When I was working as an RN in the neonatal intensive care unit (NICU), I asked one of my favorite neonatologists if they knew what cataplexy was. When I eluded to the fact that I believed that I had cataplexy he said, "Oh no, that is what schizophrenics get when they are catatonic, muscle rigidity." I wasn't quite sure how to handle my response. Who was I as a mere nurse to correct him? How could I possibly know something that a doctor, a neonatologist nonetheless, was obviously uneducated about?
So I sort of giggled and explained what my understanding of cataplexy was, and also what my symptoms were. He just sort of looked at me like I was crazy. However, our little conversation made an impact. The next time that we worked together he admitted that he was mistaken about what I was talking about. What he thought that I was talking about was something entirely different, although very similar sounding-
catalepsy.
Catalepsy: "A trancelike state of consciousness (as that occurring in catatonic schizophrenia) that is marked by a loss of voluntary motion and a fixed posture in which the limbs remain in whatever position they are placed."
Merriam-Webster Medical Dictionary
Cataplexy: "A sudden loss of muscle control with retention of clear consciousness that follows a strong emotional stimulus (as elation, surprise or anger) and is a characteristic symptom of narcolepsy."
Merriam-Webster Medical Dictionary
Sometimes by living with or experiencing a disorder, you can be the source of a wealth of information. Knowledge and education can be provided simply by sharing your first-hand experiences. Don't be intimidated by someone's credentials, just because they have a fancy title does not mean they know everything. Share your experiences- Education is advocacy!
