#Ehlers Danlos Syndrome | Explore Tumblr Posts and Blogs

enjolrashisace · 1 day

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Me: *huffing and puffing*

My girlfriend: are you okay?

Me: yeah I just put my tshirt on

#ehlers danlos syndrome #hypermobile eds #hypermobile ehlers danlos #chronically ill #heds #hypermobile joints #hypermobility #chronic pain #chronic disability #chronic fatigue #chronic illness #spoonie #invisible disability

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n3crokitty · 1 day

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I physically can't take it anymore. Everything hurts. Nothing is going right. Nobody is listening.

And the "best" part? Nobody cares. They seriously don't care that they're draining me of all physical and mental energy every single day. They think they have the right to.

I'm praying I can take it for just one more month. That's all it'll take.

#rant post #disability #disabilties #disabled #actually disabled #heds #ehlers danlos syndrome #hypermobile ehlers danlos #pots syndrome #pots #fibromyalgia #probably #chronic illness #chronically ill #chronic fatigue #chronic pain

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hellyeahsickaf · 5 months

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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!

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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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talkethtothehandeth · 8 months

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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

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stellaltumi · 2 months

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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.

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smoov-criminal · 11 months

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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]

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clownrecess · 11 months

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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

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chadepitanga · 8 months

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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

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n3crokitty · 9 hours

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"You need to put in as much effort as humanly possible" I AM. IT JUST ISNT "AS MUCH EFFORT" AS YOU BECAUSE IM DISABLED. SHUT UP.

#disabled #disability #rant #disabled rant #i hate my father #so much #i cant wait to get away from him #pots syndrome #pots #heds #hypermobile eds #ehlers danlos syndrome #hypermobile ehlers danlos #fibromyalgia #chronically ill #chronic illness #chronic pain #chronic fatigue

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1980s-slasher-film · 1 year

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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.

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defiantcripple · 2 months

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

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azztiph · 9 months

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Sometimes u just need to sob and scream and cry and bitch about ur disability

I think a lot of people feel like they need to be at completely at peace with their disability

And you don’t!

Be mad be sad be pissed off!

#disabled #disabled problems #disability #ehlers danlos syndrome #immunocompromised #rheumarthritis #chronic illness #autoimmine disease #angry cripple #this post is about physically disabled people #autoimmune #rheumatoid arthritis #cripple punk

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mangedog · 1 year

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shout out to people with spatial awareness issues. wishing you a "didn't bump into any table corners or walls" day today!

#dogpost #when i get my own place all my stuff is gonna have no corners. round tables ftw #autism #spatial awareness #spatial reasoning #dyspraxia #developmental coordination disorder #ehlers danlos syndrome #proprioception #balance disorder #edit: why did this go off so intensely!!#nearly 1.5k notes in less than 10 days. i have like 300 followers MAYBE if that #damn people really out here bemoaning their shin bruises huh #edit 2: i just checked i have 150 followers. where did these notes come from

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dxbaby · 4 months

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#chronic pain #ehlers danlos syndrome

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crippledbanshee · 1 year

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I fucking hate it when people say I'm going to be dependent on my mobility aids. Like, hell yes, I am dependent on them because I'm disabled and their function is to help me live better, I need these aids, they are not just ornaments.

#chronically ill #disability #disabled #chronic fatigue #cripple life #cripple punk #ehlers danlos syndrome #chronic pain #disabled pride #mobility aid user #mobility aid #wheelchair user

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