A P.A. doing intake recently informed me ME isn’t an accurate name and suggested I shouldn’t be using it, least of all in a medical office. Shortly after admitting he’d heard of CFS, but not ME/CFS. 🧵
His argument is problematic, as I responded, because ME/CFS is the widely agreed upon name, used in the ICD, by CDC and others. It’s also not the only name poorly reflective of its distinctive pathologies (though those get a pass because, well, we’re used to them).
But the fact that he felt the need to drive it at all is insane. Patients should never be belittled when they relay diagnoses, however seemingly justified in the moment. What may feel like an intellectual exercise for the provider may feel like life and death for the patient.
There are profound asymmetries in the relationship between patient and doctor that affect how each engages and what each expects from the interaction. But medical providers don’t seem aware of how loaded appointments can be for patients.
And that, as sick people know, further adds to the burden of being a patient. You have to understand these asymmetries and manage them to wring some distant cousin of good clinical care out of our broken medical system.
That may mean being strategic about how you engage, so you limit providers’ opportunity to drive agendas that don’t serve your interests. A neuro-ophthalmologist once decided all my problems were due to gluten! And proceeded to derail an appt. I’d traveled 100 miles for.
Or that may mean finding a new provider (or foregoing care), so you don’t have to accept abuse. I lean toward the latter. But either way, you have to make peace with abuse and your dependence on an abusive system for the care and benefits you need to live.
The rant, and other behavior, was upsetting, but what upsets me more is how often patients green in their illness encounter providers unable to meet them where they are, and how those patients will bear the burden of that failure once the appt. is over.
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