Inside an Invisible Illness

Because being a bookworm was not all I was destined to be

[thebootydiaries]

Someone: why do u always say u feel sick

Me: because, my sweet dude, I literally cannot determine the line between my mental illness and physical unwellness anymore. I am Literally Always Ready To Die I am in a constant state of uncomfort my guy it always makes me feel like I’m gonna be ridin the queasy train to regretville

Me: haha

[sotosummarize]

Me, a chronically ill person:

[disabled-ratman]

It's kind of alarming how many times a week I think to myself, "Well, I guess any rational person would go to the hospital for this, but that takes time and effort and I could just have a sandwich and/or nap instead."

[crapchronicles]

Just saw a post along the lines of “trust your body because it knows how to digest, beat its heart, and swallow”

And I’m sitting here like bitch? My body knows none of that.

[spoonie-central]

I was only confined before my wheelchair.

[allthestuffandeverything]

How to act around wheelchair users

Interacting with wheelchair users, a crash course:

1) if you dont have the time or time to read the rest of this, then at least take this part - start out from the assumption that you should give the same level of respect and treatment towards wheelchair users as you would to a walker.

2)if you think you’re breaking the tension by saying something cringey and demeaning like “no speeding lol!”  “got a license for that thing? haha!”…you’re not.  Please don’t do this, we’ve heard it hundreds of times and it wasnt funny the first time.

3) You can say the word disabled.  Most of the disability community prefers “disabled person” rather than “person with a disability” - and nearly all prefer it over “handicapped” “handicapable” “differently abled” or other condescending euphemisms for disability.  Use the phrases “X is a wheelchair user” or “X uses a wheelchair” rather than “X is wheelchair bound” or “X is in a wheelchair”

4) Please remember that we are adults and grabbing us and moving us places without consent or warning is classified as assault.  You should not grab strangers simply because you see they are using a mobility aid, that doesnt make it okay.  Assaulting people is not your kind deed of the day!!

5) respect our privacy.  Please do not ask why we use a wheelchair (extremely rude!) or whether we can drive, engage in intercourse, have children, etc.  

5) following off of 4, dont assume that we need your help.  I saw a post recently that had a comment from an abled person that basically said they felt awkward talking to wheelchair users becuase they want to help but dont know how - in the context of…no help being needed.  Many people see wheelchair and assume “help needed!!” and rush to our aid, ignoring our consent or autonomy in the process.  That is not okay.  Ask first.  And respect a no.  But before asking - does the person actually seem to need help?  Are they stuck on a curb (that’s happened to me!) or have a flat tire, or struggling in the terrain?  Or are they simply chilling on their phone, or opening a door by themselves with no signs of difficulty, or pushing themselves down the sidewalk minding their business; yet you assume they must need help because wheelchair = needing help??

-

This isnt a perfect list, but i think its a good overview of the basics!  And remember that disabled people aren’t a monolith, and if you are extensively interacting with a wheelchair user (such as a partner or family member, or a roommate) you should definitely see what they personally prefer and listen to them as well!  

[spongebob-autisticquestions]

If you see someone walking and get into a wheelchair

If you see someone without noticeable aid get park in a disabled spot, but has the disabled badge visible

If you see someone receiving extra support in school, or extra time in exams

If you see someone receiving something that will help make things more accessible for them

If you see someone wearing something “different” for sensory reasons

Do not yell at them

Do not tell them they don’t need it

Do not tell them “real disabled people will need it”

Do not tell them they’re “not disabled”

[chronicallyillblonde]

““When you can’t remember if you actually took your medication or you just thought about it.””

—

[spoonie-humour]

Spoonie Quirk

Shamelessly sitting on the floor wherever you go bc fuck finding seating

[potsiefaerie]

I Stood Up and Immediately Regretted It: a Memoir

[spoonie-humour]

Being chronically ill and concerned about your weight is wild like… oh u wanna exercise? U can’t. Faint. Pain. Oh so eat healthy then? Nope. Need to eat one hundred salts. Meal replacements? Not enough water.

Like listen body I’m tryna LOOK AFTER U?

[spoonie-humour]

Abled person: so if you just change your mindset you'll feel better

Me: my :) autonomic :) nervous :) system :) is :) broken :)

[styna]

I’d like to say, as a chronically ill person… I’m not brave. I’m not strong. I’m not an inspiration.

I’m just stubborn as fuck.

[jessthecrohnie-blog]

When I’m Nauseous From Not Eating, And Then I Eat And Get Nauseous Because Of Said Eating

[chronicallyjessica]

“You know that chronic means I’ll always have it, right?”

[clinically-chronically]

Me: ......

My Autonomic Nervous System: 'Cause you're hot then you're cold. You're yes then you're no.

My Autonomic Nervous System: You're in then you're out. You're up then you're down.

[disabled-ratman]

is it like… a universal spoonie experience that sometimes u have one of Those Nights. when ur always the wrong temperature and u feel sick and everything’s painful and uncomfy and ur sweating and shaking and ur heartbeat goes all weird and u end up getting 1 hour of sleep max. do we all get this. it sucks.