One wish I have for people with functional neurological disorder is that someday the diagnosis is widely available, de-stigmatized, and explained in a way that does not necessitate an epistemological crisis for the patient

We talk a lot about stigma here, which is important, but maybe not quite enough about how unclear thinking + communication can make getting a diagnosis feel like you’re watching the fabric of reality warp around you. Not fun!

I don’t know what the answer is, and don’t envy clinicians who have to consider not just the words they actually plan to say, but also the loose ideas about “conversion disorder” most of us have absorbed at least a little of.

Maybe it just needs to be tackled both in the doctor’s office and in society: in media, in education, in everyday relationships.

One thing I’ve found helpful in conversation is the framing of “the brain works differently than most people think. The specifics of that shed some light on FND. Here’s how: _________”

But maybe that’s more useful for general scicomm than for a doctors appointment.

All I know is that in the early days it would have been helpful to know that when it comes to FND, you’re wasting your time going back + forth thinking about if it’s “really” psych or neuro. The brain is different than that. For FND, there’s no meaningful distinction.

But in order to get to the place where you can believe that 1) you have a genuine neuro disorder and 2) that your expectations can alter your “real, neuro” symptoms involves a complete re-ordering of what most people think the brain is doing.

Maybe some people can get there more easily, but it was a “crisis in neurology” for me. It’s much easier to think in some cases that the doctor is saying you have a kind of delusional disorder and that’s why if you believe differently than the symptoms will change.

But if the brain isnt passively reacting to the world the way most of us sort of assume (cuz we’re not brain scientists and don’t know better), if instead it’s constructing and predicting and synchronizing itself with itself, FND in the broad strokes isn’t so hard to understand.

This thread has gone on too long but that’s really my hardest argument against Freud, too: that the “conversion” model can have the effect of inducing epistemic chaos and terror for the patient, and there’s no way to disprove the allegation that you’re “repressing.”

Anyway, it’s been an unplanned ramble. Looks like it’s bedtime now. Thanks for listening!