Just because a certain, or popular disease "fits" your symptoms doesn't mean you have it.
I get that it can be hard to get a formal diagnosis, but until you do, PLEASE DONT SPREAD YOUR PERSONAL EXPERIENCE AS FACT AS FAR AS THE DISEASE GOES.
self-diagnosing for *personal* reasons is perfectly fine. if it helps you to just run with that diagnosis, privately, until you can have it confirmed or find the actual thing wrong with you, then go for it!
But please stop shouting to the world:
"Oh I have EDS and I experience xyz because of it!"
Because you are changing the perception of the disease to the public (healthcare workers included) by claiming that diagnosis, and you might be totally wrong.
• specifically for hEDS, I know so many people who have DIED from it and in the same day I hear a doctor tell me "EDS is just a tiktok trend..." and an hour later 50 comments on a tiktok video telling a stranger with hyperextended elbows that "you must have EDS! You're so flexible!" as if hEDS is just a flexibility issue and not the literal proteins in your body being malformed, rupturing organs, paralyzing intestines, and having your brain literally fall out of your skull.
Peace & Love,
a girly with cEDS who just read 20 posts under the ehlers danlos tag with varying degrees of "basically i have eds but also ive never actually been told that by a doctor, but here's my eds advice" (and a lot of that advice is actually horrible to give to someone with a collagen disorder).
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St Paul's station, London, June 2023.
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Hanger Lane station, London; 24.4.2022
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floor time
reblogs encouraged // ID in alt text
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It's important to slurp the breathable goop from your lungs so you don't get pneumonia!
Temir from Armored Hearts by @kaxenart
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cancer is the most my chemical romance sickness you can get i’m literally living the black parade album
[pic of sick me with my central line that i had ripped out of me just moments before]
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Walking by the sea,
That's when I'll be free.
I can do as I please when my mind is at ease,
And I won't be worried at all.
Central Line - Walking into Sunshine (Original Larry Levan 12" Mix)
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Happy last day of feeding tube awareness week, and for my last trick I will spill maybe the hottest take:
Feeding tubes aren't a big deal.
Its a plastic tube to your stomach or intestines that gives you nutrition.
Nasal tubes can be placed bedside. Uncomfortable? Hell yeah. Dangerous? No.
Surgical tubes are 1-2 incisions and a week of "ouch, fuck, dammit." Does it hurt? Yeah. Is it that big of a deal? No.
I don't understand the terror that doctors have around placing them. They keep this tool as the LAST resort for literally no reason. I know plenty of doctors who will wait until your organs are shutting down to even think about it. Mine did. And I have permanent liver damage because of it.
Starving is dangerous and serious and fucking terrifying.
A feeding tube is just a piece of plastic. Sometimes it rubs in annoying ways. You have to get it replaced. Some people get infections at the site. The tubing gets caught on door handles...
But none of them are being left to starve.
Truthfully, doctors withholding a treatment that is minimally invasive, with massive life-saving benefits to a person who needs it, is absolutely malpractice. That would be like refusing to give a heart attack patient treatment until their heart stops. The insanity is unreal.
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Eastbound. Bank station, London, December 2023.
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What if a vampire bit me and their fangs got caught in my port?
Mine actually goes through the top vein in my neck cause my anatomy be weird as shit for no reason.
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I noticed there's a lack of central line icons in the world so I created some with hickman lines just for fun
[image id: two simple line drawings of a person with a hickman line on the left side of their chest. the first icon is lined in black, the second in white.]
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Got my picc line placed today & had 2 bags of iv fluids. Hoping this is just the start to feeling better
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"Central Line"
The radio comes to life, a Tottenham court road shout
It was a 10pm night shift, I was only just starting out.
One under. The worst words you can ever hear
My stomach turns and I'm trying to mask the fear.
Me and Emma crewed up in Bravo 429
On our way to the eastbound Central line.
I’m praying, we won't be the first unit to arrive
What do I do if he is still alive??
We run down the stairs floor by floor
The reality of the situation dawned on me more and more.
The air was heavy and there was a smell of iron and burning
The train was half in the platform and my stomach was turning.
We were first on scene, passengers still in shock
Where do I start everyone is running amok.
We run alongside the train looking for signs of life
Can't help thinking ahead and who will have to tell the wife.
The driver was devastated but his composure I admired
He was only 2 weeks away from being retired.
I felt so out of my depth and like such a novice
But we did our job and we got back to the office.
We covered our emotions with humour and jokes
But it’s when you go home and you're alone it hits you the most.
Other people get time off and counselling if it gets too rough
But you're police, 50 quid if you write it up good enough.
Sure, these things always get better with time
But I'll never forget that night on the central line.
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