#danlos

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

#signal boost #please reblog #chronic pain #chronic illness #disability #fibromyalgia #cfs #chronic fаtiguе ѕуndrоmе #actually disabled #spoonie #me/cfs #cfs/me #long covid #important #invisible disability #ehlers danlos syndrome #lyme disease #chronically ill #cpunk #cripplepunk

[a-sassy-bench]

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 #fuck capitalism #anti work

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

#spoonie #chronic illness #invisible disability #disabled #chronic pain #actually disabled #chronically ill #pots #pots syndrome #ehlers danlos syndrome #heds #hypermobility #hypermobile ehlers danlos #joint pain #mobility aid #mobility aids #ableism #autism #actually autistic #mental health #mental illness #physically disabled #physical disability

[drpedi07]

Ehlers Danlos Syndrome

Ehler Danlos Syndrome (EDS) is a genetic problem where the protein “collagen” (pronounced as coal-aa-gen) is abnormal.

#Ehlers #Danlos #Syndrome #Dermatology #Skin #EDS

[chadepitanga]

there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.

#i want to be here for a while longer. COME ON #i have barely started living this isnt fair #cw death #chronic pain #chronic illness #ehlers danlos syndrome #hypermobility #fibromyalgia

[talkethtothehandeth]

This is a reminder that you can still serve cunt while using a mobility aid, hope that helps

#shit post #chronic pain #disabled #mobility aid #mobility aids mean freedom #ambulatory wheelchair user #chronic illness #cripple punk #arthritis #ehlers danlos syndrome #chronically ill

[furry-er]

    Escher - danlos Bach or some shit

#on my silly shit #escher #danlos #bach

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

#disability pride month #disability pride #cpunk #cripple punk #multiple sclerosis #marfan syndrome #cerebral palsy #bells palsy #hidradenitis suppurativa #cauda equina syndrome #mixed connective tissue disorder #hyperandrenergic pots #eds #ehlers danlos syndrome #stickler syndrome #mitochondrial disease #cystic fibrosis #sickle cell disease #myasthenia gravis #post-cholecystectomy syndrome #swan #syndrome without a name

[clownrecess]

Happy disabled pride month to disabled people with undiagnosed physical disabilities

Happy disabled pride month to disabled people with undiagnosed mental disabilities

Happy disabled pride month to mobility aid users

Happy disabled pride month to disabled people who are in constant pain

Happy disabled pride month to AAC users

Happy disabled pride month to disabled people with ableist family

Happy disabled pride month to fat disabled people

Happy disabled pride month to disabled people with scars

Happy disabled pride month to disabled addicts

Happy disabled pride month to disabled people who's disability is progressing

Happy disabled pride month to disabled people who love their disability

Happy disabled pride month to disabled people who hate their disability

Happy disabled pride month to disabled people with underrepresented and/or uncommonly known disabilities

Happy disabled pride month to all disabled people. I love you. /p

#multiply disabled #disabled pride #actually autistic #physically disabled #autipunk #cripplepunk #aac user #nonspeaking autistic #nonspeaking #disabled #autism #aac users #aac device #neurodivergent #chronic fatigue #hypermobile eds #hypermobile ehlers danlos #undiagnosed ehlers danlos #ehlers danlos syndrome

[spookietrex]

#disabled and proud #physically disabled #disabled #disability advocacy #disabilities #physical disability #invisible disability #disabilties #out of spoons #spoonies #spoon theory #spoons #spoonie #low spoons #fibro #fibromyalgia #autistic adult #autistic and proud #autistic #autism #actually autistic #autistic things #living with pots #fuck you pots #potsie #pots #pots syndrome #eds zebra #ehlers danlos #ehlers danlos zebra

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself though if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

#rants & reflections #chronic pain rant #chronic pain #disability advocacy #disability community #disabled community #disability rights #chronic illness vent #undiagnosed chronic illness #chronic illness community #chronic illness rant #chronic illness #chronic pain problems #undiagnosed chronic pain #fibromyalgia #dysautonomia #spoonies #physical disability #chronic fatigue #ehlers danlos syndrome #pots #postural orthostatic tachycardia syndrome #craniocervical instability #migraine #cluster headaches #tmd #heds #neck pain #back pain #chronic headaches

[crippledpunks]

shoutout to every person who deals with incontinence. i dealt with bedwetting up until my early teens, and now deal with stress and urge incontinence and for years never wanted to talk about it because of the shame and stigma other people place on not being able to control your bladder or bowel movements.

incontinence is a disability. it's not gross or wrong to talk about incontinence. incontinent people are not dirty or disgusting. if we could control these parts of our body, we would. we're not an inconvenience for being this way, and we don't have to be treated like a burden or like we need to be "fixed".

whether or not you use incontinent products like briefs, pads, diapers, plastic bed sheets, or whatever else, you are loved, important, and deserved to be seen when there are conversations about disability awareness and acceptance. we don't deserve to hide in shame when all we need is to be accommodated and accepted.

#cripple punk #disability culture #cripplepunk #incontinence #disability #disabled #physically disabled #hypermobile ehlers danlos #actually hypermobile #hypermobile eds #arthritis #chronic illness #chronically ill #chronic pain #crip punk #our writing #chronic fatigue

[1980s-slasher-film]

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

#ngl this is half directed at the autistics using acess passes at theme parks #specially the ones that don’t actually need it #obviously you can utilize them if you actually need them #but I mean the people that say skipping lines is a ‘benefit of autism’ or whatever #I’m seeing it pop up again #and it’s pissing me offff #disabled #actually disabled #chronic illness #actually chronically ill #autism #actually autistic #adhd #actually adhd #arthritis #pots #pots syndrome #heds #hypermobile ehlers danlos #ehlers danlos syndrome

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

#postural orthostatic tachycardia syndrome #pots syndrome #disability #disabled #pots #potsie #spoonie #ehlers danlos zebra #chronic pain #hypermobile ehlers danlos #actually disabled #physically disabled #disabled community #disabled life #chronic disability #physical disability #disability advocacy #disability awareness #disability rights #disabilties #invisible disability

[thelupuslady]

#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #ehlers danlos awareness #ehlers danlos life #systemic lupus erythematosus

[defiantcripple]

Using a mobility aid when you need one is an act of self love <3

#cripplepunk #angry cripple #cpunk #c punk #cripple punk #queer cripple #physically disabled #physical disability #mobility aid #wheelchair #rollator user #cane user #wheelchair user #hypermobile ehlers danlos #ehlers danlos syndrome #cripple posting #disability #cripple #heds #ehlers danlos #chronic pain