i-the-spoonie

[i-the-spoonie]

The thing about becoming disabled is that it touches every part of your life—which means it changes every part of your life.

Your own self image will likely be completely broken down. You are not who you thought you were, and your life will not be what you thought it would be. It’s up to you to decide how you want to rebuild yourself. It’s up to you to figure out how to even begin to do that.

Likewise, the way you see the world around you will change. You start viewing everything through a different lens. You have to decide how to interpret what you see, and what you do about it.

You learn which parts of you are intrinsic, unchangeable. In some ways, you become a new person. You learn things about yourself and about the world around you that other people might never have to learn.

[i-the-spoonie]

my new thing whenever an embarrassing memory jumps up out of some backwater neuron to t-bone my present-day thought process is to declare a statute of limitations. like i can burn down an entire building in the state where i live and the law deems it both unfair and illegal to prosecute me after six years have passed, i think that thing i said in high school can be expunged from my record.

[i-the-spoonie]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[i-the-spoonie]

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

[i-the-spoonie]

[i-the-spoonie]

perfect representation of what it’s like to be bed bound because of chronic illness /disability.

[i-the-spoonie]

How the fuck am I supposed to explain chronic fatigue to someone??? Like I need at least one nap a day to even kind of function in addition to going to sleep earlier than most people might. I am constantly exhausted, I wake up exhausted and I end the day absolutely drained and then I’m expected to do it all again the next day. How the fuck do I explain that sometimes even doing nothing is exhausting? How do I explain that I can’t do things sometimes because I’m so far past tired that I’m essentially not functioning? How do I explain to someone who says they get exhausted but can still function when they’re at that point that my exhausted is completely and utterly different?

[i-the-spoonie]

As a wheelchair user I'm trying to reframe my language for "being in the way."

"I'm in the way," "I can't fit," and "I can't go there," is becoming "there's not enough space," "the walkway is too narrow," and "that place isn't accessible."

It's a small change, but to me it feels as if I'm redirecting blame from myself to the people that made these places inaccessible in the first place. I don't want people to just think that they're helping me, I want them to think that they're making up for someone else's wrongdoing. I want them to remember every time I've needed help as something someone else caused.

[i-the-spoonie]

Non spoonies don’t get it.

[i-the-spoonie]

“Living with anxiety is like being followed by a voice. It knows all your insecurities and uses them against you. It gets to the point when it’s the loudest voice in the room. The only one you can hear.”

— healthyplace

[i-the-spoonie]

[i-the-spoonie]

me: I'm done grieving, I already accepted my illness and all it brings with it, it's totally ok

also me on a random tuesday: my life is never going back to what it was, I'm never going to be able to do the things I loved the most the same, it's over and I gotta learn to live with that but it's kinda impossible because I'm so young and I had so many dreams and so many things I wanted to do that I can't anymore, at least not without all this pain and suffering

[i-the-spoonie]

yes, there are that many really disabled people on the internet actually

When I was less sick I used to think, "It seems like such a large portion of people on the internet are disabled, it can't possibly be that large of a percentage of the population" and then let my ableism demons tell me it was because they were faking (the same ones that told me I was faking, until I made myself really ill.)

But now that I'm sicker and wiser I realize I was logically just wrong because

The internet is disabled people's lifeline. There are more disabled people on the internet because OF COURSE. People who aren't disabled can be less chronically online because they don't have to be. This is textbook selection bias!

But actually also I was almost right, because there are way more disabled people in society than you would think! They're just systematically hidden and excluded from public spaces for abled peoples' convenience! 🙃

Anyway maybe this will help you understand and/or explain to abled friends and family.

[i-the-spoonie]

Your trauma is valid if you were neglected for reasons other people see as "valid" like if your parents had to work multiple jobs, or you had a sick sibling. It's still neglect and you deserved better.

[i-the-spoonie]

[i-the-spoonie]

[i-the-spoonie]

it’s unfair how i have the responsibility to heal myself when i didn’t cause my wound in the first place