Dysautonomia Disbelief

Life with a dysautonomia like Postural Orthostatic Tachycardia Syndrome means learning that the hardest part is not always the dizziness, the racing heart, or the bone-deep fatigue. The hardest part is realizing that the people trained to understand bodies sometimes look at yours and shrug. You sit in an exam room trying to explain that standing up feels like running a marathon while hungover and someone nods politely while clearly thinking anxiety or stress or too much time on the internet. After a while you start to question your own reality because that is what happens when the authority in the room treats your suffering like a rumor. You leave with normal test results, a vague suggestion to drink more water, and the quiet humiliation of knowing that your body is screaming while the system designed to hear it keeps turning down the volume. And then you go home and do the most exhausting thing a sick person can do which is continue proving that your illness is real. I’ve personally experienced similar interactions with physicians prior to my diagnosis of common variable immune deficiency. It crawl into a medical office and to be provided no assistance because the symptoms don’t meet their decision tree is disheartening and depressing. While I do not diagnose any medical conditions, reach out if you feel as though you are falling through the cracks in the medical system.

Dr. Jeffrey Bone