I just received a letter in the mail which included a six-page questionnaire about the care I received while in the hospital for 2 weeks in September.
They ask questions about the care I received, the hospital environment, my hospital experiences, tests and treatments, etc.
I am under no delusion that my care is very complex. At home, I manage 15-20 medications, test and monitor my blood sugar for diabetes, and perform airway clearance (lung therapy). It’s not just a matter of taking a bunch of pills each day. Many of them have to be taken at specific times, in relation to waking up, eating, performing certain activities (like driving), avoiding potential interactions, managing treatment side effects, etc.
So when I’m admitted to the hospital, I have to turn in all control to a series of more than a handful of different departments to manage.
Every hospitalization is a challenging experience. I’m awakened early (sometimes 4am) to get blood taken, doctors from 3 or 4 different specialties visit me daily, each asking all of the same questions, poking and prodding me according to their focus. I feel like I have to give up agency over my own body. I succumb to the authority and power of mostly strangers.
I have to ask for medications and monitoring. Nurses are bombarded by dozens of requests and needs to fill, and most of the time, my needs, though very important to my functioning, usually fall somewhere in the middle of the line of urgency. Certainly, I understand that another patient could have an emergency. And I understand that I am one of many patients on that floor. But imagine relinquishing all control of everything to people who only know you by the info someone has entered into a computer database.
Practicing medicine is as much art as science, but most of the time, medical staff perform by rote – falling back on what they learned in books, lectures, and during practice/clinical experiences.
But my disease and all of its manifestations and symptoms don’t know to follow the rules.
I undergo so many negative emotions every time I’m inpatient.
The only way to survive is to face each moment as it happens. Because otherwise, I’d lose my mind. And it’s the only thing that they can’t control.