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‘A lottery who ends up in hospital’: Australian Covid survivors speak out

Mark* did everything right.

He followed public health measures, and as someone who works in health promotion, he was fully vaccinated against Covid-19 by the end of April, having booked in as soon as he became eligible. The 26-year-old, who lives in the Canterbury-Bankstown area in Sydney’s south-west, wore a mask, washed his hands and kept his distance.

But last Saturday, despite having no symptoms, he tested positive to the coronavirus, having acquired the Delta variant spreading in Sydney, with cases growing particularly in his local government area. He has no idea how he caught it.

“It really has highlighted for me how fleeting the transmission can be,” he says from his apartment where he is quarantining with his partner.

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Related: Will Sydney’s Covid lockdown work and how different are restrictions to Melbourne’s ‘ring of steel’?

“It is a bit frustrating to have caught it despite all the measures I took, but I also know there’s nothing more I could have done.”

Because Mark lives in a high-risk area, he is required to undergo Covid testing every 72 hours. On Friday, he returned a negative test. On Saturday, his partner, who he lives with, had symptoms of a cold. Though Mark had no symptoms and had been tested hours before, he went along with her to get a Covid test.

She tested negative, but to Mark’s surprise, he was infected. His partner has continued to return negative test results, and because their apartment has two bathrooms and two bedrooms, they have successfully been able to isolate separately in the same home. The New South Wales Department of Health has offered Mark accommodation in a hotel, but no rooms are yet available given the high demand.

Mark says he has no doubt it is his fully vaccinated status that means almost one week into his diagnosis, he still has no symptoms and does not seem to have passed it on to anyone, not even his partner.

Health workers administer Covid tests at a drive-through testing clinic at Fairfield in Sydney.
Health workers administer Covid tests at a drive-through testing clinic at Fairfield in Sydney’s south-west in July. Photograph: Dan Himbrechts/AAP

In many ways, Mark’s story illustrates so many of the key messages health experts have been repeating about Covid and especially the Delta variant. Young people are susceptible. Vaccinated people can still catch the virus, but it protects significantly against severe infection and death, and likely offers strong protection against passing the virus on. Delta is highly infectious and spreads more readily than others, so much so that in come cases it is difficult to detect where transmission occurred, even with strong contact tracing.

But he feels luckier than most. Mark has been able to take time off work to quarantine, has a housing situation that allows him to isolate quite easily, and he can afford grocery delivery even though the wait time is more than one week. In a pinch, he has friends who do not need to travel far to drop urgent supplies – such as food for his cat – outside his door.

But he says others in lockdown have no choice but to live with multiple family members in small apartments, or to continue to work in essential jobs despite the risk of contracting Covid.

“I feel I haven’t received anywhere near the amount of stigma and shaming that a lot of other people are experiencing, especially people that are really vulnerable workers that really have no options but to work,” he says.

“There is this narrative that they are breaking restrictions and are a higher infection risk, but it’s the risk they’re having to take often because of how dire their needs are and how limited the opportunities are for them to be supported outside of having to take those risks.

“I think the spread in the locked-down LGAs is absolutely a symptom of the lack of access to resources, and the lack of access to secure work. The sort of disadvantages of the area were inherent to begin with and those factors don’t exist in a lot of the higher socioeconomic LGAs like Bondi.”

The sickness is very real. It’s not something made up

Yoga, 43

Yoga, who lives in Melton, Victoria, experienced stigma during the pandemic in a different way. Months after he left the intensive care unit after becoming severely unwell with Covid, some of his friends refused to meet up with him because they believed he might still be able to spread the virus. Yoga caught the virus in August during Victoria’s second wave.

“We need education about the reality for people who have survived it and to get the message out that they don’t keep passing it on,” he says.

“Once restrictions lifted and I was better, I reached out to a few friends and family to gather and celebrate with after the difficult year, and some just refused, saying: ‘Oh no, you’ve had Covid.’”

It took one week for his positive test result to come back to him, which also meant there was a delay in his being assessed by a health professional.

Yoga, who is 43, had no underlying health conditions when he caught the virus. He was fit, having taken part in cycling events more than 200km in distance. Despite this and his young age, he suffered with Covid badly. He developed a pulmonary embolism, a dangerous condition where a blood clot gets lodged in an artery in the lung, blocking blood flow. He spent three weeks in intensive care. He struggled to breathe, and doctors have told him his lung capacity will never be the same.

Related: ‘Health systems should be prepared’: doctors brace for tsunami of long Covid

Covid-19 is something Yoga never wants to experience again and still fears, so when vaccination opened to his age group, he signed up right away and he has now had two jabs. Even so, he continues to take precautions, knowing he can still potentially catch the virus again and pass it on, though he hopes at least it will make spread more difficult and symptoms less severe.

“Life has not gone back to normal for me. I am still a lot more cautious as to where I go and what I do – and also who I spend time with,” he says.

“I still can’t believe that we are still in this situation, or in a worse situation, than one year ago. Just with so many exposure sites and cases still, especially with what’s happening in Sydney where triple-digit numbers are just increasing. It is why I am just so for vaccination, it is something else you can do to protect yourself and the people around you. The sickness is very real. It’s not something made up.”

When Derek Young and his wife Gabriela Domicelj caught Covid in March 2020, they were among the first Australian cases. The couple were sick at a time when there was no vaccine or even any certainty about the best way to treat those who became worse.

Young, 55, was extremely fatigued, sleeping for 20 hours or more a day, and experienced severe shaking, brain fog, muscle pain, hallucinations and hot flashes. He spent a short time in hospital with pneumonia that required antibiotics. He continues to suffer from the effects of having had the virus, including exhaustion and an inability to maintain the level of activity he was used to pre-Covid. But despite suffering from mild asthma, his experience of Covid was nowhere near as severe as his wife’s.

Domicelj, who is the same age and who was healthy at the time with no underlying health conditions, had very different symptoms. She was agitated, fidgety and could not get any rest. She deteriorated rapidly, and was admitted to the hospital’s intensive care unit after developing a different kind of pneumonia unique to Covid-19, which antibiotics are ineffective at treating.

It seems to be a bit of a lottery as to who ends up in hospital and ultimately who ends up dying, and who doesn’t

Derek Young

Both Domicelj and Young are now enrolled in a study led by St Vincent’s hospital in Sydney that is examining the long-term effects of Covid. Domicelj’s symptoms remain particularly severe. At one point, she took a piece of white paper and began listing the symptoms she continues to suffer in colourful texta as a way of keeping track: “hair falling out”, “swollen ankles”, “shortness of breath”, “lung scarring” and “high blood pressure” are among the dozens of ailments.

Both have now been fully vaccinated, and they believe the jab has helped alleviate their long-term symptoms. According to researchers from Yale University in the US, as many as 30 to 40% of those with long-term symptoms who get the vaccine have reported improvements.

“I’ve got three kids,” Young says. “And unfortunately, it’s difficult for them to access the vaccine because of their age. But as much as possible, I am saying to them that when it’s available, go out and get it because the risk is not worth the risk.

“The risk of having some reaction to the vaccine is small compared to the risk of getting Covid. And as our experience shows, it’s just not worth it to risk getting Covid. And it seems to be a bit of a lottery as to who ends up in hospital and ultimately who ends up dying, and who doesn’t. We don’t yet fully know why some people experience much more suffering than others.

“So just don’t wait around. Get vaccinated.”

*Name changed to protect identity