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For some Indonesians, COVID-19 stigma worse than disease
A recent survey by the LaporCOVID-19 (Report COVID-19) community found that stigma surrounding COVID-19 patients and survivors had persisted six months into the outbreak.
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People wearing masks to prevent the spread of COVID-19 sit in a park in Jakarta on Aug. 22. (REUTERS/Ajeng Dinar Ulfiana)
COVID-19 has not only strained the health of many survivors but also their relationships with friends and neighbors.
A 24-year-old survivor of the illness in Surabaya, East Java, who asked to be identified as Ayu said some of her colleagues greeted her coldly when she returned to work from a month of self-isolation and a hospital stay in late July.
Ayu, who works at a bank, said some of her colleagues appeared to be avoiding her, and she noticed that some were no longer asking her to eat lunch with them. She felt like an outcast. One of her senior male colleagues indirectly accused her of infecting several other employees, including himself.
"I now realize who my true friends are – [not] people who are there only during good times [but] those who stick with you during both good and bad times," she told The Jakarta Post.
Ayu’s experience is not unique. A recent survey by the LaporCOVID-19 (Report COVID-19) community, in collaboration with researchers from the University of Indonesia (UI) faculty of psychology, found that stigma surrounding COVID-19 patients and survivors had persisted six months into the outbreak.
The survey was conducted from Aug. 7 to 16 and polled 181 respondents aged 18 and above who had tested positive for, had recovered from or were suspected to have COVID-19. Half of the respondents were medical workers.
The study found that 55.25 percent of respondents had become the target of gossip, 33.15 percent had been shunned and 24.86 percent had been treated as virus spreaders or carriers.
The survey showed that 9.39 percent of respondents had been bullied on social media, 4.42 percent had been rejected from public facilities, 4.42 percent had not received assistance, 3.31 percent had been expelled from their homes and 0.55 percent had been laid off.
After recovering from COVID-19, 4 percent of respondents said they were treated by the public worse than they had been treated during the illness and 14 percent said they were treated just as poorly.
Ayu tested positive in mid-June, after she lost her uncle to COVID-19. She eventually lost her aunt as well, who died in an intensive care unit.
Not long after her test came back positive, Ayu's neighborhood unit (RT) head shared documents revealing not only her family's COVID-19 statuses but also their full names and ID card numbers on a neighborhood WhatsApp group.
Her cousin, who had also tested positive and was staying with her grandmother in a nearby neighborhood, was accused of breaching self-isolation one evening to go on a date with her boyfriend.
"The man and woman that the neighbors saw that night were actually my mother [who had temporarily moved to the house to take care of Ayu’s grandmother] and her brother [who lives there],” she said. “They had to go to the hospital to sign papers to get my aunt on a ventilator as soon as possible.”
Some experts have said that the stigma of COVID-19 in Indonesia is as bad as that of HIV/AIDS. The opprobrium has exacerbated the country’s persistent struggles with containment, testing and tracing of the virus as many people are reluctant to ascertain their true statuses. A significant share of the country’s cases are believed to remain undetected.
Read also: Stigma, precarity deter Indonesians from getting tested for COVID-19
"Six months into the pandemic, [the stigma] persists. I imagined that after the first three months, it would subside, but it hasn’t," said urologist Akmal Taher, a member of the national COVID-19 task force’s expert team.
In February, before Indonesia had reported any confirmed COVID-19 cases, residents of Natuna, Riau Islands, protested the government's decision to use a facility on the island to quarantine Indonesians returning from Wuhan, China.
A month later, Indonesia's first two confirmed cases suffered privacy breaches and were the targets of false reports. One of the two described the ordeal as mentally draining. Some people suggested that the patient's profession had caused her to contract the virus.
Health Minister Terawan Agus Putranto announced after the discovery of the cases that the female patient was a dance teacher and had danced with a Japanese citizen at a club. The minister said the Japanese citizen, who later tested positive, was a close friend of the patient. Following the minister’s statement, the patient faced rumors that a Japanese man had “rented” her. She clarified that the Japanese citizen was actually a woman and that she did not know the person well.
Read also: Privacy breach, fake news take mental toll on Indonesia's first COVID-19 cases
Siska Verawati of the Center for Indonesia's Strategic Development Initiatives (CISDI), which has sought to empower community health centers (Puskesmas) in Jakarta and Bandung, West Java, during the outbreak, said that in certain areas, the stigma stemmed from RT management and heads themselves.
Amplified by misinformation and an incomplete understanding of COVID-19, Siska said, the stigma had disrupted tracing and testing efforts because people were often dishonest about their symptoms.
She said the government's constantly changing COVID-19 policies had created further confusion.
"Puskesmas workers are indeed frontline health workers. But to break the chains of transmission, communities should come together and be on the front lines to fend off stigma. There should be good narratives that COVID-19 is our common enemy and that it's real,” Siska said.
"Something that's missing from [the government's] public communication are the voices of people who have experienced [COVID-19] – emotional messages that are [...] based upon real facts and the voices of those who have tested positive and been stigmatized," said UI social psychology researcher Dicky Pelupessy, who was involved in the LaporCOVID-19 survey.
Dicky urged the government to create localized but standardized public communication initiatives that targeted people of all backgrounds and provided accurate information that was easy to understand.
Akmal of the COVID-19 task force acknowledged that there was not yet a specific strategy to tackle the stigma surrounding the disease. He cited the limited number of studies on Indonesian public perception of the disease.
He claimed it was not that the government was inconsistent with its messaging but that new evidence and studies were continuing emerge so policies had to be adjusted periodically.
But he believed that certain public communication strategies were urgently required to facilitate tracing. He suggested that such efforts start with communities and said the task force would help with the funding.
