always be even more suspicious of the narrative of "addicted to pain killers" when they're talking about a person who suffered severe injuries likely to result in persistent chronic pain. are they actually """"addicted"""" or are they managing a chronic condition?
severe injuries optional, on account of stuff like fibromyalgia, Ehlers-Danlos, and Crohn's exist
Very much crying in the club right now 😭
I’ve been arguing for over a year with my health care network to add hEDS into my medical records. It now looks like the rheumatologist (yes THAT rheumatologist) was the one who refused to acknowledge it along with with my cardiologist, who made that shitty remark “patient claims to have hEDS but has a known history of anxiety”.
Well, turns out my PCP (who I saw today for an unrelated follow up) was having none of this, asked me to send over the files from the specialist and he’d make sure it was added, cause he couldn’t find hide nor hair of the files I sent over when I first got diagnosed. Got an email alert at 11pm. He’d even backdated it and I’ve just noticed that several comments where doctors had written “patient claims to have hEDS” have had additional notes added to them with “patient has documented hypermobile Ehlers Danlos Syndrome as diagnosed on 1/31/2020 by [Doctor Name]“ and I may be about to start crying again.
I turn 34 years old in less than two weeks, and I finally, finally have the correct diagnosis in my medical file 😭 😭 😭
ok very funny guys. you got me. now seriously who left all these neurotypicals in charge of the mental health field
who left all these healthy doctors in charge of the hospital
is literally what this sounds like
God, can you imagine how awful that would be? People with amputations consulting on things like prosthesis?
People in wheelchairs designing living and working spaces for people with mobility issues?
Autistic people actually trying to help other autistic people?
OMG, just thing – wouldn’t ti be awful if people who are now in remission actually helped manage the pain and other symptoms that come with having and treating cancer?
I mean seriously, what on Earth do any of those people really have to add to the discussion? What could they possibly know that an able-bodied neurotypical wouldn’t already know? I mean, experience doesn’t teach all that much!
/end sarcasm.
My care for EDS got radically better when my doctor’s kid was diagnosed.
Dr. Marsha M. Linehan more or less reinvented the field of behavioral therapy after spending years being treated to the worst 1950-60s psychiatry had to offer. She created the system now known as Dialectical Behavioral Therapy, now considered one of the most effective treatments for suicidal and self-destructive behaviors, as well as pretty much any other form of mental illness or mood/behavior disorders. She was able to do all of this BECAUSE she’s self-diagnosed with borderline personality disorder, not in spite of it.
The only therapist, out of the many I have seen over the past 30 years, to succesfuly treat my anxiety? The one who had anxiety herself. Not a coincidence.
[Image: the white text "This message is so simple, yet it gets forgotten. The people living with the condition are the experts. - Michael J. Fox" on a grey background next to a guy on a chair, presumably Michael J. Fox himself. End description.]
But when I say I love her, I mean it.
OK but she still looks like a model? What about the rest of us who don’t have the “right” body? Easy for her to say don’t worry about it.
Because she’s fucking survived an eating disorder? Because beauty standards in the western world - especially in modelling and hollywood - say she’s less attractive because she’s not white? Because being beautiful doesn’t mean you FEEL beautiful, and because she puts her money where her mouth is and is a FIERCE advocate for doing away with the shit that means she theoretically has it “easier” bc of her appearance, because no woman should be considered better than another based on their appearance?
Don’t be a DICK, maybe.
Not to mention Jameela also lives with Ehlers-Danlos Syndrome, which is hell on your joints and makes acting—a highly physical job—even more difficult. And yet, she’s thriving. She’s amazing, and just because she’s thinner than average doesn’t mean her body is perfectly abled.
Imagine showing that much of your ass about a disabled WOC who survived an eating disorder speaking up about unrealistic body standards.
Hell, even if she hadn’t dealt with all that shit, using her platform to talk about unrealistic body standards is what we expect everyone to do if they’re being a good ally. She’s not even an ally – she lives in the trenches.
ugh.
She was also hit by a car in her teens (iirc?) and was told that she would never independently walk again, so she used a walker for a period of time. She’s spoken pretty openly about the way being visibly disabled (as opposed to less visible/invisible disability) affects mental health because of how able-bodied people don’t see disabled bodies as fully human. She looks how she looks now – admittedly so stunningly gorgeous that it’s the running joke on TGP how hot she is – but she’s not just an ally talking out of her ass.
She also demands in any promotional material she does that she not be photoshopped, no covering up her stretch marks or skin bulges over the sides of her dress and stuff. She’s out here living up to her word and I applaud her for it
As a sufferer of Ehlers-Danlos Syndrome: Your joints constantly dislocate, you’re always dizzy and nauseous, food is rarely appealing, you scar easily, and are in constant agony. Nerve damage so bad I can lean on a hot stove without flinching. You do not feel beautiful when you’ve been up 22 hours, sitting on a dislocated hip and trying not to vomit.
[Text in images:
Sara Geurts, a model with Desrmatosparaxis Ehlers-Danlos syndrome
Melanie Gaydos, a model with ectodermal dysplasia
Winnie Harlow, a model with vitiligo
Victoria Modesta, a model with an amputated leg
Dayna Christison, a model who survived Hodgkin's lymphoma
Denise Bidot, a model campaigning for unretouched modeling images
Zach Miko, one of the few "plus-sized" male models
Rain Dove, models as masculine and feminine
Shaun Ross, a model with albinism
Madeline Stuart, a model with Dawn's Syndrome
Hanne Odiele, an intersex model who is an active intersex advocate
Khoudia Diop, a model that opens up about her years being bullied for the darkness of her skin
"To me beauty is being comfortable in your own skin. It's about knowing and accepting who you are." -Ellen DeGeneres
End text.]
Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.
For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!
The company is also family owned and the people are so sweet and helpful!
If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!
I’m literally crying right now. I will be able to use my hands!!! As it stands I can’t do dishes, hold things, write, hold books, type, without pain or dislocation. Oh my gosh. This is a miracle.
@peaceypanic
those are gorgeous and that is amazing how well they’re working! signal boost!
I love these things. I use one for my thumb because due to arthritis I have very little strength/support in the joint and therefore often can’t do anything. My splint makes it possible for me to do my job, do the shit i need to do and not have as bad of pain.
these are so cool
omg the first ehlers danlos post I’ve seen, this makes me happy!
I know people following me have Ehlers Danlos Syndrome so here you go! I hope this helps you.
-FemaleWarrior
