In those early appointments, you might feel like your doctor doesn’t really understand what’s happening to your body and how serious it is. Fatigue, for example, takes on a whole new meaning when you become chronically ill.
It’s not the same as being tired, and you’ve got a vocabulary problem if that’s what your doctor hears when you tell them about your fatigue.
But if you have the energy to be persistent and the money to pay for specialists and the support to travel to multiple doctors, then your chart will begin to fill up with the formal names for your symptoms.
My chart, for example, now says that I have small fibre neuropathy and postural orthostatic tachycardia syndrome. Neurological stuff.
At some point after validating your symptoms, hopefully, these symptoms start to tell a story that your doctor understands. At some point you get a diagnosis.
Diagnosis itself can be…