Life With Chronic Illness

[itschronicillnessinnit]

Oh, you rejected my request for a sit/stand desk? Okay… so how about an ergonomics assessment instead? How about I make you overhaul the entire workspace because it’s a health risk? How about that?

[itschronicillnessinnit]

Ouchin' around the Christmas tree

Have a happy holiday

[itschronicillnessinnit]

Me: I’ve been doing so well late-

My knee: *cracky cracks*

My hip: *stabby stabs*

My GI tract: *squirmy squirm*

Me: oh fuck

[itschronicillnessinnit]

Me, knee deep in a flare up after being okay for a month: progress isn’t linear progress isn’t linear progress isn’t linear progress isn’t linear progress isn’t linear progress isn’t linear

[wishful-seeker]

As a disabled person this is a phrase I've been repeating myself that i think everyone should learn.

When it comes to health, "play no games."

It means 2 things:

Never tough it out, never wait to take meds or use heat packs or sit down, when your body says stop: fucking stop. Immediately

And always trust your gut when it coms to doctors. If you get ANY weird vibes, get a different. Fucking. Doctor. Dont give them the benefit of the doubt, don't try to convince them.

Play. No. Games.

[disabled-dippy]

One of my friends gets really happy whenever I don’t use my cane. She never fails to point it out and say things like, “oh you must be on your way to getting better!”

And like, I get it- she doesn’t like to see me struggling or in pain. But it hurts to have to tell her “no, this is just a good day” and see her face fall the next time I do use it.

A couple weeks ago after another comment, I told her that I was in a lot of pain and was actually struggling really hard to be there. I should’ve been using my cane, I told her, but I wasn’t, because I was tired of how people were treating me when I do.

I prefer being in unecessary pain to getting stared at. I prefer being in unecessary pain to getting dirty looks when I walk down the street. I prefer being in unecessary pain to the pitying comments people make or the pleas for me to just pray more. I prefer being in unecessary pain to feeling like a freak. I prefer being in unecessary pain to the awful anxiety I get from using my cane in public.

I don’t think she expected that answer. So hopefully this is a reminder to you too, that just because someone with an invisible disability outwardly is not using their accommodations or their mobility aids, or just because someone does not appear to be in pain, that doesn’t mean that they’re not actually suffering. It can, and often does, mean that we have chosen to suffer in silence instead of being othered and facing backlash from those around us.

[itschronicillnessinnit]

Finding it amusing that my part time contract is under review on whether they can find someone to cover the singular day I am not at there as if my disability is negotiable.

No, I cannot work full time. What about chronic pain makes you think it can be reasoned with?

[wishful-seeker]

As a disabled person instead of people saying "i hope you get better soon!" I would much rather here any of these:

"I hope you can rest soon."

"I hope you have a good day soon."

"I hope the pain lowers soon."

Saying "i hope you get better soon!" Sounds like "i have never interacted with a disabled person, i have no idea what to say to in this situation so i will say the thing i think im supposed to say."

We are not going to get better in the way you assume.

Be more genuine with us. Treat us like any other person.

[itschronicillnessinnit]

!!!!

[asexual-amanita]

“I never let my chronic illness stop me from doing things!”

That’s nice, I do. Not listening to my body is part of what got me this bad. Sometimes you have to balance taking care of yourself and achieving your ultimate goals.

[itschronicillnessinnit]

*Starts to get a new ouch*

*Furrows brow. Takes out cigarette and blows a wisp of smoke.* “Now, is this a short term thing or are you plannin’ on stayin’ here a while? Cuz’ if so… you need to know a few things.”

[zylahbee]

there is something to be said about the way that a mind adapts to a sick body..

my mind is used to the way that my days go, my routine and my treatments and therapies, those are all normal to me. taking 20 pills a day, getting needle stabs regularly, not being able to work a full time job, spending majority of my time and energy on my health, all that is adaptable and liveable to my brain.

but what i have not adapted to, has nothing to do with work, or treatments, its the stuff you don’t think about until it happens.

i have not adapted to missing human connection, i have not adapted to not going outdoors every day, and i have not adapted to going days or weeks without intellectual stimulation.

now obviously no two people are the same and there are exceptions to this. but generally speaking we are social, curious creatures who are meant to have connections with each other and with the earth.

i don’t think i will ever be able to adapt to missing out on those.

[itschronicillnessinnit]

This was worded so beautifully.

There’s nothing that makes me feel more isolated than wanting to spend time with people and always either having to make a sacrifice at the expense of my health to be with people or having to say no because it will make things worse and losing the fickle connections I had made.

It’s always a lose-lose scenario and it sucks because surely, it doesn’t have to be this way.

[miinobobeano]

It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.

I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.

[itschronicillnessinnit]

“I shouldn’t have to advocate for myself. Sometimes I want to exist without having to convince people that I am deserving of good overall wellbeing.”

[itschronicillnessinnit]

I’ve been trying to make plans with my non-chronically ill friends and it’s starting to get on my nerves at their lack of effort and my partner said this thing about, “our friends should be trying because they’re always well enough to, and because you always try when you’re well enough to.”

[little-miss-rasputin-pageant]

having chronic pain is just like. ur sitting perfectly still doing nothing meanwhile the space above your head keeps flashing -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp

[itschronicillnessinnit]

Sometimes I ouch.

And other times I ouch.

[itschronicillnessinnit]

Being co-morbid with conflicting ailments is insane.

"You need to stand more and not sit so much." Okay but it hurts.

"You need to rest and elevate your joints." Okay but it hurts.

[itschronicillnessinnit]

Crazy how a desk job, in theory, would be better suited to me because I’m not on my feet all of the time and putting stress on my joints that get inflamed and cause pain.

Also crazy how a desk job, in practice, causes tight hips, back pain and sciatica issues because it’s sedentary and causes muscles to tighten due to lack of movement which causes pain.

Crazy how there’s no in between.