The Cost of Uneducated Care

During my most critical year with myasthenia gravis, I spent an inordinate amount of time in the emergency room and on various hospital floors. A good deal of the ER staff soon got to know me by name and, while clueless as to how to help my rare but potentially deadly disease, they were often kind.

Their kindness aside, the hospital was a constant place of tumult, chaos, and fear. I was never able to rest and trust that the practitioner, nurse, respiratory tech, and others knew how to assess me properly and the unfolding situation, would offer me critical medications on time, or would offer me safe medications that wouldn’t throw me into yet another crisis.

It looked like a never-ending school day in which you teach and reteach the same material to a rotating group of students who you are keenly aware are not really getting it. Every flush of the IV, every med round, and every ordered test begs the question of what and why, demanding deeper analysis as a barrier from mistakes — mistakes I would ultimately pay a high price for.

That first year taught me a lot about medicine I never wanted to learn. Each crisis instilled in me a growing fear of the men and women meant to save me who would doubt, criticize, or blame me as they failed to understand the gravitas of what they were treating.

It was not until my first ER trip to another hospital a couple of hours away, where my MG specialist rounded, that I got my first taste of security. I remember the frantic two-hour drive being compacted to a mere hour and a half with my frenetic mother behind the wheel, desperate to get me real help. I could not go back to the hospitals near me, so bad was the trauma I experienced under them.

We rushed into that quiet ER and checked in at the registration desk as usual. As soon as they heard “myasthenia gravis,” they immediately took me back. Within 10 minutes, I was assessed by nurses and an ER physician who not only believed me but also expressed concern. They said they would be sending me to the neurology floor immediately for observation. I reached the floor, unsure of what was to come next. And that is what I have learned is so innate to our experience in rare diseases and chronic illness like MG — being unsure of the next moment, the next encounter. It is hard to be brave when we are always faced with a measure of uncertainty. 

I found the unit to be fully and wonderfully trained in MG protocols by specialists, and once I realized that I didn’t have to explain anything for the first time since my diagnosis, I could actually rest. I could rest in the care of the team around me and the choices being made, and I wept gratefully.

How badly do we all need the feeling of rest and security in our medical encounters? How often do we long to be able to have the care we desired and not what we encounter?

I pray security becomes the rule rather than the exception. I wonder how it would change for patients like us if medicine met us where we were and allowed us to rest. 

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