I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
The greatest terror for me is not that they will find something horribly wrong or even that there is nothing they can do. It’s that I’ll be diagnosed with conversion disorder again.
I’ve been trying to figure out why that prospect bothers me so much. It wouldn’t leave me better or worse off than I already am. It wouldn’t alter the underlying biological facts of whatever is happening to me. It wouldn’t mean I had any less access to care than I already have.
I think it’s because stories of the innocent burned at the stake by a deafening mob in the grips of a collective delusion have always riveted and terrified me: stories like The Lottery, the Crucible, witch killings, lynchings, Galileo Galilei.
These are all extreme parables of a subtler (but frankly, often just as deadly) gaslighting we’ve all experienced as #pwme, the disabled, the chronically ill.
Insulin shock therapy was a collective mass delusion. Graded exercise therapy is a collective mass delusion. Most diagnoses of conversion disorder arise from a collective mass delusion.
Repeat the same story over and over again and it ceases to matter if it was ever true or what the evidence for it was in the first place. The sheer number of people who believe in it becomes self-reinforcing. (How else can we explain this?) thenib.com/the-dark-histo…
Or this history:
And so in short, this shit really scares me. On a personal, individual level but also on a “I have looked into the dark heart of man” way.
There are areas of medicine that have serious ontological and epistemological problems that are rarely talked about. And the practical result is people die when they shouldn’t have to.
And one of the questions that has never been dealt with is whether the immaterial soul (and other concepts that are invisible, unknowable, beyond empirical science or measurement) still have a place in modern medicine.
In other words, if your tests come back normal, can I pronounce you in the grips of an “unnatural illness?” Or do I keep looking because I fundamentally believe that everything is measurable and knowable? That reality is empirical?
(No one could ever accuse me of being insufficiently abstract!)
But back to the beginning: I am being looked at in a way I never have been in my life. I wouldn’t be doing this unless I had hope it could help. But with that comes a great vulnerability, that my trust will be betrayed again, that it will all be just another dead end.
And that scares me because while I know I could have made a life out of where I was last year. My symptoms are now are unlivable. And up until now, in spite of everything I’ve experienced, I never predicated my life on feeling better.
