overcame those fears after several rounds of talks with individuals and groups, Thomas added.

Now parents and teachers support their work among people with HIV/AIDS, she said.

Patel said many students forgo their birthdays and other celebrations to donate money to Vishwas. However, some still avoid contact with HIV patients, she added.

Antony, who now works in neighboring Rajasthan state, says Vishwas was their province's response to the alarming HIV situation in Indore, the commercial capital of Madhya Pradesh state, and its surrounding areas. "We had no choice but to open the center in Indore somehow," she said.

Preliminary studies by the sisters (known formally as the Missionary Sisters Servants of the Holy Spirit) revealed that many people in Indore had contracted the disease because the city is a busy hub of goods transportation to various parts of India. Truck drivers are identified as major carriers of HIV in India.

In 2017, India had an estimated 2.14 million people living with HIV/AIDS, according to the latest report of the National AIDS Control Organization.

The nuns also found that many auto-rickshaw drivers, handcart pullers and others in Indore had contracted the virus.

The nuns initially found the infected people were reluctant to admit their health condition or go for treatment. "We had a tough time to convince them," Antony recalled.

The reluctance stems from society's fear of the disease. Even relatives of people with HIV are treated as outcasts, Antony said. "No one would share space, food and water with an HIV-infected person."

The nuns began by visiting the families of the infected regularly to counsel them. "In some cases, we had to take more than 10 sessions to build confidence among the affected," Antony said.

Sr. Mary Stella, current director of Vishwas, says the center now gets 50-70 new cases every month. Some come even several hundred miles from Rajasthan and Maharashtra states, she told GSR.

Vishwas distributes free medicines and nutrition to those infected and regularly monitors their progress.

The center also helps those with HIV find jobs, educates their children, arranges marriages and settles them in life, the director explained.

One person helped by Vishwas is Divya Singh (not her real name), wife of a truck driver and mother of three. The 35-year-old Hindu woman says her family is alive now because of the nuns. She said she had contemplated suicide twice because of the HIV impact on her family.

"My husband was the first to be detected after he complained of uneasiness," she said. That was in 2011 and she wanted to end life because "I had heard HIV people would die soon." Hindus consider widowhood a curse.

Singh mustered courage to reveal her husband's condition to some close family members. One of them suggested she go to Vishwas.

At Vishwas, Singh's husband regained strength with regular medication and nutritious food.

But the family suffered another jolt in 2013 when Singh and the children tested HIV-positive, after the nuns suggested they undergo the test at the government-run medical college in Indore.

Singh said the suicidal thoughts returned to her as she worried about her children's future. "They would not be able to marry or raise families, for no fault of theirs," she added.

However, the sisters "took special care of us until we reconciled with the reality," Singh said, adding that they now lead a happy life.

Singh's husband said they take their medicines and follow a nutritious diet without fail. "We are healthy now," said the 45-year-old man, sitting inside their two-room house on the outskirts of Indore.

Singh has also found a purpose in life after Vishwas employed her as a counselor. She visits the medical college and homes in the area to spot people susceptible to HIV.

"Whenever I find someone suffering from weakness and uneasiness, I encourage them to undergo an HIV test and, if proved positive, come to Vishwas," she said.

To the reluctant, she tells her story to convince them that HIV infection does not lead to instant death. "I tell them they can live longer like a normal person, if treated well."

However, the Singh family keeps its health condition quiet to avoid social discrimination. "We will keep it as a secret until our death," she said.

Their children also know that it would be the end of their studies and life as they know it if they reveal their illness to anyone.

They now attend a school close to their house. "We take part in all school activities," said the eldest daughter, a 10th-grader. The younger girl is in the eighth grade and the youngest, a boy, is in sixth.

The children today worry less about their health.

"I want to become an air hostess," the eldest girl told GSR, whereas her younger sister aspires to join India's civil service.

Like Singh, Priya (not her real name), who works in Vishwas as a coordinator, keeps her HIV status secret. She became a widow in 2010, three months after marrying a truck driver.

"My in-laws blamed me for my husband's death and drove me out of the home. Later, I found I, too, was infected," she told GSR.

She also thought of committing suicide, but her brother brought her to Vishwas, where she found many in similar straits.

"However, I still could not accept that I was an HIV patient," she added.

She accepted the reality after several counseling sessions with the nuns, who also provided legal assistance for her to fight a case her in-laws filed, accusing her of infecting their son.

Such efforts by the sisters have rekindled hope in many infected with HIV, says Seema Mishra, a social worker.

"The sisters' sustained campaigns have also inspired people to do something for these unfortunate people," said Mishra, who is based at Khandwa, some 80 miles south of Indore, where the nuns have another center.

The nuns' admirers include Bishop Chacko Thottumarickal of Indore. "Their success in rebuilding shattered lives of HIV people is remarkable," the Divine Word prelate told GSR. "They have given respect and confidence to people who are not accepted in society."

The nuns have also inspired other nongovernmental organizations to join the HIV mission. "Even the government has started caring for HIV-infected after seeing the sisters' work," the bishop said.

Mishra says what distinguishes Vishwas from other organizations working among people with HIV is its constant touch with its patients. "The sisters have helped people believe that, if treated well, one can live a full life," she said.

Stella says Vishwas maintains a call center to follow up with outside patients.

"Every day, our center calls more than 100 patients to monitor their health condition. Unless we do this, they will tend to lose track, and it will harm them," the director explained.

Raju Mudgal (not his real name), HIV-positive for 15 years, says he follows instructions from the office strictly and leads "a comfortable life without any difficulty."

Vishwas has also found recognition.

In 2012, it received the best community care center award from the Madhya Pradesh State AIDS Control Society for its humanitarian service to people living with HIV. The society functions under the government of Madhya Pradesh, a state ruled by the Bharatiya Janata Party (Indian People's Party), the political arm of right-wing Hindu groups who oppose Christians elsewhere in the country.

Stella says they get public grant money from the federal and state governments to support their work serving people with HIV.

Vishwas also encourages HIV-positive persons to get married. Stella says she is looking for a match for Priya. "Some couples have children who are HIV-negative. This has emboldened them to think of a life beyond HIV," the nun added.

[Saji Thomas is a freelance journalist based in Bhopal, a central Indian city. He has worked for several mainstream newspapers such as The Times of India. This article is part of a collaboration between GSR and Matters India, a news portal that focuses on religious and social issues in India.]