“You don’t look sick”

“Life is for living not laying in bed”

“If you were really THAT sick you would be getting help.”

“If you’re really THAT sick you should be in a care home/hospital”

“Aren’t you better YET?”

“If you’re THAT sick you would be dead”

If you live long enough with chronic illness - you’re gaslit because you haven’t died.

We aren’t rewarded for surviving - we’re punished.

People can’t fathom the grey that we exist in. They understand acute illness and they understand terminal illness - they don’t understand severe chronic illness where the suffering is relentless and extreme but won’t necessarily kill you.

I’m convinced this isn’t because they CAN’T understand it - but rather they simply don’t want to. It scares them because it makes them realize that life is fragile. That they too could end up getting sick one day and just never getting better. Abandoned by the medical system, friends and family and essentially left to rot.

It’s awful how little compassion we give to people suffering from these conditions - and I try and raise awareness about it in the hopes people will think before they judge us.

https://www.disabledginger.com/p/just-die-already

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@DEDGirl I can only imagine. People are very strange about suffering that goes on for a long time and doesn’t “end”. It’s terribly sad. Did you eventually get off the TPN?

@broadwaybabyto yes, but not because I didn’t need it. I got sepsis annually. I’m a single mom. It’s really scary. But I don’t absorb nutrients or hydration, so I’m malnourished & dehydrated without it. Which is also scary. But that’s an invisible illness, which comes with a whole lot of weirdness & ablism. Society is very weird about illness, no matter how it presents. AND when your illness causes you to eat everything you want & lose weight, it’s not taken seriously.