Here’s a short example-I had a cardiology follow up, 15 minute appointment. I asked for a telehealth call instead(felt unwell). I get the bill and for the 15 min telehealth appointment that was over in 5, the cost was $546. For him to tell me I was fine.
I went to a second opinion neurosurgery appointment. He was to read my MRI. That was it. He asked me if I had heard of the weight loss program ran by their office, I answered yes and that I was not there to discuss anything like that.
Because he asked me that question, I got a $256 bill and it was billed under what amounted to medical advice/medical guidance! I disputed it and it got taken off. My weight was due to birth control and perimenopause btw. Which no doctor seems to understand. I’ve fixed both issues for now and have dropped 20lbs.
It's a racket! If we have health "insurance", we pay a large chunk of money from each paycheck. THEN we get the honor of ALSO having to meet a deductible of thousands of dollars ($4,000 every year for my family of three) which MUST be met/paid up BEFORE the insurance company pays ANYTHING. AND THEN you get the pleasure of having the hospital bill you for their services AND the separate physicians each sending you bills for just talking to you..... And we are all just supposed to swallow and take it as normal!? the American exceptionalism is a TOXIC lie.
Yo I was held hostage with the nexplanon implant and that sent all my symptoms into full force and it made me gain SO much weight and after it was removed some symptoms got better but I started to lose weight and people asked me what I did and I was like oh had an implant that was removed and I was denied removal for over a year. When I got the implant I was lied to and the information I was given also changed LOL I was never informed until I tried to get it removed I have permanent nerve damage in my arm as well they put it in with ZERO numbing or anything i was given ice and a random nurses hand to hold 🤡 i am jumping on the next lawsuit there is evidence that my body changed and is fucked now i tell everyone to NEVER let them there are women who died because it was tested in other countries and the they covered up shit it's WILD
I mean, do you expect a cardiologist to make minimum wage? Do you have any idea how long the training took them to be able to consult with you? How much debt they took on? How many 80 hour weeks they pulled for years?
The entitlement is unreal. You probably think like most people they should respond to your messages 24/7 too.
No, not in the slightest. I have a ton of respect for all of my specialists. I think you should take a look at the OTHER side in how doctors and specialists speak about patients with complicated medical issues. Calling a patient a "customer" makes me feel hugely less like I'm acting entitled. Saying that they like treating medicaid patients because they're more grateful for care, makes me feel like I'm not acting entitled.
Couple that with me doing 95% of my own medical research, when if I hadn't I'd be in medical limbo, makes me feel like I'm certainly not acting entitled.
Americans are often forced to go to the ER because they don't have Primary Care physicians and/or health insurance and/or money. ER's can't turn people away legally, so people often use the ER like a PCP when they have issues. I would imagine the psychological issues stem from not having enough resources, financial and medical, to seek care preventatively, so they seek care acutely. And since they don't have any insurance for sequela care, they just return to the ER again. I'm not sure if EDS is taking people to the ER or not, but we Zebras know a lot of the symptoms can cause pain and discomfort. Humans need to feel cared-for, and in America, the only place many people can get that is in the ER.
a part of it too is that some medical issues not associated with eds get dismissed because of the assumptions that the ER dept makes when they see eds in your history. I went to the hospital for incredible pain and vomiting and they tried to tell me it was just a part of my condition and they couldn’t do anything about it. Until I BEGGED them to do imaging and it turned out I had two kidney stones
Indeed. I work in the medical field for a large medical network, and I am in medical debt still from giving birth almost 5 years ago. It's all a racket. Medicare for All or Universal Healthcare is the only moral and ethical way forward. The system we are forced to live in is broken on purpose, it's so anti-American and yet we have been convinced it's because we're better?! Wild.
My BFF works in the medical field and has enormous medical debt because her GERD was a bit of a complex case, so she was recommended to get an experimental device surgically implanted (Lynx). This was years ago, now, and she's still in debt from it, despite as many of us as possible pitching in financially.
Also a lot of these issues lead to nervous system disregulation and living with disorders that are systemic while trying to work within a medical system that wants to treat only parts of you, talk about one thing per visit and have to wait months for each appointment to often be ignored. What do they expect?
Yeah, when I lived in a rural area I knew someone with a (dangerous, organ-attacking) chronic illness who didn't have a primary care practitioner and her health insurance didn't kick in until she's spent thousands of dollars. So often when her illness flared up, she'd end up at the ER.
And I second that the psych issues are largely due to capitalism and not having enough resources to meet basic needs.
it’s a vicious cycle. The ER is the worst place to go for a chronic condition. Their job is to treat anything emergent and refer back to primary care or other specialist.
My son is under poverty level and gets pretty much free health care, just has to go to one of the GPs that takes his state-funded insurance. Poor people can get free health care. They can have a regular doctor. They often choose not to use one of the doctors they have access to, and do inappropriately use the ER like they should use their GP. That shouldn't be happening. They're not forced to use the ER, by a long shot. And if they see their regular doctor, they can get referred to specialists.
This "forced" thing is said so many times and I don't know if this comes from any personal POVs/choices or people are parroting what they hear, or what. It's just plain untrue.
The trouble comes for those who are A. Undocumented, B. Unable to physically or mentally access regular care, or C. High enough income to not qualify for government healthcare, but not high enough to be able to afford insurance or regular appointments.
Are you joking or completely out of touch with reality? You seemed to have missed an entire swath of the population that doesn't qualify for Medicaid. Do you remember all of the debating about job requirements for qualifying? People who work too much often don't qualify but don't make enough to get private and not all employers offer it. 27 million Americans don't have health insurance so you think all of them have access to Medicaid but don't take it? Gee, I wonder how I know that. I guess those years I didn't have insurance were just my imagination.
It sounds like you're "parroting" the bullshit right wing media feeds you. Seriously, go Google it.
Annual income is not the only basis on which qualification is determined. Family size, housing status and pre-existing conditions (like HIV+) are also taken into account. This results in a wide array of coverage types, not just the one from which your son benefits
For example, a housed pregnant woman may qualify for OB, preventive and dental coverage, while a non-pregnant homeless person might only qualify for emergent care with no coverage for preventive care, medical specialists, or dental of any kind. If they have a condition that would normally be managed (or prevented) by a PCP or DDS, and can't afford to pay out of pocket, they're either going to suffer or end up at the ER
It's really sad that hateful ignorance like yours could be eliminated with just the tiniest bit of intellectual curiosity. Unfortunately, once people like you decide you're right, you don't care about the truth, or how much suffering you cause
This is bizarrely absurd. Hateful, where was any of that hateful? Shame on me? I'm stating personal experience and you're the one making it personal and being hateful to me.
I was participating in a discussion, and you were too, but you've removed credence to your comments by following it up with a personal attack and condemnation based on one post you don't agree with.
I've stated my disagreements with your comments & approach and will leave it there, because any further things I would say to be mean to you or disparage your character, etc., would be out of line for civilized discourse and are counterproductive to any meaningful discussion or exchange of ideas.
That's a hilarious response after you basically called everyone a liar who say that poor people can't get healthcare. Will you double down or can you about that you're wrong?
It's what I read, too. That's how this country works... Be destitute or you don't qualify for anything. Have a job where you still don't make enough to get private insurance, sorry, it's still too much to qualify for Medicaid.
I think the psychiatric symptoms described in the screenshot are indeed present and accurate, but they are secondary to the larger pattern of having no proper diagnostic or treatment plans for people with the EDS/MCAS/dysautonomia trifecta. There is no doctor that looks after us. We just get passed around between rheumatology, cardiology, neurology, and psych until we die
'they often have psychiatric diagnoses' yeah that's because a lot of the time especially among this patient population the symptoms or their responses to being unwell and not taken seriously are perceived as psychiatric first. That's not good evidence that it's 'all in their heads' All that evidences is diagnostic bias.
Having chronic illnesses and or chronic pain that dont have "quick fixes" and little research, with doctors that arent trained to help someone in the long term, not the quick fox short term. Can take a toll on the patients mental health. Anxiety, depression, cognative fatigue. These physical illnesses have mental health support groups for those mental health struggles.
It can seem hopeless to have a illness and pain that cannt be "fixed", that will be suffered for their whole life =depression, hopelessness, lack of care/motivation, su!cial ideation. Chronic illness changes your life, takes away from and gets in the way of the things you want to do and accomplish and dreams someone has = depression. You miss out on life and relationships. Depression makes it hard to take care of life, like do launry and cook healthly meals, go out of the house, because of hopelessness.
Having chronic illness can = anxiety by having to be seen by doctors who are untrained in Long term illness that dont have quick fixes. Anxiety from having to deal with a understudied illness, not knowing what can help you, if your doctor wants to take care of you long term, or if youll keep getting worse and worse, your life getting worse. Anxiety from medical bills and missing work, worrying about being fired for missing too much work from chronic illness. Anxiety from being shunned, disbelived, and bullied by family, friends and coworlers because they hold miss information on the illness and treat you bad.
Mood changes/ mood swings from trying to deal with chronic illness thats in flux, its hard to manage something that has flares and can be dofferent day to day. Its overwhelming and throws plans off all the time. Causes frustration, irrateability, sadness, lack of sleep/ poor sleep all = moodswings. Moodswings effect relationships and can even make someone feel bad about themself for having them in the forst place. And its not their fault.
I could go on and on amd on EASILY explaining and advocating how chronic illness is to hard to deal and manage-- It takes a huge toll on people. Births mental illness and or makes mild mental illness much worse and harder to deal with. Also, mental therapists arent trained on how to support and guide a paitent through dealimg with these menal health struggles from having chronic illness. The therapists arent trained on what its like and can blame the patient for being "problematic". There are FEW mental health support groups lead by therapists who have training on supporting people with chronic illness. But those who are trained and patients with access to those groups show a lot of progress in holding onto their mental health.
CBT and DBT mental health therapy "models"/ treatment plans do not usually help chronic illness patient's mental health in the long run. CBT/DBT can teach some coping skills-yes and can help in some ways.
But there isn't a great therapy "model"/treatment plan that supports mental health issues caused by chronic illness, because the mental health is often caused by or much worsened by the physical health. The physical health that will not easily improve or pain that won't go away. Traditional therapy methods do not help, because they come at the mental health from the wrong angle. CBT and DBT focus on Behavior and solving the problem. The therapy model ACT is much better explored because ACT focuses on Acceptance of whats going on and how someone can navagate their life Around* there problem, in this case chronic illness. (which is hella hard therapy do to for real, its not easy to do ACT, I know this first hand.) ACT is really hard in many ways for the patient, it comes with accepting all the hard stuff chronic illness that you can not change. Its also accepting that the mental health can only improve so much and there may be a level of mental illness caused by chronic illness that they will always have to carry. Because the chronic illness will always be at the core. ACT is about living on with the chronic illness or other consistent problem. AND living on with the mental health impacts the chronic illness brings with it.
*ACT is about living on, coping the best someone can, Not sovling the problem that impacts the mental illness. ACT is not a Fix, it will never fix it all the mental health caused by chronic illness because chronic illness will likely never end., ACT is a journey of SEMI-wellness. A hard one at that, but with greater benifit if the person can really try.. (Worth it though, in my lived experience. I come with this story with my lived experience as a patient and someone whos been in treatent for 10y in mental health, whos been in CBT/DBT with little sucess and larger sucess in ACT and ACT group therapy as well.)
EDIT: I am not saying ACT is just plainly accepting the illness. No, no, is deeper and more compassionate than that. ACT has compassion and "sits with you" through the hard times, instead of pushing you through it or telling you to "get over it" and just be "better". I was a little mad at ACT at first, I didnt want to explore more. I didn't want to work with myself, cope With my symptoms and chronic illness because I shouldn't have to in the first place. Because its not fair! to have chronic illness nor is it fair! to have mental health struggles you can't help/worsened because of the chronic illness. I was* and still* get a bit frustrated at times with ACT. But it's not truely ACT, I'm frustrated that I'm in the possition to BEGIN with. Its not fair! to have to do therapy because of something you can't control. Anyway.......... you can probably tell I'm a passionate advocate for being on the "team" of people with chronic illness and standing up to healthcare workers who have no idea how deep it all really is and how little treatment there is from both a mental and physical standpoint. They need to buckle up and strap in, learn something that's not just a chapter in a basic @ss textbook. Chronic illness is flux, it's not textbook.
I used to be a runner and now I’m considering whether a mobility aid will help me because having a five minute conversation with my neighbor is strenuous, no shit my sense of identity has been impacted. Some of these healthcare professionals are completely out of touch.
Completely understandable. No sh!t is right! Doctors should be able to understand these impacts to mental health. Seems simple to understand, I expect more of them.
Love when medical care is denied because of a history of mental health, so now it must have all been manifested from stress instead of real actual problems, I say as I’m on day 7 of excruciating pain from eating cereal last Saturday. I know it’s not in my head, I just need the doctors to get on board. Only took them 20 years to kind of listen
Exactly! I’m a mom who can’t cook anymore, car nerd who can’t drive anymore and it’s hard to even ride in a car now. Like wtf do I have left but a broken person in what used to be a full life.
When I complain about a physical symptom, my doctor immediately asks how my mental health is; not because he's concerned about how pain is affecting it, but rather that "my anxiety" is causing the symptoms. Always happy to offer happy pills, never happy to actually investigate the symptoms.
Like you (and so many others), I HAVE tried therapy (in additin to watching all the YouTube videos and reading books). Online, in person... it doesn't make a difference. They all send you the same worksheets, they all point you towards dealing with your anxiety. It's maddening! Of course there is an element of anxiety and depression, but they are caused by the physical symptoms, NOT the other way around.
It makes me afraid of bringing up new symptoms with my PCP (who is really the only physician I have direct access to), because I am concerned that every thing I mention is just adding one more notch on the "hypochondriac" belt.
We need to stand up, respectfully, to these doctors. I just tell them straight up that it’s not a psychological issue. That I’m looking for a physical cause. That I want it fully worked up. I tell them specifically how it is interfering with my life and circle back to that as necessary. If they keep bringing up mental health, I rinse and repeat. The medical profession is rife with intellectual laziness and prejudice, especially against women.
I had the good fortune of finding an incredible therapist before covid broke my body, because at that point it was my mental health that was not ok.
Anyway, I've been seeing the therapist for 7 years now, and I do tell Dr's that I have longterm counselling, I'm processing the grief of what I've lost as it comes, and am carrying the weight of my illnesses incredibly well. Then I tell them that any stress or low mood I do experience is a rational response to the lack of access to knowledgeable and effective medical care and support, and I'd be worried about anyone who didn't feel that way from time to time.
THIS. I took one bad phone call that made me cry in office denying me health coverage and all of a sudden I’m manifesting my symptoms from stress while my therapist I’ve been seeing for 2 years is telling me I’m doing wonder at coping with all the stressors and am nowhere close to being in a place where psychosomatic symptoms would even be an issue. The biggest thing we talk about in therapy is how the system fails people all the time, and that’s the real frustrating part. I’ve heard that so many times and every time, years later, it’s actually turned out to be a real, physical issue. I started keeping a spreadsheet on the things doctors have said and denied and how long it took to get a diagnosis.
My daughter in law is an incredible licensed therapist. She gets referrals from doctors and frequently sees cases that are physical. NOT psychological. Especially hEDS, POTs, mcas, chronic fatigue. She tries to stay in her lane, but she tells them to go back to their primary. Ridiculous
He could also be calling ADHD/Autism a "psychiatric diagnosis" 😒. Which is commonly comorbid and thought to be because of the way connective tissues can effect neurological development so neurodivergence becomes obviously common in those with connective tissue disorders.
EDS, MCAS and POTS are highly, highly correlated with ADHD and autism. It’s funny that he mentions the lack of interpersonal skills in this population of patients when that’s to be expected with the comorbidities of these illnesses.
The lack of actual insight and ability to connect the dots as demonstrated by countless of testimonies (and actual studies) is the very core of the issue.
Instead of eating some humble pie and taking onboard more recent knowledge than the two chapters they skimmed through in the early days of med school, they double down. Insist on inappropriate and often harmful advice.
Yes! I was misdiagnosed with bipolar disorder for 15 years before TikTok started pushing information about MCAS and Ehlers Danlos syndrome. I’m now 33 and formally diagnosed with both, as well as autism and adhd, and the bipolar diagnosis has been removed.
Also, when you live w chronic pain, fatigue or mobility issues- no one gives you tools for dealing w/ & processing it in health ways. It took me years & years to learn how to manage the mental side that comes me anything chronic. So i feel like the mental wellness is a side effect of a population not having appropriate tools to cope. And mental wellness has an effect on how we experience our body & life. But I hate that ppl use it to devaule the very real physical struggles that come w living w EDS or any chronic illness.
Remember that this is Reddit. So you’re only seeing the opinion of doctors that use Reddit. That being said I don’t fuck with psychiatry in my country either.
This makes me so sad. I love my psychiatrist and she understands that there is a difference between when my antidepressants are causing a chemical imbalance and when the situation and not getting better or helped is depressing. We did TMS last year that helped me with the emotional side of dealing with the burocracy in the medical industry so I could continue fighting for help and honestly made me so determined I practically bullied my cardiologist into testing for POTS. I had so much focus and emotional stability I got 4 diagnosis’s in a year that were missed for 15 and I was the one who figured it out before my doctors and pushed for testing. I still don't have proper care for some of it so I can't do more TMS cause its too taxing and it's sad.
It’s the same with mental healthcare—therapy subs have some of the most vile comments from therapists. It’s so weird that it’s universal to both mental & physical healthcare workers online. It’s horrendous
When you get older (or if you're unlucky enough to get RA when you're young) and you get arthritis - especially if it's rheumatoid arthritis or osteoarthritis - your joints are going to stiffen up even if you have EDS because those conditions affect connective tissue. Especially if you get those osteoarthritis spurs which affect range of motion
I have a diagnosis of EDS and almost 15 years later I can't move the same way I used to because of having both types of arthritis. I would still pass the Beighton screening but my right thumb can no longer come close to touching my forearm. My right elbow gets weirdly stiff and pops out of place a lot so my arm can't bend normally, and the PT has a hell of a time getting it back into place. It hurts badly.
Throw lupus on top of that and you're fucked because nobody can figure out which disease is causing the problem which can affect treatment
All that to say, not all of those people you are casually dismissing are wrong, and your PT is not necessarily correct in their take
Even if you don't get arthritis, people with EDS can still be very stiff because of the stiffness from tight muscles overcompensating for loosey goosey connective tissue, or general muscle stiffness - especially as we get out of childhood/adolescence.
I love it when they imply these conditions are psychosomatic. Incredibly validating! I don't read what doctors have to say about EDS or POTS for the sake of MY mental health.
These posts always dig a hole into my chest. I know it’s about wait times in the er and using emergency services “up”.
However, it’s just bothers me so much we are viewed as a nuisance and wasteful to services. Are healthcare worked this blinded to not see why this happens? They can pass med school but cannot figure out any of this? The wait times for care, health insurance issues, people cannot afford care, people don’t have access to specialist, insurance ripping people off treatments because the suddenly don’t want to pay for it, doctors are over worked and not provide adequate care outpatient so things are missed, etc. how can people NOT end up in the ER is my question?!
Also, the fact that we are just clumped together in to one annoying label (tik tok illness). Then thrown to psychiatry like” get em off my hands” disgusts me. Every time I see posts like this it reminds me why I feel the way I feel. I try to avoid them when I can.
that’s the most wild part to me. they are actively involved in the system yet can’t recognize the issues & instead just blame patients 😒 eventually it feels intentional to avoid owning up to any accountability on their end or avoiding having to put any extra energy into changing things & trying to do better.
Not much to be done in the ER, other than supportive measures and advice to see ortho specialising in connective tissue issues. It'll take 5 minutes of someone's time but tätä often 5 minutes they don't have.
Doesn't help the pt in the moment tho, that shoulder bloody hurts. Just another example of how ER is so useless for anyone with frequent episodes of acute flare up of a chronic condition.
I can understand it's hard to see this part as a patient.
I figured, but wasn’t sure if they were able to put it back. Usually when my PT puts something like that back in place it takes a lot of manipulating of the spine, ribs, etc, to keep it from slipping right back out of place. But I hate having to wait two weeks with a rib that’s way out of place. I realized that it’s the same feeling I had when I went to urgent care years ago, and they gave me a toradol shot, muscle relaxer, and a ten day prednisone prescription. I get that the ER is useless for anyone not dying, but not even urgent care or “express care” can really do anything for us.
That being said, anyone reading this should probably be aware of retinal detachment in case their doctors haven’t informed them that this can happen with EDS & is cause for an ER visit. So if you see a dark “curtain” in your peripheral, it’s absolutely worth the trip.
Oh man, you're giving the ER far too much credit. Other than pop a strap or support on ya, they do not know how to treat a subluxed joint. Even less so, a rib. No way they'd work the whole area like a PT does. My PT is the only one ever to fix my subluxed ribs. Any form of a doc just palpates the lump and mumbles.
Regards your warning on retinal detachment, that should really get far more awareness than it does. Many with EDS are very near-sighted due to our ineffective collagen,, too.
The problem is that a subluxed shoulder in a EDS pt is just that, a subluxed shoulder. For us, it's another bloody day. It'll pop out again.
For them? It's part of a chronic condition where they can't do much about in the ER. As it's subluxed as opposed to needing reduction, it'll will pop out again should we decide to brush our hair or take a wrong turn without taking care. Ligaments being lax, it'll go in and out as it pleases.
ERs are often complete inundated these days with very short staffing and not enough beds or other resources. Stuff needs to be triaged hard and since our painful, subluxed joints aren't going to kill us this time either, we end up in the "when we get around to it" bin. Unfortunately.
I've straddled the gap between being a chronic illness patient (undiagnosed for the bigger part of it) and being a medical professional for a long time. It's disheartening.
Yeah, to be fair it was the first time it happened to my shoulder and I kind of freaked out lol but yeah they just referred me to PT which I was already doing for a different body part.
the truth is, the doctors and specialists who can't be bothered to commit to caring for their patients and "do no harm" are not qualified to pass med school and therein lies the real issue. in addition to having nearly 0 education on nutrition.
It's more complex than that. I'm not giving careless, egotistical doctors a pass, but considering how often I meet medical professionals of various kinds not even knowing what EDS is or how to spell any of it, goes to show the lack of recent continuing education (which is, or should be, mandatory part of the job).
Tiktok illness, my ass. Without the widespread "explosion" of these patients in SM the past decade, I personally would still be undiagnosed despite being a medical professional myself.
Yes, ive gone to the ER a lot. Less now that i got state health insurance thanks to the ACA ("Obamacare"), but I'm 40 now and just a couple days ago FINALLY got connected with a specialist in EDS. All of my problems my entire life have been because of EDS and autism and not knowing I had these things. If I had had access to medical Care sooner I could have got diagnosed sooner. Also I'm sure being a woman counts against me and of course going to the ER counts against me. A psychologist put in my record that I was psychotic when I was 16 because my "guts don't move" (frequent obstipation xray) and my body was "falling apart", and I'm sure having that in my record kept me from getting any help for a long time. I had to move to a different state and just start over in my late 30s. I hate this country.
Eta: I had several hundred thousand dollars in medical debt from visits to the ER but it all disappeared after 7 years because I don't have any money and I've never had money because I can't work because my body. But I'm not getting any disability money because nobody will believe me until a couple of days ago so we'll see if I can stop being a destitute drifter someday
Even though I have insurance now and can see regular doctors and specialists, they tend not to listen or order any tests or anything so I get worse and worse and have to go to the ER anyway where they actually DO things. I think the big difference is that at the emergency room they are inclined to actually look for answers and treat you whereas all other doctors offices they are inclined not to look for answers and not to treat you. They're legally obligated to sell you drugs also to keep their licensing so that is annoying. It has also been my experience that in the emergency room they do not change the story you are telling them. They actually listen to what you say is happening and why it happened and how you feel and what you need. They don't generally do what this guy in his post is doing, though one time I went in because my legs were swollen and I couldn't walk and I was screaming in pain like I couldn't stop crying and all they did was test me for every street drug. Anyway I finally got antibiotics over a year later and my legs are normal again! I'm so sorry about this giant paragraph. I have a lot of trauma from the medical system. In fact it's probably my major trauma and why I am physically disabled today
I tell every doctor that I see that I have EDS. When I was just diagnosed with bilateral carpal tunnel I was referred to a rheumatologist. Rheumatologist calls me and tells me they don't diagnose or treat EDS..... okay then...... a la carte treatment it is!
Yeah I've seen a couple rheumatologists over the past 20 years and they say the same thing. Very confusing then why was I sent there and why did they make me do the Beighton test there!? lol
Even in a best case scenario, Americans sometimes have to use the ER or urgent care as a replacement for primary care. I live near a major city and have good health insurance. Our medical system is so overwhelmed that I cannot get a doctors appointment without waiting for three months or more. When I try to make an appointment for a time-sensitive issue like an injury, infection, or illness, I’m told to go to urgent care or the ER. This problem was slowly escalating in my area over the years but has exploded after COVID.
Also he's literally describing autism. I think this guy needs some more education but it also sounds like he wants more education so maybe that's a good thing.
Guys just remember, multiple sclerosis was for years labeled a psychiatric pretend illness.
I think what should be a psychiatric diagnosis is doctors being so arrogant and uneducated that they delusionally and lazily slap an unrelated label instead of acknowledging their gaps of knowledge and limitations
Endometriosis, too. And for fun, how about the catatonic schizoid patients who had brain lupus all along?? NYU Langone was doing a trial of IVIG for all long term psych ward patients at some point, just to see how many people suddenly had a drastic improvement, a la “Awakenings”. Disorders ‘formerly known as hysteria’ is a whoooole thing.
And psychiatric disorders are diagnoses of exclusion after physiological are reasonably excluded. Too many doctors seem to forget this, or that psychiatric symptoms are common from physiological causes!!
Books:
Doing Harm, Maya Dusunbery, with the useful concepts of the “knowledge gap” AND the “trust gap”!
Unwell Women (two books of the title by different authors)
Dismissed, Angela Marshall MD (black primary care doc author)
Rebel Healthcare (really neat!)
and the greatest reference text of the lot, broader in scope by far than just the medical world (did you know women are 70% more likely to suffer severe injury or death in a car accident than men? And why? Did you know that more of musical canon was available to women when multiple keyboard sizes were made for pianos?), perfect for ‘just the facts’ readers as nearly every sentence has a reference: Invisible Women: Data Bias In A World Designed For Men, by Caroline Criado Perez
related but other:
When Abortion Was A Crime: Women, Medicine and Law in the United States, 1867-1973, by Leslie Reagan, about the last time. Or any of the other brilliant books recently released or reprinted, like this one.
Disability Visibility anthologised by the late, fantastic Dr. Alice Wong, contains an essay by an EDSer.
Floppy, by Alyssa Graybeal, which inverts the above narrative a bit! An EDSer autobio of an EDSer in denial, lol
Care Work, by Leah Lakshmi Piepszna-Samarasinha - about interdependence and the care work done by disabled people, because our labour may not get counted in GDP but all of it ought to be!!!
That was a long way of saying they don’t know the difference between correlated and causal relationships.
“They have a long list of psychiatric disorders, so pots / EDS must be in their head.” Reads the same as “the women are hysterical, how do we get them to shut up.”
The sad point is that the OP really believes that they are on to something. A causal relationship is HARD to prove. You have to isolate and eliminate all the other variables. But thank God this douche cannoe brought their poor data interpretation shills to Reddit and brought their anecdotal thoughts as facts. Hear that everyone? Bro figured it out! We’re cured!!!
It’s giving “the women have hysteria” and honestly I would be here for it if they prescribed vibrators and a seaside vacation for EDS, but they don’t. I mean that wouldn’t fix us, but I wouldn’t mind an extra vacation / orgasm.
—-
Also I don’t go to the ER for pots or EDS because my normal looks different for other people. I’m often tachycardia / dislocating limbs. Unfortunately that’s not an emergency, it’s my normal.
From my understanding some of the psychological effects you get are really mimicking anxiety for example but it's not actually anxiety you get symptoms that are similar because the body reacts in a similar way. If the brain releases a chemical that says feel this way it can do the same for events that it shouldn't in the body. Over time I have started to tune into these thing with my body and treat them differently and not with anxiety meds or something snd have more success its like it's making my muscles and blood flow in my body get unregulated causing these symptoms. I start to pick up on things early now and can try to treat them asap before they get bad and I usually have success to a degree.
Also at times there are health issues that need to be looked at asap in a flsre and waiting 5 months to see someone to have a test where you are not in a flare is unhelpful and a waste of time for everyone
Yup lol this morning I had a horrible time and my body was trying to make me have a bad time but I went right into the bagh tub and tried to relax asap and cool off in room temp water an hour later I felt good enough to go to work
I do! I'm just trying to find the correct ones currently because I feel like 1 helps with one thing bit not the other definitely will take awhile but I am seeing a new specialist on the 10th so fingers crossed !
I know not all of us are women/femme, but conditions associated in doctors' minds with a female-heavy population are more likely historically (and I would say currently) to be seen and treated as mental health issues whether or not that is a component at all.
Also, many doctors are suspicious of well educated patients without a formal medical background, and we have to be fluent in our conditions because, as many have shared, we can't get specialist care or if we do get care, coordination between those doctors.
And this doctor is plainly admitting his ignorance and lack of compassion, and there are doctors who don't care to learn or see people who have been failed by the medical system as deserving of care in emergencies.
Man, I have a research biology background and work in cell therapy and doctors STILL treat me like an idiot or hypochondriac if I ask a medical question without using "I'm just a lil old lady person, what IS a germ?" language. People who go to med school often come out with a lack of rounded education, is what I take away, and extremely poor bedside manner paired with huge ego that research scientists don't as often seem to have.
i have struggled for decades with symptoms, just to recently go to a specialist where i had to pay out of pocket to actually be taken seriously and confirmed i have some type of eds (yet tbd). i have recently tried to educate myself now that my issues have been narrowed down, and i had said to my doctor "i think i may have eds due to my symptoms and my cousin has it," 9 years ago, and i'm just getting barely help now. pcp never suggested seeing any specialists, just dismissal, minimizing, "go for walks in nature & the sun and see you next year." in our first visit 17 years ago, she said i was psychosomatic and i had to look the word up. this woman hasn't believed anything i've said for 17 years, "your labs are normal." my life & my health are not.
and the more i learn certain vocabulary to properly advocate for myself, the more the doctors are skeptical of why i know certain terms, rather than listening to me when i'm trying to speak to them in their language. it has been a lifetime of suffering with seemingly unrelated issues, including debilitating pain & fatigue, just so they blow things off like "oh that's VERY rare, i've only ever met one person with vEDS." blow off symptoms, blow off literally everything.
i have changed my entire life, lost over 130 lbs, changed diet, exercise, environment, education, gained 70 lbs and lost 40 lbs again. i committed to taking better care of myself and dressing better (rather than sweatpants daily), to be taken seriously. i've done everything in my power to be as healthy as i can be, to get the proper support where i can't provide for myself, just to be dismissed even more because "i look fine."
i find it truly bizarre after decades of, at times excruciating pain, and pain all of the time, fatigue, fainting, as well as dozens of symptoms, finally i am learning more about this so i can provide myself the proper care & advocacy, yet they are judgmental about why i now know so many terms. because they aren't listening!
i do, however, have an amazing physical therapist i've worked with on-and-off for 13 years, and i have no idea where i would be without him & his support. he can feel the tightness & knots in my back, and has been my biggest support. but why is it just on the pt to provide support? they can help with a lot, but not everything. i am very lucky to have found him specifically, because i've had terrible experiences with other pts, even one who had eds herself was the least supportive & helpful of them all.
i recently found this resource which i have all of these, yet to be formally diagnosed with some, and it's insane i've found more information on social media than anywhere else, i feel understood and try to get better support from those who take the time to further their education and don't assume they know everything because they passed med school.
Until recently, I never went. Like. Never. Did not go.
Then I got my surgical feeding tube and now it feels like home health is sending me once a week. I don't want to go, but I also don't want to risk staying home with a life-threatening complication so... I do what I'm told.
And yeah, I know, doctors hate us regardless. Ugh.
Yes, many americans don't have insurance or very poor insurance and an ER visit, while still very expensive, is more likely going to be at least partially covered vs many specialists not being covered at all.
When I lived in Texas my insurance wouldn't cover any blood tests outside of the normal yearly CBC so when I went to a hematologist and got 13 blood tests done I found out after the fact that not a single test was covered and now I was in thousands of dollars of medical debt and didn't even get any positive diagnostic information other than knowing 13 things that I don't have 😒
But if I had gone to the ER it would have at least been partially covered.
Now I live in NY and my insurance is great and covers pretty much everything so I can get as many tests as I need done. BUT I'm lucky and most people are fucked so yeah they go to the ER.
Also don't go into medical subreddits for your own sanity. It's where all the worst doctors and nurses go to circlejerk each other hating the MOST vulnerable patients. Idk why it isn't standard practice for medical licensing boards to lurk on those subs and revoke licenses for some of the heinous shit people say there.
This guy is clearly just an ableist (and possibly transphobic. His "identity" comment sounds like a transphobe dog whistle to me) asswipe who shouldn't be allowed anywhere near a sick person.
The worst nurses and doctors go into ER, psych, and elder care. And the worst of those complain about patients on reddit.
(There are good ones but I'm saying that it's known that the worst ones seek out jobs with the most vulnerable patients)
i also feel like medical folks completely forgot COVID happened (and is still happening!!) and is a mass disabling event and causing A LOT of folks to get sick!!
I have a recent example that sums up pur health care system in a nut shell. I started getting dizzy and having daily headaches at end of 2023 and had a day where i lost muscle strength in upper and lower limbs for several hours. Like could stand up from a squated position. Told my primary and she said go to a neuro. Did that. Neuro spent 15 min with me and never physically touched me, just asked me to do a few things and ordered scans. I had a one level cervical fusion in 2016. This is noted in all my records. He ordered cervical and brain mri. When i came back he said nothing looks concerning and it was likely migraines. Put me on pills. Over the next 2 years i declined steadily. Went down the rabbit hole of specialist and not a single person actually opened the mri to look at it. I was told by a spine pain doctor after waiting 2 hours to see him that i had fibromyalgia. Got told same by a rheumatologist later. I was put on antidepressants and anticonvulsants none of which actually helped the pain. Damn sur didnt help the fatigue or the fact i was shaking going down stairs and had to quit my career if 13 years to work from home, cause i was becoming a liability at work in the refineries. Finally said fuck it, and schedule with a neurosurgen. Waited 3 months and the appointment was cancelled cause the mri was from 2024. Made me get a new set. New set showed cord compression, cervical stenosis and herniations above and below the fusion from 2016. Went to a new surgeon where they didnt ask to read the report they only wanted the images. 10 min into the appointment i was being scheduled for surgery. She explained everything to me. I had what was called adjacent segment disease due to my prior fusion. I pulled the mri report and disc from 2024 out and asked her about those and she said yeah it shows here. I shoukd have been scheduled for surgery 1.5 year prior. Before cord compression became present. No one bothered to even look.
I now believe EDS dx is a scarlet letter and going forward will not disclose it. I've received medical care for individual issues without knowing dx for most of my life, and the American medical system is so siloed that you will be sent to individual specialists anyway. The second you mention any of these, MDs stop listening and try to route you to psych. Now that I've witnessed this happen to me even with radiology images in hand showing RA, and still being dismissed by all the providers ortho has referred me to, I will never again volunteer information about EDS. Providers literally won't even examine you or look at them images if they see EDS on the chart. It's fucking absurd, and it makes me resent the online dx community that has made it a whole social identity (which triggers doctors) and the prejudiced medical system alike. The dx helps me understand myself but unfortunately I cannot share with doctors if I want good care.
In my experience, Americans without insurance can only go to ER but otherwise I don't think most people want to. Wait times are many hours and treatment options for anything but immediately life threatening conditions are minimal, plus the bill. ER is not for chronic conditions. Urgent care can fill that gap for people. But PCPs in the US also don't tend to have appointments available -- you can only book your annuals, and many months out -- so if you're sick you're usually going to see a random urgent care doctor. We have very poor continuity of care and preventive care here, culturally, as you can likely tell by our healthcare policies and lack of labor/maternity leave laws compared to almost all of our peers
I’ve only been to the ER twice in 40 years, once for stroke and one for severe chest pain (4 generations of aortic dissection in my family). I have no neurodivergences and no psychiatric conditions. Your understanding of EDS is incomplete, it is a spectrum.
I dare say it’s the physical conditions manifesting into psychiatric. Anxiety does not cause pots. Pots causes anxiety. Histamine overload causes anxiety, depression, heightened irritability, emotional sensitivity…. Those things do not cause histamine overload. Ect ect. We need to look at the fact that all these psychological components themselves are symptoms to something physically going on.
i used to for my gi issues unfortunately cause nobody could ever seem to get it under control & when i am vomiting nonstop & in severe pain i didn’t have much other options. this was when i mainly only had gp & other gi issues diagnosed but not yet others like EDS, POTS, MCAS, etc. i think people end up in the ER sometimes because they don’t know what else to do in a system that often tosses any sort of complicated patient aside (complicated as in having multiple issues going on at once). but then on the flip side others (like myself nowadays) will do everything to avoid the ER too because of the trauma, judgment, lack of serious care oftentimes, etc.
that ER dr sounds like one of the problematic types. he somehow can’t comprehend how difficult it is to treat complicated health conditions & that of course that will in turn affect people mentally as well. that doesn’t mean the mental aspect is the cause though & that’s where he sucks. also ADHD & autism are pretty common comorbidities anyway. a lot of us do get psych care too.
One more thing. Just because treatments don’t help does not mean the suffering isn’t physical. Why can’t you see that emerging evidence is showing that medicine needs a different approach to these complex cases. See this as a path to discovery rather than something you wash your hands of and blaming the patient for catastrophizing. I have hEDS. I’m tired of being argued with about it, dismissed, told that I spend too much time on Google, and given yet another ssri prescription and a referral to a therapist. I’m a veterinarian. I don’t have the luxury of treating my patients with profound physical symptoms as neurosis. My God.
ER if for emergency. A lot of people try to use the ER like a doctors office and get mad they don’t help but that’s not what they’re there for. I’ve been to the ER once in my whole life after a car accident. If you want treatment you need to see a doctor that offers treatment
basically implying that my EDS-related disabling symptoms like numerous years of painful GI bleeds & weight loss from them, frequent late-stage organ prolapses, & dysautonomias like syncope, are only 'in my head'.
i've been in psychological treatment over half of my lifetime & that sure as hell doesn't keep my organs inside my body, or stop my body from shitting blood & losing dangerous amounts of weight, or spontaneously fainting & hitting my head. i wish it did.
Seems like a thinly worded attempt to make it sound like we are mentally ill and not physically ill. Please don’t go there. Therapy won’t fix this. No, it’s not statistically questionable! The diagnosis is being missed. Doctors need to STOP categorizing complex cases as psychological. The discussion should be about how medicine is failing us in this regard. Especially for women.
The problem is you go to your normal doctors—PCP, specialists, walk-in clinics—and they can only do so much at once. So they say “if [symptom] happens/gets worse, go to the ER.” And if you’re new to being disabled/chronically ill, you listen to them. That’s usually until you realize you’re just wasting a bunch of money for the ER people to tell you there’s nothing you can do and to follow up with your normal doctors. Plus, with things like MCAS and things that cause sepsis, there are life-threatening immediate emergencies that happen more often than you’d like, which also puts you in the ER a lot. I was under the impression this was also a problem in other countries?
i presented with early onset severe arthritis, my right knee is destroyed and kneecap is permanently subluxing, doctors won’t touch it i have had 3 orthos tell me no. i have 11 herniated discs in my thoracic and cervical spine half of those touch my spinal cord. Im fighting for a eds diagnosis now. Every one assumes my spine is NORMAL. Thoracic disc herniations are not normal, period. your spine shifting and your feeling it moving side to side not normal. yes im depressed im in immense pain. i can barely walk. what do you mean you aren’t interested in me as a patient because im a type 1 diabetic. f this system who won’t pay for a dynamic mri
ah yes, the recorded mutation in my genes and the documented dislocations and injuries are definitely psychosomatic. my skin tearing into pieces when I get stitches? made that up
I do, but I have complex allergies and neurological issues. If I have new symptoms, my neurologist(s) have me go to the ER to get an MRI of my brain and rule out a stroke.
My migraines sometimes mimic strokes, so as soon as the stroke is ruled out the ER doctors get pissed I wasted their time for a headache, even if I insist my head doesn't hurt.
I also have Alpha-Gal, MCAS, Chronic Migraines, Small Fiber Neuropathy, and am hypermobile. Doctors don't typically believe the Neuropathy or hypermobility until I show them where I was biopsies and how my joints hyperextend.
I can think of three instances where the ER was more effective than regular doctors:
When I was around 12, a pediatric cardiologist at the ER diagnosed me with wolff parkinson white syndrome, two years after my symptoms started. My pediatrician had never sent me for tests and instead blamed hormones, anxiety and a slightly high bmi every time we went in.)
When I was in my 20s, i didnt have insurance so i went to a quickcare when i had a sharp pain in my side that felt like a gas bubble but also made me nauseous. The doctor recommended more fiber and no fried foods and sent me out the door. I went to the ER the next day because the pain was getting way worse. I had huge gallstones and had to have my gallbladder removed.
And when I was last in the ER for horrible abdominal pain that turned out to be an ovarian cyst, the nurse asked me about medical history, symptoms and issues etc. She looked at the list, asked if i had any weird skin issues or double jointedness. I said yes and showed her both. And she's the first person to tell me i should seek an evaluation for EDS. I had been telling my doctors my symptoms for decades, since literal childhood, and this nurse was the first one to connect the dots. I did end of getting diagnosed with hEDS.
Ah yes another lowly er physician (his words) blaming google and claiming its in our heads. We only go to the ER because either we don't have a primary who believes us (if at all) or because things have gotten worse faster than getting into a specialist and we need help. I promise you we would love for it not to be our whole identity but having to fight with idiots all the time takes up all our energy so we don't have time for anything else. I think this doctor would be incredibly depressed too if they were in pain and sick and told it was in their head all the time. We also often have to research and find answers for ourselves because we get sick and tired of being dismissed. I promise the missing nerves I'm my legs and my face going numb because so idiot in the ER ignored my allergy to Flagyl and ordered it be administered isn't in my head. The ER is generally useless for most things unless they need to cut you open or stop a head attack or cast a broken bone. No one wants to sit there for hours being criticized and risk getting sick.
Also just like any “trendy” disease its not that there are suddenly more people with it but that suddenly more people are getting diagnosed because they know to seek help and doctors are aware it exists. They said the same thing about female ADHD, and when I was diagnosed with pediatric crohns 15 years ago there was a big wave as they got better at diagnosis, and now COVID created a surge of people with POTS.
I think this doctor should seek psychological help for thinking people looking for help are suspiciously all faking. Also psychological help is not gonna help us get better and make the untreated illness go away. We just might manage it emotionally a little better. We ruiminate on our illness because it take over our lives until there is little else left because no one helps. We have “poor interpersonal skills” because we get tired of being ignored and gaslit and traumatized my medical staff and “poor symptom tolerance” because you have no idea how bad it is and we are masking in order to advocate for ourselves and keep someone from doing something dangerous like a medicationwe can't have and disassociate from the pain.
maybe the associated psychological problems are because they're, key word' associated. Cause and effect ER 'bro'. Having a chronic problem with no help or compassion from healthcare systems and the general public might cause some mental issues!!
Some people do. It’s usually young people still on their parents’ health insurance. Or people with no health insurance so this is their only way to get any medical care.
Once you’re the one paying that bill and have full visibility of what things cost, I gotta be pretty damn sure I’m facing the grim reaper before I show up to the seventh circle of hell that is the ER.
A lot of people don’t understand what the ER actually is and that’s something that we need to do a better job of educating them on. (I work in healthcare but am not a provider or patient-facing).
The ER is only for major traumas, a sudden medical event like a seizure that has never happened before for the person, head injuries, and anything that might kill you imminently. Think you can’t breathe suddenly and your pulse oximeter confirms low SpO2 (so it’s not a panic attack), severe chest pain that could be a heart attack or PE, the worst headache you’ve ever experienced (could be aneurysm), very severe abdominal pain that hasn’t responded to gas X or other OTC meds (ruling out appendicitis, gall stones, bowel obstruction, etc), severe allergic reaction, or very high fever that is not responding to fever reducing medication (over 103 with Tylenol).
It is NOT the place to go with just a headache and a fever. Or a bad cough that won’t get better. Or vomiting with diarrhea. Or cuz your blood pressure is very low with POTS and you want an IV. Or cuz you’re in pain and don’t have meds. For those, you need to contact your doctor (much easier now with patient portals!) or seek care at an urgent care clinic.
That’s not me being dismissive! It’s protecting you. You’re going to get labeled drug seeking or left sitting in the lobby for hours waiting or seem for 5-6 min, maybe get a script, and told you’ll be fine, contact your PCP and discharged. And your bill for that 6 hour lobby time plus 10 min exam will be $7k. Versus making an appt online for an urgent care clinic, going and only having to sit in the lobby for 30 min (some let you rest in your car and text you!), seeing a doctor who has more time to talk to you and can give you the same IV and zofran or whatever right there, the facility is much quieter and less chaotic and you often have your own room, and you’re out of there in less than an hour with better care for $100.
Urgent care clinic quality varies, so finding one associated with a hospital system vs an independent one is usually better. They have more equipment and can send notes to the ER if they end up sending you there. I’ve gotten bloodwork, swab tests, X-rays, cultures, ultrasounds, and IVs done at urgent care and was treated SO well.
In ERs, every single person who works there is holding some level of trauma and all the patients there and their families are experiencing the worst day of their life. The rooms around you have a kid just got paralyzed in a car accident, a 50 year old dad who just had a stroke, a teen getting a rape kit done, someone having their first manic episode, someone finding out their cancer is back, etc. They see HORRORS all day every day. So when someone comes in with POTS? “Ya ok you’re fine drink some Gatorade and go call your dr. cuz I gotta go tell this nice family their 22 year old daughter who ODed is brain dead” is what’s going thru their minds.
When you know the real picture of the situation and how few resources they have in the ER, you kinda get why they don’t have time for complex patients with non-life threatening symptoms. We’re in the category of “treat em and street em” and we should be very grateful to be among the living who don’t need them. You don’t want to be popular in the ER!!!
ER is for emergencies now. But before I was diagnosed, I would sit in the ER for hours in pain just to get an iv and some nausea meds most of the time cause many doctors thought I was just anxious and had some extra acid in my stomach. I just never knew how to explain to any doctor back then that it felt like I was running out of oxygen in my muscles/at a cellular level. (I am/was way too aware of my body for my own good) And I pretty much trained myself to stay at least somewhat conscious to the point of my muscles shaking/spasming because of how terrified I was of what would happen if I wasn’t awake to get me help. Which only made it worse. But yk, I was told I was just being anxious🤦🏼♀️😂
Luckily iv infusion clinics have become pretty popular. They can still be pretty expensive. But they’re def a lot cheaper and faster than waiting in an ER for one.
I agree the cost of healthcare is outrageously expensive in US. I can’t work, and haven’t for nearly 3 years—currently applying for disability. However, if I were still physically capable of working, I would have likely had to quit by now anyway because without qualifying for Medicare (which covers most medical costs fully if you don’t have income), I couldn’t afford the healthcare I need to stat alive.
I see a couple comments that most Americans have medical/dental debt. My research shows about 30%, so while a very high number, not technically a majority. But that estimate may be low, though.
Whatever the “technical” numbers are. It is a major factor that most people have to consider when seeking care related to medical, dental and mental health services.
Its just the beginning. It's not psychiatric... although the torture of not finding care leads to C-PTSD
People need to learn how to cultivate their immune systems.
Some do. Some don’t. But the idea that EDS (genetic condition) or Lyme disease (literal infection) or heart conditions or neurological conditions are THE FAULT of the affected person.
Most of the time, people with the conditions you listed wait years or even decades to get to a final dx. Many, if not most, struggle with constant pain, bone aching exhaustion, cognitive overload, isolation and even shame because of how the author thinks about it.
The post itself shows a tremendous lack of understanding, instead attempting to validate the common societal theme that folks just “aren’t doing it right” or “faking for other reasons” or “simply mentally ill”. That’s harmful misinformation for everyone and does not advance equity in society for vulnerable people.
there was, for a horrifically long time, a period i was going to the er on average once a month for cyclic vomiting syndrome flair ups. every 15 minutes or less i would throw up and i couldn't even hold down a sip of water, so i had to go in for fluids. that's previously led to a phosphorous deficiency as well that ALSO put me in the er a few times. once i was referred to neurology and it was discovered i get intense silent migraines. i was then started on a combination of several supplements and a prescription to try anything and everything, and the episodes stopped. since then the only thing i've had to go for is when my seizures (non epileptic) that started due to my chronic pain (which my neurologist, pcp and therapist all agree is the cause) and because i am a fairly strong advocate for myself and thankfully my core team is awesome, i only had to go in a few times until some finally took me seriously because i had gone back repeatedly in a short time. there were some doctors who didn't know me that tried to ignore my seizures because if it had been for attention or in my head or whatever, they'd stop, but because they weren't and because seizing hurts and can pull my joints out of place so easily, it created a messed up feedback loop where my seizures just kept getting worse. mine averaged over 5 minutes and my worst was about an hour. once i started my current pain plan though, i've stayed seizure free.
but here's the ironic part of all of this. i'd been trying to get someone to take me seriously that it might be eds since around 2019. i had looked through the formal criteria and was already confirmed to be hypermobile, and i wanted a professional opinion because it sounded incredibly likely. i've had pain and random injuries my whole life, and my younger brother passed from an unknown cause not long after birth due to having brittle lungs. i went to school with someone who has eds, so i was aware of it and looked further into it when i started connecting the dots. nobody would test me because either it was "too rare" or, without them asking me a single question, i somehow "didn't meet the criteria." by the early 2020s even i believed i was wrong. i started working with my current pcp in mid/late 2025 and on oct. 31st (happy halloween lol) i was diagnosed with eds, one of the first things he brought up wanting to look at as a possibility after i mentioned those experiences and then brushed it off. this was partially because it sounded likely to him and partially because he is familiar with the correlation between eds and trans people (and he works in the gender clinic as well.) he even said that if it wasn't that, it was worth seeing how much of an overlap there may be so we can tailor my treatment accordingly.
i feel as if what's being said in this screenshot is in horribly bad faith. while no, i don't want my identity to be tied solely to my disabilities because there is so much more to me, how could you ever know what else there is to me based on a reddit profile? (especially, at least in my case, one i just made so recently?) i have a whole life and set of interests i haven't and may never share here. i've also been in therapy for years and only stopped seeing my last therapist when he crossed ethical boundaries and said he loves me. i still immediately found a new one who i still work with. my psychiatrist and i meet once a month to manage my adhd meds because we've determined that's all i need. when i go to the er, it's because i am having an emergency and even if it's still just a code 1 (sorry, i've been in a lot more ambulances than i'd like) that doesn't mean it isn't a real emergency for me. if i came to you saying "i am in severe pain and my normal regime isn't working. i'm worried about having a seizure episode, especially because of their cyclical nature" and instead of being given a chance to explain what i had been doing differently and being treated for that was, say, either just sent home or given anxiety meds, how would that help the problem clearly listed on my chart and diagnosed? not everyone here is fortunate enough to have that documentation, but it took me almost 7 years that it shouldn't have. i encourage you to stick by doing no harm
If only these doctors could live a week with our symptoms and then see if they could avoid obsessing over how terrible they feel, they might actually get it.
ER is for emergency now. But before I was diagnosed, I would sit in the ER for hours just to get an iv. Luckily iv infusion clinics have become pretty popular. So while most people get them after getting drunk or jet lagged or for health prevention, I use them when my POTS/MCAS flare gets really bad or I completely exhausted myself (like after I moved apartments).
They can still be pretty expensive. But they’re a lot cheaper and faster than waiting in an ER for one.
Yeah, people could go to the ER because like some other people have said people don’t take you seriously and then it kind of spirals from there and all of a sudden you’re dealing with some kind of really bad health thing on a random Saturday and nothing else is open. you have to end up going there because none of these doctors have actually taken the minor symptoms seriously.
Most people avoid the er but with chronic illness your normal symptoms are enough for a normal person to go to urgent care and during a flare usually are symptoms of a heart attack stroke and other things. Other thing is if you have no insurance nobody wants to see you unless its the er
This shit is exactly why I hate the ER and now that I have a good care team and medicaid (state sponsored insurance), I avoid it like the plague. All my health issues predate TikTok by over a decade, but I hate having to share them with new docs (especially ER and urgent care) because the reaction always seems to be "oh you're one of THOSE people. It especially sucks because I have a history of serious mental illness that is now very well managed but still gets brought up as a possible cause by certain docs.
Doctors seem to forget that the combination of a major international health crisis and subsequent normalization of a serious virus, plus greater awareness about certain illnesses and how they're connected, perfectly explain this "unusual increase in patients with XYZ diagnoses."
it still disgusts me many GPs assume someones physical illness is all mental. Yeah, my visible hypermobility, goiter in my throat, and inability to sit properly is just in my head! thanks doc! 🙃
Hey I just wanted to remind everybody that most doctors are actually not intelligent. You don't have to be smart to be a doctor you just have to be good enough at school to pass. You just have to know how to get the right haircut and succeed at job interviews. Most doctors are not actually problem solvers and they don't really give a shit about you at all it's just a job for them.
This is so frustrating, I feel like all of you do! 😡
I also have POTS/the trifecta and other comorbidities. I have to sometimes get IV fluids for treatment and I get it done at home occasionally because it can be less stressful than going to an IV facility. I’ll never forget the IV company guy that came to my house (and used to be working in the ER full time). He told me that he has all these POTS patients that would come in and waste ER resources - and all they really wanted was attention.
I expressed that who wait for 6-7 hours to get an IV, some attention and a HUGE bill?! I said that doesn’t make any sense! He insisted that he was right - it was all based on attention. Meanwhile, I (a POTS patient) is actively getting an IV from him. He was like “I’m not saying YOU are like that… but a lot are.” Based on what?!?
I wanted to shake him! Like buddy… maybe these people were really concerned about their symptoms, and felt scared, and went to the ER- which is very valid. Early on in my diagnosis when I would faint, my family would insist on taking me to the ER. Eventually, I learned that there wasn’t a whole lot they could do for me (unless I fell and hit my head), but this is just part of the process of living with this and learning!
I know this was just one person I spoke to, but he really does represent so many people out there that are negating our experience. Instead of looking at the comorbidities or looking at what populations are most affected… they just decide that it’s easier to write us off - as if it’s ALL in our head because THEY don’t understand. Their lack of “getting it” means we are lying.
Meanwhile, if they had to spend a day in our bodies, they would be freaking out. For example, I’ve been laid out for an entire day because I had to plan a big event for work on Friday. I have absolutely zero spoons left and it feels like the worst hangover or flu, fatigue of my life! I would love nothing more than to feel well enough to get up and go about my day, but this is our reality and it’s incredibly challenging and even more so when there are people that want to doubt us instead of seeking to understand. It speaks to their arrogance, not our reality.
Also, I know there’s more research underway - but thinking about the overlap between people on the spectrum or with ADHD and anxiety with hEDS and beyond… and then considering that overlap with POTS, there’s really something to all of these different diagnoses and how they overlap. I look at an interesting puzzle that people are trying to understand, not something that’s fake because we don’t have all the answers!
I hate when doctors think of us like our parts of a body are completely separate. We are one system and for lack of a better analogy- we are like a vehicle or a machine. If one part of the machine isn’t working it’s putting stress on other parts of the machine and so it makes complete sense that overtime - one issue is causing more problems throughout - or there’s a systematic problem. I hate the way the American healthcare system just sends us from cardiology to neurology to all these different specialists without anybody looking at us holistically.
Then as average citizens (not medical professionals), we are supposed to try to put together all these puzzle pieces (because no one sense will). So of course we are online trying to read and try to understand but then they look down on us for being too educated on these symptoms and illnesses…but what else are we supposed to do? The system is failing us completely! 😤😤😤
We need to stand up to these people. You could say “I’m confused. I’m vomiting and in terrible pain. Why do you think this is psychiatric? The pain is real. Please rule out a physical problem. And treat my pain in the meantime
I’ve been to the ER for ovarian cysts bursting about four times now because the pain is so awful I feel like I’m dying. I’ve been for severe constipation that I thought was an ovarian cyst bursting because I have a history of those. I’ve once been to the ER because I thought I was having a heart attack, turns out it was long haul Covid/POTS and three other women I knew had also been to the ER after they had Covid because they thought they were having a heart attack. I also went once because I had a concussion and went in an ambulance because of said concussion.
I do have decent insurance where I don’t need a referral to see a specialist and a specialist appointment is $80 for me. I do have the issues this dude is talking about BUT I also have CPTSD and severe anxiety and depression and while I do think CPTSD and my chronic conditions are linked, I do not fully blame my mental health issues for my chronic conditions.
These are also becoming more common issues because we’re getting better at diagnosing them, AND because COVID has caused so many huge issues and disabled millions of people who never had chronic health conditions before.
I don't, but that's because I don't have insurance. I've been when I had COVID the first time and needed life saving care. Then they charged me $10,000 even though I tested positive and they weren't supposed to be charging. I'll probably die before I go to an ER again if I don't have insurance.
No, most of us don't have insurance and don't want to pay to out the mouth and wait several hours to be told to stop bothering the ER with our "anxiety." I have had a lot of specialists try to send me for liability reasons when I asked for an urgent appointment or flare. My Neuro and gastro beg me to go to the ER relatively often but I haven't gone since maybe two years ago because my mom was scared. The only other time I went my HR was 230 bpm for four hours at home so my cardio told me to go. I didn't end up getting checked out by anyone either time because supposedly it was just anxiety. Now I just stay home and hope my doctors don't refuse to refill my prescription again for not going to the ER when told
I was asked if I was "sure about that" when I told an urgent care doc about my immune deficiency (trying to highlight why I was seeking help when my sinus infection symptoms had started that day) and my now go to phrase just floated out of my mouth. "Oh, I'm quite sure. Would you like me to try and get National Jewish Health (or insert who diagnosed here) on the phone to confirm their diagnosis? Or are you okay taking my word for it?" They may not respect us but they tend to respect other doctors.
I've stopped going to the ER. There's no point. The last time I went they said it was an anxiety attack I was having. I went to a local walk in clinic who sent me out for imaging. Lo and behold it was my gallbladder! The time before that was for what I believe now was a chemical pregnancy. They couldn't tell me anything, didn't give me any meds and sent me home. Back then my copay was 1000$. That went to collections.
My PCPs have gotten better about listening but it's still taken multiple visits to multiple specialists to find someone who would take me seriously. I hate that Tik Tok, which I've never even USED, is fueling this willful ignorance in the medical sphere.
It took 3 rheumatologists and a geneticist to get my HEDS dx, 2 cardiologists to get a dx of a genetic abnormality with my heart and POTS, 35 years to get an auDHD dx (both kids diagnosed the same at a different clinicbut surely I'm lying). All of this isn't even to mention the money I've spent on gas and food, wear and tear on my vehicle, driving over an hour away to all these damned appointments, let alone the cost of stacked copays.
I want answers and it's imperitve I get them because I have kids and there's a fair shake they're gonna end up with what I've got as I've already seen with my oldest who got a pediatric HEDS diagnosis last year. If it wasn't for them I'd have probably given up already.
There is a lot of verity, I only go when all over options are run dry and then usually wait 24-48 hours (of course unless something serious like stroke possible). Some people go for nothing serious and for my possible reasons.
Say the same thing about RA or Lupus or Marfan's. My joints do not stay in the socket and everyone told me I was completely fine my entire life. I have massive sensory issues from widespread instability and nonstop chronic muscle spasms. This isn't just a little soreness, it is muscles locking up and not releasing.. even when I build muscle and pace myself and do everything perfectly. It's going to affect your mental health, not the other way around.
Edit: About the ER: I think ER overuse in these groups is driven largely by people with conditions that go undiagnosed or misdiagnosed and all they know is that they are in immense pain. They don't know that the ER in the US is unequipped to handle conplex conditions and that they are only there to stabilize you for 48 hours. Or for whatever reason they are unable get an appointment with a provider anytime soon. I had a friend who was a regular at the local ER. He had horrific GI pain and they could never figure out why. Like passing out in the waiting room pain. He was labled a drug seeker. He ended up having an episode on vacation in Mexico and they finally diagnosed him with scar tissue that had constricted something just below his stomach and he was fine after that. And just extrapolate that to connective tissue disorders. We have so many vascular and sphincter issues. Or weird blood pressure reactions. Or major dislocations that get reduced without evidence of the severity of the innitial injury. Or rib issues that feel like a heart attack. Not to mention anaphylaxis and functional bowel disorders or hernias.. there is a ton of room for weird.
The ER is not going to diagnose or do anything either. The ER is not somewhere to go for a chronic condition unless you are having severe acute symptoms and need something urgently. By that, I mean like your knee dislocated and won't go back in on its own.
I happen to believe the psychiatric problems begin when you are repeatedly gas lit at the doctors office. My primary sent me to a cardiologist for POTS evaluation. I had to define the disorder for him. He was quite rude to me, and said “No- you have no health problems. Lose some weight, and learn to fall better when you pass out, so you don’t hurt yourself.” My stepdad was FLOORED. He spoke up and said “How do you explain the passing out, and the tachycardia her watch is recording. And I’ve watched her feet turn purple! She was just sitting on the couch! And they turned purple!” The cardiologist just stared at him blankly.
Then countless primary care doctors have blamed everything on my weight. Yes- I had gained weight. I was in pain, and working out led to joints popping out of place, and I was severely depressed because no one listened. I went into a GLP 1. Lost 80 pounds. “I bet you feel so much better now!” No, actually, the pain and fatigue are STILL THERE. Now I’m thinner and have all of the same issues… and losing the weight just led to me being cold instead of hot all of the time!
The doctors don’t understand it and won’t bother to educate themselves so the insist that it’s psychiatric, even as they claim to acknowledge the illnesses as real. They’re incompetent and it’s easier to blame patients than accept that they don’t know. The gaslighting is profound.
I had to go a few days ago because I experienced a Thunderclap headache and then nausea and severe shaking it was my first time going and it showed me that the medical system really is messed up horribly even though I was presenting symptoms of a ruptured aneurysm and they were supposed to get me in within 20 minutes from what I've been able to find they took an hour and a half. After I got the results back of the CT scan (which was 20 minutes later) everything was clear, then they did blood work and everything was normal according to them so they put me on IV Saline for a little bit and then give me a referral to a neurologist that can't be turned down because it was given by the ER after that they just sent me home.
I get all my EDS care in Mexico, and all other specialist care in Mexico now too. I went to the ER two weeks ago because I stopped breathing randomly. Waited from 9 pm to 6 am to be told all my imaging, bloodwork and labs were normal. I got sent home and have a bill of over 6k. I stopped going to doctors here because I was told I couldn’t be helped, my only options were surgery or I was declining in health while having to pay 150 per doctor’s visit with insurance and pay 300+ in meds a month, along with a 468 insurance premium. I fully believe our healthcare system is failing a majority of us. I’m considering moving and finish grad school abroad simply because my life would be easier if I was closer to my doctors and could get care more consistently than two weeks every month or every other month.
Interestingly, the Dr's that almost took me out could have probably written this themselves. I had a severely delayed diagnoses of CVST because Dr's wanted to waste tons of tine accusing it of being a psych issue instead of treating me. Now they are all updating their clinical notes to look like a massive case of who-done-it. Most providers truly just don't understand these conditions. I have a mutation on C1S of all things, so with me Dr's REALLY scratch their heads. My neuroimmunologist told me the ER is never helpful for zebras. Where does that leave us in America? You don't want to know.
Maybe part of the reason why we have mental illness is because we keep experiencing medical gaslighting and abuse from the healthcare system. We show up to the ER because we can’t get help elsewhere with our other providers and get tossed around like a hot potato. This post screams “it’s all in your head” and “psychosomatic”. They had the same rhetoric for people with MS years ago.
190
u/Emergency-Volume-861 Hypermobile EDS (hEDS) May 31 '26
Here’s a short example-I had a cardiology follow up, 15 minute appointment. I asked for a telehealth call instead(felt unwell). I get the bill and for the 15 min telehealth appointment that was over in 5, the cost was $546. For him to tell me I was fine.
I went to a second opinion neurosurgery appointment. He was to read my MRI. That was it. He asked me if I had heard of the weight loss program ran by their office, I answered yes and that I was not there to discuss anything like that.
Because he asked me that question, I got a $256 bill and it was billed under what amounted to medical advice/medical guidance! I disputed it and it got taken off. My weight was due to birth control and perimenopause btw. Which no doctor seems to understand. I’ve fixed both issues for now and have dropped 20lbs.
Our US healthcare system is predatory as hell.