Indonesians open up about the impacts of long COVID, one year since the country’s first case

08-Mar-2021 Intellasia | ABC | 7:25 AM Print This Post

Juno Simorangkir was supposed to leave the emergency COVID-19 hospital in Jakarta after he tested negative, but his journey with COVID-19 didn’t end there.

Simorangkir experienced COVID-19 symptoms 11 days after Indonesia announced its first case on March 2 last year.

After almost two months of hospitalisation and isolation, he thought his health would go back to normal, until his body “became suddenly limp” and he nearly fainted.

“My [stamina] dropped and when I was about to eat, I could feel my body flushing, shivering… my heart pounding until I couldn’t sleep and I felt a piercing sensation all over my body,” he told the ABC.

After being released from hospital, he tried to find some clues about his condition and stumbled upon a patient-led group of COVID-19 survivors.

It was here that Simorangkir learned about long COVID, an illness where people who have recovered from COVID-19 still report lasting effects.

“If I tell my story to healthy people, they will empathise, but how much do they know about the condition? How much do they understand what it feels like?”

This thought spurred him to create a community called Covid Survivor Indonesia (CSI) on social media.

The group has more than 6,000 followers on Instagram and over 1,800 followers on Facebook since its creation in January this year.

They have received hundreds of questions about long COVID, as well as messages from survivors reporting discrimination.

He said survivors had reported being fired because they were no longer considered productive, while many were still considered infectious.

Others saw their pay cut or said they were not paid by their employer because they needed a long time off work for treatment.

Losing work over long COVID

Long after testing negative, Daulat, who asked to be only known by his first name, said he continued to suffer the lasting effects of COVID-19 and lost work because of it.

At one point, Daulat, a content maker, could only complete half of his daily target at work.

“Usually from 7:00am to 10:00am, I could rewrite five articles, but at the time, I couldn’t even remember why I opened my laptop,” he said.

“I often got a headache and couldn’t even decide what words I wanted to use.”

Daulat said he was asked to rest for a month and a half, but when he was ready to return to office, he said he was let go.

Up to October last year, more than 6.4 million Indonesians had either been stood down or were fired due to the pandemic, according to data from Indonesia’s Chamber of Commerce and Industry.

A Ministry of Manpower survey released last month showed 17.8 per cent of companies had fired their workers, 25.6 per cent had stood down their workers, and 10 per cent had done both.

Daulat said he received a compensation fee, but he was still under financial strain as he had to provide for his wife and three children.

But there’s been a psychological toll as well — he said he often “felt useless”, although his neighbours had been a source of support.

“Almost everyone was supportive, although there are one or two people who would avoid walking in front of my house and chose to cross the street,” he said.

Simorangkir often receives messages about survivors being avoided by their neighbours.

“I told them it’s good that they are keeping their distance… today’s situation is not normal, so if they distance themselves, just let them be.”

‘We can’t go back to the way we were’

Marking the anniversary of the first case in Indonesia this week, the Indonesian Doctors Association said as many as 21 per cent of recovered patients will experience long COVID.

However, based on a survey of 463 people conducted by Dr Agus Dwi Susanto, a pulmonary specialist and the chair of the Indonesian Society of Respirology, the number is much greater.

“We conducted a study on long COVID-19 patients in Indonesia from December to January 2021, and our initial findings showed that 63.5 per cent of the entire population we surveyed had long COVID symptoms,” he said.

The symptoms can include persistent fatigue, headaches, shortness of breath, and coughing.

Dr Susanto said his patients had also reported “marked limitation of physical activity, and inability to do regular activities like they used to do before they had COVID”.

“Thus, they may have recovered from the infection, but they have not recovered functionally,” he said.

To this day, Simorangkir still experiences long COVID symptoms, like phantosmia — a condition that causes people to smell something that isn’t there — swollen lymph nodes, ringing in his ears and pain in his urethra.

“We shouldn’t be fixated on recovery… [because] like all my fellow survivors said, ‘We can’t go back to the way we were,’” he said.

Using recovery rate as a parameter of success is ‘problematic’

Dr Dicky Budiman, an epidemiologist from the Centre for Environmental and Population Health at Griffith University, said the term “recovery” among COVID-19 patients had epidemiological, social and clinical definitions.

“From a clinical aspect, we know that there are a number of long COVID cases [in] which the long-term impact is still unknown,” he said.

“And when there are people who have tested negative and yet are not allowed to work or do their activities as usual because of the stigma, the social aspect of recovery is not fulfilled.”

Indonesian President Joko Widodo has lauded the country’s COVID-19 recovery rate, as total cases rise above 1.3 million, with more than 36,000 deaths.

“The average recovery as of March 3, 2021 [in] Indonesia is at 86.18 per cent. The world average is at 78.93 per cent. This means that we are better than the average world recovery rate,” he said.

However, according to Worldometer, the world’s recovery rate is 97 per cent, meaning Indonesia’s recovery rate is lower than the world average.

The ABC has asked Indonesia’s National COVID-19 Task Force where Widodo got the world recovery figure.

But Dr Budiman said using the recovery rate as a parameter for success in handling COVID in Indonesia was “problematic”.

“Referring to the recovery case is scientifically inaccurate because it is not based on scientific operational definitions,” he said.

“Hence it would also be misleading in the pandemic control strategy, which creates a false sense of security.”

Indonesia’s national COVID-19 Task Force spokesperson, Professor Wiku Adisasmito, said their definition of recovery followed WHO standards.

“We cannot deny that there are very many determinants of a person’s recovery status, but for now the standards used are based on many findings in the field and have been through various reliable studies,” he said.

Simorangkir doubts he’ll ever get back to the level of health he enjoyed before.

But Dr Susanto is optimistic about the possibility of long COVID patients fully recovering.

“There was a patient who had a pulmonary function value of around 48 per cent, had difficulty walking [and] speaking because of shortness of breath,” he said.

But after two months of treatment and medication, he said their lung capacity rose to 78.9 per cent, close to the normal level of 80 per cent.

He said it wasn’t a guarantee, but there were studies that showed a majority of patients could fully recover from long COVID.

“But unfortunately, we don’t have the data yet on Indonesia.”


Category: Indonesia

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