The first point is by far the most important. The US healthcare system (and probably others) is an unfeeling machine and you have to treat it that way. Ask for earlier appointments, cancellations, and referrals to other specialists. Navigate it as if nobody knows (or cares) what you're up to. Doctors tend to only exist within their silo and it's often on you to request a different type of doctor or even another one of the same type. Be a pain in the ass, your survival may depend on it.

Personal story: I was having trouble using my left arm. Like, couldn't lift or type or do much of anything with it. Was told it was a pinched nerve by physiatrists and orthopedists, despite having no pain. Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex. We were able to move quickly and get me on a treatment plan which has bought me a lot of time. Had I not advocated for myself, it would have probably mutated into a much worse type and killed me soon.

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Loughla 3 hours ago | parent | next [-]

I had to quite literally sit in a doctor's office and make a public nuisance of myself to get a referral for a family member to a specialist for cancer when the regular doctor said it was just back pain. Then I drove the 2 hours to their office to get the appointment. It was lymphoma.

People can't ignore you as effectively if you're in their physical space. When it comes to your health or the health of your family, do not back down. Doctors are used to nuts who googled the symptoms or joined a Facebook group and have all the answers already. Make it clear you have NO answers but NEED them asap.

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helterskelter2 2 hours ago | parent | next [-]

I've had similar experiences. It's kind of terrifying, actually, you have to walk the line of being annoying enough to get what you want but not so annoying they completely ignore you.

One of the things I've learned is to apply the Socratic method, preferably in front of their colleagues if they try to brush you off. Also, if you've got scary symptoms, demand they write down what your symptoms are on your record and why they aren't concerned, then demand a copy of all relevant records (it's your property) -- this often gets them to reevaluate your risk in terms of their career.

Worst case scenario, you can make up medical history. I had a family member pass recently from colorectal cancer. They had symptoms but their PCP kept insisting they were too young. My family member suddenly "remembered" her aunt died of CRC when she was a kid. This got her referred to a gastroenterologist, and they found out she was stage 4...after her PCP delayed her diagnosis for like a year. She actually had grounds for a malpractice suit but who's got the energy or money for that when they're fighting stage 4 cancer?

Also, know your state's agency responsible for policing health insurance. This family member's insurance company routinely tried to deny life saving procedures, but a call to the right govt agency set them in line each time.

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xtracto 2 hours ago | parent | prev | next [-]

This is something I don't understand of the US and other "developed" countries health systems.

Here in Mexico, i can get to doctoralia and make an appointment with a high specialist , like a Vascular Neurosurgeon. All by myself. The first visit will to maybe $200 usd (and that's very high) and normally it's a week away at most. No waiting on the private health option.

Of course if you go with public health, it's a disaster and a shame.

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rootusrootus an hour ago | parent | next [-]

For most things, I can do the same in the US. It has a lot to do with your insurance provider. E.g. UnitedHealth is pretty well known for requiring pre-authorization for every little thing. But BCBS, which is who I have had most of my adult life, is far more relaxed about it.

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madrox 2 hours ago | parent | prev [-]

What other countries describe is the equivalent of your public health system. If you're willing to pay out of pocket, like you describe, you can have a similar experience in the US. However, that can get expensive quickly since you normally don't have just one appointment with a vascular neurosurgeon.

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prmph an hour ago | parent [-]

But the thing is that paying out of pocket would be very expensive in the "developed" countries.

The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price. The quality may not match the very best care available in the rich countries, but in many cases, it is adequate.

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teiferer an hour ago | parent [-]

> The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price.

What is a "reasonable price"? Relative to a rich country, the price may be low. But relative to the average income to common folks in that country it is likely just as expensive as a comparable private option is in a rich country. Apples vs. oranges.

Iow, you are describing the perspective of a rich person in a poor country. I don't think a rich person in the U.S. (top 0.1 percentile, let's say) minds the health case costs in the U.S. either.

	▲	prmph 36 minutes ago \| parent [-]
		The average white collar or knowledge worker in my 3rd world country can usually pay for mid-tier private medical care, including specialists, without any problem. Of course the top tier private hospital and specialists can be pretty expensive, but is not that expensive to avoid the public/government health system.

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teiferer an hour ago | parent | prev [-]

All the best for your family member!

> Doctors are used to nuts who googled the symptoms

When you were there, did you have anything else to come with than the symptoms of your family member? In other words, how did you look different to the doctor than somebody who just googled their symptoms? (Or, to put it differently, without meaning disrespect, in which way were actually different from cases you referred to in the above quote?)

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madrox 2 hours ago | parent | prev | next [-]

I have a similar but more benign story, and cannot emphasize enough how correct this comment is. I had severe abdominal pain and vomiting. My PCP told me it was GERD and I should lose weight. Two days later I was getting an emergency cholecystectomy because my gall bladder had necrotized.

A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.

If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.

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onlyrealcuzzo 2 hours ago | parent | prev | next [-]

> Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex.

Oh my. I did not expect this.

I'm glad you caught it early, and I hope you have the best outcome you can, and thank you for sharing your story.

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xmprt 2 hours ago | parent [-]

If you've dealt with the American medical system then stories like this aren't very surprising. I'm not going to act like this is everyone's story (a lot of people have pretty smooth experiences) but it happens a lot more often than it should.

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SoftTalker 2 hours ago | parent [-]

It's not unique to America. Specialists are in high demand everywhere and seeing them means you have to pass through a screen of generalists who first rule out all the common explanations for your symptoms.

But GP's point is otherwise true. It's just a job to them. They see dozens of sick people every day. There's no way to be empathetically engaged with all of them or really any of them and still be effective. It's not personal, and they aren't ignoring you. You're a bug report in their ticket system. Understand that and you'll be able to deal with the system more effectively.

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sippingabonedry 2 hours ago | parent [-]

If you have halfway decent insurance in the US you do not need a referral to see a specialist.

The exception to this rule is if you are in an HMO like Kaiser which force you through "level one support" (your GP) or if the specialist is so busy they require a referral to screen out the social media schizos.

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astura 2 hours ago | parent [-]

However, many (most?) specialists won't see you without a referral unless they are self pay.

	▲	cj 2 hours ago \| parent \| next [-]
		Whether you need a referral typically depends on your insurance plan, not the doctor you want to see.
	▲	SoftTalker 2 hours ago \| parent \| prev [-]
		Yes. They don't have time to deal with hypochondriacs who just show up. Unless you are an existing patient asking for followup, or have a referral, many will not schedule you or will maybe give you an appointent six months from now.

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kokon 2 hours ago | parent | prev | next [-]

Been gone through something similar. It's important to be persistent. My PET-CT was originally scheduled for 6 weeks, and they couldn't get it sooner. I had to call every imaging labs within 50-100 miles radius, eventually got one within the next couple of days.

The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it. I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.

The treatment sucks, but small price to pay considering I can spend more time with my family.

	▲	cj 2 hours ago \| parent [-]
		> I was able to get ahold of the chief surgeon at UCSF And people like this are typically not that difficult to get in contact with via email. Hell, I’ve successfully used LinkedIn to get an appointment when calling the main office didn’t work. Get creative and trust no one.

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marricks an hour ago | parent | prev | next [-]

I became close friends with a doctor over the past couple years and she's an extremely caring and diligent person. Truly wonderful went into it for the right reasons.

By all accounts is amazing to her patients, but god the amount of work thrown at a PCP and the deluge of emails and just how little life the system gives you (at least while in residency, I guess I'll see what happens after)... like I have to imagine our care could be so much better if we weren't trying to optimize the system and had more resources.

My mom is a teacher and it's similar there, she loves kids so much and after a few decades she absolutely cannot wait to be done. She was excellent at the start of her career and got kudos from absolutely everyone but now she's just getting by until retirement because she can't take it anymore.

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Aboutplants 2 hours ago | parent | prev | next [-]

The number one thing I tell anyone who is going through any sort of medical situation that requires extensive care, you have to be the biggest advocate for your care. If youre not comfortable doing that, then find a loved one who will stand by your side and be that person. Healthcare is a business and you need to treat it with the same vigor you tackle business problems because your issue is a business problem to them.

Don’t forget, Doctors are just well read mechanics

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mmoustafa 3 hours ago | parent | prev | next [-]

I had a heart condition (myocarditis) recently after a viral episode, despite the obvious prognosis the ER doctor treated me for a heart attack instead without consulting a cardiologist which sent me to the ICU.

I should have mistrusted the doctor and trusted the AIs more, unless they gave me compelling reasoning. Don’t give up your decisions to anyone, incompetence is abound.

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elmer2 2 hours ago | parent | prev [-]

It's worse everywhere else. There are no specialists in all of the government-run systems I've dealt with and at some point, you really have no options left.

Canada introduced MAID for this reason.

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louthy 2 hours ago | parent | next [-]

> It's worse everywhere else.

You’ve dealt with every health system on earth as a patient?

> There are no specialists in all of the government-run systems

This is completely inaccurate. Every government run system has specialists.

Everything you have said is incorrect.

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computerdork 2 hours ago | parent [-]

It's an over generalization but think this person has a point. The US health system has it problems (cost!!), but have read that since it's money driven instead of a government service, compared to other healthcare systems, it's often got a shorter wait time to see a doctor. This makes sense, a lot of students want to become doctors in the US, because they can make a lot of money

	▲	InexSquirrel 2 hours ago \| parent \| next [-]
		I feel like the >(cost!!) factor can't really be overstated there. IF you have money then you can get healthcare, if you don't, then you're out of luck. It's a massive gate which needs to be passed, and if you can't pass, then you're locked out with no alternative. That doesn't sound great to me (read: broken), because it means its not evenly accessible across your society. I wouldn't count that as a good system to be honest. I have limited experience with the New Zealand and Japanese medical systems, and from a similarly arms-length engagement with them, I think I would prefer them over everything I've read about the US system. You still have the same issues with having to advocate for yourself, but you can at least get access to good healthcare across the board - and if you go private (which as a late 30s / early 40s guy, cost around NZ$60 / month), you can get access to care at private facilities much faster than via public. It is most definitely imperfect, but it _is_ designed to be accessible to everyone.
	▲	louthy 2 hours ago \| parent \| prev \| next [-]
		> but have read You read that where? What evidence do you have? In my experience, Americans are often blissfully unaware about how poor their health services are. As someone who has seen many health services up close (from founding a health tech company and literally visiting myriad health establishments around the world, over the past few decades), the US hospitals and clinics always struck me as the most run down. But as soon as I walked in the boardroom at UHG or HCA, it suddenly all became a lot more glamorous. And whilst the US does ok with cancer outcomes, so do other nations like Germany, Switzerland, Japan, South Korea, Singapore, Canada, and the United Kingdom. Most advanced nations have universal healthcare with similar outcomes to the US, but for significantly less money. They also don’t leave citizens destitute for having the unmitigated gall to impose an unexpected health emergency on themselves. The US system funnels profit, it doesn’t provide better healthcare.
	▲	snapetom 2 hours ago \| parent \| prev [-]
		I explored specializing in health econ in college. My professor put it this way - health care is a scarce good. There's only so many doctors, so much medicine, so many beds. You have to control access to the goods somehow, otherwise you have Tragedy of the Commons. In the rest of the world, it's controlled by extended wait times. In the US, it's cost. You can have moral arguments about what's fair, but that's the economic reality. At the time I as studying this (early 2010's), the average wait time of diagnosis to first treatment for breast cancer in the US was 12 days. In NIH, it was 5 months.

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soperj 2 hours ago | parent | prev [-]

> Canada introduced MAID for this reason.

No they didn't.

There are tons of specialists in Canada. You're talking out of your ass.