NOT FAKING IT

The Couch Adventures of a chronically ill queer always down 2 fight the ableds

[badjokesonme]

full offense to my immune system but wtf

[theblueboxscholar]

🙃 Just me?

[newhologram]

[chronic-n-iconic]

Signs of psoriatic arthritis: you may have like 20 feet idk bro

[soyeahso]

autoimmune disorders are fun

[helpforhashimotos]

[lifewithra]

[warriorgoddesswriting]

Why Do You Hide?

“Why do you hide your illness?”

Maybe it’s because people don’t even believe me when I tell them I’m sick.

Maybe it’s because I can feel people become uncomfortable when I talk about it.

Maybe it’s because I’m tired of having to disclose extremely personal medical information to random people. 

Maybe it’s because I’ve had doctors doubt me. 

Maybe it’s because I’ve had people I love doubt me. 

Maybe it’s because I’m looked down upon when I need help.

Maybe it’s because of all of the times it’s been implied that I’m just not trying hard enough to get better.

Maybe it’s because it’s easier to pretend I’m okay than it is to explain that I am in fact in pain this very minute even though I’m out of the house because if I didn’t do anything every time I was in pain I would literally never do anything because I am in pain every minute of every day.

Maybe it’s because I’ve had my sanity questioned when I try to open up.

Maybe it’s because I’m terrified of the harassment I would face if I identified myself as disabled.

Maybe it’s because I know you’ll never understand unless you experience it (and I would never want you to).

Maybe it’s because I’m so freaking sick of hearing the judgment in healthy people’s voices. 

Maybe it’s because society has made me feel that disabled people are lesser than able-bodied people.

Maybe it’s because I don’t feel important enough for anyone to care.

Maybe it’s because I feel like nobody would want to be around me if they knew how bad things really are.

[professorpotato-deactivated2021]

the best way to explain autoimmune disease to others (via @kuroown when I was in the hospital and this joke she made still makes me laugh)

[tired-bird]

Tfw you’ve got autoimmune issues

[fibromyalgiamademedoit]

[positivity-in-pain]

[sofaspooniethoughts-deactivated]

Things I’d like people to stop mocking me for:

- Needing to nap. - Eating ready meals sometimes, rather than freshly prepared dinners every day. - Finding it difficult to get comfy enough in bed to not be sore. - Needing rest days. - How far I can walk. - The fact that I can’t carry much. Please feel free to continue this list…

[dankmemeuniversity]

[positivity-in-pain]

[hunterinabrowncoat]

You know what? Telling disabled/chronically ill people things like “there’s still hope” or “never say never” is actually really unhelpful.

As a chronically ill person, I have to come to terms with the fact I will never be able to do xyz. And I’m going to live with abc my whole life. It sucks. And I’m upset about it. I’m angry. I’m devastated. I’m grieving.

But I need to process that information. Coming to terms with the permanence of our issues, and facing a life that looks very different to the one we planned is vital to our mental health.

And it’s not pretty. It’s difficult to hear. I get that you want to say something comforting. But sometimes all you can say is “that really sucks I’m sorry”. Sometimes there is no fix. Sometimes there is no hope for recovery or for things to get better or change. Sometimes it just sucks. And we should be abel to talk about how much it sucks, without people trying to offer platitudes.

[chronicallyillz]

Chronic Illness flare clinics need to be a thing.

They need to have holistic chronic illness clinics. You can go to them while you’re in a flare. They have low sensory rooms with soft beds and low light tv’s. Have doctors to administer flare reducing meds/pain meds, but also have holistic professionals like massage therapists, acupuncturist, mindfulness workers, etc etc.

Basically so that you’re entire body and mind can heal because the reality of this is mind and body health need to be aligned.

This is especially necessary because going to an ER for a flare can be so terrible and increase the intensity of the flare. It’s so bright and you have to wait for hours to be seen by doctors who let’s be honest don’t specialize in chronic illness, and are trying to jam in as many patients as they can because of being over capacity.

This is what healthcare would look like if it was designed by the sick.

[spoonieofmayo]

Healthcare designed by the sick

[the-twitchy-life]

WHAT AN IDEA.  Asking people what they want, then giving it to the people who need it, in a way that they can benefit from it.