22 year old Nika arrived at her local health center in Indonesia’s South Sumatra province for a routine check up related to her pregnancy. During the examination, the staff never told her that they would also be conducting an HIV test. After her examination, Nika was asked to wait.

Hours passed. Other patients came and went while she sat in the lobby, unsure why she had been kept. When she was finally the last person in the clinic, just before closing, the staff told her the news. She had tested positive for HIV.

This sudden revelation upended Nika’s life. In Indonesia, an HIV diagnosis is more than a medical matter; It carries a social stigma that ruins lives and drives a cycle of late-stage diagnosis, preventable transmission, and inadequate treatment. Najmah (who like many Indonesians goes by one name) is a visiting research fellow at Leiden University researching HIV and social stigma in Indonesia. Over a decade of field work, she has seen firsthand the devastating effects the disease and attitudes towards it can have on women's lives.

Expelled

‘She was put in contact with Nika four years after her diagnosis. One of the [midwives] that work in the center was a neighbor of Nika’s,' Najmah recounted. She said ‘the midwife spread rumors about the HIV status of Nika.' These rumors were more than unpleasant murmurings in the background. ‘Nika and her family were expelled from the village because of this issue,’ Najmah said.

Women disproportionately bear the burden of HIV stigma. ‘Within the patriarchal structures we are raised in in Indonesia, particularly in Sumatra, the woman is always the first to be blamed,’ Najmah reflected. ‘They think that we are female sex workers,’ Najmah remembers being told.

The stigma is not limited to the community, certain healthcare workers are guilty of perpetuating it too. When women disclose their HIV status ‘sometimes they will not get proper or respectful healthcare,’ according to Najmah. 

Harsh judgement

Najmah acknowledged that while the government has made significant strides in training healthcare professionals to treat HIV patients, cases like Nika’s prove that much more work is required. ‘It’s a long journey to provide respectful health services,’ Najmah said, ‘because it's about your heart, and about cultural and religious teachings.’

She wishes certain healthcare professionals would treat their patients without making inferences about the reasons why they have HIV. They add to the discomfort already caused by the harsh judgement of others. 

‘You are a bad person. You are not a good mother. You have been unfaithful,’ Najmah said, listing the insults and accusations hurled at women, many of whom have gotten HIV from their husbands.

The stigma is rooted in the sholeha ideal, which expects women to be pious and deferential. ‘It’s not only a teaching in the mosque. Instagram influencers now describe how to be sholeha, how to obedient to your husband and do domestic work,’ Najmah said. She explained ‘your neighbors measure you as sholeha, your friends measure you as sholeha. It’s not just private matter between a woman and God.’

The ‘paradox,’ as Najmah defines it, arises as these women who most closely adhere to the sholeha ideal are also among the most vulnerable to infection. ‘A woman’s virtue becomes a barrier to her own survival,’ Najmah said.

So how do women that embody this ideal get infected? ‘Your husband might have sex unprotected with men or other women. He might have a relationship with female sex workers or have a history injecting drugs,’ according to Najmah. The HIV rates are so high among sholeha housewives because they are often discouraged from questioning their husbands. ‘Silence is seen as a sign of a good woman,’ Najmah said. 

Najmah advocates for what she calls ‘social surveillance.’ This is a community based vigilance approach that encourages women to be proactive about their health by discussing their partners' sexual and drug-use histories to determine if preventative HIV testing is necessary for the couple. Najmah recommends that if a woman cannot speak directly to her partner, she should reach out to others who know them and might have relevant information.

Mouth ulcers

49 year old Bonita found out she was one of multiple wives only after her husband's passing from HIV. ‘The husband’s family only said that he passed away because of lung cancer,’ Najmah said. Bonita only found out she had HIV two years later when she went to the hospital for mouth ulcers. 

Bonita and Nika are just some of the thousands of Indonesians who learn about their HIV-positive status each year. ‘Nowadays we see more than 30,000 new cases each year,’ Najmah said. ‘The number of new cases has tripled compared to the last two or three decades,’ she said.

To better understand how HIV affects families and to reach women hidden by shame, Najmah turned to Feminist Participatory Action Research. This approach is based on building trust with the HIV positive women who are part of the study, emphasizing the intersectionality of issues affecting them and working to make a meaningful impact in their lives. 

"I learned how building trust is important," she says of her research style. It’s "not just about data collection. To provide them with a safe space. I ask them through which method do you like to express yourself,’ Najmah said. She asks participants ‘Do you want to make a drawing? Make a drama? Have a discussion group?’ Women living with HIV are able to tell their often silenced stories through workshops like these.

Immoral

The Indonesian Ministry of Health’s HIV-AIDS Working Team estimates that 564,000 people are currently living with the virus nationwide. However, Najmah remains skeptical of these official figures. ‘It seems like an underestimate. Because not all people have access to HIV tests.’ she said. A vast number of undiagnosed cases remain hidden beneath the surface of public awareness. ‘It is like the iceberg phenomenon.'

The researcher pointed out a two-fold barrier: a lack of universal access to diagnostic tools and the crushing weight of social stigma. Even those with the means to get tested often hesitate. They are afraid of other people in the community ‘who will think that they are immoral people because they took the HIV test.'

Nika had been living successfully with HIV for years. Then the pandemic arrived, giving her a new reason to be afraid of hospitals. She delayed seeking care until it was too late. 

The long fight against HIV starts with education, overdue conversations and destigmatization. For people like Nika ‘We need to be aware because we need to protect ourselves and our children.'

By Ven Černjul