alt Hacker NewsThe 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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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.
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.
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.
> 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.
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
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.
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.
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.