Maverick Citizen

DISPATCHES FROM BED, PART EIGHT

Why we need Sick Pride as well as Disability Pride

Why we need Sick Pride as well as Disability Pride
SICK Pride founders Mlindeni Gabela and Sam Pearce. (Photo: Supplied)

July was Disability Pride Month. No, I’m not surprised you didn’t know. Compared with LGBTQIA+ Pride in June, Disability Pride 2023 has been notable for the complete lack of loud corporate endorsement across mainstream media and retail.

Celebrities were not competing to jump on the Disability Pride bandwagon. Perhaps just a handful of the usual “inspirational” quotes and a smattering of objections to the phrase “differently abled” across socials? When ‘Disability’ itself is a dirty word, you know there ain’t no Pride here.

Graphics by Pacing Pixie: Disability awareness by a proudly Disabled educator. Learn more about Pixie and her work here.

Those of us with dynamic disabilities caused by autoimmune diseases like ME or Long Covid have wildly fluctuating capacity – our legs work fine, but our metabolisms don’t. As a result, sometimes the Sick need a wheelchair and sometimes not. (For some reason this often confuses and even offends people who have no problem with the concept of only occasionally needing to use reading glasses or crutches.) It is a savage irony that those of us with chronic conditions who are not blatantly physically but far more functionally disabled than the conventional Well wheelchair-user battle to be recognised as Disabled. 

Those of us who are so severely Disabled by energy-limiting chronic illness that we are rarely able to leave our beds, let alone our houses, suffer from an invisibility so total that most people are completely unaware of our existence. Despite the fact that there were millions of us before the pandemic, and millions more since, we need a lot more than ramps to give us visibility.

As we approach Severe ME Day on August 8, I broadcast this message to the citizens of Bed: 

In the absence of any external acknowledgement, we the Sick must be proud of each other and offer mutual congratulations on another year of surviving this purgatory.

I am proud of you, dragging yourself up every day despite feeling like death. Getting through that first hour or two of hypoxic hangover feeling so grim, Well people would be taking themselves to hospital. You deserve a medal.

I am proud of you, not being able to breathe and stand up at the same time, and yet trying to carry on living, loving, parenting. You’re a bloody trooper.

I am proud of you, rolling with the punches from the fumes and the noise and the razorsharp lights that assault you every day. 

I am proud of you, diligently getting food down despite the constant nausea and retching. 

I am proud of you, making that enormous effort to clean yourself; I’m even prouder when you accept that you don’t have enough spoons and put off washing for another day. That’s hard-won wisdom.

I am proud of you, smiling through the pain. Saying nothing about the clamp around your heart or the scary tremors or wearing a suit of lead. Because you figure there’s no point spoiling their day as well. You’re a hero.

I am proud of you, not panicking when you find yourself unable to think, floundering for words, losing your capacity to express yourself, but far too young for dementia. Deep breaths, you are still you.

I am proud of you for coping with so little sleep it’s impossible, so little energy your organs are struggling to function, so little oxygen in your blood you constantly feel half-suffocated and your brain strangled. Yet here you are, doing everything in your power to keep going, to keep your family going, to keep your relationships alive. Your tenacity is magnificent.

I am proud of you, stuck in Bed, day after day after day, trying not to go insane with frustration. Striving to find purpose in a life in permanent lockdown, supremely socially distanced, trapped in solitary confinement while the outside world accuses you of malingering

I am proud of you, not despairing when you don’t even have enough energy to roll over, when you’re too weak to lift a cup, too ill to look at a screen. Patiently listening to podcasts, waiting for someone in power to grasp the enormity of this suffering.

I am proud of you, lying absolutely still in the dark, dedicatedly recharging yourself the only way possible. Your stoicism is regal.

I am so proud you have learnt how to ride the cycles of pain and the waves of grief, to accept not fight, to let them wash over you, to yield – not surrender – in order to survive. The Sick know that a flash of anger can be fatally draining. Your self-control is superlative.

I am so proud of you finding joy in the small things, determinedly taking pleasure in just witnessing: a new leaf; birdsong; the reflection of dappled sunlight on walls.

I am so proud of you, pacing yourself: resting up in advance to handle that doctor’s appointment next week, that parents’ evening next month, that family wedding next summer. You manage your condition so well, none of the people who sees you realise what it cost you to get there, what it will cost you to recover. None of them has an inkling that this is the only time you’ll leave the house this month – or how galling it is to be told “But you don’t look sick!”.  

But the Sick know and we salute you.

Most of all, I’m proud of your persistence in a world which continues to insist we don’t exist. That you are still here, in the face of denial and disbelief and derision, while suffering a disease worse than cancer but with zero treatment. That your despair is only periodic is a credit to your capacity to endure. 

And I am proud of us, how we have found our community online and hold each other up, teach each other how to manage, share strategies and sustain ourselves with black humour.

The Well have no idea how to live when everything you once had is wiped out overnight and all you have room for in your mind around the relentless suffering is how to survive into the next moment. As humanity twirls on the precipice of the Anthropocene abyss, between the fires and the floods, the Sick have much to teach the world about fortitude and forbearance. Be proud, because you are doing this with such grace. 

To celebrate your persistence, the inaugural Sick Pride will be held on 12 November 2023 on a lush lawn somewhere in Cape Town (tbc). The Society for the Inclusion of Chronic Knowledge (SICK) invites all people with energy-limiting chronic conditions to come join the Lie-in. 

Start pacing yourself Bedizens, it’s gonna be Sick. DM/MC

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

Read Part One: Dispatches from Bed – whose Great Resignation?  

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

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

Part Four: Do Sick Lives Matter? 

Part Five: It’s time to normalise being Sick in public 

Part Six: The Seven Deadly Symptoms of ME and Long Covid 

Part Seven: The Seven Deadly Symptoms of ME and Long Covid (Part Two) 

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  • Justin Hall says:

    Thank you Sam, your words were spoken in the park on Sunday 12 November and they were a welcome acknowledgement of who we are and what what we go through. I look forward to more of it!

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