#ehlers danlos life | Explore Tumblr Posts and Blogs

thelupuslady · 1 year

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#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

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murruspins · 2 months

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#chronic pain syndrome #chronically ill #chronic illness #chronic pain #chronic fatigue #ehlers danlos #hypermobile ehlers danlos #ehlers danlos life #ehlers danlos awareness #ehlers danlos problems

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thecovenhouseco · 1 year

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Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.

#disabilties #dissociative identity disorder #did osdd #did system #ehlers danlos life #ehlers danlos zebra #ehlers danlos problems #ehlers danlos awareness #hypermobile ehlers danlos #potsawareness #pots #mcas #the terrible trio #invisible illness #invisable disability #ugh why

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chronicallycouchbound · 8 months

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Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

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chronically-izzzzle · 2 years

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#spoonie meme #spoonie #spoonie stuff #chronic illness memes #chronic illness life #chronically ill #chronic pain #chronic pain meme #chronic fatigue #chronic fatigue meme #just ibs things #ibs meme #ehlers danlos life #hypermobile ehlers danlos #ehlers danlos syndrome #irritable bowel syndrome

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olliethewallflower · 9 months

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#pots #hypermobile eds #iron deficient anemia #ehlers danlos life #postural orthostatic tachycardia syndrome #chronically ill #haha #spoonie

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localpissenthusiast · 1 year

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ok yeah i have a debilitating medical condition that causes chronic & generalized pain, mobility issues, autonomic nervous system dysfunction and frequent subluxations BUT. i can touch my thumb to my forearm so. a win is a win

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virtuallyinsane · 10 months

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Hi all.

Decided to share lil bit of my story. Dedicated to those who suffer chronic illness. You are NOT alone. It's fucked up everywhere in the world. There is many of us and our stories are important.

I started my "let's really find out what the fuck is wrong with me" journey a long ago after my body slowly refused to work as it should. There was a lot that went on in my life at that point, but let's focus on the physical health. I suffered a collapse and a burn out.

During the past few years, I was misdiagnosed several times, I was given wrong medication because of it that made things worse to this day.

I suffered a lot of trauma by people around me saying I am just lazy and sensitive and by literal doctors saying the same thing, making me seem like a typical archetype of hysterical woman. They told me to just have kids, it will be better... They told me let them lock me up to psych clinic to help me... they tortured my mind and my body for a long time while whatever was wrong with me, just kept getting worse and my body was hardly able to function in day to day life anymore.

Until recently. I got help from an organization focusing on these kind of situations and after some more doctors appointments, I was told I have Ehlers Danlos syndrom with a few other diagnosis that my body developed because of that. I have one of its hypermobile forms that fuck up joints, connective tissue in my body, including some internal organs that don't function properly anymore and cause more pain and discomfort.

Well, at least I know what's wrong and I can adjust. Somehow tho, the doctors still refuse to help more than the bare minimum and give me advice such as "don't do sports" while me considering having a wheelchair because I can't walk much anymore, bitch what?!

Anyways, there's a long journey ahead of me still. I need to go to the private medical sector, because even tho I have an insurance, there's no real help in the system. Life is lifing.

To all of you that made it here, thank you for reading and remember if you suffer, you are not alone, please continue fighting because you are worth it.

#personal #ehlers danlos life #ehlers danlons #eds #chronic illness #chronic disability #spoonie #spoonie life

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lord-hand-me-spoons · 4 months

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Just a gentle reminder that it is okay to feel jealous of your able bodied friends sometimes. It does not make you a bad person, you wouldn’t wish anyone to live with your pain, but sometimes you just wish that you got a break.

#chronic illness #chronic pain #chronically ill #disability #spoonie #ehlers danlos life #potsie #eds zebra #ehlers danlos problems #pots #pain flare

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idkwhatiwantinlife · 10 months

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I don’t think able-bodied people fully understand what chronic pain means. It’s not just a headache every now and then or some sore muscles. It is daily debilitating pain that you have to deal with. I can’t rely on painkillers so I have a giant purse in which I carry all of my braces and wraps. My back is constantly aching and kt tape kind of helps. My knees and hips pop out of place and suddenly I can’t walk. Sometimes my shins will start throbbing and I have to figure out how to deal with that. There is no permanent cure. We just have to learn to live with it. Sometimes I wish that someone could Freaky Friday body-swap with me just to feel the pain I’m in. The pain that I have to push through and keep working. It is exhausting.

#heds #ehlers danlos life #ehlers danlos syndrome #chronic illness #chronic pain #disability #disabled people #ableism

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inclusion-matters · 6 months

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I don’t post personal stuff very often but I’m hoping to find people with similar experiences. I’m 24 and I have hypermobile Ehlers-Danlos syndrome, and as I’ve gotten older it seems like my joint dislocations and subluxations have gotten even worse, to the point they’re just falling out of the socket at random. I’ve had to put one shoulder back in twice today as well as my other shoulder and both my hip once. I’m also am falling progressively more and more, seemingly from loss of balance. I’m curious to know if anyone else has some similar experiences as they’ve gotten older. When I was little my bones never broke, and I got weird injuries and sprains and bone bruises but things didn’t pop in and out nearly as much, although they did a little. I was also really active and did ballet so I think that helped stabilize my flexibility until my pain got too bad for me to be able to dance. Now you can’t even really feel cartilage in my joints. Hopefully someone with similar experiences sees this post so I feel less alone!

#heds #hypermobile ehlers danlos #hypermobile problems #hypermobility #hypermobile eds #hypermobile joints #actually hEDS #heds tag #ehlers danlos syndrome #ehlers danlos problems #ehlers danlos awareness #ehlers danlos zebra #ehlers danlos life #actually hypermobile #probably heds #chronic illness #chronic pain

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thelupuslady · 1 year

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

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runadreams · 1 year

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May is Ehlers-Danlos Syndrome Awareness Month!

Sing it out, sing it loud!

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome (EDS) is a rare complex disease that is a genetic condition which affects collagen, a connective tissue everywhere in your body, including your joints, ligaments and tendons, skin and organ tissues. This a a multi-systemic condition in which symptoms result in widespread pain and chronic fatigue.

Why should you care?

You may know someone affected by EDS or hypermobility and may not even realize it. Symptoms can vary widely from patient to patients, leaving some looking like they aren’t ill or suffering. Doctors often misdiagnose, gaslight, or even dismiss patients, pointing to easy “solutions” which leave patients with struggle to receive care, many patients average 10-12 years before getting appropriate care.

Why the Zebras?

Zebras are the symbol for rare diseases so patients identify with the stripes. Doctors are often trained to “think horses, not zebras, when you hear hoof beats”. Horses being a common disease (arthritis, the flu, etc). A zebra representing the less expected possibility.

What can I do to help?

Raise awareness!!! Someone you know or maybe you yourself may be suffering. The Care-e-oke challenge is to engage people who don’t know about this rare condition. You can also donate to EDS related non-profits or support groups to help advocates and medical providers to better support the EDS community.

This is by no means an exhaustive list—I encourage you to search out your own local advocacy and support groups:

Dysautonomia International

Hypermobility Syndromes Association

Ehlers-Danlos Society

Ehlers-Danlos Support UK

EDS Research Foundation

Pathways To Trust

Patient Advocacy Foundation

The Zebra Network

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thecovenhouseco · 11 months

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Being physically ill and going to the doctor is the same as bringing in your car to the shop because it’s acting funny and the car running perfectly fine while at the shop.

#dissociative identity disorder #ehlers danlos life #ehlers danlos syndrome #ehlers danlos awareness #hypermobile ehlers danlos #physically disabled #i physically cannot #chronic illness #chronic pain #chronic migraine #chronic inflammation #chronic disability #gerd

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chronicallycouchbound · 6 months

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partner with both hips fully dislocated x bf who preheats the blankies to 350°F

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chronically-izzzzle · 2 years

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