Madeline Lebski lives with an invisible illness.
It has meant that for the past six years she has often been bed-bound and, at times, unable to do even the simplest tasks, like standing up to have a shower.
"Invisible conditions shouldn't mean that people feel invisible as a person and unfortunately, that's what happens," she said.
Despite only being able to work about 10 hours a week, the 33-year-old is not eligible for any financial support from the government.
She fears with the rise in the number of people suffering from long COVID, more Australians will face similar challenges.
"It's time that we listened to people, it's time we believed people," she said.
"I feel that we have come so far with mental health in terms of acknowledging that it's not visible all the time. It's a secret battle that a lot of people might be going through.
"But we haven't caught up when it comes to physical conditions."
Like those with long COVID, Ms Lebski has severe fatigue, brain fog and memory loss.
"I felt like I had a mini-stroke, [I] was just like slurring words, couldn't think of the words that I wanted to say. I knew what I wanted to say, but the words just weren't there."
She has been diagnosed with mast cell activation syndrome (MCAS).
It meant she had to leave her full-time job.
Up until recently, she has supported herself by establishing an online retail business, which she could do from bed.
But Ms Lebski's illness meant she was not able to manage the business as it grew, and she made the decision to sell it.
"The money that I gained from selling the business, in an ideal world would have gone on a deposit for a home," she said.
"[But] it's been really 18 months — that's what has paid for everything from my rent to everyday expenses."
Ms Lebski estimates her medical expenses alone have cost "six figures, easily" over the past six years.
JobSeeker allowance denied
Ms Lebski is able to work limited hours from home as a graphic designer, but it hasn't provided her with enough income.
Three months ago, she applied for a JobSeeker allowance with a medical exemption.
But because she lives with her partner, she was refused.
"He's not earning millions of dollars himself. It doesn't go that far with the cost of food, fuel, electricity, everything," she said.
"The whole idea that living with a spouse in 2022 means that that person is paying everything for you is ridiculous."
"It puts an incredible amount of pressure on that spouse to share their income, when they may not be in a position themselves to even be able to do that, and that's the case with us."
She said her parents help her financially with the cost of rent, food and medical expenses.
Her medication and supplements alone cost up to $450 a month and specialist appointments can cost $600 a session.
"I'm so grateful for what I do have access to," she said.
"It saddens me so deeply that so many people don't have the financial means to be able to seek the professional medical help they need."
But she said as her parents were reaching retirement age, she did not know what the future held.
"It's incredibly frustrating to feel that there is no empathy or compassion in a system that we all think we can rely on," she said.
"Ideally, I think there should be a payment for chronic illness and at the moment, the disability pension is incredibly hard to obtain."
Calls for support amid rise of long COVID, hidden illnesses
University modelling suggests half a million people nationally could be living with long COVID by the end of the year.
Anne Wilson is the CEO of Emerge Australia — a support group for Australians living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
She said those with long COVID were not the only people living with post-infection disease.
She said there were already 250,000 Australians living with ME/CFS, but they struggled to get the support they needed.
"About 25 per cent of people with ME/CFS are either house-bound or bed-bound," she said.
"Because those diseases are classified as diseases rather than a disability, it is very difficult for people to access things like disability support pension [or the] NDIS.
"You try to tell someone who is bed-bound, and has been for maybe up to 10 years, that they are not disabled. It's just ridiculous."
A parliamentary inquiry into long COVID has been taking submissions, but Ms Wilson said a government response to long COVID did not need to reinvent the wheel.
She said both ME/CFS and long COVID patient communities faced similar problems in navigating and accessing the health care system as well as social support and care.
She said greater access to government support like Medicare, NDIS and the disability pension was needed.
"These diseases need to be classified so that those people who are the most severe and are disabled don't have barriers to entry put before them," she said.
The Australian Medical Association is calling for GPs to be given greater support to help patients with chronic and hidden illnesses to get the multi-disciplinary support they need.
"Often these patients need input from physiotherapists, massage therapists, they may need social workers, psychologists as well as other medical specialists," said AMA federal vice-president Dr Danielle McMullen.
"It can be unaffordable and it can also be time-consuming and difficult to navigate.
"We do need changes to Medicare and general practice and the way our practice teams function to make sure we've got some flexible funding that allows us to bring in a health care team.
"We would like to see more investment in research as well as clear clinical guidelines as well as that multidisciplinary support of patients who have long COVID."
