I think part of the problem must be that at every encounter (whether ER, hospital, specialist, or primary care), the doctor’s job is either diagnose and treat you, refer you, or send you home.

It seems very difficult to say, “this patient has major signs and symptoms, the cause of which I do not understand. I can do no more for this patient.” I don’t know what % of that is ego v. institutional (there is no ICD code for “I dont’ know.)

And so instead, the patient gets told “Good news! I couldn’t diagnose you. The tests I chose to order came back ‘fine’ so you must be fine. You are the picture of health!”

“But doctor, I can’t walk, I have a stabbing pains in my chest and in the back of my head at the base of my skull. Sometimes I am paralyzed and can’t breathe. I forget who I am or how to use common objects.”

”Ah, then it most be conv— uh, functional neurological disorder. It’s really well understood now!”

Patient gets marked as “perfectly fine” or they are misdiagnosed.

We need a place to send these patients—not exercise boot camp or psychotherapy—but to some sort of context where they are given extensive diagnostic workups.

If we did this, not only could we diagnose these patients, patterns would start to emerge, patterns the medical system simply cannot see when it’s busy swatting us away like so many flies.

Every once in awhile, enough data would be gathered that this new “skunkworks” space could declare to the medical system, “We have detected a new pattern. This is what it looks like.” (Most of medicine is about recognizing established patterns, not generating new ones.)

In this way, the medical system might internalize its “failures” (i.e., new and interesting frontiers for research and clinical care).

Instead, it has zero visibility on these patients. This is by design. The medical system routinely sends very sick patients home with nothing, usually by pretending nothing is wrong. The least they could do is recognize that we exist.