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

Seasonal greetings from Bed. 

Since last summer, I have only once travelled more than one kilometre from Bed. That trip – in June, to visit a dying friend – took me a month to recover from. Bed is an autocratic state and daring to stray beyond its boundaries demands retribution.

Post-exertional malaise or PEM is the hallmark symptom of ME/CFS. The chronically ill might be able to go out for a couple of hours today, but 24 to 48 hours later we will be ambushed by a phalanx of symptoms leaving us as punchdrunk as if we’d gone 15 rounds with a heavyweight. 

Christmas then is quite a conundrum for the Sick: do we spend our spoons on going out to a carol concert on Christmas Eve or save them for sitting up for a meal with our family on Christmas Day? We won’t be able to do both.

If you could only go out once this December, what would you choose?

For decades, the majority of the medical profession, the media and thus society that surrounds the Sick did not believe our chronic illness was real, simply because a biomarker has not yet been mass produced. 

But why on Earth would anyone want to pretend to be ill for years on end? Who would choose to confine themselves to the bleak and gloomy land of Bed? 

In high summer, with luck, I have the luxury of contemplating three (well-ventilated) social occasions. This month I chose to accompany my young adults to hear the wise words of internationally renowned author, poet, comedian and #DeGenderFashion icon Alok Vaid-Menon. To witness them radiating love and passion to an adoring crowd at the Hearty warehouse in Woodstock last Saturday was pure joy. Alok’s jewel-bright insights and intellectual sparkle felt like the perfect way to kick off Christmas. 

Apart from the fact I lay on a couch in shades and ear defenders with my feet up, you wouldn’t have guessed that I came from Bed. I smiled and clapped. I walked to the loo without assistance. I looked completely in the pink. 

Of course, what you couldn’t tell at a glance is that I’d rested for a full week in advance to prepare for an evening out. 

You couldn’t tell that two days’ prior I’d had an intravenous infusion of saline and vitamins to help me stand and breathe at the same time. Or that I had curtailed walking and talking the previous day to save spoons. 

You couldn’t tell that I had been driven to the event lying on a mattress in the back of the car. Or that I carbo-loaded before and after to cope with the huge draw on my system that is being upright in public.

If you see me out and about, don’t conclude I must be better. PEM is always lurking, ready to inflict punishment.

You didn’t see me the next morning when I tried to get out of bed to go to the toilet and my body felt like it had been thrown against a wall. Or the next evening when I struggled to sit up for supper and had to lie my leaden limbs back down in order to digest.

You didn’t witness me enduring 48 hours of elevated heart rate and decimated oxygen saturation. When my light and sound sensitivity magnified to searing. When my temperature was veering wildly between way too hot and way too cold. When muscle spasms clamped so tightly across my chest, I couldn’t speak for the pain.

You didn’t see me three days later, still unable to think, recall words, to finish this article.

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You never see the Sick like that. So you think we must be faking it because when we are out, we look fine. It’s a horrible irony that the better we are at managing our chronic illness, the harder it is for you to recognise it.

But the Sick are not faking being ill, we’re faking being Well.

Much of Alok’s philosophy resonates strongly with the Sick. During world tour dates in Australia in September, they stated in a Guardian interview that they feel disinclined to engage with public arguments about the validity of transgender people: 

“I refuse to accept that my life has been reduced to an opinion, or to a political belief. We exist, we’ve always existed. I won’t indulge a political discourse that would have me prove that I exist. Instead, I flip the script and say, ‘Why do you not accept your own complexity?’ Because when you come to accept yourself, you feel no need to police other people.”

Onstage last Saturday, Alok wondered whether gender non-conforming people feel like a threat to certain cis people because they remind them of their own potential glory and a soaring freedom they may have denied themselves. At the other end of the scale, I suspect that we the Sick remind the Well of their potential vulnerability, an equally frightening abyss. 

This is why our reality must be denied. 

A thousand thanks to event organiser Death of Glitter for their care and consideration. Imagine if every venue provided such a comfortable sofa as standard access for the Sick alongside wheelchair ramps for the Disabled. 

Maybe then you would notice us.

Going out cost me a week to save up enough energy, and another week to recoup back to baseline. But experiencing Alok live was so uplifting, a toll of two weeks felt fair. If you’re meeting with a chronically ill person this Christmas, please make sure you are also worth the effort?

Don’t interrogate us about our symptoms. Don’t sigh that you’re “also tired”. Don’t tell us how lucky we are to spend our days in Bed. Don’t suggest we try yoga/kombucha/your chiropractor. Do wear a mask.

Be kind and cheerful and tell shining stories to sustain us through the fallout. DM/MC

Dispatches from Bed is a window into the world of the chronically energy-impaired. Read part 1 Dispatches from Bed – whose Great Resignation? and part 2 Long Covid – it’s better to be broke than have your met…  

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.