General
Medical Narratives
I'm currently enrolled in a college course called rewriting medical narratives. It's taught by Emily Rapp Black, if any of you know her. And it's talking a lot about the links between story telling and health care, how modern medicine has made so many advancements but it's also lost the ability for doctors to just be present with their patients and learn and have empathy for their stories.
This is something I've noticed with being in the hospital so much since transplant, especially in this Covid season, and it's sparked ideas in my brain for how healthcare needs to change and could be more patient focused. I'm just curious what your thoughts are about this. What was your experience in the medical system, how did you feel supported by your medical team and in what ways do you wish your medical team would listen to your story more instead of just seeing facts and numbers?
1 - 5 of 5 Replies
Transplant Patient
That’s awesome Jim! And something I think hospitals need a lot more of. I see things slowly trending towards more patient focused care but we still have a long way to go. This is a field I’m really interested in and would love to bring this storytelling format to my hospital and transplant program
Transplant Patient
@JimGleason and @AliEm14 wow! I love this topic and it is so important. When I studied medicine and did my internship we were taught by drs who looked pts in their eyes, asked them questions about their lives and their bodies - now when I see a young dr they look at their screens and only focus on their areas of expertise - we have lost the comprehensive approach and the intimate contact w our drs - I would not want to work like that and I am not happy w those consults as a patient. This our approach to “take over where the drs leave” @lescp3 quote and I hope we can do much through TL and also through other approaches where patients and care partners and fill the gap. I don’t mean they should treat the patient - but be there for them emotionally and support re the daily issues they have.
Transplant Patient
I love this, Karin! Even when I had my transplant and was in the hospital I found patient resources were lacking so much. As I've continued to recover, I've gotten more into the world of advocacy and sharing my story, and I've realized how much lack there is within the medical community. All I wanted when I was sick was to read other people's personal narratives, and there isn't a ton out there. I would stay up late scrolling through instagram just trying to find other people's stories who were showing up and being transparent the way I wanted to see. I love that transplant lyfe is becoming that bridge for people, so we can find each other's stories easier. I love that I get to be a voice in this community, and on my personal platforms, so that maybe the next young person who needs a transplant won't feel so alone. That quote you shared really impacted me, I think I'm going to use it in this week's assignment on medical narratives.
Transplant Patient
I traveled 5 hours away to get my transplant, so I didn't have the widest variety of doctors to choose from. I did with my condition pre-transplant, and was very happy with my doctor. And now I am curating a team of liver doctors and transplant specialists who I am happy with. but I remember being in the hospital after my surgery, and my surgeon at the time never once looked up from his screen. I felt so alone, like to him I was just a number and not a patient. My latest surgery I had, pre-surgery I had my entire OR team sit in front of me, and we just held eye contact and the lead surgeon had his hand on my arm and we talked through the whole procedure, and why I needed it and what was important for me to come out of it with. THAT is how medical care should go, I think