Rylie
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Rylie has myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. It is a complex neurological disorder that affects many parts of the body. It is unpredictable and symptoms can be triggered randomly.
Because it is ‘a fluctuating illness’ it is difficult to manage. A range of physical and mental activities can increase symptoms and leave her unable to function.
Rylie told the Royal Commission that because the government doesn’t recognise ME as a disability, people with ME aren’t eligible for government disability support, such as the Disability Support Pension and the NDIS.
ME is ‘stigmatised’, she says, and people with the condition ‘seem to have to “prove” their disability in ways that other disabled people don't’. This is difficult to do when ‘the medical guideline is nearly 20 years old [and] doctors are decades out of date’.
Rylie has tried to explain to both Centrelink and the NDIA the issues around ‘proving’ her disability, but says she has been ignored. Her applications for the Disability Support Pension and for the NDIS have both been rejected.
She would like to see greater advocacy for people with ME so there is more understanding and knowledge of the disease.
‘The government needs to look at ME and update its attitude because post COVID there will be a new wave of cases. I hope the new patients do not have the same battle that ME patients currently have.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.