Some people would describe Susan Hutchinson as a thrill seeker. She’s type of person to climb volcanoes. She joined the army reserves. Perhaps that’s what makes a diagnosis like chronic fatigue syndrome so frustrating. Keep reading to learn more, or follow the original story here.
Susan Hutchinson uses a mobility scooter to navigate life now. She’s still working towards her PhD, but is now restricted to only working 10 hours each week. Tasks most people take for granted, like household chores, Susan now needs assistance to accomplish.
This is because of Susan’s chronic fatigue syndrome. Also known as myalgic encephalomyelitis, chronic fatigue syndrome is characterized by an extreme, and inexplicable feeling of fatigue or exhaustion. Because of poor awareness around CFS, it is under-diagnosed and neglected by much of the medical community.
The condition is often worse after periods of activity, and although symptoms may improve to a degree with enough rest. It severely restricts the lifestyle of those living with it as a result of intense fatigue, fogginess when trying to concentrate, dizziness, blurred vision, and headaches, among other symptoms. Click here to read more about chronic fatigue syndrome.
What’s worse, the condition is often misunderstood, or poorly recognized, even by medical professionals patients rely on for treatment.
Susan faces ongoing struggles with the NDIS, as they informed her that despite her daily challenges, she is “insufficiently incapacitated” to receive their aid. She receives a disability pension, but this primarily covers her rent. She has at times found herself deprived of an income while awaiting decisions.
She describes her condition as “extremely debilitating.” She has to take care and not overexert herself performing tasks like reading, or going up and down stairs. She wears noise canceling headphones to drown out the sounds of construction outside her house which she says cause her body to “shut down.”
On two separate occasions she has applied for aid form the NDIS and been rejected. An administrative appeals group now handles her case. The process has, she said, been “unreasonably burdensome,” adding another challenge as she faces the weight of a chronic illness.
Susan Hutchinson is one among many others who are affected by changes in the Australian healthcare system. Celeste Flowers, age 17, finds herself similarly positioned. Celeste also lives with chronic fatigue syndrome.
A short time spent studying schoolwork or watching a move with friends can lead to hours of recovery for her. Celeste describes the medical advice given to her as outdated and frustrating. The fact that she has to travel to Sydney just to meet with informed doctors is equally irritating.
Advocates point out that chronic fatigue syndrome is not only about tiredness. It’s a multi-systemic condition. It has also been classified as a neurological disorder by the World Health Organization since 1969. While science continue to evolve, many see the Australian health system standing still on the issue of chronic fatigue syndrome. Patients are ready for it to catch up.
