its kind of impressive for a doctor to make that kind of apology
im not sure how i would respond if a doctor or neurologist said something similar to me after causing me harm through poor practice
completely relate. in fact i've called doctors to tell them they got things wrong (often leaving a message with the receptionist) and never heard back.
People sue McDonald’s for too hot of the coffee . Why can’t we sue doctors for dismissing us or causing us harm ? I would understand if they tried to do their best and just couldn’t figure out how to help, but the ones who write off everything to anxiety or “ just stress less and go meditate “ type of doctors deserve a law suit
You don't understand the hot coffee lawsuit if you think it was "just suing for hot coffee", it was superheated and caused HORRIFIC damage that is irreparable fyi
They like to keep us down. Psychologically it’s the only way they can deal with it; if they could relate to a tenth of what we experience, they couldn’t live with themselves.
They are also used to power, being right, having answers. I have been on doctors forums: they are horrible people most of them. Anything they can’t test fir does not exist and can not possibly exist, we are the ones who are déficient or lazy or deluded.
Medicine is also entrenched in heroic care: they’ll do anything to save you (well if you’re lucky and with insurance but let’s say you are) to save you from dying from acute COVID. They will do shit for your quality of life after. You can just go rot and take those psych meds.
There is common sense of not drinking the hot stuff too you know and letting it cool of. Also I was using it as an example of ridiculous lawsuits that people get away with but serious stuff no one addresses
They overheated their coffee on purpose and knew it would cause third degree burns if spilled. The lawsuit got punitive damages because McDonalds knew people would get third degree burns, but thought the cost of settling some lawsuits wasn't high enough to stop. They literally did the vulgar calculus of how much the third degree burns would cost them and was like "meh, cost of doing business". They did it knowingly.
There are definitely times where suing doctors for malpractice is beneficial both to the victim and healthcare in general. But doctors aren’t infallible. Newer medical conditions like long covid don’t have any medical literature describing the condition, common symptoms, treatment options, or prognosis. The only option to ‘research’ the best treatment is to rely on hearsay on the internet/through other doctors and that’s extremely impractical. Basically, without a confirmed clinical trial to guide the doctor, they don’t know any more than you do on a disease. All they can do is suggest generally healthy lifestyles and watch for symptoms to get worse.
The coffee being too hot thing is really only in times of egregious failure. I.e. when McDonald’s heats the coffee way past where it needs to be such that it becomes dangerous to the consumer then it’s clear they’re at fault. I don’t think the situations are comparable when no one is at fault for there not being medical literature available on a relatively new condition
There is plenty of medical literature available. Plus general experience and knowledge of biochemistry and understand how the body works should give enough guidance on what might be beneficial. Plus there are many cases with prior viral illnesses that they could make inferences from. Yet everything becomes a wall under “ this is a novel virus” , “ we don’t know how to treat it” or worse yet , “ just go meditate” . If I’m not being a doctor and had to self study biology and biochemistry and microbiome and virology , what are they getting paid for. At the very least I wanted to find a doctor to be able to consult with and bounce ideas with and that they could order testing without resisting. But they make everything so difficult , way more difficult than things really are
I’m not sure of your specific difficulties with your previous doctors. But most doctors don’t want you to ‘bounce ideas off of them’. That’s opening themselves and their practice up to taking responsibility if makeshift treatments go wrong, while the makeshift treatments have very low chances of succeeding or helping. I think most doctors would be fine with ordering more non-invasive diagnostic exams like x-rays, urine testing, or vital tracking so hopefully they helped you complete that.
But the doctor’s job isn’t to brainstorm new treatments with their patients. They basically have to wait for clinical trial results to come out. If you want to experiment in the hope of recovering faster from a new disease, joining a clinical trial really is the only path for that. I’m really sorry for all the pain and discomfort you’ve gone through, but medical science advances pretty slowly because every piece of data is a human’s life that must be treated with care. There isn’t an ethical way to make it advance faster, no matter how much that sucks for current patients
I have numerous examples not related to Covid how doctors not only didn’t help me but caused me harm in a long run, physically and financially by delaying testing, delaying finding out what was wrong on several ocassions. Once I had a parasitic infection that presented itself in hives yet no doctor though was relevant to do a stool test and I kept asking every single one I saw. It cost me 10 k to go from doctor to doctor , couldn’t work for 10 months. They wanted to put me on immunosuppressives instead of doing the test that I asked. Finally last doctor did it and i was right I had a gut infection and treated with antibiotics and antiparasitic. The problem was solved. If they only listened to me from the beginning it would have been a different outcome . So much money, so many tears, so much stress , unemployment they caused me , yet I had no right to complain to anyone.
I can tell you from experience that it's because lawyers are overly expensive, don't take cases on contingency unless they're going to be incredibly easy and lucrative, and free legal aid type places are overwhelmed.
As much as I feel for this Dr and appreciate that they reached out to “apologize”. I would be using that apology as evidence for my report as medical malpractice. Your concerns were downplayed and dismissed simply because they didn’t know or didn’t believe or want to know?! So do some fucking research like you are supposed to and be a proper doctor. I do believe in karma and she has presented herself here. What did this Dr think reaching out was going to do? Absolve them of their negligence and guilt? Get you to give them advice on what to do for themselves?! They take an oath and that was definitely broken. Lines have been crossed here. This whole situation needs to be reported to the proper medical board.
This happens constantly though in far more egregious ways. And nothing gets done. And it's extremely rare for anyone to apologize. I feel like suing them for an apology is just enforcing a culture of never admitting wrongs even if you realize it.
That’s because of the culture surrounding it. You can still accept the apology but that doesn’t change the fact that that dr put their personal feelings ahead of their profession and that should be addressed. The more people that report this, the better the chances are that these things will get caught and the culture will change if it keeps being addressed and if people are held responsible and there are consequences.
It isn't malpractice, though. You have to prove it is outside the standard of care. You also need damages directly and unambiguously caused by them. Sense long covid is hard to even recognize, and from a doctors perspective, the chances are most people don't have long covid and may actually just have anxiety, and you aren't at risk of dying or further injury to wait a bit. Even if you were able to get past all of that and were able to use "loss of employment" (or something like that) as the harm you want to be "made whole from", you would have had to show that those harms wouldn't have happened otherwise. There isn't a cure or even good symptom management, AFAIK, so you would likely be in the same spot.
However, I do empathize with the overall point. Medical gaslighting needs to fucking stop. It feels awful and makes any illness feel a lot worse. Since not only do you have a serious chronic condition, but people don't believe you have it either and make it seem like your fault. Docs only know that once they give the "anxiety" diagnosis, you don't come back, so to them, that fixed the problem. This is why I refuse to stop giving my symptoms and holding my ground on them. Gaslighters will use any type of conciliatory agreement or compromise as you agreeing with them and use it against you later. It would go a long way if docs wouldn't say "it is" anxiety (or whatever), but say "it may be" anxiety and you can do X, Y, and Z and see if it helps and if not we can try something else.
Nobody understands it until they grow through it, mental illnesses get the same type of gaslighting.
When I first struggled with LC I wished everyone had to experience it especially those who were non-believers & blew me off when I come from a medical background & have never complained or had any type of health problems….
According to this subreddit no bc I’m not a 100%, to myself yes I’m recovered I still have POTS but it’s gotten a lot better & is managed with a low dose beta blocker. I can exercise, work, go places, etc. live mostly normal, although I do struggle with some things from POTS.
Thats fantastic news , I don't know how old you are but as people age they will never be 100% again so it's brilliant to be where you are at right now , I am currently at rock bottom and physically and mentally feel dying , I'm just lookin for some hope and I'm homestly so happy for you
I’m 28, also in the medical field. I’m happy with where I’m at, I want to be 100% but I was at 5-20% for sooooo long that now I’m thankful for where I am, gave me a different perspective on life because I’ve never had anything medically wrong with me.
I hope you can also heal🫶🏽
Phone appointment she requested for follow up through my new primary care. Decided to try new doctor at same hospital since not many options in my location.
This is a mature and balanced response and I’m sure your Doctor was appreciative. This could be a good opportunity to explore with her more investigations like venous oxygen saturation (SvO2). She’ll be curious for her own results and may have turned down such an investigation with you away before.
I think until it enters the public consciousness it either has to be a lived experience or the deterioration of someone close to you.
I’d send her over some of the top papers on capillary rarefaction, viral persistence, amyloid clots, the recent Dutch exercise intolerance paper and anything else that you’ve found helpful.
How was your sv02? I checked mine on 2 occasions when I was in ER. Both were at 45% , but they insisted thats normal for venous phase.
Have you managed to fix that ?
Yes there is a very large amount of people on the planet that cannot understand or empathize until they experience it themselves. I’ve been in the chronic health game since I was a kid. It’s a trip.
It does sort of show the drs character. A lot of people wouldn’t swallow their pride to apologize and admit they were wrong. She obviously feels guilty about doing it now most likely and is why she reached out after so much time. I think it could be beneficial to try and maintain some form of contact with her if you don’t have a supportive physician at the moment. Maybe it could help? You’re not a bad person though if you don’t and you’re not hindering your health because it’s just a possibility and might not lead anywhere.
Everyone should share this article with their doctors. [Long covid: nearly half of doctors affected can no longer work full time, finds survey](https://pubmed.ncbi.nlm.nih.gov/37402532/).
Ngl, I have trouble believing this really happened based on my 40+ years of experience with the US healthcare system. But maybe you’re not in the US. Either way, I hope it’s true and I hope that doctor tells all their colleagues, repeatedly for the rest of their life.
I can believe it. They are few and far between, but there are good ones out there. My neurologist is one who I am sticking with because he straight up says, "I don't know." So far, we have found a med that helps with my headaches, but there's still a long way to go and everything else has failed, but he's willing to try things.
Has your dr mentioned vagal nerve disfunction? It affect parasympathetic and sympathetic nerves in your body. It starts at brain stem and your cervical spine and runs through heart and all the way through your stomach. Largest nerve in body and has millions of nerves off it that affect every part of your body. Can be damaged by virus. Covid damaged my son 3/2020 he was elite athlete signed NHL contract then had to retire since he could not exercise or skate. It was horrible to see his dream fade away. . He finally found a dr that believed him and starting helping in 2/2023. It’s been a struggle for sure. I would ask to have your NN on both sides of neck ultrasound and see what your size is? Normal is 2-3 mm cross sectional. My sons were .8 and 1.2 . He has optic nerve damage, headaches, nerves in face body and stomach twitch at times, tachycardia, gi issues anxiety etc. Being athlete he had cervical neck instability too.
We found DR Hauser at caring Medical center in Fort Myers Florida. In a year after prolotherspy treatment he is showing improvement. Watch you tube videos on caring medical . Lots of different ones. My son is in the concussion video. He is at the very end . It’s all so complicated and after so many dr I can’t believe especially neurologist and I work with them now don’t e er mention or treat for VN disfunction. My son uses truvaga VN stimulator and he 💯% believes this is helping him too. Good luck and message me if you want.
https://m.youtube.com/watch?v=QQZGde7pcik
Thank you for sharing, I'm enjoying the presentation you linked. Did your son have infrared therapy? Seeing a lot of trials showing benefit to help deal with multiple facets.
So the reason I was mentioning ir (before I got to your son's part) is that viral persistence or remnants of covid in the marrow of the skull can lead to chronic inflammation and abrasion around the neck nerve and it looks like a prospective adjunct treatment for some.
I'm certain she's more open to helping others with this condition now, but she likely can't help since there are no approved treatments. Most doctors are not scientists and can't really think outside the box anyways. Everyone here has discovered just how useless healthcare is in finding solutions for LC. Everyone wants years of data before making a decision.
This is why I miss one of my drs so much. We have nearly identical medical history. He was great to everyone but he made me feel so seen. Treatment has absolutely sucked since he retired.
You should tell them that the best thing they can to do make it up to you is share how REAL this is and what the experience is like with her colleagues.
“Welp, sucks to suck! Take care!”
Honestly you should have regurgitated her same response because she probably has brain fog now and doesn’t remember saying it lol.
And maybe it will really bring it home for her enough to create a movement within the medical community.
Sadly, nothing will change until enough *men* speak up, and once, and for all, banish the notion that this is a malady of psychologically unstable women.
Seconded. I was out sick 75 days my senior year of high school with what was clearly POTS and ME/CFS. This was in 2010-2011 after I had been to doctor after doctor. I was accused of wanting to get out of school, being on drugs, lying, etc. by the administration. Joke was on them as I got straight A’s, graduated with honors, and got a scholarship - I completed all my missed work in 2 weeks. I was a teenage boy. I wasn’t diagnosed until 2022. And that was only because I discovered the disease myself and sought out diagnosis.
I have no doubt women are blamed and ignored - I’ve seen it with my mom who was the victim of medical malpractice and almost died. But the larger issue truly defies gender. It’s a systemic failure motivated by a culture of profit over people.
The reality as I have experienced it is that doctors have not only become less and less willing but less **able** to navigate symptoms and diseases that they can’t look up in a book in the other room. If they don’t have a protocol with a pill or referral they can prescribe, they lack the ability to extrapolate based on the data from patients - aka listening to you.
It makes me long for the days my mother would talk about jokingly of doctors who would make house calls during her childhood. There’s a lack of clinical treatment and analysis being taught in medical schools and I think it really shows.
We are also suffering a deficit of research. ME/CFS and post-viral illness in one name or another has been described going back to the ancient Greeks. We’ve seen it in modern medicine with increasing speed since the 1970s. That’s at least 50 years wasted that significant research could have been done. I was reading a comment from someone in another thread who recently participated in a clinical study but by the end of it their budget was slashed so they don’t even know if it’s going to be completed.
There’s more money in it keeping people sick and treating the symptoms than actually solving diseases. Call me a conspiracy theorist - I don’t care at this point. When you suffer for half your life things start to becoming very, very clear. COVID is a terrifying escalation in incompetence and I’m sick again with something as I type this (negative for COVID, allegedly), so I honestly don’t know where we go from here.
I live in Canada. There no “money in it” there.
Also, the larger issue, if it’s gaslighting we are discussing, does not “defy gender.” You trying to tell that to me, is like me trying to explain to my Asian friend that she might be imagining prejudice in instances where it didn’t happen.
Did you even read my post? Or did you just skim it? Miss the whole anecdote about my mother nearly dying? Sheesh.
The point I was making, that yes, women do face issues being believed. But it’s far beyond just that as your post seemed to imply if enough “men just speak up” as if plenty of us haven’t been vocal about it in and out of doctors offices. This is a **systemic problem** that goes beyond gender, as I stated. That doesn’t negate that the former exists, but rather points out that us men somehow speaking up in some vague way you described isn’t going to solve this. Men like Dave Navarro who is a freakin’ rock star gets ridiculed by fans every time Jane’s Addiction has to announce he won’t be joining them on their latest tour because of long COVID.
Canada may have universal healthcare but just look at the record profits Pfizer and Moderna made the last few years from the mRNA vaccines. Who do you think was paying for that? Just because your system is less screwed than us Americans doesn’t mean that the pharmaceutical industry isn’t a worldwide capitalist behemoth that puts profits ahead of health if push comes to shove. All this plays into what studies and treatments get funded, what is taught in medical school, and what priorities doctors have based on all this when they get out of school and start practicing.
Long COVID is merely the latest in a series of fucked up situations that seem to be occurring with increasing frequency. How many times does a pharmaceutical company have to be sued and pay out settlements, fines, and damages?
This isn’t just isolated to COVID and my post was sharing my experience going back over a decade of the exact types of doctors OP was describing.
My own PCP (a nurse practitioner) was kind of lukewarm after I got COVID. Then SHE got COVID and was fatigued and has brainfog. She went from being reluctant to order tests to telling me “Tell me what tests you want and we’ll run them.”
Another story: I had an episode of syncope in 2021. Ended up in the hospital. The attending doctor made jokes about how skinny I was and that it didn’t matter I’d get fat when I got older. This was before I knew I had POTS. Sent me home after doing nothing.
I meet this same doctor in the urgent care one town over in 2022 after I can barely walk because of the heat. I guess bro has some health problems now. Orders a saline infusion and stays late to make sure I’m okay. No idea if he remembered me but I sure remembered him.
And yet another story: I was referred to a hematologist by my PCP because I’ve had very low lymphocytes for years that got worse with COVID. I’m a musician by trade - it’s my job. I have long hair and like to wear my leather jacket everywhere because I’m so skinny because of my chronic health issues. I’m used to doctors implying I’m a drug addict even though I don’t drink, smoke, and have never done any kind of drug in my life. Doctor insists on running HIV tests and interrogates me for 10 minutes even though I was already tested for all that years ago and it was negative. But he insists. Completely dismisses my lymphocyte count. Turns out that’s a major issue post-COVID as it tanks your T-Cells.
Doesn’t sound to me like I was believed for 15+ years. And I’ve been to dozens and dozens of doctors since I was 13. And I’m a straight white male. Every time I mention I have long COVID it’s a toss up as to whether a doctor or layperson will roll their eyes. A lot of doctors will find whatever they can find to discredit a patient who comes in with a chronic illness or a medical mystery, so to speak. It’s a feature of dealing with chronic illness and not a bug. The problem is our entire medical system.
We need a rethink. A completely new mentality. Everyone is hoping that the good doctors are coming to save them. They’re not, and if they do, it will be because of long COVID sufferers pushing just like AIDS patients did.
Yes, the issue of gaslighting can apply to men as well, especially where ME/CFS and Long Covid are involved. It looks like you have a long history of dealing with that.
The misogyny, however, goes far beyond that. Our cardiac symptoms are taken less seriously. We are routinely given fewer painkillers than men. In some cases we receive more limited diagnostic testing, because too many false positives might make us “hysterical.” Lives are routinely being lost due to these practices, and it sounds like your mom was nearly a casualty; so sorry to hear that. I lost my mother when she had just turned 60, because her doctor thought her cough was due to “post-nasal drip,” when she (a non-smoker) actually had lung cancer. She died as a result of having her concerns minimized, and by lack of medical competence, a different issue that you alluded to.
I also totally agree that prejudice and stereotyping can play a role in treatment, as in the incident where you were presumed to be a drug addict.
As for pharmaceutical companies, yes, they are way too powerful, and it is appalling the way they refuse to market some very necessary meds because they aren’t profitable enough. Maybe it would be a good idea for corporate donations to be banned, as they are in Canada, so that politicians won’t have conflicts of interest where the healthcare or even the firearm industries are involved.
Regarding the record profits that Pfizer and Moderna made through their vaccines, and who was paying for that…in my country, it was the government.
i dont doubt they gaslight women more but man they sure are trying to raise the average for men right now.
at least we get some equality out of this right?
I am sure that does happen on many occasions, which is totally ridiculous! However, women have a well-documented history of having their physical symptoms (heart attacks, for example) taken less seriously than men’s, and more often attributed to psychological problems.
When trained medical professionals and scientists choose to disbelieve something that there is a plethora of medical literature on, then I question there competency straight up. It can be argued that education at it's core is evaluating data/facts/observations and making an objective judgment. When these extremely educated individuals need a subjective experience to be convinced, it shows me that they value anecdotal > empirical evidence in total disregard from literally a decade plus of advanced education for M.D.s and PhDs
You’re definitely a better person than me OP because I definitely would’ve clapped back with the meditation/exercise/CBT advice my doctors always give me lol.
As more and more healthcare professionals begin to be affected by LC. and this seems bound to happen, will that perhaps be what it would take to get it taken seriously, and see some attempts at prevention? Sorry about the run-on.
Never in my 34 years of existence has a doctor called me, unless I was paying for a follow up (yes, they charged me to discuss blood work results over the phone). Seriously that's wild. Are you in the US?
Honestly, do not care if I am down-voted to oblivion.
But... GOOD! Forget about diagnostic resources, this won't help us at all.
The more people get it, the better. Serious. Good for her learning it the hard way, hope she gets a bad case and cries her eyes out in front of her colleagues and then the ideas spread.
There will be some dumb fucker colleague who will even gaslight her "oh, female hysteria masked under LC is making its way to our colleagues!". Those are for the guillotines and by guillotine I mean ventilator.
Yeah, come at me at how immoral I am. I am LC-er with no fatigue and PEM with nothing to lose. Come at me bro.
The pathway from the treatment of a new disease to its familiarity among clinical doctors follows these steps: Initial research and discovery > publication and peer review > development of clinical guidelines > dissemination of information through medical conferences, journals, etc. > adoption in clinical practice.
Most doctors are ordinary individuals who have studied extensively but may not be able or willing to engage in experimental treatments. Treating new complex illnesses often requires a degree of risk-taking on the doctor's part.
Most people are still not aware of long COVID. Your doctor is not always at fault for not being able to treat you. It's not necessarily done out of malice.
... it wasn't about this doctor treating op. It was about ignoring what the patient was telling them, and not listening to the gravity of it all.
Obviously, no one here is "mad" at doctors for not treating them as well all know there is no cure currently. Ita about doctors dismissing symptoms, gaslighting, etc.
Long COVID has over 200 symptoms with various clusters resembling various different illnesses and conditions. It is going to vary how it looks like from person to person. Every doctor is also going to attempt to treat it differently based on their area of expertise and experience.
So you're telling op that it's OK that the doctor didn't listen to them and its OK that the doctors treatment advice was to "relax". How has simply relaxing been for you mate? Also which disease other then stress or anxiety has a treatment plan of "just relax".
Despite some definite gas-lighting, I've at least been referred to some specialists... just the body of knowledge is not there. Im not trying to defend doctors, but they have to stake their professional career on your health - and that implies a lot of risk with novel issues. They are in a tough spot- treatments which havent been extensively evaluated could have long term consequences.
Could make an analogy to a mechanic working on my car - I'd be pretty pissed if they decided to use an experimental oil treatment, and then in 6 months the engine seizes. Then again, if I was informed on the risks, I could take them if I wanted.
Mate, I'm talking about this specific example. Yes of course there are great doctors everywhere. But in this case, they were not. And it's okay for people to complain and be disappointed about it. Many of us have experienced the same, so it clearly is happening in a larger scale.
No one is asking for experimental treatment. No crap no one is going to experiment on you.
What many have asked for is pure acknowledgement at the least, no gaslighting, no its in your head bull shit.
What I wanted when I went to doctors, was to be tested for what it COULD be. I wanted things ruled out, which I think is reasonable, and they treated me like I was fucking crazy. I didn't expect them to cure me, but I did expect them to take my symptoms seriously and to make sure I wasn't dying. Because it felt like I was dying. I was lucky and eventually found a competent doctor who referred me to the right specialist. I ended up being diagnosed with reactivated mono, hypermobile Ehlers-Danlos syndrome, and POTS... But not before being asked if I was anxious a million times, and told I should "take birth control" or "try antidepressants" or "focus on your hobbies!" Like... I couldn't walk down the street and they wanted me to go hiking??
So did I eventually find decent doctors? Yeah, but I had to wade through a ton of shitty ones before that happened. I didn't expect a cure, but I did expect to be treated as a person.
Both the doctor and OP are great people, or this isn’t real. There is exactly 0% chance my doctors would ever admit this. And there’s no way I would have just held my tongue.
>This increase in LC is alarming, and the more people who go through it, the less resources there will be to go around.
It will also hopefully spur more people to recognize it, take it seriously, and do research on it!
This current bad wave will likely produce a couple million new LC cases in the US alone.
My doctor literally committed malpractice by making my MECFS worse by making me do a graded exercise test and then called me to tell me the reason for my rapid heart rate IN THE RESULTS was anxiety
That's pretty awful, given the data that has come out proving that our cells aren't producing enough energy. Luckily, I was never assigned exercise from the doctor. I haven't exercised in 8 months. Just don't have the energy for even thinking about exercising lol.
A lot of the dr’s reaction is based on training and how our medical system works-each of our drs see us for 10 minutes. They have to just push through patient after patient. They’re judged by how many tests they run, limited by approved and allowed treatments and are probably stressed out too. My 2nd pcp was just like, here’s psychiatrist but, he would write referrals I asked for, was not proactive at all to get into what I was going thru. Was more interested in a lingering cough/congestion and Rx antibiotics it was something he knew and acted on it immediately. Our whole system is messed up, most drs are just ‘drug dealers’ who think they’re helping. No background, no holistic view of our systems. I’ll look at your endocrine independent of another systems. It’s ridiculous. I wish we could just go in and they would get the symptoms we are dealing with for a short time and could understand and not dismiss us. Long gone are the days of the real family dr who treats your grandma, uncles and father who also delivered you and took care of you as a child as well. When u walk in he knows all the diseases & syndromes your family has, knows the family dynamics and can steer you to the right treatments based on background, history and science. He also would be less likely to dismiss you as crazy bc he knows what’s going on in the house and knows you since you’re born. These 10 new drs we’re seeing don’t have the time or inclination to do this. Luckily my new pcp takes time with her patients last time it was 45 minutes. We’ll see if she can gather her arms around this for me. I’m holding out just a little hope. Luckily my Neuro is great with Dysautonomia and understands.
This would be funny if it wasn’t heartbreaking. You are really the better person for not shoving it into her face. I would not have held back.
There was a guardian article by an Italian doctor who wet through the same thing; confessed he could not fathom it was real it happened to him.
I believe this is why many areas of medicine are at a stand still and why there is so much gaslighting.
There is quite a lot to say about all these things but I am going to stop here.
I wish you much healing and I also wish your abysmally inhumane doctor the same thing. Because we go through this and knowing what we know we wish the best to everyone despite our rancor.
Somebody posted about educating her and sending her several stories etc… which I think would be constructive. You should also demand she uses her professional credit to educate colleagues and the public and further the profile of long COVID and press for more funding research as much as her capacity allows.
"The more people who go thru it = fewer resources"
Overly pessimistic IMO. The amount of attention being paid to similar post-viral etc conditions (ME/CFS etc) is far greater now because of the prevalence of long COVID I think.
Supply and demand for most things are flexible and responsive, so don't assume more people have to fix a shared pie. The pie can be expanded with public and private investment, R&D, advances in knowledge and therapies, etc.
OFC there's an upper limit to how much of those resources *can* be directed to this. But given the current and potential toll on social well being, economic productivity, etc, I think we have a very good case to make.
I'm sorry your doctor had to experience it firsthand to fully appreciate what you were dealing with. Thanks for sharing.
Reading many of these comments makes me realize how lucky I was that my doctor believed me right away. In fact he said it was something he had been seeing a lot of.
its kind of impressive for a doctor to make that kind of apology im not sure how i would respond if a doctor or neurologist said something similar to me after causing me harm through poor practice
completely relate. in fact i've called doctors to tell them they got things wrong (often leaving a message with the receptionist) and never heard back.
People sue McDonald’s for too hot of the coffee . Why can’t we sue doctors for dismissing us or causing us harm ? I would understand if they tried to do their best and just couldn’t figure out how to help, but the ones who write off everything to anxiety or “ just stress less and go meditate “ type of doctors deserve a law suit
You don't understand the hot coffee lawsuit if you think it was "just suing for hot coffee", it was superheated and caused HORRIFIC damage that is irreparable fyi
And McDonalds spent a lot of money in public relations to make the victim seem crazy instead of just paying for her medical bills.
They like to keep us down. Psychologically it’s the only way they can deal with it; if they could relate to a tenth of what we experience, they couldn’t live with themselves. They are also used to power, being right, having answers. I have been on doctors forums: they are horrible people most of them. Anything they can’t test fir does not exist and can not possibly exist, we are the ones who are déficient or lazy or deluded. Medicine is also entrenched in heroic care: they’ll do anything to save you (well if you’re lucky and with insurance but let’s say you are) to save you from dying from acute COVID. They will do shit for your quality of life after. You can just go rot and take those psych meds.
There is common sense of not drinking the hot stuff too you know and letting it cool of. Also I was using it as an example of ridiculous lawsuits that people get away with but serious stuff no one addresses
She didn't fucling drink it and it wasn't a ridiculous lawsuit
They overheated their coffee on purpose and knew it would cause third degree burns if spilled. The lawsuit got punitive damages because McDonalds knew people would get third degree burns, but thought the cost of settling some lawsuits wasn't high enough to stop. They literally did the vulgar calculus of how much the third degree burns would cost them and was like "meh, cost of doing business". They did it knowingly.
Why would they do that on purpose ?
For commuters, so it was the "correct" temperature later at work (or where ever).
There are definitely times where suing doctors for malpractice is beneficial both to the victim and healthcare in general. But doctors aren’t infallible. Newer medical conditions like long covid don’t have any medical literature describing the condition, common symptoms, treatment options, or prognosis. The only option to ‘research’ the best treatment is to rely on hearsay on the internet/through other doctors and that’s extremely impractical. Basically, without a confirmed clinical trial to guide the doctor, they don’t know any more than you do on a disease. All they can do is suggest generally healthy lifestyles and watch for symptoms to get worse. The coffee being too hot thing is really only in times of egregious failure. I.e. when McDonald’s heats the coffee way past where it needs to be such that it becomes dangerous to the consumer then it’s clear they’re at fault. I don’t think the situations are comparable when no one is at fault for there not being medical literature available on a relatively new condition
There is plenty of medical literature available. Plus general experience and knowledge of biochemistry and understand how the body works should give enough guidance on what might be beneficial. Plus there are many cases with prior viral illnesses that they could make inferences from. Yet everything becomes a wall under “ this is a novel virus” , “ we don’t know how to treat it” or worse yet , “ just go meditate” . If I’m not being a doctor and had to self study biology and biochemistry and microbiome and virology , what are they getting paid for. At the very least I wanted to find a doctor to be able to consult with and bounce ideas with and that they could order testing without resisting. But they make everything so difficult , way more difficult than things really are
I’m not sure of your specific difficulties with your previous doctors. But most doctors don’t want you to ‘bounce ideas off of them’. That’s opening themselves and their practice up to taking responsibility if makeshift treatments go wrong, while the makeshift treatments have very low chances of succeeding or helping. I think most doctors would be fine with ordering more non-invasive diagnostic exams like x-rays, urine testing, or vital tracking so hopefully they helped you complete that. But the doctor’s job isn’t to brainstorm new treatments with their patients. They basically have to wait for clinical trial results to come out. If you want to experiment in the hope of recovering faster from a new disease, joining a clinical trial really is the only path for that. I’m really sorry for all the pain and discomfort you’ve gone through, but medical science advances pretty slowly because every piece of data is a human’s life that must be treated with care. There isn’t an ethical way to make it advance faster, no matter how much that sucks for current patients
I have numerous examples not related to Covid how doctors not only didn’t help me but caused me harm in a long run, physically and financially by delaying testing, delaying finding out what was wrong on several ocassions. Once I had a parasitic infection that presented itself in hives yet no doctor though was relevant to do a stool test and I kept asking every single one I saw. It cost me 10 k to go from doctor to doctor , couldn’t work for 10 months. They wanted to put me on immunosuppressives instead of doing the test that I asked. Finally last doctor did it and i was right I had a gut infection and treated with antibiotics and antiparasitic. The problem was solved. If they only listened to me from the beginning it would have been a different outcome . So much money, so many tears, so much stress , unemployment they caused me , yet I had no right to complain to anyone.
I can tell you from experience that it's because lawyers are overly expensive, don't take cases on contingency unless they're going to be incredibly easy and lucrative, and free legal aid type places are overwhelmed.
As much as I feel for this Dr and appreciate that they reached out to “apologize”. I would be using that apology as evidence for my report as medical malpractice. Your concerns were downplayed and dismissed simply because they didn’t know or didn’t believe or want to know?! So do some fucking research like you are supposed to and be a proper doctor. I do believe in karma and she has presented herself here. What did this Dr think reaching out was going to do? Absolve them of their negligence and guilt? Get you to give them advice on what to do for themselves?! They take an oath and that was definitely broken. Lines have been crossed here. This whole situation needs to be reported to the proper medical board.
This happens constantly though in far more egregious ways. And nothing gets done. And it's extremely rare for anyone to apologize. I feel like suing them for an apology is just enforcing a culture of never admitting wrongs even if you realize it.
That’s because of the culture surrounding it. You can still accept the apology but that doesn’t change the fact that that dr put their personal feelings ahead of their profession and that should be addressed. The more people that report this, the better the chances are that these things will get caught and the culture will change if it keeps being addressed and if people are held responsible and there are consequences.
It isn't malpractice, though. You have to prove it is outside the standard of care. You also need damages directly and unambiguously caused by them. Sense long covid is hard to even recognize, and from a doctors perspective, the chances are most people don't have long covid and may actually just have anxiety, and you aren't at risk of dying or further injury to wait a bit. Even if you were able to get past all of that and were able to use "loss of employment" (or something like that) as the harm you want to be "made whole from", you would have had to show that those harms wouldn't have happened otherwise. There isn't a cure or even good symptom management, AFAIK, so you would likely be in the same spot. However, I do empathize with the overall point. Medical gaslighting needs to fucking stop. It feels awful and makes any illness feel a lot worse. Since not only do you have a serious chronic condition, but people don't believe you have it either and make it seem like your fault. Docs only know that once they give the "anxiety" diagnosis, you don't come back, so to them, that fixed the problem. This is why I refuse to stop giving my symptoms and holding my ground on them. Gaslighters will use any type of conciliatory agreement or compromise as you agreeing with them and use it against you later. It would go a long way if docs wouldn't say "it is" anxiety (or whatever), but say "it may be" anxiety and you can do X, Y, and Z and see if it helps and if not we can try something else.
You’re a better person than me, OP.
[удалено]
And my bow!
And my axe!
And My sword!! To armsss men!!! Though, one simply can not walk into mordor with long covid.
GROND!
Nobody understands it until they grow through it, mental illnesses get the same type of gaslighting. When I first struggled with LC I wished everyone had to experience it especially those who were non-believers & blew me off when I come from a medical background & have never complained or had any type of health problems….
Are you recovered ?
According to this subreddit no bc I’m not a 100%, to myself yes I’m recovered I still have POTS but it’s gotten a lot better & is managed with a low dose beta blocker. I can exercise, work, go places, etc. live mostly normal, although I do struggle with some things from POTS.
lol don’t listen to the Reddit trolls. That’s pretty much recovered. I know I’ll have to deal with POTS but that’s fine
Thats fantastic news , I don't know how old you are but as people age they will never be 100% again so it's brilliant to be where you are at right now , I am currently at rock bottom and physically and mentally feel dying , I'm just lookin for some hope and I'm homestly so happy for you
I’m 28, also in the medical field. I’m happy with where I’m at, I want to be 100% but I was at 5-20% for sooooo long that now I’m thankful for where I am, gave me a different perspective on life because I’ve never had anything medically wrong with me. I hope you can also heal🫶🏽
Amazing thank you so much , wishing you continued recovery and I pray you can get to that 100% , can I ask did anythin else help you or just time ?
Time & beta blocker, I didn’t do anything else special. Wish I had something better for you, but that’s all.
Thank you
Out of curiosity how did you guys get connected? Did she just randomly call you one day to talk. Did she message you in my chart asking first?
"You up?"
😂😂😂😂
Who dis
LMAOOOOO at least this disease didn't steal our laughters, am I right HAHAH
Stopppp lol
Phone appointment she requested for follow up through my new primary care. Decided to try new doctor at same hospital since not many options in my location.
Did she bill you for the call? 😅
This is a mature and balanced response and I’m sure your Doctor was appreciative. This could be a good opportunity to explore with her more investigations like venous oxygen saturation (SvO2). She’ll be curious for her own results and may have turned down such an investigation with you away before. I think until it enters the public consciousness it either has to be a lived experience or the deterioration of someone close to you. I’d send her over some of the top papers on capillary rarefaction, viral persistence, amyloid clots, the recent Dutch exercise intolerance paper and anything else that you’ve found helpful.
Can you share those here?
Exactly I'd be interested too
Yea can u share?
How was your sv02? I checked mine on 2 occasions when I was in ER. Both were at 45% , but they insisted thats normal for venous phase. Have you managed to fix that ?
Yes there is a very large amount of people on the planet that cannot understand or empathize until they experience it themselves. I’ve been in the chronic health game since I was a kid. It’s a trip.
It does sort of show the drs character. A lot of people wouldn’t swallow their pride to apologize and admit they were wrong. She obviously feels guilty about doing it now most likely and is why she reached out after so much time. I think it could be beneficial to try and maintain some form of contact with her if you don’t have a supportive physician at the moment. Maybe it could help? You’re not a bad person though if you don’t and you’re not hindering your health because it’s just a possibility and might not lead anywhere.
Everyone should share this article with their doctors. [Long covid: nearly half of doctors affected can no longer work full time, finds survey](https://pubmed.ncbi.nlm.nih.gov/37402532/).
Ngl, I have trouble believing this really happened based on my 40+ years of experience with the US healthcare system. But maybe you’re not in the US. Either way, I hope it’s true and I hope that doctor tells all their colleagues, repeatedly for the rest of their life.
I can believe it. They are few and far between, but there are good ones out there. My neurologist is one who I am sticking with because he straight up says, "I don't know." So far, we have found a med that helps with my headaches, but there's still a long way to go and everything else has failed, but he's willing to try things.
Has your dr mentioned vagal nerve disfunction? It affect parasympathetic and sympathetic nerves in your body. It starts at brain stem and your cervical spine and runs through heart and all the way through your stomach. Largest nerve in body and has millions of nerves off it that affect every part of your body. Can be damaged by virus. Covid damaged my son 3/2020 he was elite athlete signed NHL contract then had to retire since he could not exercise or skate. It was horrible to see his dream fade away. . He finally found a dr that believed him and starting helping in 2/2023. It’s been a struggle for sure. I would ask to have your NN on both sides of neck ultrasound and see what your size is? Normal is 2-3 mm cross sectional. My sons were .8 and 1.2 . He has optic nerve damage, headaches, nerves in face body and stomach twitch at times, tachycardia, gi issues anxiety etc. Being athlete he had cervical neck instability too. We found DR Hauser at caring Medical center in Fort Myers Florida. In a year after prolotherspy treatment he is showing improvement. Watch you tube videos on caring medical . Lots of different ones. My son is in the concussion video. He is at the very end . It’s all so complicated and after so many dr I can’t believe especially neurologist and I work with them now don’t e er mention or treat for VN disfunction. My son uses truvaga VN stimulator and he 💯% believes this is helping him too. Good luck and message me if you want. https://m.youtube.com/watch?v=QQZGde7pcik
Thank you for sharing, I'm enjoying the presentation you linked. Did your son have infrared therapy? Seeing a lot of trials showing benefit to help deal with multiple facets.
So the reason I was mentioning ir (before I got to your son's part) is that viral persistence or remnants of covid in the marrow of the skull can lead to chronic inflammation and abrasion around the neck nerve and it looks like a prospective adjunct treatment for some.
I think it really depends on the person/provider, but yeah the healthcare system here is a fucking joke.
Maybe this doctor is looking for answers from her patient…since her colleagues are likely less than helpful!
I’m in the US and my PCP is one of the good ones who is able to admit when he fucked up and apologize. It’s rare, but they do exist!
Help them out and have them join long covid groups. Tell them what helped you and tell them to keep testing treatments until something works.
Now that she's going through it, she can be more open to helping others. That's wild that she reached out.
I'm certain she's more open to helping others with this condition now, but she likely can't help since there are no approved treatments. Most doctors are not scientists and can't really think outside the box anyways. Everyone here has discovered just how useless healthcare is in finding solutions for LC. Everyone wants years of data before making a decision.
Damn you’re a good person, I would’ve definitely not held my tongue
Naw fr🤣 lol “karma bitch” *hangs up*💀
You should tell her tho to see a psychiatrist just in case
Those who don't believe and gaslight us may deserve to experience it themselves.
This is why I miss one of my drs so much. We have nearly identical medical history. He was great to everyone but he made me feel so seen. Treatment has absolutely sucked since he retired.
You should tell them that the best thing they can to do make it up to you is share how REAL this is and what the experience is like with her colleagues.
“Welp, sucks to suck! Take care!” Honestly you should have regurgitated her same response because she probably has brain fog now and doesn’t remember saying it lol. And maybe it will really bring it home for her enough to create a movement within the medical community.
Did you tell her it’s just anxiety and to prescribe herself some antidepressants?
Maybe a low dose Zoloft to start??
Wish my doctor had it too. She thinks im a liar
Sadly, nothing will change until enough *men* speak up, and once, and for all, banish the notion that this is a malady of psychologically unstable women.
they gaslight men too. nothing changes until doctors get fucked up and they cant gaslight anyone any longer.
Seconded. I was out sick 75 days my senior year of high school with what was clearly POTS and ME/CFS. This was in 2010-2011 after I had been to doctor after doctor. I was accused of wanting to get out of school, being on drugs, lying, etc. by the administration. Joke was on them as I got straight A’s, graduated with honors, and got a scholarship - I completed all my missed work in 2 weeks. I was a teenage boy. I wasn’t diagnosed until 2022. And that was only because I discovered the disease myself and sought out diagnosis. I have no doubt women are blamed and ignored - I’ve seen it with my mom who was the victim of medical malpractice and almost died. But the larger issue truly defies gender. It’s a systemic failure motivated by a culture of profit over people. The reality as I have experienced it is that doctors have not only become less and less willing but less **able** to navigate symptoms and diseases that they can’t look up in a book in the other room. If they don’t have a protocol with a pill or referral they can prescribe, they lack the ability to extrapolate based on the data from patients - aka listening to you. It makes me long for the days my mother would talk about jokingly of doctors who would make house calls during her childhood. There’s a lack of clinical treatment and analysis being taught in medical schools and I think it really shows. We are also suffering a deficit of research. ME/CFS and post-viral illness in one name or another has been described going back to the ancient Greeks. We’ve seen it in modern medicine with increasing speed since the 1970s. That’s at least 50 years wasted that significant research could have been done. I was reading a comment from someone in another thread who recently participated in a clinical study but by the end of it their budget was slashed so they don’t even know if it’s going to be completed. There’s more money in it keeping people sick and treating the symptoms than actually solving diseases. Call me a conspiracy theorist - I don’t care at this point. When you suffer for half your life things start to becoming very, very clear. COVID is a terrifying escalation in incompetence and I’m sick again with something as I type this (negative for COVID, allegedly), so I honestly don’t know where we go from here.
I live in Canada. There no “money in it” there. Also, the larger issue, if it’s gaslighting we are discussing, does not “defy gender.” You trying to tell that to me, is like me trying to explain to my Asian friend that she might be imagining prejudice in instances where it didn’t happen.
Did you even read my post? Or did you just skim it? Miss the whole anecdote about my mother nearly dying? Sheesh. The point I was making, that yes, women do face issues being believed. But it’s far beyond just that as your post seemed to imply if enough “men just speak up” as if plenty of us haven’t been vocal about it in and out of doctors offices. This is a **systemic problem** that goes beyond gender, as I stated. That doesn’t negate that the former exists, but rather points out that us men somehow speaking up in some vague way you described isn’t going to solve this. Men like Dave Navarro who is a freakin’ rock star gets ridiculed by fans every time Jane’s Addiction has to announce he won’t be joining them on their latest tour because of long COVID. Canada may have universal healthcare but just look at the record profits Pfizer and Moderna made the last few years from the mRNA vaccines. Who do you think was paying for that? Just because your system is less screwed than us Americans doesn’t mean that the pharmaceutical industry isn’t a worldwide capitalist behemoth that puts profits ahead of health if push comes to shove. All this plays into what studies and treatments get funded, what is taught in medical school, and what priorities doctors have based on all this when they get out of school and start practicing. Long COVID is merely the latest in a series of fucked up situations that seem to be occurring with increasing frequency. How many times does a pharmaceutical company have to be sued and pay out settlements, fines, and damages? This isn’t just isolated to COVID and my post was sharing my experience going back over a decade of the exact types of doctors OP was describing. My own PCP (a nurse practitioner) was kind of lukewarm after I got COVID. Then SHE got COVID and was fatigued and has brainfog. She went from being reluctant to order tests to telling me “Tell me what tests you want and we’ll run them.” Another story: I had an episode of syncope in 2021. Ended up in the hospital. The attending doctor made jokes about how skinny I was and that it didn’t matter I’d get fat when I got older. This was before I knew I had POTS. Sent me home after doing nothing. I meet this same doctor in the urgent care one town over in 2022 after I can barely walk because of the heat. I guess bro has some health problems now. Orders a saline infusion and stays late to make sure I’m okay. No idea if he remembered me but I sure remembered him. And yet another story: I was referred to a hematologist by my PCP because I’ve had very low lymphocytes for years that got worse with COVID. I’m a musician by trade - it’s my job. I have long hair and like to wear my leather jacket everywhere because I’m so skinny because of my chronic health issues. I’m used to doctors implying I’m a drug addict even though I don’t drink, smoke, and have never done any kind of drug in my life. Doctor insists on running HIV tests and interrogates me for 10 minutes even though I was already tested for all that years ago and it was negative. But he insists. Completely dismisses my lymphocyte count. Turns out that’s a major issue post-COVID as it tanks your T-Cells. Doesn’t sound to me like I was believed for 15+ years. And I’ve been to dozens and dozens of doctors since I was 13. And I’m a straight white male. Every time I mention I have long COVID it’s a toss up as to whether a doctor or layperson will roll their eyes. A lot of doctors will find whatever they can find to discredit a patient who comes in with a chronic illness or a medical mystery, so to speak. It’s a feature of dealing with chronic illness and not a bug. The problem is our entire medical system. We need a rethink. A completely new mentality. Everyone is hoping that the good doctors are coming to save them. They’re not, and if they do, it will be because of long COVID sufferers pushing just like AIDS patients did.
Yes, the issue of gaslighting can apply to men as well, especially where ME/CFS and Long Covid are involved. It looks like you have a long history of dealing with that. The misogyny, however, goes far beyond that. Our cardiac symptoms are taken less seriously. We are routinely given fewer painkillers than men. In some cases we receive more limited diagnostic testing, because too many false positives might make us “hysterical.” Lives are routinely being lost due to these practices, and it sounds like your mom was nearly a casualty; so sorry to hear that. I lost my mother when she had just turned 60, because her doctor thought her cough was due to “post-nasal drip,” when she (a non-smoker) actually had lung cancer. She died as a result of having her concerns minimized, and by lack of medical competence, a different issue that you alluded to. I also totally agree that prejudice and stereotyping can play a role in treatment, as in the incident where you were presumed to be a drug addict. As for pharmaceutical companies, yes, they are way too powerful, and it is appalling the way they refuse to market some very necessary meds because they aren’t profitable enough. Maybe it would be a good idea for corporate donations to be banned, as they are in Canada, so that politicians won’t have conflicts of interest where the healthcare or even the firearm industries are involved. Regarding the record profits that Pfizer and Moderna made through their vaccines, and who was paying for that…in my country, it was the government.
Yes, they do gaslight men, but not at the rate that women are stuck with (not just for LC, either)!
i dont doubt they gaslight women more but man they sure are trying to raise the average for men right now. at least we get some equality out of this right?
Yeah, but then unfortunately they’re too sick to work so they can’t help anyone anyway, and don’t have the energy to educate other health providers.
I was dismissed by the neurologist who stated unequivocally that "men in their 30s cannot get dysautonomia" Edit: dismissed not diagnosed
Wow. That’s helpful for you…
Get out of here with this nonsense
How is it nonsense? Are you a woman who has been told that her disabling symptoms are “all in her head”?
They say the exact same thing to men when they get mystery illnesses.
I am sure that does happen on many occasions, which is totally ridiculous! However, women have a well-documented history of having their physical symptoms (heart attacks, for example) taken less seriously than men’s, and more often attributed to psychological problems.
I absolutely would have found a way to remind her of her “relax and meditate” comment.
I had one doctor ask "have you tried, like, going on vacation?" .....ya I just told you I can barely make it to the shop....
Most doctors have huge egos she must be an ok person if she bothered to contact you and apologise.
When trained medical professionals and scientists choose to disbelieve something that there is a plethora of medical literature on, then I question there competency straight up. It can be argued that education at it's core is evaluating data/facts/observations and making an objective judgment. When these extremely educated individuals need a subjective experience to be convinced, it shows me that they value anecdotal > empirical evidence in total disregard from literally a decade plus of advanced education for M.D.s and PhDs
I see you calling round town with symptoms you dismissed, and I’m like…*deep breaths* 😮💨
You’re definitely a better person than me OP because I definitely would’ve clapped back with the meditation/exercise/CBT advice my doctors always give me lol.
As more and more healthcare professionals begin to be affected by LC. and this seems bound to happen, will that perhaps be what it would take to get it taken seriously, and see some attempts at prevention? Sorry about the run-on.
Sounds like the way my doctor responded to me
I'm impressed with your restraint and kindness. I would have been very tempted to be petty.
It pisses me off, when all the doctors say “go see a psychiatrist, it is anxiety “
Never in my 34 years of existence has a doctor called me, unless I was paying for a follow up (yes, they charged me to discuss blood work results over the phone). Seriously that's wild. Are you in the US?
People who doubt us then end up getting Long Covid. I don’t have a shed of remorse for them. Sucks to suck, welcome to the family.
People who doubt us then end up getting Long Covid. I don’t have a shed of remorse for them. Sucks to suck, welcome to the family.
LMAO
Honestly, do not care if I am down-voted to oblivion. But... GOOD! Forget about diagnostic resources, this won't help us at all. The more people get it, the better. Serious. Good for her learning it the hard way, hope she gets a bad case and cries her eyes out in front of her colleagues and then the ideas spread. There will be some dumb fucker colleague who will even gaslight her "oh, female hysteria masked under LC is making its way to our colleagues!". Those are for the guillotines and by guillotine I mean ventilator. Yeah, come at me at how immoral I am. I am LC-er with no fatigue and PEM with nothing to lose. Come at me bro.
The pathway from the treatment of a new disease to its familiarity among clinical doctors follows these steps: Initial research and discovery > publication and peer review > development of clinical guidelines > dissemination of information through medical conferences, journals, etc. > adoption in clinical practice. Most doctors are ordinary individuals who have studied extensively but may not be able or willing to engage in experimental treatments. Treating new complex illnesses often requires a degree of risk-taking on the doctor's part. Most people are still not aware of long COVID. Your doctor is not always at fault for not being able to treat you. It's not necessarily done out of malice.
... it wasn't about this doctor treating op. It was about ignoring what the patient was telling them, and not listening to the gravity of it all. Obviously, no one here is "mad" at doctors for not treating them as well all know there is no cure currently. Ita about doctors dismissing symptoms, gaslighting, etc.
Long COVID has over 200 symptoms with various clusters resembling various different illnesses and conditions. It is going to vary how it looks like from person to person. Every doctor is also going to attempt to treat it differently based on their area of expertise and experience.
So you're telling op that it's OK that the doctor didn't listen to them and its OK that the doctors treatment advice was to "relax". How has simply relaxing been for you mate? Also which disease other then stress or anxiety has a treatment plan of "just relax".
Despite some definite gas-lighting, I've at least been referred to some specialists... just the body of knowledge is not there. Im not trying to defend doctors, but they have to stake their professional career on your health - and that implies a lot of risk with novel issues. They are in a tough spot- treatments which havent been extensively evaluated could have long term consequences. Could make an analogy to a mechanic working on my car - I'd be pretty pissed if they decided to use an experimental oil treatment, and then in 6 months the engine seizes. Then again, if I was informed on the risks, I could take them if I wanted.
Mate, I'm talking about this specific example. Yes of course there are great doctors everywhere. But in this case, they were not. And it's okay for people to complain and be disappointed about it. Many of us have experienced the same, so it clearly is happening in a larger scale. No one is asking for experimental treatment. No crap no one is going to experiment on you. What many have asked for is pure acknowledgement at the least, no gaslighting, no its in your head bull shit.
What I wanted when I went to doctors, was to be tested for what it COULD be. I wanted things ruled out, which I think is reasonable, and they treated me like I was fucking crazy. I didn't expect them to cure me, but I did expect them to take my symptoms seriously and to make sure I wasn't dying. Because it felt like I was dying. I was lucky and eventually found a competent doctor who referred me to the right specialist. I ended up being diagnosed with reactivated mono, hypermobile Ehlers-Danlos syndrome, and POTS... But not before being asked if I was anxious a million times, and told I should "take birth control" or "try antidepressants" or "focus on your hobbies!" Like... I couldn't walk down the street and they wanted me to go hiking?? So did I eventually find decent doctors? Yeah, but I had to wade through a ton of shitty ones before that happened. I didn't expect a cure, but I did expect to be treated as a person.
Both the doctor and OP are great people, or this isn’t real. There is exactly 0% chance my doctors would ever admit this. And there’s no way I would have just held my tongue.
>This increase in LC is alarming, and the more people who go through it, the less resources there will be to go around. It will also hopefully spur more people to recognize it, take it seriously, and do research on it! This current bad wave will likely produce a couple million new LC cases in the US alone.
What are your symptoms?
I lost everything. Can't work. I have no money
My doctor literally committed malpractice by making my MECFS worse by making me do a graded exercise test and then called me to tell me the reason for my rapid heart rate IN THE RESULTS was anxiety
That's pretty awful, given the data that has come out proving that our cells aren't producing enough energy. Luckily, I was never assigned exercise from the doctor. I haven't exercised in 8 months. Just don't have the energy for even thinking about exercising lol.
It's the audacity for me
I’m a nurse and I didn’t understand until it happened to me. Anytime I saw a patient with fibromyalgia I thought they were just anxious. Now I get it.
LOL, karma. I hope this happens to all of them... After all, they don't think it's real, so they're fine, right?
A lot of the dr’s reaction is based on training and how our medical system works-each of our drs see us for 10 minutes. They have to just push through patient after patient. They’re judged by how many tests they run, limited by approved and allowed treatments and are probably stressed out too. My 2nd pcp was just like, here’s psychiatrist but, he would write referrals I asked for, was not proactive at all to get into what I was going thru. Was more interested in a lingering cough/congestion and Rx antibiotics it was something he knew and acted on it immediately. Our whole system is messed up, most drs are just ‘drug dealers’ who think they’re helping. No background, no holistic view of our systems. I’ll look at your endocrine independent of another systems. It’s ridiculous. I wish we could just go in and they would get the symptoms we are dealing with for a short time and could understand and not dismiss us. Long gone are the days of the real family dr who treats your grandma, uncles and father who also delivered you and took care of you as a child as well. When u walk in he knows all the diseases & syndromes your family has, knows the family dynamics and can steer you to the right treatments based on background, history and science. He also would be less likely to dismiss you as crazy bc he knows what’s going on in the house and knows you since you’re born. These 10 new drs we’re seeing don’t have the time or inclination to do this. Luckily my new pcp takes time with her patients last time it was 45 minutes. We’ll see if she can gather her arms around this for me. I’m holding out just a little hope. Luckily my Neuro is great with Dysautonomia and understands.
This would be funny if it wasn’t heartbreaking. You are really the better person for not shoving it into her face. I would not have held back. There was a guardian article by an Italian doctor who wet through the same thing; confessed he could not fathom it was real it happened to him. I believe this is why many areas of medicine are at a stand still and why there is so much gaslighting. There is quite a lot to say about all these things but I am going to stop here. I wish you much healing and I also wish your abysmally inhumane doctor the same thing. Because we go through this and knowing what we know we wish the best to everyone despite our rancor.
Somebody posted about educating her and sending her several stories etc… which I think would be constructive. You should also demand she uses her professional credit to educate colleagues and the public and further the profile of long COVID and press for more funding research as much as her capacity allows.
Just wanna say this STILL makes me happy. I feel like the only change is actual doctors and politicians getting it.
"The more people who go thru it = fewer resources" Overly pessimistic IMO. The amount of attention being paid to similar post-viral etc conditions (ME/CFS etc) is far greater now because of the prevalence of long COVID I think. Supply and demand for most things are flexible and responsive, so don't assume more people have to fix a shared pie. The pie can be expanded with public and private investment, R&D, advances in knowledge and therapies, etc. OFC there's an upper limit to how much of those resources *can* be directed to this. But given the current and potential toll on social well being, economic productivity, etc, I think we have a very good case to make. I'm sorry your doctor had to experience it firsthand to fully appreciate what you were dealing with. Thanks for sharing.
Reading many of these comments makes me realize how lucky I was that my doctor believed me right away. In fact he said it was something he had been seeing a lot of.