Ausnew Home Care | A love letter to my disability, Myalgic encephalomy

A love letter to my disability, Myalgic encephalomyelitis

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Dear disabled body,

Thank you for carrying my heart and soul these past 16 years. You've pushed me to become a better, braver person and taught me some of the most important lessons of my life. 

We met when I was 18, but it took ages to learn your name. When I got glandular fever, I figured I'd bounce back soon enough. I didn't. I began to hear urban legends about people who took years to recover, or never recovered. I was sceptical.

I started hearing the name chronic fatigue syndrome. I asked my GP, "Could it be chronic fatigue syndrome?" He grimaced and looked away. "That's not really a helpful term," he said. "It's better if we call it 'post viral syndrome'." 

In other words: Don't call it chronic fatigue or people won't believe you. 

A woman wearing a navy hospital gown holding up both hands in 'peace' signs. Ausnew Home Care, NDIS registered provider, My Aged Care
Putting on a brave face before a lumbar puncture.(Supplied: Alice Rumble)

It took years for me to understand you and for a long time I was afraid of you. You brought suffering and uncertainty. You were an invisible force that I thought had come to take away who I was — my intellectual capacity, my work ethic, my physical stamina, my social life. 

I began to feel like I was melting into the concrete when I walked from the bus to work. I struggled to read, find words and connect ideas. Showers and walking straight became impossible without clutching the walls. Fevers, chills and nausea descended. Food randomly wreaked havoc on my guts. My neck became taut with swollen, throbbing lymph nodes. Stabbing pain attacked my joints. Eventually, one of my legs started an involuntary Irish jig. I struggled to walk. 

Something is wrong — slow down, you begged. 

I experimented with introducing you to people. "They think it might be chronic fatigue syndrome," I would say. Again: scepticism, rejection. People would avert their eyes and ask, "But do they know what's actually wrong?" — as if your name was meaningless.

One colleague said: "I think people with those sorts of illnesses tend not to be very resilient." Another frowned and asked if I was "cut out" for my job as a lawyer, as though I'd invented you to hide behind. 

Each time I heard: "This diagnosis is not legitimate, if you want to be believed and accommodated, find another explanation." 

A woman in a checked shirt laying on the floor with a reddish-brown dog
A snapshot of a typical day, with my dog.(Supplied: Alice Rumble)

Despite this, I was lucky. I had employers who fought for me. But there was only so long we could pretend that I could continue as a lawyer. If I couldn't walk, sit up or concentrate for long and work in law, maybe I could slowly do a PhD like I'd always hoped. What could go wrong?

You showed me. I'd drive 15 minutes to uni and have to sleep in the car before I could walk 50 metres to my office, where I'd then have to lie down. When I'd tell colleagues I couldn't remember things or connect ideas like before, they'd insist I was being hard on myself. 

Doctors told me I wasn't going to be able to work or study again. I began to tell my loved ones, trying out the idea. They'd say, "Oh don't say that", as if I was speaking a curse into existence. They were scared too. 

I began to wonder whether I was trying hard enough to "fix" you. The dreaded phrase, "Have you tried..." echoed in my head. I'm sorry I starved you in a quest to find the answer in food. The carnivore diet was a low point. I'm sorry I made you eat beef mince for breakfast. The diarrhoea was a fair response. 

A woman in a gold sparkly gown laughs while standing at a lectern with a microphone
I mightn't have looked it to other guests at the wedding, but on this day I was very ill.(Supplied: Alice Rumble)

I'm sorry I exercised you when you told me not to. I thought the "experts" at the clinic knew what they were doing. Now I know they were making money. They blamed me and I blamed you when their program made things worse. You've since been vindicated by the research and guidelines changing. Exercise can be extremely dangerous for bodies like ours. 

Thank you, though, for introducing me to the heroes in the health profession. The ones who don't give up or blame me when their recommendations don't work. The ones who listen, believe and advocate. They work tirelessly to care for us in a health system designed to fix problems, rather than support disabled people. 

You've taught me so much. We've learned how to cook, meditate, knit, garden, navigate bureaucratic systems and care for sick or sad loved ones. You've taught me a kind of empathy that comes from being an "other" — someone who lives in a world not designed for them. I'm so grateful you've helped me meet so many hilarious, creative, supportive and generous disabled people. 

Although we've had to grieve my past self and career plans, you've freed me from the weight of my own expectations about who and what I should be. You've helped me become braver than I ever imagined. I've faced down institutional discrimination while fighting for the disability supports I desperately need. These battles have taught me more about advocacy than law school ever did. 

A man wearing a suit and a woman in a sparkly gown walking with linked arms
My partner, family, friends and former colleagues have supported me through upheaval and uncertainty.(Supplied: Alice Rumble)

You've also brought out the best in the people around me. My partner, family, friends and former colleagues have loved and supported me through the upheaval, grief, uncertainty and wild diets. 

Now I've come to accept and appreciate you, I've found the right name to introduce you by. A name that provokes puzzled expressions and sympathetic eyes: Myalgic encephalomyelitis. "It's a brain disease," I explain, and people believe me. 

Maybe it was never about your name. Maybe the world around me accepts us because I finally do. Instead of tentatively suggesting, "They think I might have chronic fatigue syndrome", I now proudly say, "I'm disabled." 

And that is a beautiful thing.



Alice Rumble is a disabled writer living in the Southern Highlands with her partner and a very good dog. She shares her stories about disabled life on Instagram at @aewrumble.

ABC is partnering with International Day of People with Disability to celebrate the 4.4 million Australians with disability.


Source: ABC

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