Diane Shipley: Knowledge of Missing Out

Diane Shipley: Knowledge of Missing Out

Absolutely LOVED this piece. She talks about having ME/CFS and what it was like watching able-bodied people whine about what they were missing during lockdown while she (and the rest of us sickies) have been missing out for years. It so captured my own feelings of rage at being left behind all these years, as well as the sheer schadenfreude I felt during lockdown. All I kept thinking was "welcome to my world, bitches! Suck on it!"

 

I didn't experience Schadenfreude but felt like healthy people were getting a glimpse of what it means to be chronically ill. Just a glimpse because they were not having symptoms or being met with disbelief or hostility for staying at home.

 

love that

At the beginning of the pandemic a friend said to me (who she knows is rarely well enough to leave the house and couldnt go for a walk if her life depended on it, & whom she has seen sobbing with loneliness & isolation on more than one occasion) while moaning that she was stuck inside decorating and watching endless tv, (i could imagine her giggling with her husband...) and was only allowed out once a day...
"its ok for you Jem you're used to it"

People are just so unbelievably dense at times. I asked her how much easier she thinks it would be for her if she couldnt go out, decorate, watch much tv or have a husband and had been stuck in for 20yrs... Would you have gotten used to it? i asked. 'i suppose not' she replied.
But somehow she still thought it was worse for her.

Betraying the suspicion within most people without objective proof of sickness... that somewhere somehow it isnt imposed on us but semi-chosen.

Its when people tell me all about their wonderful holidays & then ask me 'dont you ever want to go anywhere'? It makes my head explode.

I hate the way people think my life is 'normal' for me, they just get used to it, as if its just y'know 'the way it is' & is as such, fine. Instead of the gaping, gnawing, screeching chasm of grief and frustration and utter intolerable misery that it is.

I agree i quite often think f off, f off, f off, too.

Its not pretty and i do rage at God quite often...

and then i think of those who are very severe, catheterised, tube fed, in agony, who havent been well enough for a visitor in 2 decades, who are at this moment sitting in a pile of their own diarrhoea, in a silent darkened room, waiting for a carer who treats them like crap to come in & clean them up, desperate for their next dose of morphine, that the GP wants to take away because they think a prescription for gardening would work better.

And i then i think that its really me... I am the one who ought to f off.

 

That is so penetrating @JemPD

This living torn in two- grief, rage, sadness at what we miss- and true appreciation for that bit we do have, some of us more than a bit, is a real killer. I feel ripped in two and I often don't know how to hold it all.

 

An elderly gentleman recently commented to me how awful it was that he couldn't go to the cricket during the pandemic.

I'm also getting really fed up of 'celebrities' and other non-sick people telling us about how they wrote an album, or a book or learnt a new language or a musical instrument etc etc during a few months of lockdown.

 

I wrote a short book and a bunch of music and then I crashed for three years and never recovered

Those stories do my head in and make me think of everything I left unfinished

 

The pandemic has been a "double loss" for me because I would go out more if Covid wasn't a problem. Not much more, but a little.

 

Got a different perspective on this. Not only because my family and a number of friends have been really supportive, but also because I catch myself doing the same things. Forgetting about the grief of acquaintances or even close friends. I partly blame brainfog and having much on my plate myself, but it's also a good reminder that most other people likely also have other things going on.

Other than that when I was mild I had different "pet peeves" than when I got partially bedridden. It used to bother me that I couldn't go out as often as others, then it bothered me that I couldn't go out at all. Sports same thing and so on and so fort.

It's very difficult for people not in our shoes to know what we're going through, even now I've forgotten what it felt like in the worst days. My family actually has a better recollection of that.

 

Needed this today. Thanks for posting it when you did.

My dog is barking with FOMO excitement at the sound of people jumping into the water on a hot day.
I have KOMO (or SOMO - sick of) myself. (Nice to know it’s something anyone might feel, when it seems ungrateful, and yet all I want is for them to F off. Today)

ETA: I think maybe I need to move away (from a place and home I love) as this, every summer, is affecting my character.