Greetings from Bed.

It’s a strange thing to be demonised for being Sick. A lack of empathy for suffering that people can’t identify with can perhaps be understood – if not excused. If you’re not Black or Queer or Trans, you are not expected to appreciate what it feels like to live that experience. Quite the opposite in fact: cis straight white people can never claim to comprehend what it’s like to exist in society within such subjugated bodies.

But everyone has been ill at some time or another. Everyone has had a fever. Everyone has periodic aches and pains. Everyone has days when they feel so grim they can’t go to work because if they lift their head off the pillow they might throw up or pass out. 

And yet…

Those of us who wake up feeling like this every single day are not treated with compassion, but with suspicion. The chronically Sick are maligned, even mocked, as malingerers. Why?

Do the Well lack the imagination to envision being trapped in the worst possible Groundhog Day?

 “You have a hangover, you’ve just run a marathon and you’re going down with flu. How do you feel?

Like someone with ME.”

So began the awareness leaflet I received when I first got diagnosed with the post-viral energy-limiting chronic illness Myalgic Encephalomyelitis (ME/CFS) 30 years ago. Studies comparing cancer, diabetes, stroke, heart disease and chronic renal failure have found that Severe ME has the lowest health-related quality of life score, as well as significantly reduced life expectancy.

Since 2020, millions more Long Covid cousins have joined us here in Bed. But the lack of empathy suggests the Well just can’t conceive of feeling this lousy for this long. Or won’t.

I understand the Well’s reluctance to acknowledge the reality of the Sick. It means becoming aware of unplumbed depths of vulnerability within yourselves. Even I, an 80% bedbound person, shy away from contemplating the gruelling daily existence of those with Very Severe ME such as Whitney Dafoe: tube-fed, in constant pain and unable to tolerate any human interaction.

Above: Whitney Dafoe summarises his quality of life in his paper “Extremely Severe ME/CFS – A Personal Account”

So why does society immediately grant sympathy to someone with a diagnosis of cancer, but not those with energy-limiting chronic illnesses such as ME and Long Covid? Why is it that some Sick are portrayed as more worthy of pity than others?

Don’t all Sick lives matter?

American photographer Whitney Dafoe aged 21, before he fell ill in 2004. (Photo: supplied)

I started writing this just before World Aids Day. There are striking parallels between how disdainfully the Sick were treated in the initial phases of the HIV pandemic and how the suffering of those chronically ill with Long Covid is being downplayed now. 

In the eighties, AIDS was stigmatised as the “Gay Plague” in the West, but by the 1990s the highest infection rates were revealed to be amongst heterosexual women in sub-Saharan Africa. Misinformation generated by tabloid stereotypes can be fatal. It’s just as likely our “Yuppie Flu” disease will be shown to be most severely impacting poor people of the global south. 

Do you remember the short gap between HIV-infection rates rocketing in South Africa in the late nineties, before exploding into hundreds of daily Aids deaths in the early 2000s? We currently inhabit a similar gap between Covid-19 infections early in the pandemic and the devastating social and economic impact of mass disability due to Long Covid, which is about to become apparent. But the lack of public health guidance and ubiquitous pics of Limp White Woman as the face of fatigue means Black people don’t see post-viral chronic illness as something that might threaten them and aren’t taking precautions. 

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There are scientific similarities between HIV and ME as well. Both trigger widespread immune system dysfunction. However, where HIV shuts the immune system down, leaving the body vulnerable to other infections such as TB, ME ramps it up, maintaining an exhausting hypervigilant inflammatory state. This is what causes our unceasing fight-or-flight adrenal response and the permanent feeling of flu. 

President Mbeki’s HIV denialism caused the deaths of at least 330,000 South Africans. With 45% of Covid infections causing long-term symptoms, how many more thousands falling chronically ill will it take before President Ramaphosa wakes up to the threat of mass disability?

Dr Nancy Klimas, Professor of Neuro-Immunology at the University of Miami, and one of the world’s foremost HIV and ME researchers, has stated that people with severe ME “experience a level of disability equal to that of patients with late-stage Aids and patients undergoing chemotherapy”.

Please note that discredited Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are to ME, what Tshabalala-Msimang’s ‘beetroot and garlic was to HIV. 

Graded exercise is contra-indicated as it can cause dangerous decline, pushing people previously only moderately ill into a wheelchair or permanently bedridden.

Read more in Daily Maverick: “The end of the road for Manto”

The big difference between HIV and ME, of course, is that there are still zero effective drug regimens for the latter.

In 2009, Dr Klimas was quoted in The New York Times:

“I hope you are not saying that ME/CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose… I would rather have HIV.”

With the pandemic continuing unabated, the prevalence of people living with post-viral, energy-limiting chronic illness, including Long Covid, will soon outnumber the nearly 40 million people living with HIV. Of those, 75% will be unable to work, and a quarter of them will be banished to Bed. 

For us, Silence = Living Death.  DM/MC

*Link for caption: Whitney has been bedridden with severe ME since 2012. He is now 39 years old.

Dispatches from Bed is a window into the world of the chronically energy-impaired. 

Read Part 1 Dispatches from Bed – whose Great Resignation?  

Part 2 Long Covid – it’s better to be broke than have your met…  

Part 3 The Sick are not faking being ill, we’re faking being Well 

For more information on Long Covid read: Still many unknowns, but long-Covid is real and deserves support for rehabilitation, says expert • Spotlight 

Sam Pearce has orchestrated music festivals, stand-up comedy shows, community-building carnivals, Africa Clockwise adventures and school climate strikes. Although her body now insists she lives in Bed, she’s still striving to be an intercultural activist for social justice.