Welcome to the disputed territory of Bed. Those of us exiled here offer greetings to the newly arrived refugees from the land of the Well. We are of course sorry for your loss, but we are not as surprised to see you as you are to find yourselves here.
Since early 2020 we the Sick have been issuing regular warnings of imminent catastrophe. But we are used to being ignored. Our voice hasn’t been heard much over the five decades since our case was relegated to the wilderness. Like other oppressed populations, we suffer from being ‘out of sight, out of mind’. Bed is less Palestine, more Western Sahara. Like the Sahrawi, there are millions of us, abandoned in a desert of neglect.
President Biden may have recently declared “the pandemic is over”, but he’s stuck in the binary, still only considering Covid outcomes as life or death. The third option – living in a permanent state of pain and semi-coma – seems to have not yet percolated into global recognition. Even the World Health Organisation only started giving the threat of Long Covid their full attention last month.
It is bizarre to us, sheltering-in-place here in Bed, that the Well have not yet managed to join the dots between the so-called “Great Resignation” and the Mass Disabling Event. There are 16 million Long Covid sufferers in the US, of whom up to 4 million are out of work, with costs estimated to be in the trillions. In the UK the number of ‘economically inactive’ Britons – unable to work for the same reason – has doubled in a year.
Biden seems to have decided that gambling on ‘you do you’ mask-dropping optimism is the safest bet to bolster his presidency. In contrast, Xi Jinping is continuing his zero-Covid hard lockdown policy. Xi’s not known for his solicitousness about the well-being of his people, so could this be read as his refusal to take any chances on Long Covid negatively impacting China’s worker capacity?
Before the pandemic, the post-viral energy-limiting disease ME already affected an estimated 15-30 million people, with 75% unable to work and 25% homebound or bedridden. We veteran longhaulers predict a similar outlook for the estimated 200 million Long Covid sufferers worldwide who have recently joined our ranks. Every subsequent Covid infection substantially raises your chance of contracting chronic illness and numbers threaten to rise exponentially.
Dr Anthony Fauci, Chief Medical Advisor to the POTUS and (mostly) one of the good guys, was recently quoted in the Guardian, stating:
“When you say right now in the United States 400 people a day die from Covid – several months ago that number was 3,000 to 4,000 – that’s a number that catches your attention and it’s very real and very acute. But to say that 7 million to 20 million people are really tired after Covid, people say, well, what does that mean? It’s not very concrete. And yet for the individual patient, it could be debilitating.”
“Really tired”? Really, Anthony? Is that the limit of your understanding, you, the infectious disease expert? In the wake of 9000 papers on the organic nature and devastating impacts of post-viral energy-impairing chronic illness over the last 30 years? Despite recent ground-breaking findings coming out of Stellenbosch that microclotting in Long Covid and ME causes ischaemia in tissues, muscles, organs and brain?
Just because you can’t see something from the outside, doesn’t mean it’s not there. Like diabetes. Like cancer. Like hypoxia.
Like us.
We the Invisibilised Ill are legion. Bed is a vast territory encompassing Sealy Posturepedics across North America and Europe to mats in shacks across the Global South. But of course the vast majority of its subjects are female and easy to ghost.
Let me explain a little about the culture of the Queendom. Our focus is survival. Our currency is spoons. We are allergic to gravity. We support each other. The words “have you tried yoga” and “kale” are taboo.
Like our Black sisters and brothers reject being called N*gger or K*ffir by the coloniser, the Sick reject the moniker “Chronic Fatigue Syndrome”. We are not “tired”. Our bodies can’t breathe. When your body’s oxygen delivery system is compromised, everything goes to shit: you don’t have enough fuel to stand up, to digest, to sleep, to think. Loadshedding is always imminent. “Chronically F*cked Syndrome” would be more like it.
If we started calling it Chronic Oxygen Starvation Syndrome, would you start taking it more seriously?
For us, the Great Resignation is our own. We the Sick already know that the Well are not going to heed this warning. You would rather gamble your future on a minimum 1 in 10 Russian roulette chance of becoming ill forever than wear a mask indoors. Our numbers are already too Great. But we are Resigned to you not listening.
First published in the Daily Maverick 168 4th Nov 2022.
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8. Why we need Sick Pride
As we approach Severe ME Day on 8th August, I broadcast this message to the citizens of Bed.
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7. Seven Deadly Symptoms part two
Let us continue our exploration into the seven chronic symptoms of energy-limiting conditions such as ME and Long Covid.
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6. Seven Deadly Symptoms part one
Let us examine the typical list of symptoms assigned to a post-infectious energy-limiting condition like ME or Long Covid and expand on what it really feels like to experience them. Daily. Forever.
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BED Talks 1: Catherine Hale
BED Talks features interviews with Sick thought leaders and patient advocates from around the world
SICK BED 
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