From lost careers, to self-imposed lockdowns — for some Australians, living with the virus is easier said than done.
Tune into the daily cycle of press conferences, and you'll hear an all-too familiar phrase: underlying health conditions.
As the national dialogue about COVID evolves, and Australia forges a path towards normality, those who count themselves part of this group have found themselves stuck in pandemic purgatory.
At an increased risk of serious and potentially fatal complications from the virus, they are encouraged to stay home and limit contact to protect themselves as the rest of the world moves on around them.
But with no end to the pandemic in sight, and with families to feed and lives to live, others must accept the risk that catching COVID could reduce them to a daily health statistic.
"Those who died had an underlying health condition."
'My whole life has collapsed into a little shell of what it used to be'
When the coronavirus pandemic hit Australian shores, Tammy Milne knew she would have to call time on her 33-year teaching career.
"I decided to retire, or resign," she says. "It was basically because of the risk factors of COVID and just not feeling safe."
Tammy is one of the 47 per cent of Australians who live with a chronic condition.
She has Arthrogrophosis Multiplex Congenita, which affects her legs, and requires her to use calipers or a mobility scooter to get around.
Her lung capacity is also limited, and she knows that, should she contract COVID-19, the likelihood of developing pneumonia is high.
Until December, the disability advocate had navigated the pandemic in Devonport, Tasmania with some level of confidence: she was swimming laps in the pool, going to restaurants and socialising with friends.
But as case numbers have grown, and exposure sites have left the national consciousness, Tammy's "whole life has collapsed into a little shell of what it used to be".
"We have so many cases that we don't know if we've got a little mini hotspot or anything because the government isn't giving us that information," she says.
Unsure of where COVID may be circulating in the community, Tammy now limits her movements in order to protect herself.
But it's an isolating experience, she says, and one that has left her feeling "expendable"
"It's dreadful, I was, and still am, a productive member of the community," she says.
'Our community can barely get groceries without putting themselves at extreme risk'
Jules Charlton's new normal is "so genuinely difficult to describe".
Before coronavirus entered the vernacular, Jules, an elite para athlete in athletics, had just begun a bachelors degree at the Australian College of Physical Education, with a 21st birthday surrounded by friends and family on the horizon.
But as the virus spread, their studies and coaching business were forced online. Friendships were lost, festivities became synonymous with Zoom, and Jules's track and athletics aspirations were temporarily dimmed as competitions were limited or cancelled entirely.
"I’ve missed social events, professional development opportunities and just living life in my early 20s," the 23-year-old from Dural, NSW, says.
"I rely on support workers to be able to train in my sport, and during the 2021 lockdown, I didn't have access to any support in order to keep my family and myself safe."
Young people have been disproportionately affected by the Omicron outbreak, with those in their 20s infected in higher numbers.
Nationally, almost 400,000 people aged between 20-29 contracted the virus between late November and January.
It's no anomaly: young adults are more likely to work in high-risk settings, such as hospitals, supermarkets, restaurants and bars, and to socialise with a wider network of people.
But for those with a higher risk profile who fall into this demographic, it adds another layer of difficulty to navigating the pandemic.
"Lots of people in the disability community I know, myself included, have enforced a sort of ‘voluntary lockdown’ on themselves in order to make the ‘new normal’ or ‘let it rip’ approach less dangerous," says Ebe Ganon, 24, from Canberra.
"It’s pretty rough to see people heading out to the pub every weekend when our community can barely get groceries without putting themselves at extreme risk," she adds.
Ebe has epilepsy and a number of chronic illnesses, some of which produce similar symptoms to those associated with COVID, like headaches, muscular fatigue and general pain.
Exposure sites were "such a key part of my approach to the pandemic", Ebe says, because it allowed them to make risk assessments, "particularly when it was unavoidable to go out to access particular goods and services".
"Not having exposure sites available means that I can’t use that information to weigh up the probability of having been exposed to COVID-19 and needing testing, or it just being a flare of my existing conditions," Ebe says.
"With the almost non-existent supply of RATs and often overwhelmed PCR system, it’s a difficult calculus: do I waste a RAT or try and get to PCR testing when it’s likely to just be normal symptom from my conditions?"
For Tahlia Blanshard, the term underlying health conditions, and the discourse surrounding it, has taken a mental toll that "is something beyond words".
"It has been extremely difficult to navigate these times whilst feeling like every news update is telling me that my life is worth less simply due to my diagnosis," says Tahlia, who has cerebral palsy, dystonia, and chronic Illnesses.
The 21-year-old, who lives on the NSW Central Coast and has also been forced to limit how often they go out in public and where they can go, has never felt "more open to discrimination, particularly in casual settings".
Most of all, Tahlia adds: "I feel ignored and forgotten".
"When I beg for us to move away from focusing on whether or not a person was disabled, chronically ill or immunocompromised, and rather, highlight that we are still in the middle of a pandemic, and we have a long way to go before we are ready to return to normal."
'I could not bear to stay locked in the home'
Up until recently, Bron Dahlstrom thought she was "very fit and healthy".
Triple vaccinated and in her early 70s, Bron lives with her husband on a hobby farm in South Gippsland, Victoria.
But she's had asthma since her early 40s, and has recently started taking medication for high blood pressure.
"As high blood pressure and asthma are underlying conditions in regard to severity of COVID, even when they are controlled with medication, this is a worry," she says.
"On top of this, I fall into an older age group, so I am even more at risk because of this."
More than 1,340 people have died since the country’s first Omicron-linked death on December 27, 2021, although the proportion of deaths caused by Omicron versus Delta over this period is unclear.
Those in their 80s have made up the majority of these COVID fatalities, followed by those in their 70s and those in their 90s.
With a higher risk profile, Bron tries to stay safe: "But I could not bear to stay locked in the home and never go out or see people," she says.
It means she must make conscious decisions to manage her risk, but she fears for those who do not have the same luxury.
"I am very worried about people whose jobs mean that they are constantly exposed to COVID," she says.
"We used to teach and we are so glad that we don't now."
'Most of the RAT kits only have English language instructions'
Trying to decipher the nuances of ever-changing state and federal COVID restrictions can sometimes feel like a challenge in and of itself.
Now imagine trying to do it in a different language.
“Information in [languages other than English] is still dependant on state [and] territory and migrant NGO initiatives and channels of information," says Dom Golding, who is hearing impaired and lives with cerebral palsy.
"I get a lot through the network I have based in Melbourne, but nowhere else and I live in the ACT."
Dom is a policy and project officer at the National Ethnic Disability Alliance, where he works alongside Al Azmi, a project officer and person with disability.
Rapid antigen and PCR testing can be "scary" and "invasive" for people living with a disability, Dom says, and "most of the RAT kits only have English language instructions".
Many within the community are "dreading the rhetoric of 'going back to normal' and similar sentiments", Al adds, "because before [the] pandemic, 'normal' generally did not consider our needs and wellbeing at all".
“Accessibility options such as working from home, remote meetings, online attendance and livestreaming of events are provided as a matter of course and not an afterthought," says Al.
"These options are crucial for many people with disability to engage with community events and employment. When they were framed as an accessibility need, they were often considered 'too hard' and dismissed as an option at all.”
'The shift in narrative doesn't include us in the story'
The return of children to the classroom is no doubt a daunting prospect for many parents trying to navigate the pandemic.
But for Sarah Davies, there's an added level of anxiety.
She and her 15-year-old daughter share a genetic condition called Ehlers Danlos Syndrome that makes them more vulnerable to serious consequences of COVID.
It means they "don’t have the luxury of thinking it’s just like a common cold."
"Every time I hear the phrase 'living with the virus', it makes me cringe, because it is Australia’s most vulnerable people who don’t get to live with the virus. We die from the virus," says Sarah, who lives in Perth.
With a shift in the national narrative about COVID, Sarah feels like her family is "just collateral damage".
Getting vaccinated is a choice, she says. But "I can't choose not to be disabled".
"My daughter can’t choose either. But our lives are equally valuable. We are equally loved and equally capable of contributing to make the world a better place."
It's a sentiment echoed by Bridget Harrington, who is "hyper-aware" that if she were to contract COVID, she could "become very sick".
The 30-year-old Brisbane resident uses a motorised wheelchair because of a spinal cord injury, which impacts her ability to walk and lung function.
"I completely understand that health departments want people to appreciate the effectiveness of the vaccine, so do I," she says.
"But all those articles with caveats about the people with underlying health concerns or a comorbidity, just make me feel more expendable."
For some, the pandemic is far from over
Reflecting on the future, 23-year-old Jules is "cautiously optimistic".
"But when my friends and family in the disability community don’t have access to their life-changing surgeries because the hospitals are overrun with COVID patients, that scares me," she says.
While the east coast of Australia begins to look beyond a summer of rising infection rates, for others, the pandemic is far from over.
Continued mandatory check-ins and investment in better automation for contact-tracing" is crucial, Ebe says, alongside continued funding for Telehealth services.
Above all, offers Tammy, is the need for empathy.
She is not an "underlying health condition", she is a person.
And she longs for the day she can rejoin the community with confidence, if only to go for "a bloody good swim at the beach".
