Susan Hutchinson was never shy of an adventure, from climbing volcanos in Rwanda to joining the army reserves.
She now uses a mobility scooter to get around, can only work 10 hours a week on her PHD and relies on other people to help with everyday tasks like vacuuming.
She has Myalgic Encephalomyelitis - commonly known as chronic fatigue syndrome - and says there is poor recognition of the disease among medical professionals and the government.
Ms Hutchinson is currently battling to be approved for the NDIS but has been told she is "insufficiently incapacitated".
She has been left without the support she was eligible for before the NDIS rollout.
Ms Hutchinson receives a disability pension -which leaves her with little once her rent is paid - but was without income for six months while Centrelink decided whether she should be given the allowance.
The process has her at her wit’s end.
“The condition has been extremely debilitating for me, it’s completely changed my life,” Ms Hutchinson said.
“I have to ration my reading, I ration the number of times I go up and down these stairs.
“I wear noise cancelling head phones all the time.
“There is a lot of construction work going on around my house at the moment, which is very problematic for me - my body literally shuts down.”
She has applied on two separate occasions for the NDIS and was rejected both times.
Her case in now before the administrative appeals tribunal.
“I have found the process to be unreasonably burdensome,” she said.
“I need help, we were told no one would be worse off under the NDIS and I am worse off.”
Canberra high school student Celeste Flowers, 17, has also been diagnosed with the condition.
She works hard to keep up with her studies but said without the support of her mother she would struggle.
Spending a few hours doing schoolwork or going to the movies with her friends can mean hours recovering in bed or on the couch.
Celeste is frustrated by the “outdated” medical advice she has been given and is forced to travel to Sydney to see some of the few doctors with experience treating the condition.
She was previously treated with the commonly prescribed graded exercise treatment, which she said resulted in extreme exhaustion and worsening neurological symptoms.
While the treatment is commonly prescribed by GPs and recommended by the Royal College of General Practitioners, some say it is detrimental.
CEO of Emerge Australia Heidi Nicholl said the condition was often misunderstood by health professionals and the community.
“Contrary to popular belief, ME/CFS is not about being tired", she said.
“It is as serious disabling multi-systemic illness that affects an estimated 0.4-1 per cent of Australians.
“It has been classified as a neurological disorder by the World Health Organisation since 1969.”
Advocacy group #MEAction Network Australia has called on the Federal Government to increase funding and awareness of the disease.
“Few health professionals are up to date on the ME/CFS research,” a spokeswoman said.
“This means that people with the condition have difficulty accessing appropriate medical care.
“Health professionals, patients and their supporters need treatment guidelines, which reflect the current understanding of the condition.
“There is little or no training in ME/CFS for health professionals.
“The science is evolving rapidly, and many health professionals hold outdated views on the nature and treatment of the illness.
“Australia needs appropriate training for health professionals included in undergraduate degrees.”