Narina Carter suffers from a rare genetic condition which causes her body to create faulty collagen.
Her symptoms are painful and include seizures, cognitive and speech problems, dislocations, respiratory problems and chronic fatigue.
The condition — Hypermobility Spectrum Disorder, or Ehrler's-Danlos Syndrome — makes even the simplest of tasks, like doing the dishes, a challenge.
She said she had to break it into "several stages and I have to rest in between".
"Sometimes I literally lie down in between, just so I can get that job done without having a seizure," Ms Carter said.
Collagen is a tough, fibrous, protein which keeps bones strong and bodies flexible.
As a child, Ms Carter was "strangely bendy" and before she realised it was bad for her, would impress people with her "contortionist tricks".
She enjoyed a successful and colourful career in the film and television industry, making a name for herself as a talented special effects make-up artist.
But she has been unable to work since 2017 because of lack of mobility.
Some days Ms Carter, who lives in Coffs Harbour, New South Wales, can walk, but on others she uses a wheelchair or she's bed-ridden.
Yet when she applied for help from the National Disability Insurance Scheme she was rejected.
Rare diseases 'usually excluded'
In a letter, the NDIS said her rare connective tissue disorder did not meet its requirements — that a person "must have an impairment that results in substantially reduced functional capacity".
It added that her condition would be more appropriately treated through services within the New South Wales health system.
"If you don't fall into those categories, I think it can become a lot harder for people to be heard," Ms Carter said.
"I think another side of it is you've been told you have something that is incurable and it's never going to go away.
"And then you're told 'Oh but you're not disabled enough or you're disabled enough but there's no support there anyway because all you can get is physio as a treatment and that's classed as mainstream'."
The Chief Executive Officer of Rare Voices Australia, Nicole Millis, said the NDIS operated on lists and rare diseases were usually excluded.
"The way the services, and particularly the NDIS, are set up is just for disability and not for health conditions. And of course a large proportion of rare diseases," Ms Millis said.
"Yes they're health conditions but the impact of that health condition is that degree of disability.
"We are hearing more and more stories of people falling through the gaps because it's seen as a health condition rather than a disability."
Getting by takes a toll
The ABC contacted the National Disability Insurance Agency for a response.
In a statement it said access to the NDIS was based on a person's functional impact, not on their condition or diagnosis.
"This means no condition is, or will be, automatically excluded from the NDIS.
"The NDIS is not designed to replace other mainstream government services, like health," the statement said.
"The health system continues to remain responsible for the diagnosis, early intervention and treatment of health conditions."
Ms Carter has appealed the NDIS decision but in the meantime just getting by is taking an emotional toll.
"I'm really scared about my future and what will happen to me and if we will be able to afford it all.
"I'm sure that there's many people out there in the same boat.
"Having a rare illness and then finding myself shut out of support systems I feel an obligation to at least join the conversation in case it helps the situation for myself and others."
