Indonesia’s first 3 COVID-19 patients open up about online hate and stigmatisation
By Kiki Siregar
10 Apr 2020 06:25AM (Updated: 10 Apr 2020 06:30AM)

JAKARTA: "Because of you, my wedding is now cancelled," said one social media post.
"Because of you, my graduation is cancelled," said another. 

There was also another post that said: "Because of you, I lost my job."

These negative messages were among the many that Sita Tyasutami received since last month. She also got death threats.

The 30-year-old is known in Indonesia as Case 01, the first person who was tested positive for COVID-19 in the country.
 
She has since recovered from the illness, but hate messages are still appearing in her social media accounts.

“They still get me sometimes,” she told CNA during a phone interview on Monday (Apr 6).

Tyasutami, who is a professional dancer and an independent performing arts manager, was declared positive on Mar 2, after being sick for some days.

When President Joko Widodo broke the news on that Monday morning that the country had its first two COVID-19 cases, Tyasutami did not even know that she had the disease.

Although she and her mother Maria Darmaningsih, who became known as Case 02, were already warded in separate rooms at Jakarta’s Infectious Disease Hospital Sulianti Saroso, it never crossed her mind that they both had COVID-19.

Tyasutami’s older sister Ratri Anindyajati, who is an independent producer and arts manager, was the one who broke the news to her mother.
“Ratri called me. She was so nervous,” Darmaningsih, 64, recounted.

“I turned on the TV and I saw the news about Mr Jokowi announcing the country’s first two COVID-19 cases. I was like: 'Oh my goodness' ... I felt so broken."
A nurse was coincidently in Darmaningsih’s room when Anindyajati called.

But she couldn’t verify whether Darminingsih and her younger daughter Tyasutami had COVID-19.

MEDIA FRENZY AT THEIR HOUSE
Mr Widodo did not mention the names of the country’s first two COVID-19 cases. But within minutes, messages started to circulate on Whatsapp indicating Tyasutami’s and Darmaningsih’s initials. Their health records and complete home address were also made known.
A few hours after Mr Widodo made the announcement, the health minister also held a press conference revealing details and the medical history of Case 01 and 02. What was announced matched the profile of Tyasutami and Darmaningsih.

“I asked a nurse who was visiting me in my room whether there were other patients currently warded at the hospital,” said Tyasutami.

“The nurse said no. So it must be us the president was talking about!” Tyasutami recounted.

At that stage, the nurses said they had no details on what was going on.

Tyasutami and her mother later found out that it is the protocol in Indonesia that during a specific disease outbreak, the president must first be informed before the patients are made aware.

The day did not unfold well, according to Tyasutami, Darmaningsih and Anindyajati.

A flood of messages filled their handphones, asking them various questions.

Journalists flocked to their house in Depok city, on the outskirts of Jakarta, while health officials raced to disinfect their house and test everyone living there, including Anindyajati.

The 33-year-old artist actually resides in Vienna, Austria, but she has been in Indonesia since February for professional and family matters.

ALL THREE TESTED POSITIVE FOR COVID-19  
Just like her younger sister and her mother, Anindyajati was ill towards the end of February.

All three of them had been suffering from a combination of complaints such as itchy throat, fever and joint pain.

But Anindyajati quickly recovered and took her mother and sister to a local hospital in Depok on Feb 27.
Tyasutami was originally diagnosed with bronchopneumonia and Darmaningsih with typhus.

They were both hospitalised. Tyasutami later heard from a friend that she had attended the same dance event as a foreigner. The latter later went to Malaysia and tested positive for COVID-19.

Tyasutami did not know the lady but she immediately thought that she should be swabbed for COVID-19.

She and her mother were then transferred from the hospital in Depok to Jakarta’s Infectious Disease Hospital Sulianti Saroso.

Once officials knew Tyasutami and Darmaningsih were COVID-19 positive, Anindyajati also underwent a swab test.

Her result was also positive. She was warded at the same hospital on Mar 5 and became known as the country’s Case 03.

ROAD TO RECOVERY
“Clinically, our symptoms were mild. Maybe out of everyone, I had the worst symptoms,” Tyasutami said.  

“When I was hospitalised, I only had a cough. It was a bad cough ... But when I was told I was positive and with all the stigma surrounding me, I was so stressed. My health got worse in the first few days."

People bombarded her social media accounts, sending nasty messages and blaming her for bringing the disease into the country. She set her accounts to private mode.

“I had high blood pressure ... up to the point when I could hear and feel my heart beating. It was so loud and fast. I started to vomit ... so it was really stressful,” Tyasutami recounted.

All three of them didn’t have any underlying conditions and they were generally fit.

“How did I recover? I just tried to be happy, which was very difficult at first. But then Ratri, my mom, my whole family, my friends, and even friends whom I haven’t seen in 15 years were all supporting me."

"And then my photos were being circulated ... Ratri said because we had quite a few followers, let’s make positive campaigns. 'I’ll make the wordings, you just need to repost',” said Tyasutami who is also a dance teacher.   

SUPPORT FROM FRIENDS AND FAMILY
They started to share positive messages on social media. They also replied to messages from people who wanted to know what their symptoms were and other questions relevant to COVID-19.  

Both sisters were in separate rooms. However, as the rooms were on the same hallway, they could see each other.  

They kept themselves busy by exercising and practising yoga. Tyasutami even did handstands and was warned by the nurses who monitored them on the CCTV to be careful.

The three of them also wore a bit of makeup to feel better. They meditated together online, together with their families who live in other cities.
Meanwhile, Darmaningsih continued to dance in her isolation room.

Family support was the most important factor to recovery, she added.

On Mar 13, Tyasutami and Anindyajati were discharged.

The two sisters were happy, but worried at the same time.

“I felt bad because I didn’t want to leave mom behind,” said Anindyajati.

Three days later, Darmaningsih could finally go home.

The experience has made them more health-conscious.

They try to drink more water and Darmaningsih, who is the founder of the Indonesian Dance Festival, tries to rest more.  

Since everyone is encouraged to stay home, the sisters are trying to spread positive campaigns to counter the hate messages which they are still receiving.

They have been approached to join fundraising campaigns for COVID-19 causes. Some people are also seeking emotional support from them.
“When the positive campaigns started, we had people who were so encouraging. They were telling us that listening to our stories made them feel very calm," Anindyajati said.

“We just keep going because we know we’re all in the same boat."
Source: CNA/ks