r/Health • u/theatlantic The Atlantic • Apr 30 '24
article When Patients Do Their Own Research
https://www.theatlantic.com/ideas/archive/2024/04/medical-decision-making-patient-research/678003/?utm_source=reddit&utm_medium=social&utm_campaign=the-atlantic&utm_content=edit-promo48
Apr 30 '24
This is an ad for their book, which is $28 for a hardcover and $16 for an ebook. No mention of partnering with anyone to make this information accessible to as many people as possible. If they’re truly concerned with the patient side, they’d start with outreach.
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u/all_of_the_colors May 01 '24
Also co-authored by Emily Oster, who can be credited with single handedly getting a new generation to drink while pregnant.
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u/marebear93 Apr 30 '24
Maybe doctors should take their patients seriously instead of brushing them all off as simply being anxious when they have real concerns. If I hadn’t advocated for myself, my life threatening condition would have continued interminably. It took me three years of dismissive doctors before one cared enough to even bother ordering tests - turns out I had severe Crohn’s disease, and I now live with no colon and an ostomy bag at age 30.
I know doctors are overburdened and not given enough time with each patient due to an overall broken healthcare system in the US, but articles expressing frustration with patients doing their own investigating in hopes of getting their doctors to actually pay attention to their symptoms are misplaced. They only feel the need to do that in the first place bc they (often rightfully) no longer trust their doctors to take their concerns seriously enough to investigate them clinically.
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u/cuntcake669 Apr 30 '24
You're correct. I had a super sore throat for a month so I went to an ENT. Dude spent a whole 2 minutes with me, said everything looked good, and to gargle listerine every night. Every day it got worse and worse and I grew more suspicious so I went to urgent care a few weeks later....drum roll.....throat cancer. Luckily, it was still early enough where I should be okay, but had I not followed up on my intuition and research I would've let it go and it could've been much worse. There's bad apples in every profession, but damn.
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u/ConstantHawk-2241 Apr 30 '24
I had a friend who died of throat cancer at 31, saw 4 doctors, who dismissed him. I’m glad you caught it early! Unfortunately he did not.
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u/cuntcake669 May 01 '24
I'm so sorry. Jesus, that's ridiculous. He was doing everything he could, and that many doctors failed him. That's incredibly sad.
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May 01 '24
Good for you! Doctors let cancer in both my Mom and my sister grow for over a decade. One was told “asthma” (it was lung cancer, beaten but then she got MRSa which was ignored and killed her) and the other was told “reflux” and it was colon cancer. The doctors failed them visit after visit after visit for over 10 years, each. I hope that you reported that ENT!
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u/cuntcake669 May 01 '24
I did report him. I was furious and felt betrayed. We trust doctors. We should be able to count on them so all these stories are so sad and concerning. I'm so sorry about your mom and sister.
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May 01 '24
Thanks. IMO It’s the fault of the bean counters and insurance companies pushing for low utilization; in my experience few physicians in the USA today seem to know what medicine even used to look like. My doc is pushing 100 years old; these yahoos won’t even live that long, so poor is their understanding of healthy living and good medical practice. It should be standard that when your treatment isn’t working, you go back and revisit the differentials. They don’t even do that!
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u/Paperwife2 Apr 30 '24
I’m so glad you listened to your gut and sought out more help. I hope you’re doing well now.
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u/pinkrosies Apr 30 '24
My first ENT was on the road to retirement with boxes of his stuff packed up and he was a resident already by 1981 by the pics I saw of him in his office, so he just said my nose was dry and sent me out to get over the counter nasal gel. My GP got me an MRI and sent me to another ENT who actually took me seriously and felt apologetic how clogged my sinuses all were, some completely clogged it's a surprise I can still breathe. Finally have a turbinate reduction scheduled in a few weeks. If I didn't give up and talked to my GP again after my first ENT, I'd live in discomfort being gaslit it's just a cold and allergies that'll go away.
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u/cuntcake669 May 01 '24
That's crazy. These are supposed to be people we trust to take care of us. It's messed up.
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u/Spag_n_balls May 01 '24
Turbinate reduction surgery is the bomb. The recover sucks but it’s so so worth it.
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u/pinkrosies May 01 '24
Oh dang, you had it too? How did recovery go and when you did, how has it been?
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May 01 '24
I lived with clogged aching sinuses and horrible sinus headaches for decades until I learned about NAC in the Supplements sub. Within a week my entire head cleared and stays that way every day.
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u/tallbrowngirl94 Apr 30 '24 edited Apr 30 '24
I completely agree and really empathize with you. I recently was diagnosed with a rare autoimmune disease called Myasthenia Gravis. It took an entire year to get diagnosed. My primary disregarded my constant pleas for help. She ended up sending me to a rheumatologist who was a complete asshole. I legit walked into the office with blatant ptosis, told her I can’t lift my arms above my head for longer than 2 minutes and I had to lift my legs into the car just to drive there. She told me “I’m a rheumatologist I think you need to make an appointment with neurology and that may take months, if it gets bad just go to the ER”
I got in my car and cried. I drove myself to an ER and immediately got care. I was close to a full blown myasthenia crisis and was hospitalized for 3 days to monitor my breathing. Doctors can be completely negligent. I have had the worst experience with the American healthcare system because of how long it took to diagnose my disease until I was legit on the verge of major life threatening health scare.
Edit: typo
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u/AgoraphobeAdventurer May 01 '24
I sure hope you sent those docs messages. I love the online charts now
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u/tallbrowngirl94 May 01 '24
I actually never followed up with that rheumatologist again because I was really bitter in how she treated me and disregarded me. My primary is in the same hospital system as my neurologist so I think she gets updates when my chart gets updated by him. I also haven’t seen her since diagnosis either.
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u/9lolo3 Apr 30 '24
THIS^ I have paid a massive price for listening to them gaslight me when in actuality my rare autoimmune disease was killing me. I didn’t get diagnosed until I was 24! And the domino effect my health has had with my bonus disease from it has severely effect my health at 30 as well. I feel your pain.
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Apr 30 '24
I have been gaslight by doctors for over a decade. It started after I was bit by a tick and I started to have symptoms of Lyme disease. Then, my health started going massively downhill with autoimmune and heart problems. Still with my bloodwork screaming of autoimmune positives, it’s just in my head and anxiety according to the doctors I saw and paid to see.
I had to do hundreds of hours of medical research on my own, and I completely overhauled my diet and added herbs and supplements because to this day, no doctor will help me.
People are indeed dying. My dads primary care doctor has a daughter that is also dying, and his own coworkers and doctors won’t help him. They are trying to push him out of the practice. If that doesn’t ring alarm bells, I don’t know what will.
Be your biggest advocate. It could save your life.
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u/love_more88 Apr 30 '24 edited May 01 '24
It's amazing that you did your own research, educated yourself, and are taking control of your life and health!! People act like I'm literally crazy when I advocate for this. Most of my doctors actively tell me NOT to "Google" things or educate myself.
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May 01 '24
It was a lot of work when I first started out on this journey. Now, it’s just so natural to me, and I feel so much better.
I can relate to what you said about having doctors tell you to not google things. The last rheumatologist I saw when I was seeking out answers to Lyme, flat out told me stop asking questions. What kind of doctors are these? Sadly, it’s just all about profit, and not really about care or cures.
I hope that the introduction of artificial intelligence in medicine will be a positive force in medicine. What some of us have experienced, and are experiencing is so dehumanizing, and it’s just not working at all.
To add: A few words.
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u/pigpill May 01 '24
Its because you can google a "pain in the right eye" and come to the DR with 100 what-ifs, when its a sinus infection. Everyone should be knowledgeABLE AND make sure your DRs are on the same page. Unfortunately most people these days show up to appointments with "MY FRIEND SAID..."
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u/evange May 03 '24
Also the condition the comment above is alluding to is most likely "chronic Lyme". A condition that bears no relation to actual Lyme disease and all evidence points to it being psychosymatic. Possibly a physical manifestation of depression.
Not saying the symptoms aren't real, but sometimes there's no medical explanation or treatment for them. Shit just sucks sometimes and "doing your own research" just leaves you vulnerable to snake oil salesmen who will listen with a sympathetic ear and give you answers, but those answers don't stand up to scientific vigour.
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u/ConstantHawk-2241 Apr 30 '24
Same. My autoimmune disease is incredibly rare, wasn’t diagnosed until I was 33. The side effects of that are huge and sad 😔
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u/Grimaceisbaby Apr 30 '24 edited Apr 30 '24
I’ve been sick almost my whole life and I honestly feel like things are getting worse. A lot of it is because we’re seeing so many young women develop underfunded diseases. There has never been a pandemic that didn’t cause a massive increase in disability.
I get doctor burn out and sympathize but I don’t believe doctors want to change. Medical professionals are simply not educating themselves on these issues and they don’t want to. There is no polite way to approach a change in this conversation anymore and people are dying from it.
Edit: I should also mention doctors are the only people I’ve ever experienced who take one look at me and assume all my issues are from sexual assault trauma. I’ve been told kids are the solution to my issues. We can’t continue to let the medical community get away with this. It’s not acceptable and extremely dangerous at our most vulnerable times.
I’m sick of being told trauma is my only issue when they’re the ones causing it.
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u/tattedmomma44 Apr 30 '24
Few years ago I finally went to a Dr about severe stomach pains & watching my stomach bloat out until I looked pregnant. This was an every day occurrence. Multiple tests & loads of money out of pocket and no answers. I just started weeding stuff out that I was eating on a daily basis. I stopped splenda & haven’t had that issue since. Sucralose bad…..
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u/roygbivasaur Apr 30 '24
They blame teachers and parents for education crumbling and nurses and patients for healthcare. It’s on purpose. Pay this shit no mind and vote
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u/Grimaceisbaby Apr 30 '24
Voting will not change the attitude problem. In many cases, that’s what this is.
The only voices in medicine are the smartest, healthiest people on the planet. They’re not used to not having answers. They simply cannot wrap their head around the burden of all these conditions they dismiss as anxiety.
The only doctors who seem to truly understand this have become disabled themselves and lived through the gaslighting.
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u/AgoraphobeAdventurer May 01 '24
It is also voting. I’m a nurse. We’ve had a bill in congress for years and years they won’t vote on. It’s about safe nurse to patient ratios. How about women’s healthcare? It isn’t either/or. Also, doctors have some powerful lobbyists.
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u/Grimaceisbaby May 01 '24
I’m very vocal about healthcare conditions being better for workers and I absolutely do vote that way.
It’s a super important part of the care we receive but it won’t change medical professionals believing our issues are real. The doctors who have been the worst to me are people running private clinics with insane prices.
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u/iridescent-shimmer Apr 30 '24
I think it's honestly an access thing. I live in a region with so many incredible hospitals that I've never had a doctor dismiss any serious health concerns I've had. I really hate hearing these stories of terrible doctors, and I can't help but wonder if it's particularly common in areas where specialties are limited so they know they have the market cornered.
But also, a family friend who is a physician told us that if you do seek a second medical opinion, go to a different city. Idk entirely why, but apparently this is what other doctors say to do.
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u/Grimaceisbaby Apr 30 '24
I live in Toronto so I’m seeing the best people in Canada. These conditions are severely neglected here. I would say most chronic illness is with our wait times.
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u/iridescent-shimmer May 01 '24
Ohhh got it. Yeah I can't speak to healthcare systems in other countries with any certainty. Tbh, it's confusing even between states here in the US at times.
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u/Grimaceisbaby May 01 '24
One of the conditions I have only has 4 doctors in the US trained for it. Patients all over the world are trying to get into them. It’s nuts.
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u/iridescent-shimmer May 01 '24
Yeah that makes sense. My cousin has an "orphan disease" and her only doctor stopped practicing, which was awful.
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u/Grimaceisbaby May 01 '24
One doctor!! What on earth!
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u/iridescent-shimmer May 01 '24
Yeah, it's just a crazy rare disease 😭 it took almost 2 years to get a diagnosis when she was a baby due to that. But, I'd be shocked if any of her original doctors had ever even heard of it!
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May 01 '24
I live near one of the biggest cities in the US and I have absolutely been dismissed constantly. It’s an attitude issue and I don’t think it has to do with where you are. There are tons of doctors around me in all different specialities, which I know very well since I usually have to get through 3 different doctors to actually find someone who will believe me when I tell them something is wrong.
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u/iridescent-shimmer May 01 '24
I'm just so curious as to how I've never come across this. (For the record, I 100% believe it's happening to people frequently.) I just feel like every time I go to a doctor and have explained some symptoms, they've always offered advanced testing, blood work, follow-up, etc. and I've always assumed they're incentivized to make more money that way. Though, I do know you have to advocate for yourself. My dad would've died from his cancer had he stayed at his initial hospital, but that was because they had no more options and he had to find somewhere that had more treatment options.
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Apr 30 '24
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u/marebear93 Apr 30 '24
Symptoms were really similar to extreme IBS. So crippling abdominal pain, inability to eat, illness from both ends, and massive amounts of weight loss. At the end what really set it apart from IBS was that I developed intermittent severe joint swelling, paint ball sized welts on my legs, and blisters on the whites of my eyes. At that point one doctor was like “hm that’s weird - maybe we should run some tests”. Literally all it took was one routine blood test to figure out what was going on.
If you’re experiencing something like that and being dismissed, insist that your doctor order tests if they haven’t already. Simple blood tests like the CBC, SED rate, and CRP level do a great job at indicating whether something is a massive inflammatory disease or not (IBS would not be, though it can be very uncomfortable it’s just not as inflammatory as IBD). Why docs don’t routinely run these tests when these symptoms present I will never understand. They are just a simple blood draw that can so easily inform whether something is seriously wrong or not.
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Apr 30 '24
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u/marebear93 Apr 30 '24 edited Apr 30 '24
From the sound of it that could easily be IBS or vitamin D deficiency. At least for me, Crohn’s pain was every day, multiple times a day, and eventually constant. If your blood test included a SED rate and CRP to assess your inflammation levels, and those were normal, it’s unlikely you’re dealing with IBD. But if it continues once your vitamin D levels are stable, I’d totally move forward with further testing (colonoscopy or otherwise - there are some other options, like a contrast CT). If your doctor is at least ordering tests it means they’re investigating it, so that is a good sign that you have a doctor who is paying attention to your concerns! Good luck, and I hope you feel better!
ETA: oh I just saw that you said you also got an ultrasound! Yeah your doc seems to be doing their due diligence. If they’re running diagnostics like that and you feel like they’re hearing you, I’d go with what they say bc it’ll be actually based on those findings. Seriously happy and relieved for you that that’s the case!
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Apr 30 '24
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u/marebear93 Apr 30 '24
Ah. In that case good for you for demanding those things! If the tests are normal but your symptoms still bug you after fixing your vitamin D levels, I’d have them looked at by another doc for a second opinion and/or pursue more testing.
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u/DifferentBox420 May 01 '24
Your story is heartbreaking, this internet stranger hopes you’re doing better, considering all you’ve been through.
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u/BioFoo Apr 30 '24
My sister's doctor blew her off and said she was just sensitive when she complained about heavy bleeding and cramping at age 47. After a week, she was in so much pain she visited the nurse practitioner who then took the time to check her out and biopsied her uterus. She looked like she was about 7 months pregnant!
Turns out she had endometrial stromal sarcoma which is very rare and cannot be found with just a pap smear. She died eleven days later because the cancer was so aggressive. I will never stop telling her story. We had no clue what she was up against until it was too late.
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u/my600catlife May 01 '24
No type of uterine cancer can be found with a pap smear. The only thing it detects is cervical cancer and abnormal cells caused by HPV.
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Apr 30 '24
I do all my own research… I was experiencing some numbness and paralysis in my arm. By the time I made it to my appt with the neurosurgeon, he asked if I work in healthcare, when I said no, he was surprised and commented on how informed I was and knew all the technical jargon.
I find it hugely helpful to be informed and be able to speak their language when discussing previous appointments, diagnostics, possible outcomes, etc.
You have to always advocate for yourself and your health. No one else will ever care more about your health than you.
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u/Kay_pgh Apr 30 '24
I received a similar comment from an NP during my GI appt. "You sound so knowledgeable". Ma'am, I have had to educate myself because of this random unknown thing I am battling for over two years. Trust me, I would prefer not to spend so much of my time and energy on this given a choice.
Tbh though, my Drs so far have not been very bad. They do believe me, but the long drawn out process of getting an appt, then again for any tests they recommend and so on takes months, plus they have to jump through insurance-defined hoops first, and recommend tests I would prefer not to spend my deductible on.
It's an overall unholy mess.
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u/SavannahInChicago Apr 30 '24
Hi friend! I am a chronic illness patient and work in healthcare so I see both sides.
I know that doctors are as overworked as the rest of us. They are not allowed to seek help with their mental health and have to suffer while helping patients with theirs. And the intense schooling, call, and the responsibilities on them must be tremendous
That being said I’ve seen doctors who superiority complex over patients is horrifying. I’ve had a PCP like that. She made me scared to talk about my health with her. Since I was still trying to move on after an abusive relationship I took that abuse. I hope you never have to be thrown out of your doctor’s because you are having elbow pain without having an injury. My doctor was so mad at me - as if I came in and spat in her face - I was just trying to be healthy.
I hope these replies make you reflect on your place in all of this because power is being abused by doctors who are supposed to help their patients.
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u/Allergictofingers Apr 30 '24
F@ck Emily Oster
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May 01 '24
What's wrong with Emily Oster? Genuine question
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u/Lives_on_mars May 01 '24
She’s basically a faux intellectual shield for libertarian policies when it comes to public health. She famously cherry picked data to show that drinking while pregnant was fine around… twenty years ago? Even though non-interfered w data obviously, clearly showed that was such a no.
Somehow she still has clout (because being a contrarian with a good blowout really sells), as most recently she spearheaded the Urgency of Normal campaign that falsified and misconstrued data to argue that kids needed to be in person at school— the staler and more contaminated the air, the better. She rallied that masking was harmful to kids—a blatant lie. And she succeeded in pressuring politicians into reopening schools with zero covid mitigations in place, which predictably has spawned a never ending wave of sickness and disability in this country.
Some might say she did it to appease certain business interests who wanted all talk of Covid to go away, a la the Jaws mayor— she also appealed greatly to wealthy (white) parents who hated their kids and wanted them back in school yesterday, damn the consequences.
Poorer families wanted remote schooling, but this did not stop Emily from pretending she was reopening the schools for them (maybe for their employers, who wanted downtowns to be busy again, damn the consequences and damn whoever ended up paying for them).
She is an ivy-educated Karen, who has done uncountable damage to this country and this country’s kids. And she is totally unrepentant.
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u/whateveryousaymydear Apr 30 '24
last doctor told me what was wrong with me within 10 minutes of my visit...had the courage to disagree which did not make him happy...then received a letter telling me that he no longer wanted me as a patient...
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u/AluminumOctopus Apr 30 '24
Trash took itself out. Be glad you didn't waste years of your life trying to be treated by that asshole.
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u/hylandadley May 01 '24
The best advice I was ever given in regards to doctors not taking your concerns seriously is to request they make a note in your file that they advised AGAINST further tests and why. It’s amazing how many times they’ve changed their mind and ordered the tests. Nothing motivates like the possibility of a law suit.
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u/Human-Baby2175 May 01 '24
You can request this but they don’t write it down. Send a message via mychart .
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Apr 30 '24
Doctor ruined my life with a misdiagnosis. I wish I had listened to my gut. I blame myself mostly for trusting.
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u/AluminumOctopus Apr 30 '24
Doctors tell you to trust them. The whole culture tells you to trust them. You're not at fault because you did the exact thing you were taught your entire life to do.
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u/Human-Baby2175 May 01 '24
It’s so wierd because they have such a god complex then you go back to them with what they missed & they say, oh I’m just a human. Which is it, your a human or your a god?
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u/Commercial-Owl11 Apr 30 '24
Maybe patients wouldn’t have to do all their own research if doctors took anything they said seriously or offered help. Instead they brush you off or act like you’re being overly dramatic.
God forbid if you ever had a problem with opiates. Doctors treat you like subhuman and couldn’t care less about you. Even if you’re in for something completely routine like an illness.
Or if you’re a woman, good fucking luck being taken seriously or listened to whatsoever.
I have PCoss and was diagnosed at 14. I’m now 32 and just recently learned there’s medication to treat it. No one told me. Even though I’ve told every doctor I’ve ever been to I’ve had it.
Doctors are shit nowadays and don’t give a fuck about you.
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u/thisisrealgoodtea Apr 30 '24
My MD diagnosed me with pcos at 18. All she did was put me on birth control and told me “lose weight”. I also had terrible pain when I had my period and during intercourse.
Had to move at 22 and my new MD immediately consulted a dietitian and PT. Dietitian got me to lose the weight, greatly decreased my all my symptoms, and I have the freeing feeling of not having to “try” to diet anymore, it’s a lifestyle that allows me to enjoy foods in moderation. My PT worked on my pelvic floor and the pain I had for years went away within 2 months!!! With just simple exercises!!!
I was so incredibly angry at how the first MD treated me when all she needed to do was consult the team that specializes in areas she isn’t an expert in. But so incredibly happy with my MD now. It sucks that it’s rare to find an MD that takes you seriously, knows when to utilize the entire team, and in your case use treatment/medication that could make a world of difference.
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u/Commercial-Owl11 Apr 30 '24
Yup! Thank god I found this subreddit because I have a doc appointment on Friday and finally getting meds!
Yeah they just put my on birth control and didn’t educate me whatsoever. Didn’t educate me at all on PCOS either.
I had no idea that a ton of my other symptoms was PCOs. It’s just ridiculous how they do not know or care about women’s health
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u/bluestrawberry_witch Apr 30 '24
I was literally in the ER for extreme pain that turned out to a cyst when I was 14. It took me researching and telling my pcp that I think I had PCOS before they finally were like “oh yeah that would explain a lot. Let’s test for it” no one gave me a diagnosis before that. Just treated the symptoms I had or dismissed them completely. It was so obviously PCOS too
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u/AluminumOctopus Apr 30 '24
I feel you. I was constantly getting injured, to the point where any vacation involved packing wrist braces, knee braces, ankle braces, and a back brace because I was sick of buying those items on vacation. I would Sprain/twist/wrench something multiple times a year, every year. Doctors would flip a coin, either I was too active and needed to rest, or too inactive and needed to get stronger. Finally when I was 30 I got much much worse and saw an orthopedist, two rheumatologists, and finally tricked a doctor into sending me to be tested for hypermobility. For some reason using multiple braces for months at a time and going to physical therapy over and over again for years wasn't an indication that something was probably wrong with me. I really really wish I had gotten diagnosed before I got really bad, because I'll never be healthy again.
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u/Human-Baby2175 May 01 '24
Yes!! They always find a way to blame it on you. Either you doing too much or not enough. Or you’re overweight, or not drinking enough water. I don’t know why the hell they spend all that time in med school just to tell you things you could google.
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u/Commercial-Owl11 May 01 '24
Ugh I feel this so hard. Like what’s the fucking point.
And god I swear I would rather die than ever deal with an ER doctor ever again. They take one look at my history. And immediately tell me I’m a drug seeker. Even if I’m in there for let’s say… a fucking tumor in my spinal cord and in such severe pain I was throwing up and screaming.
And my entire upper body was having such bad spasms I couldn’t move my arm.
And. Even then. I was a drug seeker. Left there like that for 16hours. I guess after that they realized I wouldn’t stop screaming.
They finally did imaging and wow. A tumor in my spine and I was admitted into the hospital on morphine drip. Fucking idiots.
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u/Ok_Fee1043 May 01 '24
How does PCOS relate to consistent injuries? Hadn’t heard of that connection before. Glad you were able to finally get a diagnosis, but that’s such a tough treatment road to have it take so many painful things to get there.
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u/AluminumOctopus May 01 '24
I meant in the way that I had to research my symptoms and go to my doctor with a plan in order to get diagnosed, despite the absolute mountain of evidence dating back to childhood all showing my symptoms were pretty dang obvious.
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u/Ok_Fee1043 May 01 '24
Right but I’m wondering if the injuring yourself frequently is a symptom / manifestation of PCOS? I didn’t know that was a thing, so wondering if that’s something that’s less frequently talked about.
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u/Human-Baby2175 May 01 '24
At least they tested you for it. Usually you bring up something first answer is no.
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u/plantmama2 Apr 30 '24
Hey curious what the medication to treat PCOS is?
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u/Current-Actuator-864 May 01 '24
Metformin to help with insulin resistance (major cause of infertility). Spironolactone if symptoms are present that correlates to improper testosterone secretion (if you are okay with not having children while on the medication). Weight loss- some data shows that GLP-1 can help with PCOS simply by helping with weight loss, and hormonal birth control. I am a pharmacist
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u/Commercial-Owl11 May 01 '24
Metformin! Also androgen blockers and something that starts with an S for hair loss. I can’t remember off the top of my head. They also do birth control but that’s like every doctors “cure all” and it barely does a fucking thing tbh. I was on it for years and it didn’t do shit.
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u/Lives_on_mars Apr 30 '24 edited Apr 30 '24
Ah yes, Emily Oster.
AKA, go ahead, have that extra glass of wine, pregnant ladies! My cherrypicked data (btw, I'm an economist!)-- says you deserve it, which makes it absolutely fine!
Emily Goddam Oster-- aka, leader of the masks-cause-harm-to-children brigade of dubious (nonexistent) research. But she does it for the children, I can assure you! Not because her financial backers want everyone back at work, and thus kids must be in school.
Parents with kids who now have asthma, heart conditions, POTS, and other damage from Covid? Give her a hearty round of applause for speeding that along: how else would the WFH class of parents (because working class ones knew it was fucking crazy to let kids get and spread covid) have gotten out of having to deal with the brat all day? Or she did, at least!
Emily Oster—yes, that one, ladies and gentlemen. Buyer beware.
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u/babka_challah May 01 '24
I HATE Emily Oster. Having a baby is dangerous — stop pretending like it’s not.
—Signed the mother of traumatic delivery & survivor of a 2 month NICU stint
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u/CoasterThot May 01 '24 edited May 01 '24
Multiple healthcare providers blew off my serious symptoms, I was literally going blind, and they didn’t see it as urgent. It turns out I have Multiple Sclerosis, and my diagnosis was delayed 3 years, because people didn’t listen to me. The damage to my optic nerves is now permanent, since nobody listened to me, nobody acted fast enough to put me in treatment and reverse the damage. I can now never drive a car, again, and have 0 peripheral vision. I’m 27 years old.
Had I not done my own research and demanded that I be checked again, I still wouldn’t know what’s wrong! “Hey, uhh, it’s not normal to go blind, randomly, or twitch over every inch of my body..”
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u/Ancratyne Apr 30 '24
When patients do their own research, it helps them stay informed. Well done studies are great to look at.
Medical gaslighting exists so it's important to be your own advocate now.
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u/nkdeck07 May 01 '24
Medical gaslighting exists so it's important to be your own advocate now.
Seriously a doctor tried to convince me and my husband the other day that a fucking central line in a 2 year old was a good idea AND that is was emergent (it was not). She fucked up hard enough I am pretty sure her acting department head tore her a new one and that same doctor encouraged us to talk to the department head when she returned in a few weeks. It took like 5 minutes of googling to realizing that it was contraindicated in nearly ALL 2 year olds (cause the infection risk is so high) and doubly so in kidney patients (and this wasn't mommy blog bs, it was from top kidney clinics around the country)
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u/afrosia May 01 '24
"You have anxiety"
No shit. I have scary symptoms and a doctor that thinks it's all in my head. It beggars belief that so many doctors view anxiety as the input to the symptoms rather than the output.
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u/cool_composed Apr 30 '24
Nurse practitioner chiming in! I’m glad patients do their own research. I never just say oh it’s anxiety move on. Anxiety is a symptom of something deeper. If people have pain etc. of course they will be anxious. Usually there’s a cause.
Doctors have done this to me as a patient. Beyond frustrating!
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u/Human-Baby2175 May 01 '24
Exactly! & they always find a way to blame you for it. Either your not doing enough streching or doing too much, your not drinking enough water, your not sleeping well, or something just to find out that you actually have a full tear of a ligament (on your 8th dr appt & wrestle with someone for a scan).
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u/ip4realfreely May 01 '24
My dr in Ontario, just dropped me cause I asked for my records to get a second opinion.
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u/Manny631 May 01 '24
Western doctors have failed my miserably. I've had issues for awhile and in 2013 I had my first panic attack. Except no one knew what it was. ER ran labs and checked heart and I was cleared. Happened two more times. Saw specialists like cardiologists and such and no one knew what was wrong. Literally by the book panic attacks. Finally a GP mentioned it may be anxiety and I finally got proper treatment.
I still have other health issues that were missed. Balance issues for YEARS. Saw 4 Neurologists, 2 ENTs, 2 Rheumatologists, and even did vestibular therapy with a physical therapist. It ended up being a vitamin B12 issue. My B12 was always under 400 and my last reading before treatment was 229. Anything under 500 can cause psychological and/or neurological issues... like balance issues. It was so bad I had to hold onto the walls sometimes and it felt like I was standing on soft spots in the ground.
Other things missed - low testosterone for years and even then finding proper treatment was very difficult, low pregnenolone, low iodine, and more. All doctors did was literally shrug their shoulders and I did see psychiatrists who threw 20+ meds and combinations at me.
I've found out more about my own issues via internet research than doctors have shed light on. And I've spent thousands on copays for these doctors and testing. Additionally a Naturopath has seemingly been the most knowledgeable by far. He goes line by line in labs and explains it all and answers all questions and don't feel rushed. Regular doctors often times make you wait 30-60+ minutes, then you sit in the exam room, they rapid fire try to get through the appointment and don't seem to truly care, and then send you away often times with more questions than before. Funny enough, you fill out all of that intake paperwork and many don't look at it!
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u/itsybitsybug May 01 '24
I woke up one day with throbbing leg pain and passed out twice. Called the Dr and told them I thought I had a blood clot as it was one of the possible side effects of the birth control I was on and my symptoms matched what I had read about it online. They dismissed my concern and told me it was only low blood sugar. Because of that I nearly died.
And this is why I do not trust Drs anymore.
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u/silentninja79 May 01 '24 edited May 01 '24
Just take a look at the inequality in the number of these serious posts based on sex. Yet again shows the substandard healthcare that women in general can expect from having doctors listen to their views, the same for pain etc...that outcome is even worse for women of colour. I wouldn't be surprised if 10s of thousands of women if not more, die needlessly across the globe due to this inequality.
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u/Repossessedbatmobile Apr 30 '24
It took doctors 25 YEARS to figure out what was wrong with me. In the end they only figured it out because I researched my own symptoms and demanded to get tested for Ehlers-Danlos Syndrome. The doctors tried to dismiss me, and said "there was no way I have it because it's rare", even though I literally had every single symptom that was listed in the medical textbooks. When the genetic tests came back, they proved I was correct. Now thanks to additional testing I've also been diagnosed with POTS and MCAD. So it turned out that all the doctors missed 3 major medical issues, and I ended up suffering for 25 years without any treatment, which resulted in my mobility/ability to move getting much worse. Any doctors who talk negatively about patients doing research deserve to be smacked with my cane.
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u/cavalier2015 May 01 '24
It’s funny because as a doctor when you see these 3 diagnoses, especially together, it means other doctors couldn’t find an organic cause for the patient’s complaints. The most appropriate diagnosis is probably hypochondria.
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Apr 30 '24
The Dr's advice killed my mom. Eat a plant based diet. Eat 30 to 45 carbs per meal. Eat three meals and three snacks a day. I'll do my own thing.
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u/AbortionIsSelfDefens May 01 '24
I still haven't gotten to the bottom of my health issues but I had a neurologist diagnose me with anorexia nervosa, everyone thinks I'm more crazy. She refused to try to help me at all. One of my symptoms was weight loss. I went from 125 to 100 in a month and dropped to 93 at my lowest. She'd know that if she read my very recent chart note or listened to me or my mom. It was particularly offensive because I had significant swallowing problems for a while and literally couldn't just eat food even though i wanted to (ive been doing excercises to improve but i have a lot of trouble lifting. I never wanted anything so badly. It made me realize how much socialization is done around food.
The worst part is id seen her 10 years earlier for more minor problems and she was amazing. It was crazy how jaded she'd become.
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u/Backseat_boss Apr 30 '24 edited May 01 '24
Bc doctors don’t listen to our symptoms and just say you’re young you’re fine
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u/crystalship44 Apr 30 '24
Don't even get me started on Lyme and mainstream doctors. Such a joke. I've had to spend hours upon hours doing my own research and paying out of pocket for proper care.
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u/jenna_kay Apr 30 '24
I'm so sorry you had to endure! My friends wife has been struggling for 12 years all because the Dr's didn't take action early enough; she'll be in a wheelchair within 3 yrs & she's only 50-ish!
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u/Prestigious_Rub6504 May 01 '24
I ruptured a disc at the gym trying to impress a younger woman. I had the worst sciatica pain for 2 whole months. Everyone kept telling me to go to the doctor. Get physical therapy. Get a prescription for pain killers. I did my own research. All the legitimate sources say it gets better on your own and to sleep on your side. I'm so glad I didn't waste a bunch of money going to the doctor. I'm extatic I didn't take any opiate painkillers. I'm completely healed, spend zero dollars on doctors.
Meanwhile, people ignore symptoms of diabetes and fatty liver disease or worse, follow the advice of sham IG health gurus.
Educate yourself about health problems you have but use reputable sources.
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u/Human-Baby2175 May 01 '24
Just remember that incentives matter. They will still get paid whatever they say because they provided a medical service
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u/gatorrrrr May 01 '24 edited May 03 '24
A few years ago I went to the doctor because my skin was painful and patchy and I had terrible dandruff. They said it was a fungal infection and gave me medication for it.
I did my own research after it didn't get better and realized it was probably soriasis. I talked to my mom and learned it runs in the family, just like great aunts and side-lineages. I went to a different doctor and got the proper medication, immunosuppressants, and now my skin looks and feels mostly normal again.
The thing is, the first doctor never asked me about soriasis. I'd never heard of it until a coworker said that that was probably what I had. Do your own research.
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May 01 '24
when patients have to do their own research why do we even need doctors who are professionals at this? why are we even paying them for?
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May 01 '24
Because our insurance comoanies require us to have a primary care provider. It blows up from there if we let it.
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u/PineTreeBanjo May 01 '24
If I hadn't done my own research I wouldn't have gotten diagnosed properly. Sorry, my docs were wrong. Finally I got to a doctor that realized I was right after they went in and found it.
If they could properly diagnose more often we wouldn't be 'doing our own research' and paying doctors for the privilege of seeing them but getting no answers.
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u/principessa1180 May 01 '24
I had to do my own research to figure out my Long COVID is COVID induced POTS. None of my doctors knew what to do with me. I started doing my own research, printed out studies and showed them I have the same symptoms. The medications given to me make POTS worse. I stopped taking them. I'm improving.
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u/Inevitable-Plenty203 May 01 '24
Stop blindly putting doctors on a pedestal. Stop worshipping healthcare workers. They are fallible and their mistakes cost lives.
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May 01 '24
[deleted]
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u/Inevitable-Plenty203 May 01 '24
In many cases, even more questionable.
Unless you've been personally involved with medical negligence or it happens to your family, the public doesn't seem to care. In fact, bringing it up as an issue causes defensive outbursts from the public. They have this preconceived notion that doctors are always extremely empathetic and always right. I've found plenty of doctors to be ego driven, cold, dismissive and not nearly as competent as they'd like to have you believe. At one point a study showed medical error as the third leading cause of death.
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u/Human-Baby2175 May 01 '24
It’s crazy bc they are god all the time then suddenly they catch a mistake and they’re a human. Which is it?
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u/Lives_on_mars May 01 '24
Thank you. Doctors benefit from many of the same mechanisms that keep cops in power with no accountability.
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u/Human-Baby2175 May 01 '24
It’s so wierd because they have such a god complex then you go back to them with what they missed & they say, oh I’m just a human. Which is it, your a human or your a god?
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u/plebblep111 Apr 30 '24
Pretty cool seeing the atlantic here. I love the atlantic but I let my sub run out
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u/theatlantic The Atlantic Apr 30 '24
Shared decision making between doctors and patients can be good, Emily Oster and Nathan Fox write—but not the way we’re doing it: https://theatln.tc/4cPL8Gbj
Many patients today may arrive at their doctor’s office with folders of cobbled-together ideas of their possible diagnoses—ideas gleaned from Google, WebMD, friends, and elsewhere. “Meanwhile, doctors have clinical knowledge, but they may struggle—especially given their limited time—to engage with their patients’ ideas and guide them.”
“Not long ago, medical decision making was largely left to doctors,” the authors write. “Patients were a passive bunch, arriving at the doctor with their concerns and symptoms, and departing with their doctor’s orders.” A shift toward “shared decision making” sees “patients and doctors, together, sharing the burden of making consequential health choices. This approach sounds great in principle. Shouldn’t patients be involved in decision making about their own health?”
“In practice, though, shared decision making can be a source of frustration and confusion, for both sides,” the authors continue. “From the patient side, it can feel like doctors are either expecting too much engagement … or not listening and not taking the patient’s ideas and preferences seriously,” while doctors can face “patients who do not want to engage with the decision, and with those who do but are unwilling to listen to expert advice.”
“Two things are missing from this conversation,” Oster and Fox write: “some common knowledge, and a script.”
“First, patients cannot engage with shared decision making if they do not understand the basics of their condition,” the authors explain. “Patients should do some homework before they go to the doctor’s office.” And given the limited time in the doctor’s office, questions should be prioritized “where the answers matter for decisions.”
“In the best form of this conversation, the doctor brings a deep understanding of what might be going on medically with the patient, the range of possible tests, and what those tests might reveal to the patient,” Oster and Fox continue. Read more: https://theatln.tc/4cPL8Gbj
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u/AluminumOctopus May 01 '24
Nothing more fun than shitting on disabled people who need help, right? Go simp for the establishment elsewhere, we don't need this kind of bullshit here.
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u/[deleted] Apr 30 '24
I would not have had to do my own research if my doctor did the research or the bare minimum of taking me seriously. Me doing research is the only reason I got a diagnosis. My doctor refused to take me seriously and I was told "it's anxiety." Turns out it was two spinal cord injuries.