Imagine if you woke up tomorrow morning, and instead of having fourteen usable hours in the day, you only had two. That’s the best way to describe what it feels like to acquire an energy-limiting disability like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). One day, you wake up, and your life force has disappeared into thin air.
Suddenly, life is about impossible choices. When I first became unwell, I was forced to choose between working and living. Between washing my hair and cooking dinner. And later, as I lost more and more energy; between brushing my teeth and speaking to my family. These are the choices people with energy-limiting disabilities make every day. Our time is not the same as yours; we need rest; we need support. And we deserve care.
In an ironic twist, I was working in the United States when I acquired my disability. After a brief but distressing experience with America’s healthcare system, I moved home, breathing a sigh of relief for being born in the “lucky country”; the home of Medicare, Centrelink and the NDIS. As someone who had never needed government support before, I thought that Australia provided robust social services to its people when they fell on hard times.
I could not have been more wrong.
As I cast around for help, I realised that the help I needed didn’t exist — at least, not for someone like me. Every support I looked at required a diagnosis and substantial medical evidence. But medicine doesn’t understand my disease. Modern medicine is rooted in misogyny and many disabling conditions predominantly affecting women and gender-diverse people, including fibromyalgia, Ehlers-Danlos Syndrome and my own disease, ME/CFS, have never received adequate research funding. This lack of knowledge within our healthcare system means it takes a very long time to get a diagnosis; six years in my case. And until I got that piece of paper, as far as Centrelink and the NDIS were concerned, I did not exist.
By the time I received a specialist diagnosis, I’d seen over thirty different medical practitioners, none of whom knew what to do with me. And I’d become mostly bed-bound from the kind of severe fatigue that makes it impossible to sit upright. I’d stopped searching for treatments and accepted there was no cure. All I wanted by this point was help.
There’s an implied link between medicine and disability. The assumption is that if you’re disabled enough to need support, you’ll have an expert team of medical professionals at your disposal to verify this. But people fall through the cracks of our healthcare system every day, unable to find specialists who understand what’s happening to their body. When this happens, they’re left to drown.
Most doctors were genuinely afraid to discuss my disability with me.
Charlie park, disability advocate
Two incorrect assumptions result in people being cut off from the services that are meant to help them. One is that every disabled person has access to medical practitioners who are knowledgeable about their condition and capable of diagnosing them. The second is that doctors are both willing and able to write bureaucratic reports to address the very specific criteria for Centrelink and the NDIS (in my experience, they’re neither).
These assumptions allow the government to deny people the income and support they need to survive. As The Guardian reported late last year, 43% of people on unemployment benefits in Australia should be entitled to the disability pension, but can’t access it. And as per the ABC, only 12% of the 4.4 million Australians living with disability are on the NDIS, with many of those excluded being women with pain and energy-limiting disabilities, which don’t fit the scheme’s medicalised approach to assessing disability.
It took six years for me to gain access to the NDIS. I spent three years paying out-of-pocket for support workers so I could continue working part-time; something I should never have had to do on an already reduced income. Before applying for the scheme, I spent countless hours speaking to other people with my disease who had somehow managed to access support. They coached me on how to make my case to the NDIA (the government body that manages the NDIS).
The fact that you have to know someone, or hire someone, to help you write about your own body, indicates the system is deeply flawed.
Jasper peach, author & disability advocate
One of the people who gave me advice was disability advocate Charlie Park, who has Addison’s Disease and ME/CFS. “I struggled without supports for six years because doctors didn't have a clue about disabling chronic illness," Park tells Refinery29 Australia. "Most doctors were genuinely afraid to discuss my disability with me. Instead, they pretended I could push myself back into my old life, even as my health plummeted and my life disintegrated.”
“One specialist told me they could help me and then provided a letter with only three sentences, ‘I see Charlie. She says she experiences fatigue. I support their application’. Another specialist refused to see me when they learned I was seeking support for the NDIS. Others refused to help me until I lost weight. It’s heartbreaking and exhausting.”
Jasper Peach, a published author and disability advocate, also shared their experiences with me before I applied. They’ve been disabled for 18 years with fibromyalgia and ME/CFS, and didn’t gain access to the NDIS until last year. “One of the nurses at my GP clinic provides an advocacy service for patients looking to access the NDIS," Peach tells Refinery29 Australia. "I spent several months gathering evidence of my disability before seeing her, but she took one look at what I’d written and said, ‘I can’t use any of this’.
“She rewrote my application using specific language to describe my disability, and with her knowledge of the system, I was approved. The fact that you have to know someone, or hire someone, to help you write about your own body, indicates the system is deeply flawed.”
Even with all the knowledge I accrued about accessing the NDIS, my initial application was denied; a decision that left me feeling incredibly powerless, given that I was bed-bound and being cared for by my family at the time. Afterwards, I fought tooth and nail to have that decision overturned, lodging a freedom of information request to ensure I understood how the NDIA had been able to reject me. I gathered as much paperwork as possible to address the issues they'd raised, even paying out-of-pocket for an Occupational Therapist to visit me at home and write a lengthy report explaining just how limited my level of functioning was. Late last year, after many tears of frustration, I was finally accepted to the scheme.
As the conversation around the ‘sustainability’ of the NDIS continues to reverberate in the public discourse (a discussion we never see directed at other social services), and the Prime Minister announces annual growth targets for the scheme, I wonder what additional barriers our government could possibly put in place to make life even more difficult for people living with marginalised diseases.
I deserved help, care and support from the day I became disabled. Why did I have to wait six years to access it? And what happens to those of us who fall through the gaps of our systems, and don’t have the means to find our way out?