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myalgicencephalomyelitiscfstom · 9 months

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#chronic illness #long term illness #ChronicIllnesses #chronic sickness #long term disease

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group-call · 19 days

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⚠️ we (i, steven, specifically) made a flag for PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections)/BGE pride/awareness flag!!

⚠️ stripe meanings: black, white and grey stripes both represent autoimmune encephalitis, rare diseases/the fact it is a rare disease, and what PANDAS/BGE can be mistaken for (example: the child with PANDAS/BGE just being bad, solely being diagnosed with autism, ocd, or tourettes/a tic disorder when really the child has both the diagnoses and PANDAS and therefore being unable to properly treat it, etc), the light blue stripe representing chronic illness, the red and purple gradient representing physical disability and autoimmune illnesses and how the two are inherently intertwined in PANDAS/BGE, and the green represents what all of the colors make up, PANDAS/BGE!! previously i made another but i stopped liking it as much and we lost the file of it. this is specifically a PANDAS flag, not a PANS or general autoimmune disability/autoimmune encephalitis flag.

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cl0wnsexual · 1 year

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I love you menthol rub, i love you pain killers, i love you mobility aids, I love you straws, l love you things that make people with disabilities lives easier <3

#anyway goodnight #spoonie #chronic illness #chronic pain #disability #chronic sickness #actually disabled

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pxiie · 1 year

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#mine #cope #cope meme #chronic pain #fibromyalgia #chronic illness #chronically ill #anime #anime memes #chobits #shitpost #chronic sickness #meme #memes #spoon theory

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sunsetsandhope · 1 year

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it is crazy to me that there are indeed people who do not wake up in pain, go through the day in pain ans go to sleep in pain, currently it is 6:21 am where i live and i woke up at 4 am in unberable pain, but this is my life friends.

This is the life I got so I am gonna live this to my best ability, but i would use a break sometimes, i usually sleep 2/3 hours

#random thoughts #mini rant #personal rant #rant #random #random rant #just ranting #ranting #rant i guess #rant incoming #invisible disability #we can do it #am diary #chronic health problems #chronic health #chronically ill #chronic illness #chronic pain #chronic sickness

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a-sassy-bench · 5 months

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do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

#if one more person tells me to take a sick day i'm going to throw something at them #i just honestly cannot anymore #disabilties #disabled #actually disabled #epilepsy #ehlers danlos syndrome #physical disability #neurological disability #actually epileptic #zebra #chronically ill #chronic illness #spoonie #chronic fatigue #chronic pain #c punk #crip punk #cripple punk

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andthebeanstalk · 1 year

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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.

#hlep #original #mental health #my sympathies and empathies to anyone who has to rely on this kind of hlep to get what they need.#the people in my life who most need to see this post are my family but even if they did I sincerely doubt they would internalize it #i've tried to break thru to them so many times it makes my head hurt. so i am focusing on boundaries and on finding other forms of support #and this thing i learned today helps me validate those boundaries. the example with the milk was from my therapist.#the example with the towing company was a real thing that happened with my parents a few months ago while I was age 28. 28!#a full adult age! it is so infantilizing as a disabled adult to seek assistance and support from ableist parents.#they were real mad i was mad tho. and the spoons i spent trying to explain it were only the latest in a long line of #huge family-related spoon expenditures. distance and the ability to enforce boundaries helps. haven't talked to sisters for literally the #longest period of my whole life. people really believe that if they love you and try to help you they can do no wrong.#and those people are NOT great allies to the chronically sick folks in their lives.#you can adore someone and still fuck up and hurt them so bad. will your pride refuse to accept what you've done and lash out instead?#or will you have courage and be kind? will you learn and grow? all of us have prejudices and practices we are not yet aware of.#no one is pure. but will you be kind? will you be a good friend? will you grow? i hope i grow. i hope i always make the choice to grow.#i hope with every year i age i get better and better at making people feel the opposite of how my family's ableism has made me feel #i will see them seen and hear them heard and smile at their smiles. make them feel smart and held and strong.#just like i do now but even better! i am always learning better ways to be kind so i don't see why i would stop

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araekniarchive · 10 months

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@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

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lokilysolbitch · 6 months

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i've said it already probably but ppl who don't use mobility aids. especially doctors. stop trying to get rid of other ppls mobility aid. stop making that a priority. stop it with the "we gotta get you off that [mobility aid]" "you shouldn't need to be using a [mobility aid]" "let's focus on getting you to where you don't need [mobility aid]" "a [mobility aid]? but have you tried [herb]/[medicine]/ [exercise]/[facebook hack]/[pseudoscience]/[meditation] instead?" "but you look old/cringe/weak/sick". shut up

i don't know why so many of y'all think my end goal is to stop using the thing that helps me. and i KNOW most of y'all wear glasses or contacts but you're not running around trying to find the solution to make you stop needing them. so quit doing it with every other aid just because it reminds you of old or sick people.

especially bc most of y'all don't want to have that reaction when it comes to chronic pain, fatigue or discomfort. i say "my joints hurt" you say "oh well :/". i say "i feel lightheaded all the time" you say "just push through it". i say "my stomach is at least a 7/10 on the pain scale every day" you say "are you sure it's actually that bad? maybe you're exaggerating".

but as soon as i pull out a cane, or a shower chair, or a spinny chair for when im cooking in the kitchen, and i say "finally, im getting really good help!" . that's when you care. and all you want to do is take that away as soon as possible.

you just don't want to fucking see disabled ppl be disabled.

you don't want to have to look at it. you don't want to have to listen to it. you don't want to have to be reminded of it.

but too fucking bad !! i don't care !! im naming and decorating my canes !! they will be the loudest part of my outfits !! the same will go for a rollator if i'll still need one in the future !! i'm going to talk about how i'm disabled regardless of if anyone else can hear me !! because i am !! why should i hide just because YOU don't like it !! close your eyes !!!!!!

#do not come up in here talking about 'oh so you think everyone should just stay sick'#bc i know what i said and it wasn't that #and let's not forget how Chronic Illnesses work #disabilities #disability #disabled #mobility aid #cane user #rollator #actually disabled #handmadeorganicpost #chronic illness #chronic pain #chronically ill

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hellyeahsickaf · 3 months

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When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this!#this is about physical disability. please don't derail it

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raspberrybrain · 1 year

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My brother insists I've been sick for 4 months

I doubted him, but I just looked back at my creative activity on here. the last #my art post was in November.... Score against me in the sibling battle.

#chronic sickness #omg why do I not go to doctors immediately

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myalgicencephalomyelitiscfstom · 1 year

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#chronic illness #spoonie #chronic sickness #longtermdiseases #longtermillness

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allabouthatnerd · 1 year

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I don't understand why I keep getting sick

I've spent at least two week at month with a fever and problems at my throat or at my stomach in the last three years. It's so chronic that it's seriously impacting my life and work. It's also getting worse.

And OF COURSE everyone in my family says that it's normal.

#Sick discourse #chronic sickness

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enbycrip · 11 months

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Pretty much no impairment is as simple as abled people think it is.

People are taught to believe that disability is a simple “Can’t”. Can’t walk. Can’t talk. Can’t hear. Can’t see. An ability is just excised and no longer exists, if it ever did.

In reality, it’s rarely that simple.

It’s “I can sort of do x thing sometimes, but I get muscle spasms making it very dangerous or impossible to do it reliably or safely”. Or “I can do x thing but it causes me so much pain I will be unable to do anything else for hours or days after doing it”. Or “I can do x thing but I constantly injure myself doing it because of lack of muscle control”. Or “I can do x thing but so badly I functionally can’t do it two inches beyond my face, but now I have a mobile phone I can put up to my face so I can do it in certain very specific circumstances”.

None of these things mean someone isn’t disabled. And if you think it does, then it’s *your* ideas about disability that need to change.

The reason disabled people end up saying “can’t” when the reality is more complex is because people don’t trust our boundaries. They force us to injure ourselves instead of accommodating, or use energy that means we have none left to do *anything* else we need to do for the rest of the day. Or week. Or month.

Abled people need to start trusting disabled people, or you need to shut up, get out of any situation where you have power over us, and provide someone who will. Those are the only options.

The way we are expected to live in a performative hell of the making of more privileged people who then turn around and criticise us for not suffering in the precise way they have decided we should is genuinely nothing but ridiculous.

Just stop.

#disabled #disability #disableism #chronic illness #chronic pain #chronic fatigue #ableist bullshit #disableist bullshit #ableism #impairment #sick of this shit #the ableds are at it again

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chronicpaingirlie · 3 months

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i feel like for abled people who don’t have to spend a huge portion of their waking life in bed, it’s really easy for them to imagine it as some sort of constant relaxing vacation from ‘real life’ or from effort and feeling and working or whatever else

when in reality it’s like. im so restless. im so tired of being in bed. it isn’t comfortable. i Hurt. im hurting all the time and if i could not be in bed without being in huge amounts of pain, i would!! i miss being able to do things!! laying in bed helps the most, but a lot of the time it feels like a trap, not a comfort. a lot of the time it hurts too much to be doing anything else

i miss when laying down was a choice i could make for relaxation, when napping was an indulgence and not a necessity, when i could spend time and energy being upright and it didn’t even feel like effort !!! i don’t want to do this. this isn’t something relaxing or fun the majority of the time. it’s painful & frustrating. i wish people understood that better :(

#it’s not like. having fun relaxing & playing video games 24/7!!!! im SICK. im in PAIN. I don’t like it!!!!!!!#chronic pain #chronic fatigue #disabled #disability #0

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thebibliosphere · 7 months

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My body is just straight up collapsing in on itself today.

I had a three day migraine, none of my joints are staying in place, my stomach is a nightmare, I'm breaking out in hives, my brain is looking for any reason to swan dive off the deep end into self-destruction and Everything Hurts.

All because my menstrual cycle started.

Meanwhile, my ob/gyn just keeps trying to push an IUD on me instead of the actual help I'm asking for. Like fucksake, just let me yeet this shit and try testosterone.

"oH bUt yOu MiGhT gRoW uNwANted hAiR"

M'AM, MY PELVIS JUST DISLOCATED. TWICE.

#chronic health tag #I need to switch ob/gyns #I really do #I'm so sick of this every month

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