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More Australians are looking for help with long COVID. But we’re not tracking the numbers

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 specializing 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 run 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.”

Caroline Hewson is dressed in a pink jumper and jeans as she picks lettuce from a planter box.
During the height of her long COVID symptoms, Ms Hewson was unable to enjoy her usual activities like gardening.(ABC News: Joseph Dunstan)

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.

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