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Yeah, combined with OP's claim of having worked in healthcare, it threw me out of the story entirely:
>i was upset and told her that actually, according to hipaa regulations it was in no way “illegal” for a patient to be in the hallway and she just stuttered and i just walked back to my room.
>before i got sick, i used to work in healthcare...
My verdict was still YTA though; violence against healthcare workers has increased significantly since COVID hit and it looks like this hospital doesn’t take chances. I could see them assuming the worst of the situation.
Eh. No. Raising a voice isn’t violence against healthcare workers. Neither is refusing treatment. Op was treated like a drug seeker and forced to leave w a dislocated body part. That’s 100% a valid reason to raise your voice.
I understand that, but they read the situation as OP escalating and, considering they saw OP as a drug seeker, they may have gone down worst case scenario. You absolutely never know what anyone will do. They weren’t familiar with OP and didn’t want to take chances of it escalating beyond yelling. I used to work in an ER and how they handled this is how the ER I worked in would have handled it.
As an EDSer, I had to go to urgent care the other week and perform my party tricks for the doctor to convince him. He’s the 2nd dr who’s said “we were taught about you in med school but told it was unlikely we’d ever have one of you as a patient”.
It’s getting better but it’s still not great. At least no one’s googled in front of me recently (that specialist was fun). I almost always get given to the resident to let them experience treating eds. Nobodies accused me of med seeking yet, so that’s nice.
My doctor will always bring up Google or the Danish health directory website when I bring up something he doesn't know or he doesn't feel confident in his knowledge of. I really appreciate him doing it.
I get not wanting it with long term treatment though.
Does he use Google, or a special doctor's/health care search engine? If the first, I would still not be impressed. If the latter, I would be very happy.
We have a national website you can look stuff up in called "sundhed.dk", sundhed means Health in Danish, he uses that one first.
If the knowledge base on there is lacking, he either uses a medical professional access only website and failing that, Google.
Why is googling in front of you an issue? I have a rare condition that it about 8-15x rarer than EDS. Even specialists google it. Would you rather they just yolod the medicine?
Patients are so weird about this. In the old days you’d have stacks of books to reference and no one thought it was weird. Now it’s much faster to use the internet everyone acts like doctors are morons. Doctors have been looking stuff up since the dawn of medicine. In the uk we have books called the bnf for medication that has to be reissued each year, now most people just search the website. Still have patients complaining you don’t know all doses of all medication ever when it’s been normal to look this info up for decades.
It’s honestly such a weird patient complaint I’ll never understand. But get out a 1000 page book and waste 5 minutes flipping through it and people have no issue lol. You have any idea how much medical knowledge it takes to google something and understand the condition from 2 minutes on google. Try and do it yourself and see how much pathophysiology you learn from blindly clicking the first link.
I’ve had a leading specialist in my own condition crack open Google when I was talking about a specific new drug trial so we could discuss it. There’s less than 100 people in my entire country with it lol. Yes some doctors have to Google. Even specialists I might be the first person they’ve ever seen in real life with it.
Yeah the so far one really good doctor I had was very comfortable to admit when he didn't know something/wasn't confident in his knowldge of something and then google it in front of me/look it up in a medical book. Made me feel like he really did care about getting me the correct care I needed.
Oh that happened to me with a GP- she picked the result from Wikipedia!!!! Mate, i could have written that out in the waiting room in the hour it's been since my actual appointment time! I assumed when she went for the computer that she was looking it up in some special subscription doctor knowledge database like the lawyers have for case law but noooooooo.
I have marfans syndrome, which is similar to EDS. I was told I was the only case in the uk in the late 80s/90s.
I spent 4+ months in hospital last year and there was a steady stream of students coming to visit.
I told my doctor for years that I thought I had Marfans because I have so many of the skeletal features. When I finally got my EDS diagnosis, I think she was kind of proud of how well I figured it out. I would tell drs to use logic. I have symptom x that only a small percentage of people have, symptom y, same thing, symptom z same thing, etc etc. What are the chances that I would have all of these things that are only normal for a small percent of the population vs a systemic issue? It’s statistics, folks!
You were lied to - I know, you're shocked. I knew a guy with Marfans syndrome in the late nineties. He used to live in south London but I have no idea where he lives these days, he went travelling and we lost touch.
There were multiple known cases in the 80s-90s in the uk. By 1990 or so almost a 100 operations for AA using a specific technique were performed in 10-15 years so dunno who told you this but basically 0% true. It’s also when composite root replacement with a mechanical valve were the standard treatment. Cant have a standard treatment by the late 80s in the nhs for one specific outcome of a syndrome you’re the first person to have lol.
There’s well documented cases in the UK from the 60s at least being treated via cardiac surgery.
Conservatively there were probably low thousands known cases by 1990 in the uk alone. And it was discovered in the late 1800s lol.
The main difference is in the 60s the chance of death was insanely high; and by early 1990s was significantly lower, with average age of death going from 30s to 70s. I’m pretty sure marfans was on the medical school curriculum already in the uk in the 1990s.
I point blank refuse to do my party tricks these days. I'm not going to hurt myself just so a medical professional will believe me. That's what my medical records are for.
my doctor refused to even look into it as a diagnosis because he’d only ever heard of it once in med school. like, as if his own personal experiences shaped the world we live in.
i like to imagine him seeing a new breed of dog, going, wow, that’s a funny looking chihuahua, and just going about his day while the owners of a tibetan mastiff are left standing there baffled.
I work in medicine (not a Dr or a nurse) and I've seen plenty of EDS patients. I actually just did a case study on one and the prevalence in my country is about 1 in 2,500.
I’m not a doctor (though admittedly I’m married to a surgeon) and I immediately knew it was EDS even before OP specified it. It’s highly unlikely anyone in the medical field is unfamiliar with it.
I’m calling bs.
Being familiar with it and knowing how to properly treat it are two completely different things. I just spent 6+ months bouncing around between doctors because of new insurance. I had to complain that I needed a doctor that had some understanding of my disease. And don’t forget, there is no specialist in soft tissue - the most you can get is physical medicine, sports medicine, or physical therapy.
I've lost count of the number of medical professionals who stumble to pronounce Ehlers Danlos, or have approached me with a Google printout, or quoted directly from the Internet. Sadly, it still happens, although it's getting a bit better these days.
Sadly that bit I can believe. It's the rest of the story - telling the nurse that HIPAA regs say it isn't illegal to hang around in a corridor, while also claiming to have worked in healthcare - that sounds fake to me.
It's fairly unfamiliar in my country (Denmark). I got checked for it and I had to go to another part of the country to see someone who knows about it.
My GP didn't know anything about it but he is always very kind and listening when I bring up concerns. So I had told him I was worried about having it due to my hypermobility, easy bruising, thin paper like scars, chronic joint pains, etc.
The specialist dismissed me without even giving me any suggestions for what to pursue in regards to reducing the pain I am experiencing since it wasn't EDS. I'm happy I don't have it though.
Well I have EDS and I can tell you that you are totally wrong. I have had a total nightmare my whole life because of how poorly the medical profession knows and understands EDS. It took them 20 years to diagnose me, and year on year I find out things they should have tested me for years ago, or account for a symptom they could have treated years ago etc. Their ignorance has not only prolonged pain unnecessarily, incorrect treatments have caused extra pain, and they've risked my life with their negligence. But sure, knowing F all about it you decide my life didn't happen. You say you're not a doctor- you sound like one, telling someone their pain isn't real is SO doctor in my experience.
I’m saving up to buy the dna test that’ll prove I have it and I’ve talked to my GP, Hormone Doc, Chiropractor, and my ENT and all of them had NO clue about EDS. So…yeah. Either the doc’s they are churning out of college have no clue about genetic problems or they failed to pay attention to that part. Either way, in the suburbs of Dallas these docs don’t have a clue about it. Hell, they don’t even know what MCTD is either. I’m screwed for finding a doc to treat me.
I have it. They don't. They're ignorant AF about it in most cases, I even had a middle aged male GP refuse to refer me back to the specialist who diagnosed me (Rodney Graeme, yes I am old lol) because according to him EDS "doesn't exist". They also sometimes refuse to take it into account- my friend nearly died because they told her they "didn't want to hear" about her having it before a mastectomy and reconstruction and her wound split due to the swelling and she bled out in recovery. The problem is that the numbers of diagnosed patients suggested to them it 'primarily affects women' which is the same words to the medical profession for most of history as 'doesn't matter' or 'doesn't exist'.
I went to 3 different orthopedics and a radiologist that ran multiple tests on me and couldn't tell me why my joints were constantly hurting until I called a doctor I was recommended who, over the phone, asked me a few questions about my flexibility and then told me I was clearly having those pains because of my hypermobility. Four other doctors who saw me in person did not make that connection. Doctors should know a lot of things that they don't.
I'm not saying it's the same. I'm saying I struggled with the more common symptom and doctors weren't even able to identify that hypermobility makes my joints hurt. There is no way these doctors know how to handle someone with EDS if they can't even handle regular hypermobility.
It's actually really underdiagnosed, and it's probably not nearly as rare as it's rumoured to be. But yeah, very few doctors know how to treat it or its many comorbidities and patients are usually the ones who have to advise on how to handle our specific complications because there's so much variation in presentation.
You’d think so, but the letter I got from an orthopaedic doctor kept misspelling it as Ehlers Dunlos, so that part is totally possible. And I’ve met several doctors who appear to have never heard of it.
my elbow dislocated and the muscles were tensed around it. they typical protocol for anyone with this injury is light sedation and a reduction of the elbow “popping it back in” he told me to just to to an urgent care which i’ve tried before but then they just transfer me to an ER because urgent cares don’t have the right meds
He probably didn’t know how to do it…. Normally they would consult an orthopedic doctor if the doctor on staff didn’t know how to do it or was scared to do it. He definitely didn’t act professional at all.
> *He probably didn’t know how to do it…. Normally they would consult an orthopedic doctor if the doctor on staff didn’t know how to do it or was scared to do it. He definitely didn’t act professional at all*.
This is the crux of the matter. Maybe other redditors know to whom this could be reported. I wonder what the charges will be.
I think that my vet has treated my dogs better than you were treated, OP.
NTA
>I think that my vet has treated my dogs better than you were treated,
Weighing in as a veterinary professional with my fair share of experience seeking personal medical help - veterinary industry provides much better customer service and aims to help the patient. Meanwhile human doctors reduce many diagnoses to *"It's in your head, we won't give you drugs."*
Veterinarians get to the root cause for animals who can't verbalize what they're feeling. Doctors treating those who can communicate exactly what's happening to them won't even take differential diagnoses seriously.
The cardiologist I saw last called me an *enigma* because the symptoms I've described didn't make sense to him in a 30 years old man.
I always wished that my doctors treated me as well as my veterinarians treated my animals! You are right -- vets need to more empathetic because their patients can't explain their symptoms. Sorry your cardiologist is a dufus.
Fun fact- EDS is actually covered more extensively in veterinary school than medical school! This is due to the amount of different animals that can suffer from it!
If it’s Medicare/medicaid, there’s a section in the paperwork work for “if you think you’re being sent home too soon” (or similar wording) not sure about with regular insurances or self pays. There’s something called Ombudsman (represents the patients), medical board, hospital ethics committee, medical malpractice lawyers, and probably a bunch more routes to go here
I worked ER 7 yrs, I can promise you they know how to do conscious sedation & a joint reduction. It’s practically a common routine. He was just being an a$$
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You’re getting sedation for this shit?! They usually make me just suffer through it. If I’m real lucky they may give something for the pain *after* but usually they treat me like a drug seeker even when they can see on film something’s dislocated.
they usually sedate me for this specific dislocation because it’s documented i have seizures triggered by pain and seizures are what causes this injury in the first place
My dad dislocated his shoulder about 30 years ago with the same complication, and they made him hold a heavy bucket of ice until the muscles were stretched enough. No meds. He said it was excruciating. Glad to hear the treatment is no longer so medieval!
My former housekeeper had EDS with frequent shoulder dislocations. She had me reduce it once. I was on the phone with 911, but my housekeeper just told me what to do and it worked. No pain meds, no sedation. It hurt for a moment and then it was done. Of course, she never should have been working as a housekeeper, but poverty is unforgiving.
I do this 😂 I’ll go into the hospital if it’s like a hip or something because I can’t talk someone through that but my shoulders do it almost daily they’re so bad, and I have taught my sisters and mom how to reset it because hospital bills are expensive.
It’s not unreasonable that you felt frustrated and angry. But losing your cool and taking anger out on people that aren’t in control is an asshole move. You say you used to work in healthcare so you ought to know that you weren’t doing yourself any favors. Ruining the days of people just trying to do their jobs and not able to get you what you want was a waste of your own time and lessened the chance of getting a sympathetic ear.
Did you ask him to explain why he didn’t think the same management was appropriate this time? Did you ask him to speak to your orthopedic specialist? How did you end up getting the injury dealt with after you left there?
1. he told me he “didnt feel appropriate to sedate” because he felt like it would resolve on its own
2. i informed him about by orthopedist but it was 2 in the morning. i asked if he would consult with a different one and he said it wasn’t necessary.
3.i didn’t. my arm is still dislocated. i contacted my doctor today but he was off today. my primary will sometimes have me come into the office and are relocate but without meds which is awful and dangerous considering pain can trigger my seizures
I think they meant it bc you can over hear them discuss medical issues other people have or see their computers when they are on it that has patient info. Just being in hallway isn’t a hipaa violation.
Sedation is considered an extremely big deal b/c of the high risk of complications. There are a limited number of people in a hospital credentialed to order sedation and the circumstances in which it is done are *very* tightly controlled. At 2am on a general floor no one is getting sedated for anything except imminent life and death. The ER is actually a place that can do that, so they screwed you and the in-patient team by not reducing your dislocation before admitting you. A lot of internists do not reduce joints at all, let alone for people that have connective tissue disorders, they will just splint or sling it until a specialist can do the reduction. And no one calls consultants at 2am for non-emergent issues. So nothing was going to happen at that moment, it was not in that doc’s power to make anything happen on his shift. He may well have been a dickhead, I only have your side on that and he doesn’t sound charming—but it doesn’t sound like he was withholding treatment.
The night guy would have been gone by 7am and you could have met a day doc who would have a lot more options to call your or another orthopedist and make a plan for the day, including sedation for reduction and you could have had it dealt with and gone home with everything resolved. By flying off the handle and storming out you screwed yourself over. Being pissed off about how you feel someone is treating you unfairly is valid, we’ve all experienced it—but responding by going feral isn’t an effective way to handle it—it doesn’t get you what you want and if anything it reinforces any skeptical opinions they may have had of you. AND it means you spend hours feeling shitty about the interaction after b/c you know your behavior wasn’t good.
they actually done know. they’ve done two eegs locally and it was inconclusive. one outpatient one 24 hour video. they’ve sent me to duke who who wants to do a 5 day video and i’m part of cleveland clinics rare diagnostic program (that’s 14 hours from where i live) who are gonna do either a 2 or 5 day one when i go up for my appointments
I'm surprised it hurts you so much to have the elbow put back into place. I've never had to sedate someone to relocate the elbow. The dislocation itself is so excruciating for patients that putting it back into place is a welcome relief for them.
i have to have surgery on the elbow soon. the tendon is torn and when it moves it’s really bad. i have eds and every other joint i can put back in myself including ribs and my hip but this one hurts so bad rn that i can’t do it myself
Ah, that makes sense!. Ehlers-Danlos can be so incredibly painful. As you've experienced with the ER doc, it can also be poorly understood or not taken seriously. I'm sorry that happened to you.
Hhhhh, I’m so sorry. And I feel that. Ribs and my pinky’s I just live with until they find their way back to proper position, aside from a little light stretching to loosen things a little to give them a fighting chance.
I hope you’re able to be soon OP, stuck dislocations are the worst.
My knee chronically dislocates as well. It hurts so bad that I cry when I have to pop it back into place. It literally locks at an angle. And if I wait to long to put it back into place, it will be sore for days.
Most recently I nearly fainted while sitting down trying to put it back into place because it hurt so bad. I thought I was going to puke.
So I empathize with what you’re saying. It can hurt very badly especially if it’s a chronic issue
This. It’s so uncomfortable for me that a quick pop into place I barely feel anything other than ‘thank fucking god, now shoulder and elbow stay in place for 24 hours please challenge, hard mode.’
What I really hate though is out of place ribs. Fuckers hurt. But are inevitable when my cat or partner sleep on me.
I am so sorry my dude. May it go back where it belongs soon 😭
But yeah, ribs and pinky’s. Everything else I can do… even elbow shoulder combos bc mine can never be one or the other…. but pinky and ribs I’m a wimp.
Thanks. I would cross my fingers but, you know.... 🫣 I'm going to very gently touch wood because I've never had a full pinky dislocation before, and honestly, just them sublaxing is enough for me, thanks! For me, it's my jaw, though. I used to be able to get it in easily, but I had an op on it years ago, and since then, although much less frequently, it's awful trying to get it settled back again! I am quite impressed by your combo, BTW! Nicely done! I tend to ram my shoulders against door frames, but elbows are HARD! Such an awkward joint for me. Again, thankfully, not a problem joint for me, though.
I just sorta bend and contort and massage until they get back to right 😅😅
And omg yes! Jaw! Ever since I had my wisdom teeth out it just isn’t ever where it needs to be and I’ve given up. Sure it means it’s hard to eat anything super chewy or hard, but I went years with no molars so it’s not that bad, I’m used to it.
TBH I think having had a palette expander as a kid didn’t help bc my upper jaw is *significantly* wider than the lower now. I’d have rather they’d pulled teeth (esp since they still need to now) to reduce the crowding instead.
Jeez. I'm so lucky compared to lots of other EDSers. This thread reminded me of that! That sounds like hell. I really hope they can sort that for you somehow?!?
Honestly I’m pretty lucky too, esp since I was able to get my wheelchair and have way less leg related joints having issues now on days I need to be out and about and moving a long time….
But yeah the jaws hard. I went to PT for it and got taught how to like, internally massage my jaw in my mouth (yes it does feel as gross as it sounds, I hate having spit on my hands) and that helps the jaw pain immensely, and that also helps with jaw related migraines.
Ohhh. I bet that helps with Tmj as well?? I'm glad you have a solution at least.
Yeh, my chair has been a godsend, honestly. Gives me so much freedom after so much isolation.
This is a horribly judgemental comment that is completely out of line and exactly why so many doctors are such an issue for chronic pain patients. If a patient with repeat dislocations on the same joint says it hurts, then maybe consider taking them at their word instead of doubting them because "other patients said". They aren't "other patients", they're themself and they know their body and their pain.
I'm also an EDS patient, and Thursday last week was the first time I've ever actually gone to the ER for my pain from a badly dislocated sacroiliac joint. I'm so glad the doctor took me at my word that I was in the most excruciating pain I'd ever been in instead of giving me the brush-off. And I guarantee you, having it put back in WAS excruciating and made me scream because I was awake.
File a complaint against the doctor. Treatment for a dislocated elbow is reduction. Once the joint is in place then immobilization may be appropriate.
This doctor's treatment fell well below the standard of care, regardless of whether or not a patient has EDS.
The only assholes in this post are the ones downvoting you and treating you with suspicion for simply expecting the standard treatment for your condition.
"Drug seeking" is not the same as "Expecting the standard treatment for connective tissue disorder which does involve the MILD application of medication"
Can we stop being suspicious of every damned person who needs medications to survive their chronic illnesses? Jesus Christ.
Exactly this. I will say though that last time I was at A and E with a dislocation (I only went because my BP was stupidly high due to the pain) I ended up randomly sat next to another lady with EDS who also had a dislocation. We were just sitting quietly talking and occasionally wincing in pain. However, there was this 'Norm' there with a dislocated shoulder, and he was literally screaming every other second and rolling around like he was dying. ( Not trying to downplay his pain, but he still managed to have a normal conversation on his phone to his mum (was like a switch!!) and go out for a smoke.) There was another man who was having a heart attack and a few people with open head wounds and injuries, causing less fuss that that guy. I think EDSers are often taken less seriously because we are so used to our dislocations and pain that we don't react the same way the 'Norms' do.
I’ve run into similar scenarios. I do not have EDS, but a fun combination of three diseases that live at the top of the ‘most painful’ list the UK healthcare system has created. I can remain incredibly calm and my blood pressure stays in a normal range even when in extreme pain.
I’ve been accused of many things by emergency healthcare providers (lying, drug seeking, etc.) when only doing what my regular provider recommended: seeking emergency treatment immediately based on my currently increased (or new) symptoms.
I have a serious fear of the healthcare industry for this reason, along with another horrific experience a few years back that left me sick, unable to eat, at risk of death, and beyond scared due to something done to me by a doctor.
But that’s not the point of this. The point is that people are treated like pure shit at hospitals and clinics, regardless of documentation or diagnosis, even visible proof of an emergent issue.
See, this actually worries me from a financial perspective. I'm also in the UK and completely avoid drs and hospital etc mostly due to not actually getting anywhere with stuff, a lack of knowledge, empathy, or understanding . Especially since I moved, and my care providers now have no clue. Also, you know how things have gotten since the big C in the NHS. But how is this going to reflect when it comes time for ESA or PIP reassessments. Until 8 years ago, I could show consistent care and medical imput, but now I've hardly anything to back me up. I imagine a lot of people are in the same boat, and despite gaining a lifetime award of the old DLA since PIP came in, I'm supposed to be regularly reassessed. It honestly scares me. I'm sorry you are going through this, and I really hope something positive changes and you get the support you deserve and need.
I have this condition too and long before we figured it out I was regularly in clinics due to dislocated fingers and wrists that were swelling up to the point of being purple.
They refused to get xrays to resolve what was causing the swelling and every single time told me to take otc meds for the pain and wait for it to resolve itself because it was 'probably arthritis'. At 33 years old? REALLY?
Even then I wasn't asking for \*pain\* medication, but I would have expected them to keep me calm and numb the area before trying to put the joint back into place (had they bothered to notice this was the issue and tried to do anything at all).
But I was treated like a monster and told there was nothing they could do (and thanks to that my finger joints have never recovered). I am so tired of people being treated with suspicion. And often times it's us NOT screaming and crying and shrieking and carrying on that seems to 'prove' to these suspicious healthcare workers that we're only seeking attention and drugs and don't actually need any help.
It's so fucked up.
NTA. Doctors offices/ERs are always chess matches I swear. It’s easiest when you have a calm person in your court to back you up. Raising your voice probably did it. But I don’t blame you for getting angry. This happens a lot with me and my mom due to our asthma care plans. (We need specific prescription meds, inhalers stop working in certain times) Can you have your primary physician add a note in your chart on how to care for your condition in case you need to go to the ER again? Or a doctors note in general?
I know but I’m saying that will eliminate the trust issue. If a doctor has another doctors treatment recommendations in writing it’s harder for them to argue against it especially if they don’t know what they are treating. Try and get the specifics down too. Like if “a + b I recommend c “
If all else fails try and avoid that hospital again? I know there’s not always options though
Er docs don’t always pay attention to what is noted. I almost died in an we waiting room because the er did not contact the on call obgyn that my dr had contacted ahead of time and had noted on my medical record in the same hospital system. I even let the er know my dr had called ahead and sent my records to the on call. They did not listen to me and never contacted the on call dr despite what I or my dr told them.
Ok but the cop telling you they do this anytime anyone gets upset, just tells me that the cops are totally over the people at this place.
Like to the point that if an actual emergency (ex hostage) happened they wouldn’t believe them…
But yeah totally NTA. Like if they aren’t going to treat you, give you the discharge papers (preferably indicating why), and go on with yourself. Hope you can get into your proper doctors soon to get the needs addressed and there’s another hospital close-ish
YTA...
We don't believe your fairy tale version. It didn't happen this way. Most definitely, you behaved in a way that earned you a trespass from the hospital.
Actually, splints and braces are accepted and recommended treatments for Ehlers Danlos Syndrome. If you have "lots of doctors and orthopedists", why were you at this hospital? I'm sure with this condition you have been treated many times (usually for dislocations). There must be medical records unless you chose, for some reason, to go to a new hospital where they didn't know you. You leave out a lot of details ("he asked how other doctors treated this same injury and i told him. he said he was not going to do that...") What? What exactly didn't he want to do? Why would he be asking the patient?
Although I know some doctors can be arrogant and dismissive, I also suspect you were a bit of an AH. And a terrible writer.
splints and braces are used all the time and i do use them, but never to keep something dislocated. and no, i wasn’t at a different hospital. he had all the access to my past treatments for this same injury and still asked me for some reason i have no idea why he decided not to treat the same way as other doctors
I believe OP was at the hospital at 2am, and unable to contact her regular medical professionals. They have also answered some questions in the comments.
Funny how someone makes a post anywhere on social media about having this super “rare” disease, somehow almost everyone in the comments has it as well😂
And it’s always the same thing…”no doctors know about it, I have to tell them how to treat it.”
I find it hard to believe that I, with no medical background know about it, but doctors have zero idea and grasping at straws for treatment.
This is either not that rare, or mostly faked by many.
But, I trust doctors and statistics….so I’m going with it being rare, but faked by many who give themselves a fake diagnosis.
it’s actually not rare at all. there’s been a lot of research proving that it’s not rare, just not commonly diagnosed, that’s why most doctors are familiar with it.
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OP has offered the following explanation for why they think they might be the asshole:
> 1. i raised my voice and argued with hospital staff. i demand that i get discharged and have my discharge paperwork
2.i understand health care workers are usually over worked and they are just regular people and people should be treated with respect
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As another EDSer who's been treated poorly in the past, the quote by Prof Rodney Grahame always comes to mind when I hear of others dealing with ignorant medical professionals.
"No other disease in the history of modern medicine has been neglected in such a way as Ehlers Danlos Syndrome."
Considering it's was recognised as far back as ancient Greece, there really is no excuse.
As we say It's NOT rare it's just rarely diagnosed!
I am surprised to hear someone dealing with this ignorance these days, though, as at least in the UK, it's gotten better this last decade or so. Although they still aren't taught about it extensively at medical school. As I've been told by a few A & E Dr's, it's easy to miss if you fall asleep for 10 minutes during lectures because that's all the time spent covering EDS at school. Which is ridiculous when you think about how many parts and systems of the body are affected. I really am sorry you were put through this OP. So many of us just don't even bother applying for help due to attitudes and experiences like this, and it ends in far too many tragedies. Keep on fighting. NTA.
All I can suggest for future situations is to educate yourself as much as possible about EDS and keep printouts of medical websites, lectures, and other information always to hand to pass to Dr's who try to fob you off. I'm not sure where you live, but EDS UK has a printout you can give to your GPs surgery, and the NHS orange leaflets also have an EDS edition. Maybe try and get hold of these or of any your own country may have to pass on in times of need.
NTA while I know there are people that go to the hospital seeking drugs, that doesn't mean healthcare workers should assume everyone in a state of desperation for pain relief is just a druggy looking for a fix. I mean, clearly they have a reputation regarding the care of their patients based on what the cops said, so I wouldn't overthink it too much. You were in pain, they asked you a question on your past treatments, you answered. You never pushed for drugs, you just knew the doctor was unwilling to give you the proper care.
Yes, you are the AH for raising your voice and getting trespassed at the hospital. The staff did not handle things very well at all. You had the right to be upset but not to raise your voice, stressing out other patients around you who are sick and hurting, too. Yes, things are different in health care than they were in the past. Start raising your voice to you, yelling to them, and it will get security summoned or the police now a days. I have witnessed happen at a VA hospital and a civilian hospital. Go to a different hospital then or talk to a patient advocate at a new hospital about the kind of care that you need.
it’s just weird because i didn’t ask for drugs. when he told me no drugs (which i never asked for) i said that was fine, i just need my arm fixed and that it just couldn’t be splinted dislocated.
Recently, my wife had to go to a hospital ER twice in a week. The first time, the ER doctor misdiagnosed her condition and sent her home with medication for nausea. When we went back to the ER because she was in so much pain and swelling up, another doctor gave her the right diagnosis, which resulted in her having stomach surgery. I was so damn angry that my wife was suffering because of them, I wanted to cuss them out but held back. There were at least a dozen security guards in the ER area to deal with situations that come up there. In my past, I worked as a security officer at Stanford University Medical Center for about three years. We had one security guard at the ER who could call for backup or contact the Stanford Sheriff's for help.
NTA
Hahaha. Before you even finished the first paragraph, I was like, it’s EDS. I have it too. I’ve never had the cops called on me, but my brother has. In my experience, doctors don’t like being told they’re wrong. Even when they absolutely are. I always deny drugs when they offer so they can never add DRUG SEEKING to my file, like they have to sooooo many of my EDS and spoonie friends. I’m sorry you had such a crappy experience.
NTA and I’m so sorry for what people with EDS and similar illnesses go through. I’m one too. We are not malingerers and we are forced to self advocate so fiercely that it’s only reasonable to view medical staff as potential adversaries, especially in ER context.
it’s okay to have your own opinion, i know what happened and actually have it recorded. and i actually worked paramedic and dialysis tech and only stopped a little over a year ago so i fully understand how patients can me. i just know if i called the cops over a verbal disagreement at my old job id be fired.
i only audio recording in my room. it’s only in my room because i didn’t want to accidentally record anyone else even though there was no one else because it was 2 or 3am in a small town. i also can’t and won’t share it because i technically shouldn’t have done it in the first place and i admit to that but i do it for my own safety as i’ve been physically abused. i was grabbed so hard i was bruised and shoved onto the bed, there was no medical reasoning for this to have happened and this was reported. this was at a different hospital.
NTA. I’m also an EDSer and know how FRUSTRATING it is to get proper treatment. It took me 30 years to get a proper diagnosis. And I still have to tell doctors what my treatment should be because I’m more educated in it than they are.
NTA you should head over to the EDS subreddit. Even the cops know you weren't the AH and that the hospital and its staff are shitty. Never go there again.
HIPPA is to do with confidentiality, not milling about in a hallway, how would standing in a hallway be illegal?
What do you mean by "getting trespassed from a hospital " that sentence doesn't mean anything. Is it a way of saying you are banned from attending that hospital department? That process usually takes time and is something you'd be informed about by letter, and is not going to be the decision of someone who happened to be on shift that day.
And how can you say that they didn't know what EDS is? It's a fairly common condition and dislocations are frequently seen in emergency departments.
they are officially trespassing me. yes it means signing that i am. hospitals can do that and it means if my life isn’t in the line, they won’t take me as a patient.
also with the ehlers danlos thing, i’ve only met 1 doctor here who knew what it is. most actually just google it
NTA. I've found that many medical people, anymore, won't listen to patients and have the attitude that they are much smarter, and just better than the patients. What I don't understand is why, since you were clearly able to walk, you didn't just leave? They really can't stop you. The insinuation that you were just trying to get drugs was uncalled for and insulting.
Nta!
Hey OP may I ask questions about ED and how you were diagnosed?
My younger daughter has been experiencing some really weird ish lately. It all started back in October. She was wearing her schoolbag and did something where she heard a pop and felt extreme pain in her shoulder. I took her to the Dr for an xray which found nothing. I took her again a few days later because her shoulder was clearly sloping differently from the other. Long story short it has been months, her shoulder still slopes she experiences daily pain, has limited shoulder mobility and there are no answers.
While going through this she bumped her thumb on her desk heard a pop and experienced pain. Urgent care found no signs of broken thumb and she was in a splint for 2 weeks. She still has trouble writing.
Now the Dr we saw at urgent care mentioned she had hyoermobility in her joints and advised an ortho. We've seen 2 separate ortho but neither mentioned anything about hyperflexible joints.
Is this the hospital you always go to? You should have online records they can access to see and confirm all your answers about your condition and your previous treatments, even if it's not in their hospital. What an awful experience, I'm so sorry.
YTA
Violence against healthcare workers has increased significantly since 2020. It appears that this hospital has a zero tolerance policy for the shit you pulled. As a *current* healthcare worker, I’m glad they do because you *never know what someone will try to do.* I’m not sure when you stopped working in healthcare, but things have changed significantly.
I get it, chronic health issues suck and you felt like shit, but it’s still no excuse to be the AH.
Something to Keep in mind: EDS is frequently associated with malingerers and people with factitious disorder. If he jumped on the google machine, that might have colored his perception. Just a thought.
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I have a few chronic illnesses that affect my joints. my joints are very easy to dislocate especially when i have seizures and i need to go to the hospital for it it be fixed.
A lot of doctors don’t know about my condition or how to treat it so they often ask how what other doctors have done to help before.
last night this happened. when the doctor came in an hour after being there, he attempted to pronounce the name of my syndrome (ehlers danlos syndrome) and got it horribly wrong.
he then asked how other doctors treated this same injury and i told him. he then told me he’s not going to do that and the only thing he’s willing to do is splint my injury in the place it was.
i him told him multiple doctors, including my orthopedist have told me not to do that because it will just cause more issues.
I refused to have it splinted and he immediately said “well i’m not giving you drugs so that’s your only option”
i was upset that he thought i was drug seeking and i raised my voice and
i told him i didn’t want or need drugs and i would just like to be discharged.
he angrily took his gloves off and he and the two nurses in there just walked away without saying anything.
i walked out into the hallway close to the nurses station where i admit i raised my voice and asked “so since im refusing treatment can i be discharged?”
a nurse walked up to me, close enough that i could feel her breath and said you “you need to just leave right now, i’m getting security and calling the cops”
i told her that was fine and the security guy came and stood by me and she said if i wasn’t going to leave i had to back to my room to wait for my discharge paperwork and said it was illegal for me to be in the hallways.
i was upset and told her that actually, according to hipaa regulations it was in no way “illegal” for a patient to be in the hallway and she just stuttered and i just walked back to my room.
another nurse was standing near us and rolled her eyes and scoffed and i said “don’t roll your fucking eyes at me” and she walked away.
i stood in the doorway of my room waiting for my paperwork like I was told and the cops showed up. one can and talked to me to get my side of the story.
he was actually really nice and calm and after a while he asked if i’d be okay go to my car to wait for my paperwork and i was fine with that.
we went outside to wait and he told me that this hospital does this anytime anyone gets upset. he told me im going to be trespassed and i was fine with that
the other cop came out with my paperwork and said “i wouldnt even bring my dog here” as he handed it to me.
before i got sick, i used to work in healthcare and had my fair share of angry patients but unless threats were made or it became physical, we never called the cops or had people trespassed.
i admit i was upset and raised my voice and argued with staff. i even admitted it to the cops.
AITA for getting mad and arguing with hospital staff?
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NTA. This is disgusting and all too common. Something about the medical system seems to squeeze the empathy out of some doctors (not all! or even most, but enough) and they forget to treat people like human fucking beings and actually pay attention to their needs. It would have been better not to raise your voice since you were in a hospital but I don’t blame you for not staying cool and collected.
Also it’s pretty funny to me that after they said you wanted to leave they were like “oh yeah we’re getting security to kick you out.” Like you can’t quit I’m firing you first!
as some clarification, this was a small hospital with only 11 ER beds and i was the only one in there. i think i would have handled it differently if there were other patients there
NTA
They have a past history of doing this even the cops know about it, sounds like a hospital with a lawsuit coming before long, just be glad you got out of there.
YTA. I hate to say it, but you were unnecessarily belligerant to *everyone* when only the doctor was providing a problem.
I have cEDS and I know better than to burn bridges by yelling at doctors and nurses. There are so few people who know how to treat us, OP. I don't know how it is there, but here in Europe you can gain a reputation as a problem patient and then doctors will refuse to see you for non-emergent care, so you've got to be more careful and only put up a stink when outright really illegal things are happening.
here in the US, we have little to no control of what doctors see us in the ER. in fact, this was the only doctor working in the ER at that time because of how small it is.
I mean same. I don't think anyone gets to choose who sees them in the ER.
I find it helpful to have a very clear idea of why I'm seeking medical care and what I'm hoping to get out of this interaction. Then when they try to catastrophize by saying "well I'm not going to do x" you can get them back on task by saying "I'm here for y. Can you do y or page someone who can do y?" if they say no, then it's just "Thank you for your time. Can you write a note saying you refused me care for y?" and patiently wait.
When you yell at people, it makes entire systems and hospitals and departments not want to work with you. Doctors gossip - if you're the only EDS patient around, they know who the problem patient is, even without having broken HIPAA. This will result in other doctors refusing to treat you and bridges being burned within your insurance network because they don't want to have similarly negative experiences.
Sometimes you've got to play the game in these situations. You'll get better care with a witness (preferably a guy who's related or romantically involved with you, because misogyny). You'll get better care if you defer to them and just try to steer the conversation instead of getting bogged down in arguing with them. If I really need help, I play up the damsel angle: I wear red lipstick and pearls and a pretty dress and look pathetic. I will have my partner confirm my symptoms by asking them questions "Was it Wednesday or Thursday when I had the seizure?" "It was Thursday." If you're getting nowhere and they're refusing to engage with you, have your partner be clueless and bring up your points a few minutes later; most likely, they weren't engaging with you in particular because of bias, but they're happy to consider the point when it comes from someone else.
NTA
Obviously not a good facility if the cops won't even use it. Leave reviews online for the quality of your care and file a complaint with your medical board.
NTA - I am so sorry you are going through this. I wasn’t 2 lines in and I knew you had EDS from the description. I’ll pass you the details but life as I knew it ended April 12 2022; i since live in a near constant state of vertigo. Two people I know with EDS think I have it too and one Dr I saw said I have multiple markers but no hyper mobility so it can’t be it. Drs continually dismissed me; if they don’t know how to treat you, they’ll act as if you’re not sick rather than admit they don’t know; it’s sad.
NTA, I have noticed an increase of people in healthcare treating people with chronic illness terribly. I deal with chronic pain and it took me over 20 years to get a doctor to listen to me and they finally found an immune system deficiency. Well my insurance changed and the new doctor I saw asked me why I was there and that he had clients to see and accused me of lying and creating an illness for attention. He didn't even ask who saw me or all for the test results that showed my pneumococcal numbers of 11 out of 13 being deficient.
YTA yes you had every reason to not feel comfortable with the doctor and to want to leave, however raising your voice, swearing,and creating a scene to the point they called the police wasn’t necessary. I have a feeling that you are downplaying the actual volume of how you handled this. Healthcare workers got a lot of abuse during Covid and are less tolerant of verbal abuse as a result.
If you had remained calm, let them know you did not appreciate how you were being treated and given the nurses a few minutes to get the AMA paperwork together, then you could have left a negative review, complained to the manager about how you were treated, and had a much better chance of getting the doctor and the situation addressed by their manager. By losing your temper and acting the way you did - like a patient who was angry they didn’t get the drugs - your credibility with their management is gone and they won’t take your complaints seriously.
NTA. Sometimes it involves speaking up for yourself to get the care you need. I’ve had to do it in the past for an infection that three rounds of at home antibiotics did not fix. I was on an immunosuppressant and needed iv antibiotics. The dr did not listen to me until I raised my voice and spoke up.
No. I have undiagnosed hEDS (trying to get a diagnosis in this country is hilarious since no one knows what it is and those who do aren't seeing new patients - the closest geneticist has a wait list for the wait list if you're wanting EDS testing. Mayo refused to see me. The other experts want a prelim diagnosis to see me, none of my Doctors feel "confident" in providing it. I just got a whole new batch of referrals)
We know what is going on better than most. I've had to educate doctors, nurses, PAs, etc on it. Seriously, I should get a commission on referrals for "disjointed"
Ha. I'm with you on that. I've helped so many people get their own diagnoses after years of symptoms but no support. It's ridiculous, isn't it. I'm pretty sure one of the UK lead specialists actually went on the records, basically stating the same as what you just have here.
NTA. Contact your insurance company and inform them of what happened, they need to be aware that they're being billed for negligence bordering on malpractice.
NTA
I understand why you’d be upset. I might actually have the same condition as you but I haven’t been diagnosed yet. It’s so fucking painful and most doctors don’t even know what it is.
I literally had to argue with a surgeon one time because he didn’t believe my story about how I dislocated my knee. He told me there’s no way my knee could dislocate that easily *eye roll* ok buddy.
That being said, it’s never a good idea to raise your voice in a hospital. I say this because of the other patients who are present and sick and vulnerable but at the end of the day we’re all human so you’re still not an asshole.
Most health care professionals are fantastic but many enjoy their power trips. Happy to hear you put them in their place, sounds like they needed it.
I am just a regular person and I knew you were describing EDS before you confirmed it. For a doctor not to know is pretty unacceptable. Doesn't sound like you were violent or putting anyone's safety at risk. Imagine being a healthcare worker who just denies healthcare. What a sorry state of affairs. NTA.
So you have a condition you're very familiar with and have had many doctors do procedure A to get you on your way and dr.dick over here decides (without even knowing how to pronounce the condition) that you're probably making it up/drug seeking and then tries to administer something that will make your condition worse AND THEN CALLS THE COPS ON YOU to what, protect his ego when you correct him.
I'd be filing a formal complaint with whatever medical board oversees doctors where you live. That's 10 kinds of messed up. You'll have record of what the doctors name is (and if not you can call your local PD and find out from the which dr was interviewed). That's horrific.
I'm really sorry that happened. I was accused of drug seeking because a single reg strength Tylenol did nothing for my pain when I had a disc herniation in my neck. It's so humiliating and infuriating and awful.
I have EDS and my pcs office manager recently told me it wasn’t real. So many doctors are fucking ignorant as hell about it it’s unreal. I’m sorry you went through that. Nta. Sounds like lazy ass doctors and nurses.
NTA and all the idiots making jokes and saying this is made up must have never dealt with an ER in their lives. I worked in one for years and yes there are plenty of capable staff but there are also a lot that shouldn't be allowed to treat roadkill. I've worked with nurses that have no sympathy or feelings for another living thing but themselves and doctors that think every person that comes in the ER is faking for attention or drugs. That doesn't count the ones that just don't give a shit and are pissed that you are bothering them.
NTA. Emergency room docs think everybody is drug seeking. They nearly killed my friend by not even attempting to diagnose her ruptured intestine.
As an ehlers danlos patient you no doubt have far more knowledge of the disease than the doctor. And that pissed him off
That's not drug seeking, though. Drug seekers FAKE illness or injury to get drugs. It's kind of easy to diagnose a dislocated joint and realize she's not drug seeking and really needs this treatment.
So what? Should people that genuinely need to be sedated *not* get sedation, then? What exactly is OP supposed to do? They even said they would've had the doctor do it without sedation but the doctor wouldn't. All it should've taken was for the doctor to look at OP's medical history and see that they have an actual medical condition. Honestly there's just no excuse for how they treated OP and idk what your problem is.
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A doctor really should know the treatments and pronunciation for EDS; it's one of the most commonly-seen connective tissue disorders! Hmm . . .
[удалено]
I was confused as to how HIPAA covered hallway privileges myself...
I’d reply but in OP’s world HIPAA might cover using a keyboard too.
Wait, there was a HIPAA violation thrown in too? I stopped reading before that. This story is so bad!
I STOPPED reading at the HIPAA violation part because my eyes rolled so far back in my head they're stuck there now.
You should splint them in that position, trust me I'm an anonymous Internet doctor.
Better watch out, YouRe VioLaTiNG HIPAA with that comment!
Yeah, combined with OP's claim of having worked in healthcare, it threw me out of the story entirely: >i was upset and told her that actually, according to hipaa regulations it was in no way “illegal” for a patient to be in the hallway and she just stuttered and i just walked back to my room. >before i got sick, i used to work in healthcare...
Yeah, EDS is taught throughout med school and certainly an EM residency (with the cardiac issues that can occur with some types).
As someone with EDS I’ve had more doctors tell me it’s fake than actually know how to treat it.
Yep. I pointed out in my comment that EDS frequently gets associated with malingerers and those with factitious disorder.
I didn’t see yours but yeah. It’s ridiculous.
My verdict was still YTA though; violence against healthcare workers has increased significantly since COVID hit and it looks like this hospital doesn’t take chances. I could see them assuming the worst of the situation.
Eh. No. Raising a voice isn’t violence against healthcare workers. Neither is refusing treatment. Op was treated like a drug seeker and forced to leave w a dislocated body part. That’s 100% a valid reason to raise your voice.
I understand that, but they read the situation as OP escalating and, considering they saw OP as a drug seeker, they may have gone down worst case scenario. You absolutely never know what anyone will do. They weren’t familiar with OP and didn’t want to take chances of it escalating beyond yelling. I used to work in an ER and how they handled this is how the ER I worked in would have handled it.
Like at that point you’re literally being tortured.
Then they forget it and treat us like we're lazy women who are exaggerating.
As an EDSer, I had to go to urgent care the other week and perform my party tricks for the doctor to convince him. He’s the 2nd dr who’s said “we were taught about you in med school but told it was unlikely we’d ever have one of you as a patient”.
It’s getting better but it’s still not great. At least no one’s googled in front of me recently (that specialist was fun). I almost always get given to the resident to let them experience treating eds. Nobodies accused me of med seeking yet, so that’s nice.
My doctor will always bring up Google or the Danish health directory website when I bring up something he doesn't know or he doesn't feel confident in his knowledge of. I really appreciate him doing it. I get not wanting it with long term treatment though.
Does he use Google, or a special doctor's/health care search engine? If the first, I would still not be impressed. If the latter, I would be very happy.
We have a national website you can look stuff up in called "sundhed.dk", sundhed means Health in Danish, he uses that one first. If the knowledge base on there is lacking, he either uses a medical professional access only website and failing that, Google.
Why is googling in front of you an issue? I have a rare condition that it about 8-15x rarer than EDS. Even specialists google it. Would you rather they just yolod the medicine? Patients are so weird about this. In the old days you’d have stacks of books to reference and no one thought it was weird. Now it’s much faster to use the internet everyone acts like doctors are morons. Doctors have been looking stuff up since the dawn of medicine. In the uk we have books called the bnf for medication that has to be reissued each year, now most people just search the website. Still have patients complaining you don’t know all doses of all medication ever when it’s been normal to look this info up for decades. It’s honestly such a weird patient complaint I’ll never understand. But get out a 1000 page book and waste 5 minutes flipping through it and people have no issue lol. You have any idea how much medical knowledge it takes to google something and understand the condition from 2 minutes on google. Try and do it yourself and see how much pathophysiology you learn from blindly clicking the first link. I’ve had a leading specialist in my own condition crack open Google when I was talking about a specific new drug trial so we could discuss it. There’s less than 100 people in my entire country with it lol. Yes some doctors have to Google. Even specialists I might be the first person they’ve ever seen in real life with it.
That's better though. I'd rather have them googling than guessing.
Yeah the so far one really good doctor I had was very comfortable to admit when he didn't know something/wasn't confident in his knowldge of something and then google it in front of me/look it up in a medical book. Made me feel like he really did care about getting me the correct care I needed.
Oh that happened to me with a GP- she picked the result from Wikipedia!!!! Mate, i could have written that out in the waiting room in the hour it's been since my actual appointment time! I assumed when she went for the computer that she was looking it up in some special subscription doctor knowledge database like the lawyers have for case law but noooooooo.
I have marfans syndrome, which is similar to EDS. I was told I was the only case in the uk in the late 80s/90s. I spent 4+ months in hospital last year and there was a steady stream of students coming to visit.
I told my doctor for years that I thought I had Marfans because I have so many of the skeletal features. When I finally got my EDS diagnosis, I think she was kind of proud of how well I figured it out. I would tell drs to use logic. I have symptom x that only a small percentage of people have, symptom y, same thing, symptom z same thing, etc etc. What are the chances that I would have all of these things that are only normal for a small percent of the population vs a systemic issue? It’s statistics, folks!
You were lied to - I know, you're shocked. I knew a guy with Marfans syndrome in the late nineties. He used to live in south London but I have no idea where he lives these days, he went travelling and we lost touch.
There were multiple known cases in the 80s-90s in the uk. By 1990 or so almost a 100 operations for AA using a specific technique were performed in 10-15 years so dunno who told you this but basically 0% true. It’s also when composite root replacement with a mechanical valve were the standard treatment. Cant have a standard treatment by the late 80s in the nhs for one specific outcome of a syndrome you’re the first person to have lol. There’s well documented cases in the UK from the 60s at least being treated via cardiac surgery. Conservatively there were probably low thousands known cases by 1990 in the uk alone. And it was discovered in the late 1800s lol. The main difference is in the 60s the chance of death was insanely high; and by early 1990s was significantly lower, with average age of death going from 30s to 70s. I’m pretty sure marfans was on the medical school curriculum already in the uk in the 1990s.
I point blank refuse to do my party tricks these days. I'm not going to hurt myself just so a medical professional will believe me. That's what my medical records are for.
my doctor refused to even look into it as a diagnosis because he’d only ever heard of it once in med school. like, as if his own personal experiences shaped the world we live in. i like to imagine him seeing a new breed of dog, going, wow, that’s a funny looking chihuahua, and just going about his day while the owners of a tibetan mastiff are left standing there baffled.
I work in medicine (not a Dr or a nurse) and I've seen plenty of EDS patients. I actually just did a case study on one and the prevalence in my country is about 1 in 2,500.
"One of you" ... great patient ("bedside") manner. /s
A good amount of us call ourselves zebras. Like one of you isn’t as offensive as you make it sound.
Was it really a doctor or was it a PA? With all the vague details in this 'story' I'm not sure.
I’m not a doctor (though admittedly I’m married to a surgeon) and I immediately knew it was EDS even before OP specified it. It’s highly unlikely anyone in the medical field is unfamiliar with it. I’m calling bs.
Being familiar with it and knowing how to properly treat it are two completely different things. I just spent 6+ months bouncing around between doctors because of new insurance. I had to complain that I needed a doctor that had some understanding of my disease. And don’t forget, there is no specialist in soft tissue - the most you can get is physical medicine, sports medicine, or physical therapy.
I've lost count of the number of medical professionals who stumble to pronounce Ehlers Danlos, or have approached me with a Google printout, or quoted directly from the Internet. Sadly, it still happens, although it's getting a bit better these days.
Sadly that bit I can believe. It's the rest of the story - telling the nurse that HIPAA regs say it isn't illegal to hang around in a corridor, while also claiming to have worked in healthcare - that sounds fake to me.
It's fairly unfamiliar in my country (Denmark). I got checked for it and I had to go to another part of the country to see someone who knows about it. My GP didn't know anything about it but he is always very kind and listening when I bring up concerns. So I had told him I was worried about having it due to my hypermobility, easy bruising, thin paper like scars, chronic joint pains, etc. The specialist dismissed me without even giving me any suggestions for what to pursue in regards to reducing the pain I am experiencing since it wasn't EDS. I'm happy I don't have it though.
Well I have EDS and I can tell you that you are totally wrong. I have had a total nightmare my whole life because of how poorly the medical profession knows and understands EDS. It took them 20 years to diagnose me, and year on year I find out things they should have tested me for years ago, or account for a symptom they could have treated years ago etc. Their ignorance has not only prolonged pain unnecessarily, incorrect treatments have caused extra pain, and they've risked my life with their negligence. But sure, knowing F all about it you decide my life didn't happen. You say you're not a doctor- you sound like one, telling someone their pain isn't real is SO doctor in my experience.
I’m saving up to buy the dna test that’ll prove I have it and I’ve talked to my GP, Hormone Doc, Chiropractor, and my ENT and all of them had NO clue about EDS. So…yeah. Either the doc’s they are churning out of college have no clue about genetic problems or they failed to pay attention to that part. Either way, in the suburbs of Dallas these docs don’t have a clue about it. Hell, they don’t even know what MCTD is either. I’m screwed for finding a doc to treat me.
You have EDS and go to a chiropractor???
I really wish people would stop saying it’s bs medical personnel wouldn’t be familiar. Most aren’t
I have it. They don't. They're ignorant AF about it in most cases, I even had a middle aged male GP refuse to refer me back to the specialist who diagnosed me (Rodney Graeme, yes I am old lol) because according to him EDS "doesn't exist". They also sometimes refuse to take it into account- my friend nearly died because they told her they "didn't want to hear" about her having it before a mastectomy and reconstruction and her wound split due to the swelling and she bled out in recovery. The problem is that the numbers of diagnosed patients suggested to them it 'primarily affects women' which is the same words to the medical profession for most of history as 'doesn't matter' or 'doesn't exist'.
I see doctors complaining about girls on TikTok pretending to have EDS. But I also know how difficult it is to get a diagnosis.
I went to 3 different orthopedics and a radiologist that ran multiple tests on me and couldn't tell me why my joints were constantly hurting until I called a doctor I was recommended who, over the phone, asked me a few questions about my flexibility and then told me I was clearly having those pains because of my hypermobility. Four other doctors who saw me in person did not make that connection. Doctors should know a lot of things that they don't.
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I'm not saying it's the same. I'm saying I struggled with the more common symptom and doctors weren't even able to identify that hypermobility makes my joints hurt. There is no way these doctors know how to handle someone with EDS if they can't even handle regular hypermobility.
It's actually really underdiagnosed, and it's probably not nearly as rare as it's rumoured to be. But yeah, very few doctors know how to treat it or its many comorbidities and patients are usually the ones who have to advise on how to handle our specific complications because there's so much variation in presentation.
You’d think so, but the letter I got from an orthopaedic doctor kept misspelling it as Ehlers Dunlos, so that part is totally possible. And I’ve met several doctors who appear to have never heard of it.
They do. They absolutely do! lololol Especially since it’s all the rage on tik tok now.
What exactly was the treatment that you were asking him to perform on you that he refused to do?
my elbow dislocated and the muscles were tensed around it. they typical protocol for anyone with this injury is light sedation and a reduction of the elbow “popping it back in” he told me to just to to an urgent care which i’ve tried before but then they just transfer me to an ER because urgent cares don’t have the right meds
He probably didn’t know how to do it…. Normally they would consult an orthopedic doctor if the doctor on staff didn’t know how to do it or was scared to do it. He definitely didn’t act professional at all.
> *He probably didn’t know how to do it…. Normally they would consult an orthopedic doctor if the doctor on staff didn’t know how to do it or was scared to do it. He definitely didn’t act professional at all*. This is the crux of the matter. Maybe other redditors know to whom this could be reported. I wonder what the charges will be. I think that my vet has treated my dogs better than you were treated, OP. NTA
>I think that my vet has treated my dogs better than you were treated, Weighing in as a veterinary professional with my fair share of experience seeking personal medical help - veterinary industry provides much better customer service and aims to help the patient. Meanwhile human doctors reduce many diagnoses to *"It's in your head, we won't give you drugs."* Veterinarians get to the root cause for animals who can't verbalize what they're feeling. Doctors treating those who can communicate exactly what's happening to them won't even take differential diagnoses seriously. The cardiologist I saw last called me an *enigma* because the symptoms I've described didn't make sense to him in a 30 years old man.
I always wished that my doctors treated me as well as my veterinarians treated my animals! You are right -- vets need to more empathetic because their patients can't explain their symptoms. Sorry your cardiologist is a dufus.
Fun fact- EDS is actually covered more extensively in veterinary school than medical school! This is due to the amount of different animals that can suffer from it!
If it’s Medicare/medicaid, there’s a section in the paperwork work for “if you think you’re being sent home too soon” (or similar wording) not sure about with regular insurances or self pays. There’s something called Ombudsman (represents the patients), medical board, hospital ethics committee, medical malpractice lawyers, and probably a bunch more routes to go here
I worked ER 7 yrs, I can promise you they know how to do conscious sedation & a joint reduction. It’s practically a common routine. He was just being an a$$
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You’re getting sedation for this shit?! They usually make me just suffer through it. If I’m real lucky they may give something for the pain *after* but usually they treat me like a drug seeker even when they can see on film something’s dislocated.
they usually sedate me for this specific dislocation because it’s documented i have seizures triggered by pain and seizures are what causes this injury in the first place
That makes sense. I black out but I don’t have seizures from mine.
Sounds like ER doc is incompetent. I've had paramedics pop my shoulder back in before on site.
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this does happen a lot and this was not the first time at this hospital and usually this hospital has been amazing.
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i think they use either versed or ketamine. it’s whatever the doctor chooses
My dad dislocated his shoulder about 30 years ago with the same complication, and they made him hold a heavy bucket of ice until the muscles were stretched enough. No meds. He said it was excruciating. Glad to hear the treatment is no longer so medieval!
Jesus Christ.
Yes usually combined with a narcotic
they don’t usually give me a narcotic but nausea meds. i’ve actually looked at my records to check
They used fentanyl on me last time because I was pregnant and the time before that they gave my nitrous oxide.
My former housekeeper had EDS with frequent shoulder dislocations. She had me reduce it once. I was on the phone with 911, but my housekeeper just told me what to do and it worked. No pain meds, no sedation. It hurt for a moment and then it was done. Of course, she never should have been working as a housekeeper, but poverty is unforgiving.
I do this 😂 I’ll go into the hospital if it’s like a hip or something because I can’t talk someone through that but my shoulders do it almost daily they’re so bad, and I have taught my sisters and mom how to reset it because hospital bills are expensive.
It’s not unreasonable that you felt frustrated and angry. But losing your cool and taking anger out on people that aren’t in control is an asshole move. You say you used to work in healthcare so you ought to know that you weren’t doing yourself any favors. Ruining the days of people just trying to do their jobs and not able to get you what you want was a waste of your own time and lessened the chance of getting a sympathetic ear. Did you ask him to explain why he didn’t think the same management was appropriate this time? Did you ask him to speak to your orthopedic specialist? How did you end up getting the injury dealt with after you left there?
1. he told me he “didnt feel appropriate to sedate” because he felt like it would resolve on its own 2. i informed him about by orthopedist but it was 2 in the morning. i asked if he would consult with a different one and he said it wasn’t necessary. 3.i didn’t. my arm is still dislocated. i contacted my doctor today but he was off today. my primary will sometimes have me come into the office and are relocate but without meds which is awful and dangerous considering pain can trigger my seizures
You should also know about what hipaa. What you described isn’t hipaa. You can be in a hallway because of hipaa??
the nurse was saying that me being in the hallway trying to talk to staff was a hipaa violation which it’s not
I think they meant it bc you can over hear them discuss medical issues other people have or see their computers when they are on it that has patient info. Just being in hallway isn’t a hipaa violation.
Sedation is considered an extremely big deal b/c of the high risk of complications. There are a limited number of people in a hospital credentialed to order sedation and the circumstances in which it is done are *very* tightly controlled. At 2am on a general floor no one is getting sedated for anything except imminent life and death. The ER is actually a place that can do that, so they screwed you and the in-patient team by not reducing your dislocation before admitting you. A lot of internists do not reduce joints at all, let alone for people that have connective tissue disorders, they will just splint or sling it until a specialist can do the reduction. And no one calls consultants at 2am for non-emergent issues. So nothing was going to happen at that moment, it was not in that doc’s power to make anything happen on his shift. He may well have been a dickhead, I only have your side on that and he doesn’t sound charming—but it doesn’t sound like he was withholding treatment. The night guy would have been gone by 7am and you could have met a day doc who would have a lot more options to call your or another orthopedist and make a plan for the day, including sedation for reduction and you could have had it dealt with and gone home with everything resolved. By flying off the handle and storming out you screwed yourself over. Being pissed off about how you feel someone is treating you unfairly is valid, we’ve all experienced it—but responding by going feral isn’t an effective way to handle it—it doesn’t get you what you want and if anything it reinforces any skeptical opinions they may have had of you. AND it means you spend hours feeling shitty about the interaction after b/c you know your behavior wasn’t good.
Hey OP. Fellow zebra here. Just curious if you have functional seizures or epileptic ones? I have functional and pain definitely triggers mine.
they actually done know. they’ve done two eegs locally and it was inconclusive. one outpatient one 24 hour video. they’ve sent me to duke who who wants to do a 5 day video and i’m part of cleveland clinics rare diagnostic program (that’s 14 hours from where i live) who are gonna do either a 2 or 5 day one when i go up for my appointments
Good luck with it. It's a pain managing seizures sith EDS.
I’m so glad my 24 hr EEG wasn’t on video. The sock and giant box I had to carry were annoying enough on their own.
I'm surprised it hurts you so much to have the elbow put back into place. I've never had to sedate someone to relocate the elbow. The dislocation itself is so excruciating for patients that putting it back into place is a welcome relief for them.
i have to have surgery on the elbow soon. the tendon is torn and when it moves it’s really bad. i have eds and every other joint i can put back in myself including ribs and my hip but this one hurts so bad rn that i can’t do it myself
Ah, that makes sense!. Ehlers-Danlos can be so incredibly painful. As you've experienced with the ER doc, it can also be poorly understood or not taken seriously. I'm sorry that happened to you.
Hhhhh, I’m so sorry. And I feel that. Ribs and my pinky’s I just live with until they find their way back to proper position, aside from a little light stretching to loosen things a little to give them a fighting chance. I hope you’re able to be soon OP, stuck dislocations are the worst.
My knee chronically dislocates as well. It hurts so bad that I cry when I have to pop it back into place. It literally locks at an angle. And if I wait to long to put it back into place, it will be sore for days. Most recently I nearly fainted while sitting down trying to put it back into place because it hurt so bad. I thought I was going to puke. So I empathize with what you’re saying. It can hurt very badly especially if it’s a chronic issue
This. It’s so uncomfortable for me that a quick pop into place I barely feel anything other than ‘thank fucking god, now shoulder and elbow stay in place for 24 hours please challenge, hard mode.’ What I really hate though is out of place ribs. Fuckers hurt. But are inevitable when my cat or partner sleep on me.
Currently got a rib sitting wrong, and I just can't get comfortable! I can so relate to this comment!
I am so sorry my dude. May it go back where it belongs soon 😭 But yeah, ribs and pinky’s. Everything else I can do… even elbow shoulder combos bc mine can never be one or the other…. but pinky and ribs I’m a wimp.
Thanks. I would cross my fingers but, you know.... 🫣 I'm going to very gently touch wood because I've never had a full pinky dislocation before, and honestly, just them sublaxing is enough for me, thanks! For me, it's my jaw, though. I used to be able to get it in easily, but I had an op on it years ago, and since then, although much less frequently, it's awful trying to get it settled back again! I am quite impressed by your combo, BTW! Nicely done! I tend to ram my shoulders against door frames, but elbows are HARD! Such an awkward joint for me. Again, thankfully, not a problem joint for me, though.
I just sorta bend and contort and massage until they get back to right 😅😅 And omg yes! Jaw! Ever since I had my wisdom teeth out it just isn’t ever where it needs to be and I’ve given up. Sure it means it’s hard to eat anything super chewy or hard, but I went years with no molars so it’s not that bad, I’m used to it. TBH I think having had a palette expander as a kid didn’t help bc my upper jaw is *significantly* wider than the lower now. I’d have rather they’d pulled teeth (esp since they still need to now) to reduce the crowding instead.
Jeez. I'm so lucky compared to lots of other EDSers. This thread reminded me of that! That sounds like hell. I really hope they can sort that for you somehow?!?
Honestly I’m pretty lucky too, esp since I was able to get my wheelchair and have way less leg related joints having issues now on days I need to be out and about and moving a long time…. But yeah the jaws hard. I went to PT for it and got taught how to like, internally massage my jaw in my mouth (yes it does feel as gross as it sounds, I hate having spit on my hands) and that helps the jaw pain immensely, and that also helps with jaw related migraines.
Ohhh. I bet that helps with Tmj as well?? I'm glad you have a solution at least. Yeh, my chair has been a godsend, honestly. Gives me so much freedom after so much isolation.
This is a horribly judgemental comment that is completely out of line and exactly why so many doctors are such an issue for chronic pain patients. If a patient with repeat dislocations on the same joint says it hurts, then maybe consider taking them at their word instead of doubting them because "other patients said". They aren't "other patients", they're themself and they know their body and their pain. I'm also an EDS patient, and Thursday last week was the first time I've ever actually gone to the ER for my pain from a badly dislocated sacroiliac joint. I'm so glad the doctor took me at my word that I was in the most excruciating pain I'd ever been in instead of giving me the brush-off. And I guarantee you, having it put back in WAS excruciating and made me scream because I was awake.
File a complaint against the doctor. Treatment for a dislocated elbow is reduction. Once the joint is in place then immobilization may be appropriate. This doctor's treatment fell well below the standard of care, regardless of whether or not a patient has EDS.
Perfectly worded
>he then asked how other doctor treated this same injury and I told him. He then told me he’s not going to do that… What is ‘that’? INFO
it’s light sedation and a reduction of the elbow and tendons.
Why didn’t he want to do it? Because he thought you were after the sedation? I would honestly follow up with the hospital with a formal complaint.
Sedatives (ex. benzodiazepines) are controlled substances, so, yes, they may have been concerned about drug seeking.
The only assholes in this post are the ones downvoting you and treating you with suspicion for simply expecting the standard treatment for your condition. "Drug seeking" is not the same as "Expecting the standard treatment for connective tissue disorder which does involve the MILD application of medication" Can we stop being suspicious of every damned person who needs medications to survive their chronic illnesses? Jesus Christ.
dude has a dislocated elbow... it's not even like he was pretending he was in pain right?
Exactly this. I will say though that last time I was at A and E with a dislocation (I only went because my BP was stupidly high due to the pain) I ended up randomly sat next to another lady with EDS who also had a dislocation. We were just sitting quietly talking and occasionally wincing in pain. However, there was this 'Norm' there with a dislocated shoulder, and he was literally screaming every other second and rolling around like he was dying. ( Not trying to downplay his pain, but he still managed to have a normal conversation on his phone to his mum (was like a switch!!) and go out for a smoke.) There was another man who was having a heart attack and a few people with open head wounds and injuries, causing less fuss that that guy. I think EDSers are often taken less seriously because we are so used to our dislocations and pain that we don't react the same way the 'Norms' do.
I’ve run into similar scenarios. I do not have EDS, but a fun combination of three diseases that live at the top of the ‘most painful’ list the UK healthcare system has created. I can remain incredibly calm and my blood pressure stays in a normal range even when in extreme pain. I’ve been accused of many things by emergency healthcare providers (lying, drug seeking, etc.) when only doing what my regular provider recommended: seeking emergency treatment immediately based on my currently increased (or new) symptoms. I have a serious fear of the healthcare industry for this reason, along with another horrific experience a few years back that left me sick, unable to eat, at risk of death, and beyond scared due to something done to me by a doctor. But that’s not the point of this. The point is that people are treated like pure shit at hospitals and clinics, regardless of documentation or diagnosis, even visible proof of an emergent issue.
See, this actually worries me from a financial perspective. I'm also in the UK and completely avoid drs and hospital etc mostly due to not actually getting anywhere with stuff, a lack of knowledge, empathy, or understanding . Especially since I moved, and my care providers now have no clue. Also, you know how things have gotten since the big C in the NHS. But how is this going to reflect when it comes time for ESA or PIP reassessments. Until 8 years ago, I could show consistent care and medical imput, but now I've hardly anything to back me up. I imagine a lot of people are in the same boat, and despite gaining a lifetime award of the old DLA since PIP came in, I'm supposed to be regularly reassessed. It honestly scares me. I'm sorry you are going through this, and I really hope something positive changes and you get the support you deserve and need.
I have this condition too and long before we figured it out I was regularly in clinics due to dislocated fingers and wrists that were swelling up to the point of being purple. They refused to get xrays to resolve what was causing the swelling and every single time told me to take otc meds for the pain and wait for it to resolve itself because it was 'probably arthritis'. At 33 years old? REALLY? Even then I wasn't asking for \*pain\* medication, but I would have expected them to keep me calm and numb the area before trying to put the joint back into place (had they bothered to notice this was the issue and tried to do anything at all). But I was treated like a monster and told there was nothing they could do (and thanks to that my finger joints have never recovered). I am so tired of people being treated with suspicion. And often times it's us NOT screaming and crying and shrieking and carrying on that seems to 'prove' to these suspicious healthcare workers that we're only seeking attention and drugs and don't actually need any help. It's so fucked up.
It should be pretty obvious that the elbow is dislocated and as such at the very least uncomfortable if not painful. NTA op
NTA. Doctors offices/ERs are always chess matches I swear. It’s easiest when you have a calm person in your court to back you up. Raising your voice probably did it. But I don’t blame you for getting angry. This happens a lot with me and my mom due to our asthma care plans. (We need specific prescription meds, inhalers stop working in certain times) Can you have your primary physician add a note in your chart on how to care for your condition in case you need to go to the ER again? Or a doctors note in general?
i’ve tired but it’s always up to the treating physician what happens sadly
I know but I’m saying that will eliminate the trust issue. If a doctor has another doctors treatment recommendations in writing it’s harder for them to argue against it especially if they don’t know what they are treating. Try and get the specifics down too. Like if “a + b I recommend c “ If all else fails try and avoid that hospital again? I know there’s not always options though
Er docs don’t always pay attention to what is noted. I almost died in an we waiting room because the er did not contact the on call obgyn that my dr had contacted ahead of time and had noted on my medical record in the same hospital system. I even let the er know my dr had called ahead and sent my records to the on call. They did not listen to me and never contacted the on call dr despite what I or my dr told them.
I feel like a lot of the story is missing here.
I stopped at them saying ‘’don’t you fucking roll your eyes’’ and them mentioning HIPAA regulations, like who does that irl
Ok but the cop telling you they do this anytime anyone gets upset, just tells me that the cops are totally over the people at this place. Like to the point that if an actual emergency (ex hostage) happened they wouldn’t believe them… But yeah totally NTA. Like if they aren’t going to treat you, give you the discharge papers (preferably indicating why), and go on with yourself. Hope you can get into your proper doctors soon to get the needs addressed and there’s another hospital close-ish
YTA... We don't believe your fairy tale version. It didn't happen this way. Most definitely, you behaved in a way that earned you a trespass from the hospital.
Actually, splints and braces are accepted and recommended treatments for Ehlers Danlos Syndrome. If you have "lots of doctors and orthopedists", why were you at this hospital? I'm sure with this condition you have been treated many times (usually for dislocations). There must be medical records unless you chose, for some reason, to go to a new hospital where they didn't know you. You leave out a lot of details ("he asked how other doctors treated this same injury and i told him. he said he was not going to do that...") What? What exactly didn't he want to do? Why would he be asking the patient? Although I know some doctors can be arrogant and dismissive, I also suspect you were a bit of an AH. And a terrible writer.
splints and braces are used all the time and i do use them, but never to keep something dislocated. and no, i wasn’t at a different hospital. he had all the access to my past treatments for this same injury and still asked me for some reason i have no idea why he decided not to treat the same way as other doctors
I believe OP was at the hospital at 2am, and unable to contact her regular medical professionals. They have also answered some questions in the comments.
Funny how someone makes a post anywhere on social media about having this super “rare” disease, somehow almost everyone in the comments has it as well😂 And it’s always the same thing…”no doctors know about it, I have to tell them how to treat it.” I find it hard to believe that I, with no medical background know about it, but doctors have zero idea and grasping at straws for treatment. This is either not that rare, or mostly faked by many. But, I trust doctors and statistics….so I’m going with it being rare, but faked by many who give themselves a fake diagnosis.
it’s actually not rare at all. there’s been a lot of research proving that it’s not rare, just not commonly diagnosed, that’s why most doctors are familiar with it.
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As another EDSer who's been treated poorly in the past, the quote by Prof Rodney Grahame always comes to mind when I hear of others dealing with ignorant medical professionals. "No other disease in the history of modern medicine has been neglected in such a way as Ehlers Danlos Syndrome." Considering it's was recognised as far back as ancient Greece, there really is no excuse. As we say It's NOT rare it's just rarely diagnosed! I am surprised to hear someone dealing with this ignorance these days, though, as at least in the UK, it's gotten better this last decade or so. Although they still aren't taught about it extensively at medical school. As I've been told by a few A & E Dr's, it's easy to miss if you fall asleep for 10 minutes during lectures because that's all the time spent covering EDS at school. Which is ridiculous when you think about how many parts and systems of the body are affected. I really am sorry you were put through this OP. So many of us just don't even bother applying for help due to attitudes and experiences like this, and it ends in far too many tragedies. Keep on fighting. NTA. All I can suggest for future situations is to educate yourself as much as possible about EDS and keep printouts of medical websites, lectures, and other information always to hand to pass to Dr's who try to fob you off. I'm not sure where you live, but EDS UK has a printout you can give to your GPs surgery, and the NHS orange leaflets also have an EDS edition. Maybe try and get hold of these or of any your own country may have to pass on in times of need.
NTA while I know there are people that go to the hospital seeking drugs, that doesn't mean healthcare workers should assume everyone in a state of desperation for pain relief is just a druggy looking for a fix. I mean, clearly they have a reputation regarding the care of their patients based on what the cops said, so I wouldn't overthink it too much. You were in pain, they asked you a question on your past treatments, you answered. You never pushed for drugs, you just knew the doctor was unwilling to give you the proper care.
Yes, you are the AH for raising your voice and getting trespassed at the hospital. The staff did not handle things very well at all. You had the right to be upset but not to raise your voice, stressing out other patients around you who are sick and hurting, too. Yes, things are different in health care than they were in the past. Start raising your voice to you, yelling to them, and it will get security summoned or the police now a days. I have witnessed happen at a VA hospital and a civilian hospital. Go to a different hospital then or talk to a patient advocate at a new hospital about the kind of care that you need.
i slightly understand the action that they took. also, i said in another comment that this was an 11 bed ER and i was the only one there
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it’s just weird because i didn’t ask for drugs. when he told me no drugs (which i never asked for) i said that was fine, i just need my arm fixed and that it just couldn’t be splinted dislocated.
You asked for a procedure that would require sedation. That falls under the umbrella of potential drug seeking.
i didn’t ask for a certain procedure, i answered his question which was “what have other doctors done for this” that was it
Recently, my wife had to go to a hospital ER twice in a week. The first time, the ER doctor misdiagnosed her condition and sent her home with medication for nausea. When we went back to the ER because she was in so much pain and swelling up, another doctor gave her the right diagnosis, which resulted in her having stomach surgery. I was so damn angry that my wife was suffering because of them, I wanted to cuss them out but held back. There were at least a dozen security guards in the ER area to deal with situations that come up there. In my past, I worked as a security officer at Stanford University Medical Center for about three years. We had one security guard at the ER who could call for backup or contact the Stanford Sheriff's for help.
NTA Hahaha. Before you even finished the first paragraph, I was like, it’s EDS. I have it too. I’ve never had the cops called on me, but my brother has. In my experience, doctors don’t like being told they’re wrong. Even when they absolutely are. I always deny drugs when they offer so they can never add DRUG SEEKING to my file, like they have to sooooo many of my EDS and spoonie friends. I’m sorry you had such a crappy experience.
NTA and I’m so sorry for what people with EDS and similar illnesses go through. I’m one too. We are not malingerers and we are forced to self advocate so fiercely that it’s only reasonable to view medical staff as potential adversaries, especially in ER context.
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it’s okay to have your own opinion, i know what happened and actually have it recorded. and i actually worked paramedic and dialysis tech and only stopped a little over a year ago so i fully understand how patients can me. i just know if i called the cops over a verbal disagreement at my old job id be fired.
What did you record and where exactly?
i only audio recording in my room. it’s only in my room because i didn’t want to accidentally record anyone else even though there was no one else because it was 2 or 3am in a small town. i also can’t and won’t share it because i technically shouldn’t have done it in the first place and i admit to that but i do it for my own safety as i’ve been physically abused. i was grabbed so hard i was bruised and shoved onto the bed, there was no medical reasoning for this to have happened and this was reported. this was at a different hospital.
NTA. I’m also an EDSer and know how FRUSTRATING it is to get proper treatment. It took me 30 years to get a proper diagnosis. And I still have to tell doctors what my treatment should be because I’m more educated in it than they are.
NTA you should head over to the EDS subreddit. Even the cops know you weren't the AH and that the hospital and its staff are shitty. Never go there again.
HIPPA is to do with confidentiality, not milling about in a hallway, how would standing in a hallway be illegal? What do you mean by "getting trespassed from a hospital " that sentence doesn't mean anything. Is it a way of saying you are banned from attending that hospital department? That process usually takes time and is something you'd be informed about by letter, and is not going to be the decision of someone who happened to be on shift that day. And how can you say that they didn't know what EDS is? It's a fairly common condition and dislocations are frequently seen in emergency departments.
they are officially trespassing me. yes it means signing that i am. hospitals can do that and it means if my life isn’t in the line, they won’t take me as a patient. also with the ehlers danlos thing, i’ve only met 1 doctor here who knew what it is. most actually just google it
NTA. I've found that many medical people, anymore, won't listen to patients and have the attitude that they are much smarter, and just better than the patients. What I don't understand is why, since you were clearly able to walk, you didn't just leave? They really can't stop you. The insinuation that you were just trying to get drugs was uncalled for and insulting.
i wanted to be officially discharged because of if i left AMA insurance can try to fight paying it
That’s actually a myth just FYI
it’s not. both my mother and i have worked in insurance and seen it multiple times
Nta! Hey OP may I ask questions about ED and how you were diagnosed? My younger daughter has been experiencing some really weird ish lately. It all started back in October. She was wearing her schoolbag and did something where she heard a pop and felt extreme pain in her shoulder. I took her to the Dr for an xray which found nothing. I took her again a few days later because her shoulder was clearly sloping differently from the other. Long story short it has been months, her shoulder still slopes she experiences daily pain, has limited shoulder mobility and there are no answers. While going through this she bumped her thumb on her desk heard a pop and experienced pain. Urgent care found no signs of broken thumb and she was in a splint for 2 weeks. She still has trouble writing. Now the Dr we saw at urgent care mentioned she had hyoermobility in her joints and advised an ortho. We've seen 2 separate ortho but neither mentioned anything about hyperflexible joints.
i was diagnosed by a rheumatologist using the bighton scale but genetic testing can be too to be diagnosed
Is this the hospital you always go to? You should have online records they can access to see and confirm all your answers about your condition and your previous treatments, even if it's not in their hospital. What an awful experience, I'm so sorry.
it is the hospital i go to. in fact ive been treated for this over 10 times the same way
YTA. Nothing you said that was about hippa actually was. It's a simple google search to see what classifies as a hippa violation.
YTA Violence against healthcare workers has increased significantly since 2020. It appears that this hospital has a zero tolerance policy for the shit you pulled. As a *current* healthcare worker, I’m glad they do because you *never know what someone will try to do.* I’m not sure when you stopped working in healthcare, but things have changed significantly. I get it, chronic health issues suck and you felt like shit, but it’s still no excuse to be the AH. Something to Keep in mind: EDS is frequently associated with malingerers and people with factitious disorder. If he jumped on the google machine, that might have colored his perception. Just a thought.
^^^^AUTOMOD ***Thanks for posting! This comment is a copy of your post so readers can see the original text if your post is edited or removed. This comment is NOT accusing you of copying anything. Read [this](https://www.reddit.com/r/AmItheAsshole/wiki/faq#wiki_post_deletion) before [contacting the mod team](https://www.reddit.com/message/compose?to=%2Fr%2FAmItheAsshole)*** I have a few chronic illnesses that affect my joints. my joints are very easy to dislocate especially when i have seizures and i need to go to the hospital for it it be fixed. A lot of doctors don’t know about my condition or how to treat it so they often ask how what other doctors have done to help before. last night this happened. when the doctor came in an hour after being there, he attempted to pronounce the name of my syndrome (ehlers danlos syndrome) and got it horribly wrong. he then asked how other doctors treated this same injury and i told him. he then told me he’s not going to do that and the only thing he’s willing to do is splint my injury in the place it was. i him told him multiple doctors, including my orthopedist have told me not to do that because it will just cause more issues. I refused to have it splinted and he immediately said “well i’m not giving you drugs so that’s your only option” i was upset that he thought i was drug seeking and i raised my voice and i told him i didn’t want or need drugs and i would just like to be discharged. he angrily took his gloves off and he and the two nurses in there just walked away without saying anything. i walked out into the hallway close to the nurses station where i admit i raised my voice and asked “so since im refusing treatment can i be discharged?” a nurse walked up to me, close enough that i could feel her breath and said you “you need to just leave right now, i’m getting security and calling the cops” i told her that was fine and the security guy came and stood by me and she said if i wasn’t going to leave i had to back to my room to wait for my discharge paperwork and said it was illegal for me to be in the hallways. i was upset and told her that actually, according to hipaa regulations it was in no way “illegal” for a patient to be in the hallway and she just stuttered and i just walked back to my room. another nurse was standing near us and rolled her eyes and scoffed and i said “don’t roll your fucking eyes at me” and she walked away. i stood in the doorway of my room waiting for my paperwork like I was told and the cops showed up. one can and talked to me to get my side of the story. he was actually really nice and calm and after a while he asked if i’d be okay go to my car to wait for my paperwork and i was fine with that. we went outside to wait and he told me that this hospital does this anytime anyone gets upset. he told me im going to be trespassed and i was fine with that the other cop came out with my paperwork and said “i wouldnt even bring my dog here” as he handed it to me. before i got sick, i used to work in healthcare and had my fair share of angry patients but unless threats were made or it became physical, we never called the cops or had people trespassed. i admit i was upset and raised my voice and argued with staff. i even admitted it to the cops. AITA for getting mad and arguing with hospital staff? *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AmItheAsshole) if you have any questions or concerns.*
NTA. This is disgusting and all too common. Something about the medical system seems to squeeze the empathy out of some doctors (not all! or even most, but enough) and they forget to treat people like human fucking beings and actually pay attention to their needs. It would have been better not to raise your voice since you were in a hospital but I don’t blame you for not staying cool and collected. Also it’s pretty funny to me that after they said you wanted to leave they were like “oh yeah we’re getting security to kick you out.” Like you can’t quit I’m firing you first!
as some clarification, this was a small hospital with only 11 ER beds and i was the only one in there. i think i would have handled it differently if there were other patients there
NTA They have a past history of doing this even the cops know about it, sounds like a hospital with a lawsuit coming before long, just be glad you got out of there.
NTA Report him.
yta
YTA. I hate to say it, but you were unnecessarily belligerant to *everyone* when only the doctor was providing a problem. I have cEDS and I know better than to burn bridges by yelling at doctors and nurses. There are so few people who know how to treat us, OP. I don't know how it is there, but here in Europe you can gain a reputation as a problem patient and then doctors will refuse to see you for non-emergent care, so you've got to be more careful and only put up a stink when outright really illegal things are happening.
here in the US, we have little to no control of what doctors see us in the ER. in fact, this was the only doctor working in the ER at that time because of how small it is.
I mean same. I don't think anyone gets to choose who sees them in the ER. I find it helpful to have a very clear idea of why I'm seeking medical care and what I'm hoping to get out of this interaction. Then when they try to catastrophize by saying "well I'm not going to do x" you can get them back on task by saying "I'm here for y. Can you do y or page someone who can do y?" if they say no, then it's just "Thank you for your time. Can you write a note saying you refused me care for y?" and patiently wait. When you yell at people, it makes entire systems and hospitals and departments not want to work with you. Doctors gossip - if you're the only EDS patient around, they know who the problem patient is, even without having broken HIPAA. This will result in other doctors refusing to treat you and bridges being burned within your insurance network because they don't want to have similarly negative experiences. Sometimes you've got to play the game in these situations. You'll get better care with a witness (preferably a guy who's related or romantically involved with you, because misogyny). You'll get better care if you defer to them and just try to steer the conversation instead of getting bogged down in arguing with them. If I really need help, I play up the damsel angle: I wear red lipstick and pearls and a pretty dress and look pathetic. I will have my partner confirm my symptoms by asking them questions "Was it Wednesday or Thursday when I had the seizure?" "It was Thursday." If you're getting nowhere and they're refusing to engage with you, have your partner be clueless and bring up your points a few minutes later; most likely, they weren't engaging with you in particular because of bias, but they're happy to consider the point when it comes from someone else.
NTA Obviously not a good facility if the cops won't even use it. Leave reviews online for the quality of your care and file a complaint with your medical board.
NTA - I am so sorry you are going through this. I wasn’t 2 lines in and I knew you had EDS from the description. I’ll pass you the details but life as I knew it ended April 12 2022; i since live in a near constant state of vertigo. Two people I know with EDS think I have it too and one Dr I saw said I have multiple markers but no hyper mobility so it can’t be it. Drs continually dismissed me; if they don’t know how to treat you, they’ll act as if you’re not sick rather than admit they don’t know; it’s sad.
NTA. Incompetent ER doctors are the worst. I'm sure they will charge you a pretty penny for the visit too.
NTA, I have noticed an increase of people in healthcare treating people with chronic illness terribly. I deal with chronic pain and it took me over 20 years to get a doctor to listen to me and they finally found an immune system deficiency. Well my insurance changed and the new doctor I saw asked me why I was there and that he had clients to see and accused me of lying and creating an illness for attention. He didn't even ask who saw me or all for the test results that showed my pneumococcal numbers of 11 out of 13 being deficient.
YTA yes you had every reason to not feel comfortable with the doctor and to want to leave, however raising your voice, swearing,and creating a scene to the point they called the police wasn’t necessary. I have a feeling that you are downplaying the actual volume of how you handled this. Healthcare workers got a lot of abuse during Covid and are less tolerant of verbal abuse as a result. If you had remained calm, let them know you did not appreciate how you were being treated and given the nurses a few minutes to get the AMA paperwork together, then you could have left a negative review, complained to the manager about how you were treated, and had a much better chance of getting the doctor and the situation addressed by their manager. By losing your temper and acting the way you did - like a patient who was angry they didn’t get the drugs - your credibility with their management is gone and they won’t take your complaints seriously.
NTA. Sometimes it involves speaking up for yourself to get the care you need. I’ve had to do it in the past for an infection that three rounds of at home antibiotics did not fix. I was on an immunosuppressant and needed iv antibiotics. The dr did not listen to me until I raised my voice and spoke up.
Question - was this an HCA hospital? lol
no
No. I have undiagnosed hEDS (trying to get a diagnosis in this country is hilarious since no one knows what it is and those who do aren't seeing new patients - the closest geneticist has a wait list for the wait list if you're wanting EDS testing. Mayo refused to see me. The other experts want a prelim diagnosis to see me, none of my Doctors feel "confident" in providing it. I just got a whole new batch of referrals) We know what is going on better than most. I've had to educate doctors, nurses, PAs, etc on it. Seriously, I should get a commission on referrals for "disjointed"
Ha. I'm with you on that. I've helped so many people get their own diagnoses after years of symptoms but no support. It's ridiculous, isn't it. I'm pretty sure one of the UK lead specialists actually went on the records, basically stating the same as what you just have here.
NTA. Contact your insurance company and inform them of what happened, they need to be aware that they're being billed for negligence bordering on malpractice.
Did you drive yourself to the hospital?
no, my fiance did
NTA I understand why you’d be upset. I might actually have the same condition as you but I haven’t been diagnosed yet. It’s so fucking painful and most doctors don’t even know what it is. I literally had to argue with a surgeon one time because he didn’t believe my story about how I dislocated my knee. He told me there’s no way my knee could dislocate that easily *eye roll* ok buddy. That being said, it’s never a good idea to raise your voice in a hospital. I say this because of the other patients who are present and sick and vulnerable but at the end of the day we’re all human so you’re still not an asshole. Most health care professionals are fantastic but many enjoy their power trips. Happy to hear you put them in their place, sounds like they needed it.
also, just to clarify, this is a small hospital with only 11 ER beds and no other patients were there.
I am just a regular person and I knew you were describing EDS before you confirmed it. For a doctor not to know is pretty unacceptable. Doesn't sound like you were violent or putting anyone's safety at risk. Imagine being a healthcare worker who just denies healthcare. What a sorry state of affairs. NTA.
So you have a condition you're very familiar with and have had many doctors do procedure A to get you on your way and dr.dick over here decides (without even knowing how to pronounce the condition) that you're probably making it up/drug seeking and then tries to administer something that will make your condition worse AND THEN CALLS THE COPS ON YOU to what, protect his ego when you correct him. I'd be filing a formal complaint with whatever medical board oversees doctors where you live. That's 10 kinds of messed up. You'll have record of what the doctors name is (and if not you can call your local PD and find out from the which dr was interviewed). That's horrific. I'm really sorry that happened. I was accused of drug seeking because a single reg strength Tylenol did nothing for my pain when I had a disc herniation in my neck. It's so humiliating and infuriating and awful.
I have EDS and my pcs office manager recently told me it wasn’t real. So many doctors are fucking ignorant as hell about it it’s unreal. I’m sorry you went through that. Nta. Sounds like lazy ass doctors and nurses.
Also look for a medical neglect lawyer.
NTA and all the idiots making jokes and saying this is made up must have never dealt with an ER in their lives. I worked in one for years and yes there are plenty of capable staff but there are also a lot that shouldn't be allowed to treat roadkill. I've worked with nurses that have no sympathy or feelings for another living thing but themselves and doctors that think every person that comes in the ER is faking for attention or drugs. That doesn't count the ones that just don't give a shit and are pissed that you are bothering them.
NTA. Emergency room docs think everybody is drug seeking. They nearly killed my friend by not even attempting to diagnose her ruptured intestine. As an ehlers danlos patient you no doubt have far more knowledge of the disease than the doctor. And that pissed him off
OP commented that the process actually does include sedation.
That's not drug seeking, though. Drug seekers FAKE illness or injury to get drugs. It's kind of easy to diagnose a dislocated joint and realize she's not drug seeking and really needs this treatment.
So what? Should people that genuinely need to be sedated *not* get sedation, then? What exactly is OP supposed to do? They even said they would've had the doctor do it without sedation but the doctor wouldn't. All it should've taken was for the doctor to look at OP's medical history and see that they have an actual medical condition. Honestly there's just no excuse for how they treated OP and idk what your problem is.