I came upon a thread on the medicine subreddit (I won't link because they hate that) but a comment really jumped out at me. I think it really describes exactly what is wrong with medicine to cause situations like ours, because they seem to take a small fraction of their actual difficult patients and simply apply them as a whole to anyone with a stigmatized disease, then apply a heavy dose of mythology because it borders on delusional how far it is from reality.
No thanks, I see enough of these patients in real life.
These patients are extremely difficult to evaluate. They doctor-shop every specialty (except psychiatry) and see multiple doctors within each specialty in a single university medical center (who cannot find a diagnosis), with a history of having been seen by many other providers at many other university medical centers in the past, especially "big-name" places (who did not find a diagnosis). I have had patients bring in large boxes of records, all negative even though the patients will claim an actual diagnosis has been made.
Most excessively self-diagnose from the internet. Many have Munchausen Syndrome tendencies (and of course it is exceedingly problematic if By Proxy towards their child). Most are highly enabled by their families. Most get a great deal of secondary gain. All are seeking a definitive diagnosis to receive Social Security Disability income. Some will instantly leave when we attempt to as gently as possible, refer them to the psychiatry dept. However many who stay (while refusing psychiatric evaluation) are exceedingly demanding, then turn abusive towards staff when their demands are not met - so many that my University's legal representation for our group practice will end up requiring us to "fire" such patients because they are essentially non-compliant to your recommendations. In fact, a subset will threaten to sue you.
When you do this long enough, you too will burn out on these patients, and have no desire to also spend your free time watching them on TV...
Basically every single claim made in that comment is the exact opposite of our reality and that of the tens of millions of others living with poorly understood chronic immune diseases. It describes the complete opposite of my personal experience, to a disturbingly accurate degree. It's a perfect description of exactly what does not happen. Secondary gains? WHAT FUCKING SECONDARY GAINS?! WHERE?
We do balk at a psychiatric referral, although that is perfectly natural since it doesn't have any more answers than alternative medicine does. Decades ago, psychiatry had little to offer to asthma or tuberculosis patients either, and still does, they're just not wrongly sent there anymore.
They look at alternative medicine as an indictment on desperate idiot patients, instead of a measure of their own failure. No one would "self-diagnose on the Internet" or use alternative medicine if modern medicine did better. They speak of numerous past appointments, seemingly not aware that most of those were about 5 min. and ended with a shrug of indifference. Which is strange because that's how they likely did themselves.
I don't know where that attitude comes from. It seems to have always been there and the medical profession is just incapable of self-reflection about other people's past mistakes. It's not even their personal mistakes, I don't understand the stubbornness in refusing to address such glaring failures. The costs are staggering and the outcome disastrous for everyone.