Short of breath, Alicia Newnham softly explains her situation.
Key points:
- Advocates are concerned that long COVID could lead to a new wave of people with disabilities
- Long COVID can be diagnosed by a healthcare provider, but it doesn't automatically mean a person has a disability
- Disability recognition could mean better financial support
She's 44 years old, has three boys who love sport, an active dog and a mortgage with her husband.
However, balancing all of that became impossible after she contracted COVID-19 in May 2022.
"One morning, I was trying to get out of bed, and I couldn't," she told ABC NewsRadio.
"My body felt like it had been weighted down by something I couldn't explain."
For 12 months now, Alicia has experienced fatigue, chest pains, headaches, brain fog and memory loss.
She has stopped working and driving.
"I believe it's very much a disability. I can't walk far, everything hurts," she said.
"I got a disabled parking permit, but [the government and medical professionals] won't recognise it as a disability."
'A new wave of people with disabilities'
Alicia is among a growing cohort of Australians who are affected by long COVID, a condition for which the federal government is trying to determine the best response.
Since January 2020, there have been more than 11 million confirmed COVID-19 cases in Australia, according to the World Health Organization.
The Australian Institute of Health and Welfare suggests around 5 to 10 per cent of COVID-19 cases in Australia experienced symptoms three months after an infection.
People with Disabilities Australia president Nicole Lee is worried the health of those people may never improve.
"I'm very concerned that long COVID is potentially leading to a new wave and cohort of people with disability," she said.
"For those people who do have lasting and long term impacts … they do need to start to be supported, and understood, and respected as having a chronic illness or a disability."
The United States recognises long COVID as a disability under the Americans with Disabilities Act, "if it substantially limits one or more major life activities".
Australia's Department of Health and Aged Care said that, while long COVID could be diagnosed by a healthcare provider, it did not automatically mean a person had a disability.
"Disability is determined on a case-by-case basis, and does not necessarily flow on from a medical diagnosis," a spokesperson told ABC NewsRadio.
Alicia doesn't believe there is any question over her situation.
"I am disabled. I can't do most things for myself," she said.
"If I have to go to a medical appointment, I am in a wheelchair or I use my walking frame …
"I can't drive. I can't cook. I need a chair in the shower, and I'm lucky if I have the energy to shower once every few days."
Sufferers falling through the support cracks
Alicia's husband is also her full-time carer, and his personal leave is dwindling fast.
The situation is heightening the financial stress on their family.
Alicia wants to apply for the disability support pension (DSP), but is worried about the technicalities, and being denied.
"I know of people in my position, or worse, who have been knocked back," she said.
"Single mums, who are trying to keep a roof over their heads with COVID, have been knocked back for DSP."
To be eligible for the DSP, a person has to be "unable to work for 15 or more hours per week, for at least the next two years".
Proving that could be hard, unless the thinking around long COVID changes.
From the Government's research into long COVID, People with Disabilities Australia's Nicole Lee wants the condition to be recognised as an injury and, if those physical injuries persist, for the government to consider it a disability.
"That's so we can actually start recognising it under the DSP, and recognising it under the medical model that they work from," she said.
A spokesperson for the Department of Social Services told ABC NewsRadio that people experiencing long COVID could meet eligibility requirements for DSP, depending on their individual circumstances.
"Eligibility for DSP is based on functional impairment and ability to work, not on diagnosis or specific medical condition alone," they said.
If someone has long COVID, and developed heart damage, fatigue or respiratory conditions "… and it can be considered as diagnosed, reasonably treated and stabilised, they may be eligible for DSP".
That's if they meet a functional impairment assessment, and "all the other requirements for DSP are met".
Source: ABC