I spent most of yesterday in the ER. My boyfriend M. was having Crohn’s complications and after visits to two of his doctors and phone calls with a third, the consensus was: go to the ER.
We were lucky to have gotten a terrific team: we got a very clear diagnosis, and he is already on the mend.
But what really set this experience apart from so many hospital visits was that M. felt like everyone was really listening. The team of health professionals we met yesterday truly made M. feel heard—an experience that is criminally rare, especially for someone on disability.
All too often, the places that take Medicare feel like factories, and so many of M.’s health experiences have made him feel like the system wants him to give up: to stop fighting when the notices come warning him that he’s about to lose coverage on a technicality, to stop filling out the endless forms proving his eligibility, to stop… breathing.
It’s a broken system designed to keep sick people in poverty and shame. The cruel way the American healthcare system treats its most vulnerable citizens is something I don’t think you can truly understand until you’ve experienced it firsthand.
So when we experience care that goes above and beyond, it feels like something to celebrate and feel very grateful for. And so while I don’t want to lose my anger at the system, I do want to sit for a moment in gratitude for the people who are working to help sick people feel dignified and heard.
M. also felt like having me by his side helped—like people took him more seriously because I was there helping him tell his story.
I don’t possess any magical doctor-whisperer qualities, believe me. But I do know from my own healthcare journey that stories about our health are wild and twisty and they are really, really hard to sum up in a five-minute intake.
M’s journey is decades long and when he tells his story he can slip in and out of different time periods. All I really did yesterday was help him put “timestamps” on his story so that the team could understand what was new and what was ongoing.
The experience reminded me of the “Narrative Healing” work of my friend, yoga teacher and writer Lisa Weinert. Lisa describes Narrative Healing as “a mindbody approach to storytelling that helps writers (re)connect to their bodies, and feel empowered to launch their work into the world.”
It’s been a while since I’ve taken a class with Lisa, but I remember how gentle and healing her approach to the creative process was, and if you’re someone looking to connect with the body’s stories and wisdom, I’d highly recommend checking out her work.
That’s all I’ve got for today, friends. This week has been one for the books, and right now my body is telling me to rest up for the week ahead.
xoxoxo
Sarah
Stupid Crohn's is no joke. I am sorry it was a rough few days, but I'm glad to hear he is working toward feeling better. So important for the caregivers to rest also! The way we treat people in this country from every position could stand an upgrade. But the medical industry is especially heinous. I'm glad your recent experience was different.