I’ve never met Victor Montori but I’ve long admired him. I’ve become familiar with his minimally disruptive medicine approach and watched many of his lectures, including this one on TED. He is a patient’s doctor.
I was so struck by his quote above that I wrote it down. The quote, if you can’t read my scribble, is: “We don’t measure the work of being a patient. There is not a single textbook that describes the work of being a patient. We just assume it’s not a big deal.”
If you’re familiar with the maxim, “to see the world in a grain of sand,” I hear the same big idea in another simple thought. Just like we find the awesomeness of the entire world in its smallest details, a grain of sand, the lived experience of being a patient speaks volumes. But no one is asking - and no one is listening. In all of medicine, healthcare, the constant sturm and drang of how to help people self-manage their chronic conditions no one is really looking at us and what we do every day.
As a society we are consumed, possessed you could say, by “treating” disease. By getting patients compliant on their medicine, lowering costs, reviewing yearly labs. But who is curious about the patient-life: the daily, yearly, monotonous, momentous, hack-ing, soul-crushing, awe-inspiring, enervating work of living with a condition, not just in your doctor’s office, but everywhere, every day in your life?
My forty-five years of living with type 1 diabetes have shape shifted over the decades: moving from early uninformed days to now having more knowledge than my providers; new tools and information eased things; better medicines and devices means both less and more work, and the compatriots I now have and diabetes community I now live in brings communion and connection.
Each patient life is singular, and common. I am fortunate; mine has yielded much to be grateful for, and from it I have created rich and purposeful work. Yet whether you call diabetes an illness or condition, we live a patient’s life. I cannot afford for long not to think about what I eat, will the weather allow for my exercise walk, refilling my meds, seeing my doctors, checking my blood sugar every few hours or inserting my continuous glucose monitor, the hundred decisions I make each and every day and the emotional consequences of my diabetes-life.
I expect Dr. Montori’s and my path will cross . For now, like that ink above that recorded his words so true, here are some lighter and darker shades of my personal diabetes journey.
One year with type 1 diabetes. One shot per day.
Everyday gear
Accuracy or precision? Life hangs there.
Timesulin helps me remember if I took my shot. Toujeo required three prior authorizations as insurers don’t understand insulin treatment.
Heathrow airport official threatened side room strip search because of my CGM
The husband has had to learn to navigate this life with me
In Bangalore, where I volunteered at a diabetes clinic, 22 years old with type 1 diabetes and such poor care and corruption couldn’t close her hands.
The every day work of managing blood sugar
The remarkable opportunities to help and share. In Israel to present to diabetes health professionals.
Ultimately, the journey is yours alone.
Speaking for the International Diabetes Federation at the World Health Organization conference, Geneva, 2017
Only five years away. Aspirational, it guides me.
Diabetes, and any chronic illness, is constant and you are brave - that is the patient story.