There's a certain distance that someone with a chronic illness feels from able bodied folk, especially some friends and family. Or sometimes even from people with milder manageable chronic conditions. There's a lack of understanding what a debilitating chronic condition does to your quality of life. That you may need support and you know you aren't going to get it as your folks move on with their own lives.
The distance grows as our isolation grows. We're no longer fun, we haven't the energy. Often we have less money so we don't socialise as often. Although the lack of energy plays into this as well.
We're less fun to be around now.
We have a language we use with each other when we communicate with someone who's ill.
"Get well soon."
"Hope you recover soon."
"How are you doing? Are you feeling better?"
It's hard for us when we are able-bodied to truly understand what a chronically ill person means when they say they are ill. It's a permanent condition and they are exhausted.
Being ill is only temporary isn't it? Buck up. "You'll feel better soon."
The truth is we won't get better.
The distance is massive between myself and friends and family who are not as fatigued as I am. Other than my partner the only people who realise are my father and my brother. Even my father slips up sometimes.
It's language. It's our culture. Our society is based on our usefulness.
Although in his case, I know he's hoping I feel a little better for a while so I can get stuff done. Because being constantly fatigued is draining, it's depressing. Because he had his own Post Viral infection in the 1980s he hopes I recover. It wrecked his life. Which is the last thing he wants for me.
Other folks though. They don't get it.
They don't get why I need them to wear a mask. They don't get why every time they say or write an insincere get well soon message it's like metal scratching down a chalkboard on my psyche.
It comes off to me as passive aggressive. As if I change my ideas and buck up I'll magically feel better.
I'm not going to get better. If I'm lucky I will have more "good days" than "bad days."
I just had to send a link about spoon theory to a relative.
My Grandmother once told me about living in our small fisher town after she became a widow with a disabled child.
"Everyone rallies around you at first. They constantly come round and offer you lots of help."
I remember we were doing dishes as I came to visit for the weekend. It was the last weekend I spent with her. She died the week after.
"But after 6 months, you have to fend for yourself. No one bothers after that. You're expected to cope on your own."
Which my Grandmother did. At the expense of her mental health, time and energy. She had to cope. No support systems existed for her anymore. No husband, and his family didn't help either.
She was widowed twice.
I remember reading once about a widow that had 9 husbands. In the 1800s fishing was even more deadly in the North Sea, the men got carried out to the boats on the backs of their wives. They couldn't get their trousers wet as it was heavy calico. They couldn't afford to catch a cold and die. Doctors were expensive.
The women then climbed up the hill, over the Enzie Braes to Keith to sell their fish. A distance of 9 miles. Those women were tough, and generations of this create a harsh culture where you survive. But there's no time or mental space for comfort.
They lost a husband. Remarry. No time for grief, no time for crying. Survive. Live.
The Buchan Peninsular is a cold windy place. In the winter the cold blows through into your bones. The sea is so cold Aberdonians invented a high calorific bread of suet and salt for the fishing boats that went out further into the North Sea.
https://scottishscran.com/butteries-recipe/
I think I get a lot of my mental outlook from my Grandmother in that way. You don't cry in public as a woman. Even if your heart breaks. You can't seem weak or hysterical. The world doesn't have time for weakness. It never did.
People have their own issues to deal with.
While there's often a monetary idea to mutual aid. I've seen it practiced across the fediverse. It's sometimes the boosting of a post.
But often it's a heartfelt response to someone's heart break. It's a "Hey, I see you."
It's comfort and a genuine acknowledgement of someone else's pain. I see it practiced across the ME and Long Covid community. We get more comfort from strangers across the internet than our own families and friends in meat space.
Unless you've been there in either position, you have no idea of the comfort of that.
An acknowledgment of yes, you are ill. I stand with you.
I want the comfort. I want the acknowledgment of mine and others suffering. I don't need people to try to make it better (although that would be nice, if you have the capacity).
I need some of my meat-space folks to realise and acknowledge I'm not going to get better. I wish they could show solidarity in the way that folks on the fediverse do. I'm pretty sure some folks on the fediverse feel the same with their own meat space communities.
It means so much more than an empty "Get well soon."