When unexpected symptoms of illness arise, it’s easy to fall backward into the old cultural phenomena of “the doctor knows best.” Let’s face it, feeling ill, frustrated, and confused can be downright overwhelming. Who wouldn’t want someone else to take over when their health lands them in a sh*t storm?
Don’t get me wrong, I’m not suggesting not to seek medical attention, care, and treatment, as that would be unwise and possibly dangerous. I am firm believer, however, that no one can know you as intimately as you know yourself, and it’s critical to trust your own instincts. Being born with a neuromuscular disease has, by default, caused me to be a “frequent” patient. I can’t count the number of waiting rooms and hospital beds I’ve occupied; if only air mile points were granted!
At this stage of the game, whenever I enter a hospital, I carry an invisible shield to fend off misguided opinions. One such incident occurred ten years ago when I was hospitalized for pneumonia. Unbeknownst to me, my then-respiratory-specialist asked a surgeon to assess me.
One evening, just after visitors left my room, a tall man dressed in green scrubs stopped at the end of my bed, and without first saying hello, folded the blanket back to expose my feet. When I asked if I could help him, instead of replying, he reached for my chart to read. When finished, he looked at me and simply said, “Well, I hope you don’t lose them.”
“Lose what?” I inquired.
“Your feet,” he said, “or at least your left one.”
I suggested he must have the wrong room; after all, I did not know him from Adam. He explained that my doctor had requested he stop by and look at my feet. I was stunned, and immediately felt panicked! “Get out!” I screamed over and over as he tried to speak. I was deeply rattled by this unsolicited opinion.
Now, in full disclosure, my feet were swollen and displayed a blend of unpleasant colors, so clearly, this needed to be addressed. My issue was that my doctor, without any discussion with me, made the leap to involve a surgeon. Upon my discharge from the hospital, I promptly fired my respiratory specialist. My foot situation did improve with time and care, thankfully, but the fear that surgeon instilled within me continues to linger.
From this, and other past experiences, I’ve learned any physician involved with my heath care must respect patient engagement. Anything less is not acceptable.
Follow this journey on Susan Wheeler-Hall’s website.
Susan Wheeler–Hall, BSW, NGH, is a therapist, educator and author on topics related to living well when unwell. Aside from her professional skills, Susan also has first hand experience living with illness and levels of inability due to a progressive neuromuscular disease. You could say she walks the talk, but does so now aided by a walker and a scooter.
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