Sonya Heaney was told she had recovered from COVID back in September, several days later she woke up in the ICU with organ failure and continues to suffer the effects today.
Ms Heaney can now only go for five-minute walks, has 36 per cent organ function and feels extremely anxious going grocery shopping due to the trauma of her experience.
"I was the last one in my family to test positive when the ACT first went into lockdown this year and everyone was much more stressed about my parents getting ill than me because I'm only in my 30s," Ms Heaney said.
"When you have COVID, there's a daily survey you fill out to report symptoms, I had a really mild condition and eventually was told I no longer had the disease because I didn't have a shortness of breath, lack of taste or any other issues.
"A couple of days later I couldn't get out of bed, I couldn't eat, I got two black eyes and eventually fell unconscious on the floor. When they called the ambulance I started to hallucinate and I thought they were going to put me in the psychiatric ward.
"Three days after I still hadn't gone to hospital and eventually it was so bad at 3am that an ambulance was called and the paramedics told me I didn't need to bring any clothes because they thought I'd be sent back home in a couple of hours.
"Later that morning I was in ICU with 100 per cent kidney failure, liver and pancreas damage, septicaemia and anaemia. I didn't leave hospital for about a month and lost about 15 kilograms."
Ms Heaney's story is a part of the growing number of experiences associated with long COVID, which is why a new post-COVID care clinic at the University of Canberra hospital is set to open in January.
Todd Kay is the director of allied health and says preliminary findings indicate a third of COVID patients experience long-term effects which is why this service is a necessity.
"If we can put therapies in to support patients who experience long COVID we can hopefully reduce the time they have those symptoms to support them get to as normally functioning as possible," Mr Kay said.
"We're going to receive referrals through our community health intake service and then they will come to us here and we'll process them from there.
"We'll probably run one or two clinics a month which will see two to four people depending on the numbers and the availability of time." Teaming up with Mr Kay is Michelle Bennett, the Brindabella rehabilitation services manager, who is organising the specific program structures.
"We've got a full multidisciplinary team so there will be access to respiratory medicine, rehabilitation medicine and allied health clinicians such as physios, exercise physiologists, occupational therapists, speech pathologists, dietitians and psychologists," Ms Bennett said.
"We'll do an assessment of someone to identify what their difficulties and goals are and then we'll provide the most appropriate and individualised program to help achieve what they want and maximise their recovery from long COVID."
Australian National University infectious diseases expert associate professor Sanjaya Senanayake says there is still little knowledge about long COVID, which will make it the next challenge of the pandemic.
"The research is still early for COVID in general and will likely take years for us to work out exactly what it means in the long term," Dr Senanayake said.
"It's beginning to look more common for women to get really sick and hospitalised and then there's another study suggesting people who don't get COVID symptoms when they have the sickness are more likely to have long COVID.
"It's important to recognise that a big proportion of patients will have lingering symptoms in place so we need to start moving our focus from the short-term response to the long term to help people get back to a fully functioning level."
Ms Heaney has also struggled mentally with the level of online abuse and trolling she receives speaking out on Twitter about her experience with COVID.
"People can be so horrible, a lot of people accuse me of making it all up and that COVID isn't a big deal which is really hard to read online," Ms Heaney said.
"I thought more people would listen to those of us who've had COVID and stop ridiculing us online, it's not funny or masculine to be laughing at someone who had such a traumatic experience.
"Everyone says they've had enough of the pandemic but I've had it worse, if I can deal with it then everyone else should be able to deal with social distancing and checking into venues."
Ms Heaney said more focus on those who experience long COVID and symptoms that are outside of the typical experience can't come soon enough.
"I just got out of hospital at the end of October and at the time I had 23 doctors who couldn't work out what was wrong with me because it was related to COVID while they all specialised in kidney failure that takes years to develop for most patients," she said.
"No one's really looked into how to treat people with COVID in the long term and with symptoms other than the initial ICU and ventilators which was something I never really had.
"While ACT Health did a great job when I had COVID, after my two weeks were up I was essentially on my own and my hospitalisation will never be counted as a COVID one because I had allegedly already recovered." An ACT government spokesperson said "when a case was cleared of their infection, they were removed from our active case number and therefore from further reporting."
Our coverage of the health and safety aspects of this outbreak of COVID-19 in the ACT is free for anyone to access. However, we depend on subscription revenue to support our journalism. If you are able, please subscribe here. If you are already a subscriber, thank you for your support. You can also sign up for our newsletters for regular updates.
Our journalists work hard to provide local, up-to-date news to the community. This is how you can continue to access our trusted content: