Springtime means its my 4th Long Covid anniversary.

Nothing is enough to help you understand if you don't want to - and if you know, I don't need to say. But it still all deserves witnessing. So here's what my anniversary means today.

For an easy-read text only version, scroll to the bottom. x

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It’s Spring again - which means it’s my Long Covid anniversary.
This day 4 years ago I went to bed with a blinding headache, mild cough and flu-like tiredness.

We knew it might be covid - for me and the colleagues that fell ill too.
We’d facilitated a busy closed-door workshop for many hours in Central London, right on the Thames. March 10th, 2020.
(On that day, the idea that the UK would actually ‘lock down’ was still wild - unreal.)

That day now marks a before/after moment.
To quote Emily Bazalgette: “One day I got ill - and then I just never got better.”

Over a matter of weeks, I swear my body aged at least 4 decades.
For 18+ months, I woke without the energy to lift my legs from the bed.

At all, on a bad day.
Via a looping, white-lie pep talk on the rest.
(you can do this, Caitlin. and you have to).

Every fell felt shifted/altered/changed.
I felt so ill and broken.

I came to viscerally understand the meaning of ‘frailty’, ‘fatigue’, ‘vulnerable.’
Found out what my brain and tissue felt like under the influence of continual, sustained damage.

Who loved me when I was whittled down to my core and so much more in need - and who did not.

Mastered the endless calculation of the exact energy toll of every action - counted in minutes, seconds, footsteps. 1000 steps a day on a good day.
Carefully meted to cover kids, bathroom, stairs, survival.

Began living the truth of how scary ‘support systems’ and health services become when you stop being simple for them.
How mean, petty, judgmental and harmful.

The (immediate, seemingly irreversible) dissolution of my credibility shocked me.
The binary light switch: from ‘valued patient’ to ‘waste of my fucking time.’

The public services I’ve worked with often talk about the people that ‘fall through the cracks’.

Those services are often designed and run by people that don’t understand there are no ‘cracks’ to fall through.

There are chasms. Deep and Angry.

In academic papers, or the mouths of ‘service providers’, that ‘fall through the cracks’ sounds so soft.

(An accident; a gradual slump floor-ward; a sad stumble - from the land of ‘designed for’ services to ‘less well supported’)

But it felt much more like a giant, violent push off the cliff - into jagged, wracked, imposed invisibility.

To be fair: #notalldoctors were awful. Some were just confused - blank - dismissive.
But that still cost me so much precious energy, every time - for nothing.
A year in, one doctor finally listened.

(“Please, help me - how do I make it through this when I don’t know which days I can even speak? If I’ll remember the word for ‘dishwasher’? Or my niece’s name?)

He was kind. Believed me.
But when I called back a few weeks later to follow up, he’d resigned.

I am desperately lucky to have:
- sustained work
- become disabled when working from home was briefly normal
- become better at all, let alone in time
- tremendous, layered privilege
- access to good pay
- access to medical literature
- the money to pay for some medical support

To have fallen ill alongside friends, and amid elders with ME - so that we knew we weren’t going crazy, despite the endless structural gaslighting.

I’m thankful to have survived it. Some days I’m even thankful for its dark gifts.

But my three-plus years of Long Covid disablity (maybe ME) was the most horrific, bewildering experience I am likely to live through.

No other hardships, and I have lived my share, prepared me for it.

Long Covid blew me hollow and laughed.

I know that most of you have ‘moved on’ from Covid-19.
But there are millions of us around the world who can’t.
For many, disability will be permanent.

“People with Long Covid deserve to be witnessed - not forgotten.” - Natalie Bear

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Caitlin Connors writes about chronic illness, neurodivergence, parenthood, growing through crisis and grief, and community-driven data and storytelling.

With occasional cross-posting from Divergent Kin.