Melbourne teacher Caroline Hewson's household was hit by COVID-19 in January, when Victoria saw a massive spike in Omicron infections.
While her sons and husband recovered reasonably well, Ms Hewson did not.
"It ended up that I missed an awful lot of work and of life full stop," she said.
Debilitating fatigue, breathlessness and a brain fog descended and remained for months, causing major disruption for the usually active 42-year-old.
"I would walk up the stairs at our house, and I would have to sit down, I couldn't even make it into a bedroom ... I'd have to sit at the top step and recover," she recalled.
In her job as a primary school teacher specialising in literacy intervention, Ms Hewson's voice is critical.
But during months of long COVID, her voice lost all its power, and she was struggling to parent, let alone work.
While she was supported by her workplace to get better, she felt "terribly guilty" about the students she wasn't able to support.
She also burnt through nearly all of her sick leave.
'It just became old news'
Doctors were supportive, but they too were learning about the condition and couldn't offer much more advice than rest and plenty of fluids.
As someone used to running not only her life but those of her young children, Ms Hewson found the extended illness difficult to accept, despite the support of those around her.
"It did feel like as time went on, it just became old news," she said.
"What do I keep saying? 'Yeah I feel like crap' ... I started lying and saying 'yeah feeling OK' and pushing through work ... because I was so sick of being sick and just sick of it all."
Ms Hewson reckons she's clear from long COVID now. But it was a slow journey.
"It was almost like I was going up 1 per cent every day or two, in terms of feeling better," she said.
"It wasn't like I woke up one day, I have heard some people say you just wake up one day and you go 'ah, I'm better'.
Even now, she still feels like a "human guinea pig", unsure if her illness will have lasting effects on her brain or body.
Australia isn't tracking long COVID cases in real time
While we know Ms Hewson's experience is far from isolated, there are no official figures being calculated on how many Australians are experiencing long COVID at any given point in time.
Several states and territories have set up long COVID clinics and can report the patients being treated there, but many people with long COVID are being treated by GPs and recovering in the community.
It's a figure health economist Martin Hensher tried to figure out earlier this year.
The University of Tasmania researcher was part of a team that drew on a range of data to produce an estimate of the number of Australians with long COVID in the aftermath of the first Omicron wave.
Accounting for the significant number of unknowns, it suggested it was likely tens of thousands — and in worst-case scenarios more than 300,000 — Australians would grapple with long COVID symptoms for at least three months this year.
Professor Hensher said while he hadn't had a chance to revise those calculations to factor in the subsequent waves of infections, "in very crude terms ... I'd expect our estimates to double".
"So I'd be saying, I would have thought currently and in recent months, many tens of thousands of Australians definitely will have had long COVID," he said.
"And you know, possibly in a worst case, maybe half a million people might have long COVID for three months.
"Then those numbers will steadily come down over time but ... I think we're still probably looking at likely tens of thousands of people who might still be sick with long COVID a year after their initial infection."
More of us are searching for long COVID symptoms online
While numbers aren't being tallied, doctor Nirvana Luckraj is in some position to gauge the interest among Australians for information on long COVID.
She's the chief medical officer at the government-funded healthdirect service, which provides free medical advice online and over the phone.
"There's been a huge increase in the number of people seeking trusted information about long COVID since March this year," Dr Luckraj said.
"We're seeing around 100,000 people a week, visiting our long COVID and recovery information on our website."
She said around 10 to 20 per cent of those who had had COVID may experience a post-COVID condition of some kind.
Recent research out of the United Kingdom suggests Omicron poses a slightly lower risk of long COVID than Delta, but the researchers noted the high volume of Omicron cases meant there were more long COVID cases overall due to the Omicron waves.
The most common symptoms are fatigue, coughing, shortness of breath, memory difficulties, confusion, joint or muscle pain, anxiety or low mood, and insomnia and poor sleep.
"Studies have identified that patients who are at higher risk of post-COVID-19 conditions are those that have experienced a more severe illness, including one requiring intensive care," Dr Luckraj said.
"And those who have other existing chronic illnesses such as respiratory disease, diabetes, hypertension, also, those who are of older age, and females seem to be more likely to get long COVID or a post-COVID condition as well."
Doctors are urging those at greater risk to discuss with a GP if they are eligible for new anti-viral drugs and set up an access plan so they can get them within five days if they become infected.
Dr Luckraj said GPs were becoming better equipped to support people like Ms Hewson, but the simple advice to rest remained key.
"The advice really is to pace yourself, not to push yourself to exhaustion, to break up your daily activities into smaller, more manageable tasks," she said.
"If you're doing your gardening, food shopping, laundry ... spread it over the week, so that you get rest in between and ask family members or friends to help you.
"And prioritise tasks: only do essential tasks and activities, with family support, if required."
Long COVID is likely to cause ongoing disruption to the economy
In addition to the pain and hardship borne by those with long COVID, overseas examples suggest the condition will also disrupt the economy.
Professor Hensher pointed to recent comments from the governor of the Bank of England, who last month told UK politicians an increase in long-term sickness was putting the brakes on the economy's recovery from the pandemic.
"And they felt that the single biggest factor driving that was increasing numbers of people with long-term sickness ... they believe the most likely explanation for that was long COVID," he said.
"So they're actually saying it's long COVID directly driving labour shortages across the United Kingdom."
Professor Hensher said coming to grips with the policy implications of long COVID was one of the reasons it should be more closely studied.
He is urging authorities to undertake the kind of surveys that have enabled the UK to keep closer tabs on long COVID prevalence.
"We really do need to have real-time surveillance of what is going on with long COVID, but also with disability and long-term illness in the labour market," he said.
By the end of this year, the Australian Institute of Health and Welfare aims to have a national dataset that brings together the different COVID-19 case data.
That includes data around deaths, hospitals, aged care and immunisation and will help further research on the medium and long-term health effects of COVID-19.
But Professor Hensher said a simpler household survey was needed now.
"The GPs clearly are getting more concerned about the level of work that is presenting in general practice on this," he said.
"We really do need to listen to that ... what sort of support do people need through the healthcare system?"
