Thread by @AdielGavish

Many with #longCovid are finding it difficult to describe what they are feeling. Those of us in the #MECFS and #ChronicLymeDisease #EDS community have had longer to think about and put these experiences into words…

Post-viral illness wreaks havoc on multiple systems within your body which of course are interconnected. The way I describe it is that you are losing your body’s life force — this is different from your soul. And it’s not just energy. It’s your actual life’s force.

In the beginning when you first get sick, you can still feel the healthy parts of you versus the sick parts — kind of like layers of an onion.

But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.

This is probably one of the more frightening realizations. The illness is not just infecting parts of you, it is embedded, it is now a part of you. The ways in which you used to adapt and cope continue to evolve as the illness changes you.

It feels like a slow and methodical disintegration and deterioration. Some people have better days, followed by days in which we are not able to get out of bed. Some of us are stuck for days, some for weeks, others for months and years.

The things that we used to love to do are taken away from us. Even something as mundane as going to the coffee shop, going for a walk with your dog, being able to lean over and grab something from the refrigerator without getting dizzy. And so you continue to adapt…

Friends & family start to fade away because they have lives & they need to live them. And so they move on. I do not fault them, it would be nice if they checked in now & then, but I do not fault them for wanting to live. Altho it is acutely painful to lose those you love dearly.

So at first you give up one thing, and perhaps you are able to do it halfway, like a little bit of yoga or going to the coffee shop once per week instead of every morning. Your routine changes, and then you realize one day … that your life is now unrecognizable.

You adapt to one disability, and then you adapt to another. You surrender and you keep surrendering. But all this time, you still maintain hope. Because it is part of the human condition that Hope never dies. Even if it feels like your body slowly is.

You bargain with the Universe or Gd, or whatever you believe in, and you think to yourself, I can do this for another month, I can do this for another year if I have to. But after that, surely I will get my body & life back. Surely my friends and loved ones will come back to me.

But the truth is, we exist in a certain type of purgatory. We are stuck. Doctors don’t know how to treat us, we try many many different things, become guinea pigs, lose our life’s savings, & end up locked in our bedrooms, closed off from the world. Except for online.

Sinking into the seemingly never-ending abyss of the chronic illness unknown.

There’s this intangible feeling when you sink deeper into darker waters and yet you look up and you can still see that sea anemone shape of sunlight. Sharp spikes of potential cure.

Maybe this will be it? This will lift me out of this purgatory? This treatment will surely set me free. Or could it potentially hurt me? This is a good pill laced with scary. If you take it, you could get stronger. But you could grow four eyeballs too.
#MECFS #LongCovid

We are trained to believe that doctors are going to heal us. Like miracle workers. That we take this thing and a few days later we feel perfectly fine. But that’s not the story for so many of us. The “#millionsmissing.”

Sometimes the best you can aim for is less harm.

I got sick in 2012 and pretty much became quarantined by 2015. I barely ever saw my friends. My life and my movements became slower. My world became smaller, and I started existing online.

And now...10 years later, the beast of chronic illness has evolved. Its like a hybrid creature you read about in Greek mythology. The head of a man with the horns of a ram, the body of an elephant, & the tail of a snake. The paws of a lion. We will continue to fight.

We will continue to search and ask questions and challenge the medical community to finally make the connections between #LongCovid, #MECFS, #ChronicFatigueSyndrome, and all other #PostViralIllness.

We will fight for equitable research and funding.

@threadreaderapp unroll please.