Hey, Disabled Person! Do You Feel Tired All The Time? Do You Feel Like You’re Working Twice As Hard

You’re still chronically ill if you have a good day. You’re still valid. Your chronic illness is still valid if you have one good day out of a hundred bad days.

Thinking about the dichotomy of "I feel uncomfortable/triggered in the presence of x/y/z environments I would like to be someplace without that" that I constantly see online and when I tell my therapist I really get uncomfortable when people raise their voices around me even if they aren't actually mad and her response of "you can only control your own reactions and emotions, it's not really fair to police others on how they should exist in your presence" and honestly it sucks to hear but she's right.. it's good to have people be conscientious of what triggers you but really it's up to us to do the hard work of building that emotional resilience. The idea of people around me having to be hypervigilant of what they say and do lest I start getting dysregulated does not sound fun at all, I want people to feel comfortable being themselves around me and that means training my dumb lizard brain to chill tf out. Living in a constant state of avoidance sucks ass for everyone involved.

being chronically ill with fluctuating symptoms is so annoying because when it's at it's worst im like "okay i desperately need some type of mobility aid right now, i haven't been able to leave my house in days" but then i'm able to go for a walk one day and suddenly i feel like im exaggerating my symptoms and that i actually can walk fine and it would just be embarrassing and pointless to ask for a mobility aid assessment

but like ... not struggling as much one day doesn't take away from the days that i struggle the most

our pain is valid even when it's not at it's worst and we deserve the accommodations we need even if we don't always need them at all times

Sometimes being disabled feels like you’re surrounded by people with superpowers, and you’re the only regular human.

Because I don’t really feel like I can do less—I feel normal. I’m so in tune with my own body, my own abilities, my own experience. I’ve lived this way for so long.

But then I look at other people, and see how much more they can do, their stamina, their resiliency, and I’m…baffled. Befuddled. Astonished. They seem downright superhuman compared to me. They seem like goddamn superheroes.

I will be the first to admit that I’m not a good friend. I forget people exist, therefore I don’t text them. I don’t call them. I don’t acknowledge them.

I forget people are…people. To me most the time, everyone is just people that float around. People that help me as I float too. It sucks. I wish I saw people as more. I wish I had friends.

I’ll be the first to admit that I have disorders that cause me to not be a good friend. They aren’t excuses, but explanations. I try my best, yes. But sometimes my best just isn’t good enough. That’s ok. I’m content with that at the moment. However, I work everyday to get better and be a better friend. A better brother. A better person.

shaking myself (very gently) . being in pain takes a lot of energy!!!!!! being in pain is exhausting!!!!!!! you are not lazy or weak because you need to spend so much time resting, this is your body coping with how much pain you’re in literally 24/7!!!!!!!!!

i feel like something a lot of a ppl need to understand with DID is that it’s an extremely internal experience and, most of the time, isn’t as clean-cut as it is portrayed. sometime switches can be simple and feel possessive, as one alter enters and one alter leaves, but in other times it can feel like the slow and swaying liquid inside of a lava lamp. everything can mesh together and cause even more dissociation/confusion as a reaction, leading to not knowing who is exactly fronting and even how many. every system is different, but this is always the worst for us.

Writing Accessibility PSA

Please avoid using long strings of characters as line breaks in your writing - these are not screen reader/TTS friendly!

Every ‘°’ will be read as ‘degree’ - can you imagine how long it takes to read out a string of 25? Let alone more complicated combinations of characters (eg. imagine listening to TTS read out ~*~ |°| ~*~ multiple times per line break)?

A good rule of thumb is to stick with short, 2-3 character line breaks (eg. I don’t find — or *** too egregious to listen to). Your readers can tell there’s been a scene change whether you use two or twenty em-dashes, but if you use twenty, some of us might have to listen for 30 seconds to read the next scene. If you’re more concerned about aesthetics, you can insert an image of your aesthetically pleasing line break with alt text simply reading ‘line break’ for accessibility.

Don’t feel bad if this is something you’ve never thought about before - now you know better and can make your writing more accessible moving forward!

I would like to invite any other screenreader users to add their own thoughts or preferences to this post. We’re not a monolith and there’s a variety to how different softwares interact with repeating character strings and images with alt text, so there’s bound to be some conflicting opinions on what I’ve suggested above. Let’s try to make the stories we share accessible for everyone :]

dear fellow career driven spoonie,

you’re not a failure, you’re sick.

you were putting just as much effort forward before you were sick as you are now, you just have less energy to use so the results aren’t as exciting. it’s not complacency if you’re putting forward an effort.

it’s normal for your work life to suffer when your personal life does. you’re not a robot, you’re still a person, it’s unrealistic of you to expect yourself to be able to compartmentalize your symptoms at work. your body doesn’t care where you are or who’s time you’re on and it’s okay.

if all you can do is maintain your responsibilities, that is enough. you are probably not going to get fired if all you’re doing is what’s on your job description. it’s okay that you can’t put anything extra forward to grow. you’re growing in other ways right now.

even if you lose your job, you’re still not a failure. you’re not defined by the fruits of your labor, but by the substance of your heart and you are still that same career driven person who worked so hard in that position in the first place.

the reason why you’re successful isn’t because of what you’ve done, but who you are. take pride in your talent, motivation, knowledge, intelligence, and grit. that’s where your value lies.