When I was twelve, doctors told me I was rarer than one-in-a-million with a condition called sarcotubular myopathy. It’s not a flamboyant disease. Nothing that would make good TV emergency room drama. But apparently I am medically “interesting.”*<\/p>\n
I’ve seen hundreds of doctors in my life, many at teaching hospitals where student doctors are a common feature of consultations with specialists. In theory, I enjoy being an active part of the learning process in the field of medicine. In practice, the presence of students fundamentally changes the doctor-patient relationship so that I’m much less the priority at my costly (and sometimes crucial) appointments. A couple times, a doctor with something to prove to his students has left me feeling like the object of abuse.<\/p>\n
I’ve had good experiences with student doctors, student nurses and student respiratory therapists (also student nurse’s aides, student x-ray techs, student phlebotomists, etc.) but I’m going to describe one bad experience. Someday soon, I’ll relate my worst medical student experience — this isn’t it. But both happen to have occurred within the last few years at a world-renowned hospital I have generally excellent opinions about.<\/p>\n
The neurology department patient waiting rooms all have inaccessible examining tables with fancy dark wood sides that match the decor. In fact, the only accessible examining tables I’ve seen at this world-famous clinic are in the physical medicine department. But I’d seen neurologists before, and the last one had no problem with me remaining in my electric scooter while he tested my reflexes and the strength of a few muscles. The steering column pops out so it’s easy to get close enough to me. I’m just lower than usual and sitting somewhere stable instead of perched on a bench I can’t get to myself and need someone else to hold me upright on.<\/p>\n
I hadn’t met this Dr. Neuro before, and he came in with three residents. The students stood quietly in the corner while Dr. Neuro reviewed my medical history with me. All went well until he inquired<\/span> if I could get up on the examining table and I replied that it was very inconvenient and suggested I stay in my scooter chair. He may well have had excellent reasons for preferring to use the table, but it was clear from his sharp response and demeanor that his sudden shift to insisting<\/span> I get up on the table was related to the presence of the observing residents.<\/p>\n So we did it his way, with my parents and the residents assisting, and two residents helping me as I struggled to remain sitting atop the table without any useful support. Needless to say, testing the reflexes of a woman tensed to keep her head upright and her body from falling to the floor was impossible. I didn’t stay up there long. It was readily apparent that the only thing to be learned was that I do indeed have severe muscle weakness, as both my patient records and I had declared.<\/p>\n I accept that I may be asked to do physically difficult or uncomfortable things to get medical treatment. I don’t have a problem with that or with attempting things trial-by-error. I also know doctors take each “fact” a patient tells them about themselves with professional scepticism and I’m glad that they do. But I don’t need an ego contest to come between me and my medical care.<\/p>\n I don’t recall the rest of the appointment or if anything useful was determined or planned. Dr. Neuro was gruff and when the appointment ended, one of the residents trailing out behind him quietly apologized to me. It was a memorable appointment only because the residents were clearly embarrassed by their boss, and the boss had weirdly seen me as a threat to his authority. I do wonder what, if anything, was learned by the students that day.<\/p>\n __________________________________________<\/p>\n *One thing that makes me interesting with regard to the diagnosis is that I am not a Hutterite male. Not even close.<\/p>\n Crossposted at The Gimp Parade<\/a><\/em><\/p>\n","protected":false},"excerpt":{"rendered":" When I was twelve, doctors told me I was rarer than one-in-a-million with a condition called sarcotubular myopathy. It’s not a flamboyant disease. Nothing that would make good TV emergency room drama. But apparently I am medically “interesting.”* I’ve seen … Continue reading