Living with HIV is tough even without social stigma burdening survivors with mental illnesses

A representative image of a doctor holding up the AIDS ribbon (Image Credit: Canva)

By Sayantani Deb

For many in Assam, mental illnesses caused by stigma and discrimination add to the burden of living with HIV. Some are coping, thanks to mental health professionals stepping in at the right time.

Anand lived in the green Sivasagar district of Assam, about 370 kilometres east of Guwahati. In 2010, slow economic growth and lack of jobs compelled him to move to Bangalore when he was only 19 years old.

Anand, whose real name is hidden on request, hasn’t refused any jobs since he came to Bangalore. Over the years, he has worked as a tailor, a carpenter, and a cook, for a daily wage.

In January 2025, during a routine blood check-up he was diagnosed with HIV. “I was literally shaking while reading the report,” he said. He decided to hide the diagnosis from his family, fearing stigma.

He continued to work. “Sending money home regularly was my primary concern,” he said.

In June 2025, when his family insisted he return home, he was surprised but not suspicious. But, when he reached his village of Bokota Nemuguri, he said he was subjected to severe verbal, physical, and mental abuse. “I was tied and locked in a room for almost 15 days,” he said. That is when Anand realised his family was aware of his HIV status through acquaintances who were also in Bangalore.

The family asked to see his medical reports, and after they confirmed their suspicions, they asked him to leave the village. “Living with HIV means a constant fear of feeling judged or misunderstood,” he said.

The stigma of being diagnosed with HIV coupled with the compulsion to hide the HIV status adds immense stress and pressure on people who are HIV positive. Many feel that HIV may get transferred to them if they share a meal or clothes with an infected person, said Manab Surya Das Assistant Director, Assam State AIDS Control Society, “But, to the contrary, even an HIV infected mother may deliver an HIV negative child.”

In many cases, the pressure of living with HIV is lesser than the weight of being judged, cornered or rejected, said Jahnabi Goswami, a psychologist and chairperson of the non-profit Assam Network of Positive People. “They always ask ‘why me?’ ”

HIV+ and stigma

In many communities, the memories of the 1980s HIV/AIDS epidemic that killed thousands of people are still fresh. During this period, the idea that HIV contraction happened only during sexual activity or drug use gained traction. Even today, misplaced and outdated fears of contagion and misinformation about how the virus spreads are among the main reasons for the stigma patients face. Therefore, patients are still judged on how they contracted the disease.

Medical developments have moved far ahead, but societal judgements have not caught up.

While the World Health Organisation has repeatedly said it aims to end AIDS by 2030. Stigma and discrimination are recognised as one of the greatest challenges to tackling HIV infection and are the major barriers to the delivery of quality services by health providers, according to the WHO.

According to the HIV Estimation Report 2025 released by the Assam State AIDS Control Society, an estimated 33,174 people are living with HIV in Assam.

Janti Bordoloi Patgiri, 49, a resident of Nizagerua village in Assam’s Morigaon district has lived with HIV for more than two decades. She was diagnosed in 2001, after contracting the infection from her husband, who was a jawan (soldier) in the Central Reserve Police Force. He died within a year of the diagnosis.
As a surviving family member, she was to get a job with the paramilitary force as compensation. “Despite meeting every criteria, I could not pass the medical test and got rejected,” she said.

Her family members and villagers began to distance themselves and left Patgiri to raise her six-year-old daughter on her own, she said.

When Patgiri was diagnosed, awareness about HIV was extremely limited, and conversations around mental health were almost non-existent. She admitted that she didn’t have the vocabulary to express or understand her mental health breakdown.

Better mental health awareness

Anand, who is 34-years-old now, said he often sees himself trapped in the room he was forcefully confined in. “I still get disturbed sleep and, sometimes, horrible dreams,” he said.

Such cases are handled in a very delicate way, said psychologist Goswami. “We counsel them for a minimum of two or three times a week,” she said. Peer group counselling, where other patients of the same age share their stories, helps them to overcome trauma, she added.

But some cases are quite challenging. In April 2025, Veena tried to hang herself. Her neighbours heard a commotion and rushed in to save her. The 22-year-old is a transgender woman who was diagnosed with HIV in November 2024.

Growing up in Tezpur, about 180 kilometers north east of Guwahati, Veena was constantly called names and taunted because of her appearance, she said. “I have faced stigma and discrimination my whole life.”

At 18, she fled to Guwahati in search of a job, which seemed to elude her. With no income and no one to support her, Veena said she ran out of options. She became a sex worker as a “last resort.”

She worked until one day her HIV status changed. “The diagnosis broke me completely,” she said. “I thought ending my life would be the best option.”

Turning tides

Compared to adults, adolescents and youth between the age of 13-25 years go through more mental trauma because of the hormonal changes they undergo at that age, said Goswami. But, with Veena, the burden was twice over.

Pre-test counselling is very important, said Bhavna Sharma, a psychologist who works with transgender and queer communities, so that patients do not panic or feel terrified if the result turns out to be positive. Most people she works with are aged 18–25.

“Many communities I work with have been struggling since childhood,” she said. “Mental trauma becomes a part of their life from a very young age, and HIV adds to the pile,” she added.

Manab Surya Das of the Assam State AIDS Control Society said the HIV and AIDS (Prevention and Control) Act 2017, at least, offers legal assistance to those who are being discriminated against. Under the law, individuals cannot be forced to disclose their HIV status, except by court order. It also establishes a grievance redressal mechanism, appointing an ombudsman in every state to handle complaints.

Patgiri of Morigaon has been a witness to the changes in attitudes over the years. In January 2004, she began seeing an AIDS counsellor. With consistent support, she said, she slowly began to rebuild her confidence and overcome fear. In 2009 she became an Accredited Social Health Activist (ASHA) supervisor overseeing 11 villages in Morigaon district.

In addition to ensuring basic health needs of the people in the villages, “I spread awareness about HIV,” she said.