#chronically yours

[quarantineddreamer]

[hinamie]

to moving forward

[youngchronicpain]

Say it with me, kids, "I do not deserve this pain. I am in chronic pain due to forces outside of my control. I should not have to earn pain relief. I am good. I do not deserve to be shamed for my pain. It is not my fault."

[thebibliosphere]

Still not over the head of cardiology, who said she wouldn't formally diagnose me with dysautonomia because she didn't want me to think of myself as disabled.

As if good vibes and a can-do attitude can stabalize autonomic dysfunction.

[chronicpaingirlie]

as much as i appreciate the intent of the “being disabled doesn’t make you a burden” type posts, i don’t really agree. a lot of times being disabled DOES make you a burden

& i think that maybe we should try to shift focus to the fact that even if you’re a huge burden on society and can contribute absolutely nothing, you’re still a human being who deserves to exist.

like. there’s nothing morally wrong with being a burden on other people. you aren’t a bad person for needing to rely on others. you’re allowed to be a burden & disabled people who are burdens on others, i love you

[giantkillerjack]

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

[opalsiren]

disabled/chronically ill people in general do not have the same number of usable hours as ableds. i can't meet my friend tomorrow because i need to wash my hair, and i can't meet them the day after because i need to do a load of laundry. i can't meet them thursday because i have an important appointment on friday, and if i overdo it on thursday i'll have to cancel friday's appointment. then i can't meet them on saturday because i'll be recovering from going out on friday, if i even manage to make it out the house. the old 'we all have the same 24 hours in the day' saying does not apply to us.

[brandyschillace]

Today I will list the things that cause a sudden flare up of my condition:

1. Nothing.

Like for real, it’s the butterfly effect, it’s ocean currents, it’s nothing or everything—but I can tell you what it’s not. It’s not my ‘fault’ or due to some laxity of routine. Chronic conditions gonna chronic.

Have one? You don’t have to play 20 questions with yours either. Stuff happens. ❤️

[jumpscart]

there needs to be a vampire story that really solely narrows in on the nocturnality of vampirism. The sun doesn't even have to kill them, they just have such a strong innate circadian rhythm that they are basically inable to function in mainstream society. Their loved ones slowly drift out of their lives as they can't keep up with family, their fatigue is so strong that they can't attend daytime functions... and the inverse is true for their closest friends, who just don't have the energy to be up all night like when they were young. But the vampire will always be 'young', and they have to keep living. The only jobs that they can keep are ones with night shifts, hopefully something like a restaurant or bar...but often, and eventually, ones that mean danger. And most of all, they feel hunger at night, and the more and more they stay up and feed, the stronger they slip into the pattern of nocturnality. There are less people awake at night, and none of these people are the same people from the world before. The world is smaller, and darker, and different. And it has always existed, while they had slept. And it will exist while everyone they loved, slept.

[quarantineddreamer]

me: *has Covid this week* *weird appetite barely eating; throat hurts definitely dehydrated*

also me: *waking up at 6am today with a sudden burst of energy* *logging on to work cause I want to help my team see this big project through* *consuming an extra caffeinated coffee at 8am*

also also me: *suddenly gets the spins in the middle of a meeting and has to sign off and lie down before I pass out*

And somehow also me: “why is this happening”

[saccharind]

from Prokaryote Season by Leo Fox

[beybuniki]

RODYDEKU RODYDEKU and bakugo

[cryptcatz]

i have GOT to get over my obsessive worry about being a burden on others oh my god. it is okay to inconvenience people! people in your life who really care about you won’t mind being inconvenienced!! it’s literally just the human experience!!! communicate your needs for the love of god it’ll be FINE!!!!!

[thebibliosphere]

One of the pitfalls I've been struggling with over the last three years while focusing on recovering from ADHD burnout is trying to find stimuli that are enriching and not just distracting because distracting stimuli might feel like it's keeping me from being bored, but really it's just keeping me numb enough so I don't have to process being bored or any of my emotions.

And that's not great when you're trying to heal trauma.

The problem is, I'm not finding a lot of things enriching at the moment. A lot of the things I've been relying on to keep my brain quiet since 2020 now feel overstimulating and are actively making me agitated rather than numb. Which I suppose is progress? It means I'm processing things and actually aware of them again instead of perceiving everything as background static.

It's just an odd predicament to be in. I don't think I've been this 'aware' of my own brain in a long time and on the one hand, cool. Great. Probably a good thing. On the other, aaaaah. Why is it so noisy in here?

[thedisablednaturalist]

I think when people think of mental illness and what helps, especially with things like anxiety and depression, the treatment involves pushing yourself. Pushing yourself to get out of bed, to exercise, to take a shower, to go out in public, to order your own food from the cashier, etc.

And because the mental health movement has grown so much, people think that's the default of ALL illnesses. That the only way someone will get better is if they push themselves. That practice makes perfect. That you'll become more comfortable or strong over time the more you do something.

But what people need to realize is, with physical disabilities and chronic illnesses, pushing yourself in most cases is DETRIMENTAL. Pushing yourself past your limits can lead to flare ups or further injury. That's why it's important to know your limits, how certain activities may affect your condition, and learn how to either adapt or get help to complete the activity in question.

Also, most of us are already pushing ourselves. Most of us don't have access to the help or equipment we need. Most of us live in places where we frequently encounter inaccessible obstacles. Most of us NEED to rest.

So please don't try to be our physical therapists or doctors. There are people specifically trained to help us navigate our own conditions and limitations. There are people trained to help us strengthen our body's resilience without causing flare-ups or injury. Do not tell us "it'll be good for you" or "you need the exercise" when we say something is too heavy or too far or when we say we need our mobility aid(s). Your friend with depression may need to be encouraged to get out of bed, but your friend with chronic illness definitely doesn't.

Respect our rest.

[ftmsteveraglan]

the fnaf movie really was a win for bisexuals. we got:

-sad pathetic wet cat short king who's actually a single mother

-evil dilf who's canonically gross and stinky and calls himself daddy

-perfect angel woman who has never done anything wrong in her entire life fighting through the horrors™

-matpat