chronicallyinvisible:

I was thinking earlier, I’m not sure chronic illness is isolating in and of itself, I think it’s often people’s lack of understanding surrounding illness that makes you feel so freaking alone. Sometimes the lack of empathy is more unbearable than the symptoms themselves, like you’re living in a state that is so entirely foreign and inconceivable to most people and it’s just utterly alienating.

Yes. I feel this all the time, like people just don’t ‘get it.’ Even my boss, who told me her husband has MS, just went on to tell me how inconvenient it is that sometimes I can’t get out of bed.

It hurts. Here, though, we don’t have to be alone. <3

auties-on-war-dragons:

muvak:

Half of you are probably not autistic because you would have understood. Stop having pitty when your doctor just gave you a diagnosis so you won’t be look at as a freak for having ADHD and a fucking adult! Autism isn’t a excuse. And if you are autistic you wouldn’t be on Tumblr. Suck that. You people are dumb as shit. Probably never even seen a REAL autistic person. Let alone live with one . Fuck  you fakers that messaged me.

See, I don’t think you understand how this works. You’re not the first person to come into our space looking to start shit, and you sure as hark won’t be the last. If there’s one thing people like you teach us it’s that if we want any space that’s ours, any space that’s safe, we’re going to have to be prepared to defend it. And my god do we defend this space, to the hilt and to the bone. That’s one of the things I love about the autistic community on tumblr, I’ve seen people go from “I do what I want I can post in your tag you can’t stop me!” to deleting their blog in 24 hours. You’re not the first person coming here looking for trouble, and you won’t be the last, but you know what? I doubt you’ll be here long.

(And if half of us are fakers and no autistic people can use tumblr, how are the non-fake half messaging you? Telepathy? Are you getting phonecalls from angry autistics or what?)

So I’ve gained quite a few followers over the last few days. It’s exciting and a little bit scary! 

This specific tumblr is devoted to writing about dealing with chronic illness and neuroatypicality, as well as reblogs from others write about the same issues. I started it a few months ago at the urging of my spouse, because I had, and have, a lot of things inside me in terms of processing what has happened in my life over the last three years (and in greater terms, what has happened in the last thirty-seven, because there were many signs and signals of what I am now finally sorting through long before that).

A couple of things about me:

  • I am an intersectional feminist/womanist, and I do not welcome sexism, racism, or pretty much any other kind of -ism. I am particularly interested in inclusive feminism/womanism, and reject TERF/SWERF dialogue. It’s a hard line of mine, so I feel that’s the most important thing to put out there.
  • DFAB non-binary. Adult autistic with an autistic teenager, celiac, constant neuropathic pain as a leftover from surgery, missing parts of my spine, chronic pain syndrome, and medical-related anxiety & PTSD. I am not “out” to many who know or love me about some of these things.
  • I am a co-parent to two kids — my son, who lives with us, and my stepdaughter, who doesn’t. My spouse and my ex-spouse and I make a pretty good parenting team and I’m very lucky in that regard. Also our kids are awesome.
  • My ask box is always open if you’re having a low-spoons or high frustration day and you want to talk. Always. I may not be able to say more than ‘I hear you’, but I will always hear you
  • Unless I ask otherwise, anything I write is open to reblogging. I’ll do the same for you. Respect is especially important when spoonies talk with each other; we don’t have the energy to fight amoungst ourselves. 

Enough about me! I’d love to hear from followers old and new. It’s Sunday, and we’re all facing a new week ahead of us, so I think I’m going to institute a new thing: Pre-Monday Prep.

Send me something in my ask box that’s awesome, something you don’t mind me sharing! Preferably it’ll be something awesome that happened in the last week, or something you’re anticipating about this upcoming week, but if you have a fantastic science fact, share that! Anything that puts a smile on your face or lifts your spirits, please share it, and together we’ll slide a couple of extra spoons in our collective pockets with some good news. 

thebigbadwerewolf:

silversarcasm:

snark-sniper:

mrakato:

silversarcasm:

disabled princesses and disabled superheroes are so important where the fuck are they

image

This is Toph. She is not disabled. She is awesome. Try again.

That is Toph. She IS disabled. She is also awesome. The two are not mutually exclusive. 

roasted

realsocialskills:

Thing about “last resort”- people will often make brutal things to do look connected to things they are not connected to. “You pinned him to the floor?” “Well, he throws chairs at people!” failing to mention that the pinning to the floor was actually because he threw a pencil. Even if it is factually true that the kid sometimes throws chairs at people.
realsocialskills said: 
 
Yes, absolutely.
 
Another thing that can happen is that someone will be described as “he throws chairs at people!” even if he did that one time five years ago.
 
Or if another teacher *told* them that he threw chairs at people, and they don’t ask for details. And maybe what actually happened is that he picked up a chair one time, and they decided that meant he was going to throw it. Or he habitually throws chairs, but never actually at people.

jpenn1313:

image

gluten free food EVERYWHERE

image

There is a heaven and it’s at Whole Foods

celiacandthebeast:

100moreyears:

Actually though, celiac disease is pretty fuckin scary. I don’t think I take it seriously enough.

You are not the only one, I promise. 

One of the more exhausting things that I’ve been through in recent months — the most recent months — as I’ve been coming out of the abyss, as Dr. Kate says, is trying to piece back together friendships and relationships that were allowed to go fallow because I didn’t have the energy, or because I was stepping back to let those people work on their lives without having someone dragging them down in the state I was in.

The latter sounds really horrible when you put it like that, doesn’t it? But it’s really what it comes down to: you realize that you are a potentially huge weight to someone who’s working hard to get what they want out of life — finally getting that — and letting some slack in that distance between you. Then one day you turn around and find they’re like a balloon, so far out of reach that they’re up there in the sky, a tiny little speck of color, and you’re not even sure you have hold of the string at all.

And, of course, it isn’t as though people were standing still while I was putting my shit back together. They were doing their things, living their lives, achieving their goals, growing and changing. So now as I’m turning around and realizing that there’s distance there which wasn’t there a year and a half ago, that someone(s) I was dearly close to are people at the end of that proverbial string, the question is: are we even friends anymore? Is there a *there* to find?

It’s an incredibly painful realization, that the cost of what I’ve been through may be that I’ve been a shitty friend, both due to disconnectedness and to pain, and I have definitely, and may have lost more friends than I know as a result. That’s a price that I didn’t count on paying.