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#undiagnosed ehlers danlos
clownrecess · 9 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
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thefriedbird · 2 years
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I am still in agony… we love going to the ER for issues that NEVER get solved 👌
Imma possibly get up with my workplace Tuesday to see how much Blue Cross Blue Shield would be so I can at least hope that I can get better health coverage because this shit is crazy… The geneticist that used to be at our state hospital relocated and so now there is NO geneticist in the state that could diagnose hEDS or joint hyper mobility unless for a hyper inflated consultation for 30 minutes costing $700 🫥
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melodymorningdew · 10 days
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Imposter syndrome is a bench
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Image description: drawing of a nondescript person with a tired/unimpressed expression on their face right next to a drawing of someone vibrating with excitement
Caption:
Me: "I must be faking my illness. I went on a walk yesterday."
Also me: "MY WALKER AND SHOWER CHAIR ARE ON THEIR WAY"
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talkethtothehandeth · 11 months
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cripple punk isn’t for mental disabilities
but that’s not saying you’re not disabled
you don’t have to be crippled to be disabled.
but you have to be crippled to have a voice you think you’re entitled to in cripple punk spaces.
you’re either crippled, or you’re not.
cripples having their own space doesn’t take away from neurodivergent/mentally ill people’s spaces.
how is this still confusing or controversial?
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As a kid my family used to make fun of me for stuff that is apparently exclusively reserved for “old people” like rolling across the room in a rolly chair to grab something (instead of getting up and taking three steps) or sitting down at a table to do quick food prep like cut fruit or scramble an egg (instead of just standing at the counter for 90 seconds) TURNS OUT what they called laziness was just disability all along haha TURNS OUT I just needed a mobility aid yet here I am today still without one because they gaslit me into believing I was “just lazy” and it took me decades to finally understand that’s not true. haha who knew
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can-of-pringles · 4 months
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I find it funny how one of the symptoms of hEDS is "really velvety soft skin" as opposed to regular tough cinderblock skin?? /s
How am I supposed to know what qualifies as unusually soft skin?
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weirdstrangeandawful · 4 months
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People who use forearm crutches help! I just called Air Canada about my flight in less than a month to ask how my crutches will be dealt with and I got the following:
They count as additional carry-on baggage free of charge (yay! good! baseline lack of discrimination)
They are subject to space allowance (what the actual fuck. my medical devices are equally as important as other people's clothes?! I need to board earlier and be in more pain to make sure they make space for them?!)
They have to go in the overhead compartment (THEY WHAT?!?!?! My crutches are plastic and aluminium! There's no fucking way they'll survive that!!!)
Has anyone dealt with this before and have any tips? I'm super anxious ;-;
The plane is usually either an Airbus A321 or Boeing 737 if that helps?
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I got a cane!! omg i was just walking around my room and i want to cry. I’m so much more stable it’s so much easier to move around
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i-earned-my-stripes · 2 months
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ALRIGHT EVERYONE WE CAN GO HOME I HAVE COMPLETE PROOF NOW THAT ABOUT ADHD AND AUTISM BEING GENETIC NO MORE QUESTIONS ABOUT IT!!!!
I'm kidding, I'm kidding, but seriously, my mom's side of the family lives several states away, and quite a few of them... dont get along with each other as far as I'm aware, so I don't really know most of them. My mom does, cause, well, she grew up with them. Well, today, I had a convo with my mom about stuff that's happening on her side of family, and you'll never guess what she mentioned!! Turns out, her whole family has ADHD and is on the spectrum. The more she learns about how her ADHD and autism affect her, the more she realizes that the reason she thought all this was completely normal is because it is COMPLETELY NORMAL for her family. We're talking 40+ people all directly related that all had the same experiences.
Now, we've already had a realization like this when we figured out that literally every woman on this same side of this family has EDS, but I can't stop laughing at this. It makes SOOO much more sense why it took so long for anyone to look into a diagnosis for anything, cause everytime anyone started poking around at the possibility that we weren't "normal" by society standards, they just point out how there can't be anything "weird" with us since everyone else in the family is like that.
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hack-saw2004 · 2 months
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thinking about that time in 2022 when i was in the hospital practically on my deathbed from gi complications w ehlers danlos, and this guy i had worked with a couple of months prior who knew i was in the hospital had the audacity to dm me and ask how i knew i had eds and how i got diagnosed. he didn't even bother to ask me if i was okay, he literally just wanted to use me as his little medical information source. maybe i was an asshole for not giving him any help, but i could barely even walk or think. i remember telling him something like "dude im literally in the hospital right now this is a bad time." and then never speaking to him again.
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gentlemanbutch · 7 months
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I have basically no access to care at this point because I live in hell (florida), but would *like* to see someone eventually to look into EDS and comorbidities…wtf do I do? I have no idea how to get anyone to take me seriously and I have an incredibly hard time not completely shutting down during appointments because of medical trauma and being autistic; at this point I’m thinking about making a binder with symptoms (and make a section for each area of my body, past diagnoses, research articles, etc.) but I don’t know. I just want to be taken seriously, and that’s assuming I can even get care. Right now I’m stuck with a fucking dick of an NP just because I need *someone* to prescribe my psych meds. (He also prescribed my T, which he can no longer do at this point because of FL’s new laws…he’s fighting that but I think I just may go off T at this point because I don’t really trust this man at all; I know what I’m doing with my psych meds because I’ve been on them for 6 years but need someone I feel safe with to help with my HRT.)
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gift-from-athena · 6 months
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Fuck undiagnosed chronic illnesses
Fuck nobody taking me seriously
Fuck the pain
Fuck all the different painkillers that don’t fucking work
Fuck Norwegian schools for having an absence limit so you don’t get a grade if you’re absent more than 10% of your class that year unless you have a doctors note validating said absence
Fuck my doctor for being useless
Fuck the hospital for having a 6 month waiting list
Fuck the price for a doctors note
Fuck my life
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chara-jame · 2 years
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People: An apple a day keeps the doctor away.
Me, who ate an apple everyday as a child and now has been to five doctors appointment in a week: Well, that was a lie!
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melodymorningdew · 5 days
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@doctordisco12
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talkethtothehandeth · 11 months
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If you’re a healthcare worker or your friends or a family member or whoever whatever to one, I do not trust you perspective about patient welfare. Mask mandates have lifted in the hospital/clinic settings. Many, many sick people and infected but asymptomatic cycle through those doors daily, and each of those people see other people who see other people.
I have to go back to the doctors in June to check to see if my body is still trying to kill me, and this is after not only that entire fucking year, but also those worst months in the fall— I have to go back after the mask mandate was lifted in my clinic.
I have to go in there and see the nurses and doctors who decided to stop masking. I won’t know if the nurse touching me has touched someone else who has COVID, or became infected by an asymptomatic patient that they saw prior to me.
I’m genuinely so scared to see if my doctor decided to work without a mask. She’s the best doctor I’ve had so far (and that’s saying a fucking lot), and I don’t know how to sit in the same room if someone who was wanting me to not die last year is not wearing that n95 anymore. I don’t know how to look at her and not see a betrayal yet again, a blatant showing of someone’s refusal to care about disabled patients, disabled people.
My immune system is shit, and I cannot afford to get it. I caught a simple cold after five years of not getting taken down by a virus all because of my body being too weak to fight back. My fiancée and I have managed to be extremely cautious over the years, and I’m so fucking thankful I have not caught it because this would ruin my entire life, and could possibly end it.
Does anyone know a good therapist for medical trauma 💀
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ghostonly · 1 year
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So I came on my three month trip to Switzerland with a two month supply of my anti inflammatory medication. This is what I use to manage my pain, because a significant amount of my pain comes from my muscles constantly being inflamed and angry. My doctor said when they run out to substitute with ibuprofen. Unfortunately over the counter pain meds here are not like in the US. In the US you can get a bottle of 200 ibuprofen for ten bucks. Here you get blister packs of like 12 for 4 bucks. So I can't afford to substitute my pain meds.
All of this to say I have just taken my last one on Sunday and they've officially worn off. I'm lying in bed listening to music and feeling miserable. I hope i can adapt to this again. I've gotten used to not being in excruciating pain so I'm not handling this well at all
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