Laël Ngangmeni (\u2723, MD/PhD) and Jesse Sardell (\u2724) are joined by Sara Wang (\u2724) for a discussion on how to tell stories from a patient\u27s perspective, as well as what medical students should consider when they meet a patient for the first time.
Sara Wang\u27s piece  Julie  was first published on The Interstitium blog.
The transcript for this episode is available for download as an additional file

Ngangmeni, Lael

Sardell, Jesse

Silk, Hugh

Wang, Sara

English

eScholarship@UMMS

  Transcribed by https://otter.ai - 1 - Murmurs: Stories from Our Journey in Medicine Season 2, Episode 5: Julie 2021-12-27  Podcast Transcript  Speakers Jesse Sardell, Sara Wang, Lael Ngangmeni, Qiuwei Yang, Hugh Silk  Hugh Silk  00:21 Welcome back to the podcast Murmurs: Stories from Our Journey in Medicine. This podcast series is meant to act as a reflective experience for the way health providers and those in training think about their patients in medicine. Not so much about how they make diagnoses, but about how they relate to their patients, continue to think about them long after a visit, and what makes doctors and nurses tick. Each episode we will interview someone from UMass Medical School who has written a creative piece and listen to the story behind it. The hope is that this podcast will inspire others to be more reflective practitioners as well.  Jesse Sardell  00:55 Hi, I'm Jesse.   Lael Ngangmeni  00:56 And I'm Lael.   Jesse Sardell  00:58 And we're thrilled to be joined by today's guest, Sara Wang. Sara is a rising second year medical student here at the University of Massachusetts, and part of the Population-based Urban and Rural Community Health program with Baystate Health. She is driven by her interactions with patients as well as in the community and finds solace in documenting her experiences through writing. Her writing has been featured in The Interstitium. And the piece that Sarah is sharing with us today entitled "Julie" won the 2021 Gold Humanism Honor Society Narratives and Medicine award. Sara, thanks so much for being here.  Sara Wang  01:34 Thank you so much for having me.   Jesse Sardell  01:36 Before we dive in, could you talk to us a bit about your background and how you got into writing? And what ultimately led you to write this piece?  Sara Wang  01:45 Sure, yeah. So originally, I was born in Beijing, China, and my family moved here when I was young. I grew up in Newton, Massachusetts. And I went to school at the College of William and Mary, where I   Transcribed by https://otter.ai - 2 - was blessed to have a great liberal arts education, including a couple of writing courses. My original influence with writing, there's actually a fun anecdote of when I was one, there's a Chinese tradition where you get placed on a mat with a bunch of objects like a spatula, and a pen and a dollar bill, and what you pick is supposed to symbolize what you go into later in life, and I picked a pen. So I'd like to think that writing has always been a part of my life. And it's just a great way that I express myself and have documents of my memories throughout my life. So this was written early on in my first year of medical school when it was the middle of the COVID-19 pandemic. I was struggling with online coursework after finishing a couple of gap years and a little bit grasping for meaning for why I was in medical school in the first place. And this interaction with Julie, as we'll call her, was a really great reminder of why I cared about the field and also what I could do as a student.  Jesse Sardell  03:04 This is "Julie" read by Sara Wang.   Sara Wang  03:09 Julie. I was sitting in Dr. G's exam room yet again. My state sweatshirt is keeping me warm. The sleeve is all worn from me wearing it a lot and biting it when I get anxious. It's gross, but I can't help it. I sigh. I don't have anything against Dr. G but I sure as hell don't want to be here right now. I wish there was some sort of magic pill he could give me. They'd figured out my ADHD and anxiety well enough. Why couldn't they do it for my endometriosis too? Instead I've just been under the knife a couple of times so that they could remove some weird tissue growth, but it just seems to come back. Looks like my endometriosis is just as persistent as my coaches say I am. Dr. G says that the typical treatment for this kind of thing is a bunch of numbing injections every few weeks. I swear I'm not scared of needles, but I keep passing out even after the dumb flu shot. A vagal effect or something. I can't remember the exact terminology, but it makes me feel weak, like a kid. Even back then I hadn't liked going to the doctor. Of course that was before all this started. Over the years the endo hasn't gotten any better. But I haven't let it get the better of me. I'm just a semester away from getting my degree in PT. Killed it on my D2 gymnastics team. And my coworkers say I'm one of the best trainers there is at our gym. I guess I'm just used to living with whatever I had by now. The pain, the bleeding, the lack of sex. That one hurts real deep. Johnny has been pretty understanding about it, but I know he wants what I can't give him right now. Really haven't been able to give him for a few years. What kind of dude would want this? We've been going strong through college but I can't help but think he'll walk away if this doesn't get any better. I wince, shifting around on the thin paper, my hand going up to my chest as my boob pain kicks in again. The uterine stuff's bad enough, but this started up a couple of weeks ago too. My twin had the same thing. But luckily she escaped the endo. I feel broken and old and defective, things a 20 year old shouldn't have to feel. I hear a knock. It's Dr. G, finally. He comes in at his usual breakneck pace then introduces a med student who looked about my age. She's going to be asking me about my condition, yada, yada. I didn't really mind the extra questions. I guess they couldn't hurt since nobody else can really figure out how to fix me. She begins to ask about why I'm here and I launch into my backstory. I like to talk. It's nice seeing a new face too even though I feel like a broken record sometimes going over it all again. Bits and pieces, talking first about my messed up body, then school and work. I linger a little over my stressful semester so far. How online school sucks during COVID. Then Johnny. After that somehow it all comes bubbling out of me. The guilt. My barren lack of any kind of sex life. How I end up curling up in excruciating pain after three minutes of trying, then feel the effects for two whole weeks   Transcribed by https://otter.ai - 3 - later. I fall silent, a first for me. My throat's closing up and tears prick at my eyes. God dammit, I won't cry. Not here. Not now. I just want the pain to go away. It just sucks. My voice breaks. The med student quietly reaches into the cabinet for a miniature Kleenex box. It's a welcome sight, but I can't help grimacing when I think of how many women have been in here sobbing about their uteruses before. Of course, there are many worse things than endometriosis. So it feels like this isn't a good reason to cry. Crying makes me feel weak, broken, helpless, but I accept the tissues anyway. I try to pull myself together as I wipe away the salty tears and blow my nose. We sit still in a few moments of silence, only broken by the wet sounds of my snot. It's not your fault, the med student says. This surprises me. I hadn't even thought about that part of it. For so long I worked hard to break free of everything that I thought endometriosis made me: doing double workouts at the gym to prove I was strong, studying long nights to battle against how my ADHD set me back, walking on eggshells around Johnny to feel like a better girlfriend for what I couldn't give him. Besides all the physical pain, I was also angry at my own body for doing this to me. I was doing all I could to make up for feeling less than normal, less than a good athlete, less than a functional girlfriend. Never once did I consciously recognize that I was blaming myself for all of this. But I guess I was. The student continues on to more soothing reassurances that bodies do their own thing sometimes, that they'll figure it out. I nod, feeling my tears, tears go away and my fist unclench around the wet tissues as her words sink deeper in. In a bit, Dr. G comes in and goes over some more treatment options for my endo. Apparently, we can try the needles and see if I pass out. And if I do, surgery is the next best option. We schedule a time and discuss a couple of ways to talk with my mom and Johnny about all this so that they understand too. Just for a moment, even though they might take my uterus out, and what 20-something year old doesn't have a uterus, I don't feel as helpless as I have before. Just for now, even though it's not perfect, I feel like my body and I are on the same page. As I walk out of there, mind whirling with what we had discussed of surgery and injections and consent forms and next steps, I remember what she had said. It's not my fault, I repeat aloud. And this time I believe it.  Lael Ngangmeni  08:56 What a powerful piece. It's extremely encouraging to me as a medical student to see the kind of support I can offer patients at this stage in my training. I actually shared this piece of a friend of mine, who's also in her early 20s, who had to get her uterus removed due to endometriosis. It really resonated with her. Sara, do you have a word to say to anyone listening who like my friend and like Julie, also struggle with endometriosis? Or are faced with reconciling themselves to the reality of living with a long term illness?  Sara Wang  09:25 Yeah, that's a great question. I think what struck me about Julie and so many others that I saw with my preceptor in our female pelvic pain clinic was that it's so common and also so isolating to go through something like this, where female reproductive health is very politicized. And it's difficult to talk with people who might not understand, like partners or family members who don't go through the same thing. So just remembering that it's really not your fault, and sometimes you don't have control over what your body does. Trusting the process and hoping that you have a great team that will work with you to find a solution. That's what I would say to people going through similar situations.  Jesse Sardell  10:12   Transcribed by https://otter.ai - 4 - And I think on that point, it was really, really powerful to have you really take on Julie's perspective in this story. You know, a lot of the stories we hear from other providers are really exceptional stories, and they're told from the perspective of the provider. I'd love to hear more about what inspired you to tell the story from her perspective, specifically.  Sara Wang  10:33 So originally, this was actually a prompt for the creative writing OEE, that Jesse is also in. I had never really written from the perspective of the patient previously, and I really wanted to do it justice, I wanted to do, Julie justice. And I wanted to tell a compelling story without elaborating too much, or dialing down the emotions of the situation. I drew a little bit from my own perspectives as a patient, especially at the OBGYN, to have both providers that supported me and not so much. I really wanted to put myself in Julie's shoes and take my own perspectives as a patient as well as, as a medical student in that situation. And write what she might have been going through, and the moments where she didn't feel so empowered, or she didn't feel supported previously and didn't know what to do. And I really learned that by doing this and writing from a patient's perspective, we as medical professionals, or future medical professionals, can really consider a lot of different aspects that we might not have time to in the moment, in the 10 minutes or 15 minutes that we are seeing patients, practicing empathy and practicing, really holistically evaluating a patient's plan of care. I think were lessons that I took away while writing this piece.  Lael Ngangmeni  12:11 And one of the lines that struck me most was that moment where Julie recognizes that her condition, and her struggles aren't her fault. I think providers often forget that, that patients often feel responsible for their own health conditions. Could you speak a bit more about what that moment meant to you? And what inspired you to to include it?  Sara Wang  12:30 Yeah, I think as a medical student, in that moment, I didn't really know what to do. And this patient was really opening up to me, and I couldn't solve her endometriosis in that moment, I didn't have the clinical capacity to do that. But I think reassurance and support and the listening ear is something that any provider at any level of training can provide to their patients. I also, like Lael said, I also have friends who have gone through similar medical conditions, where they were really blamed for it or told if you just lost a little bit of weight. Or if you just tried this birth control, that their condition might get better. And it's really placing the onus on the patient, when many times the patient's lifestyle or choices have very little to do with this. And even if they did, that's not always the correct method of going about supporting the patient. So although our bodies are, where we live, and they are our homes, physicians frequently, we've seen patterns of you know, placing the blame on the patient for when something goes wrong. So I think, especially being part of PURCH, recognizing there's so many circumstances out of your control and out of the patient's control. So just working together with the patient and supporting them, however, you know how, is the most important.  Jesse Sardell  13:59 Yeah, that's such a great point, Sara. I think especially like you said, as medical students, there's only so much we know how to do and so even just providing that support can can make a big difference.   Transcribed by https://otter.ai - 5 - And I think, you know, we can all appreciate your story, how you talked about that interaction between Julie and the medical student. I'm not sure about you guys, but as a patient, I've never had that experience where I was talking to a doctor and a student. And so now that you know, we're all students now, I often wonder what it's like to have a patient who's meeting with their doctor who they trust, with whom they're talking about a major personal medical issue. And then all of a sudden, there's a student in the room that they've never met, who's asking them questions. And so, you know, for you, Sara, and thinking about Julie, about your own experience thus far, what's something you think that that all of us students should keep in mind when we're meeting our patients for the first time and when we're just just starting to establish those relationships to care for them?  Sara Wang  15:02 I think it's so interesting, because I've also never had the experience of being a patient in an academic center. But it varies really, you could be the first person as a medical student, you could be the first person the patient is speaking to, the first chance for them to tell their story. Or they could be telling it for like the umpteenth time that day, they could have been approached by nobody at all, or by teams of like, what seems to be 20 or so people. So I think it really varies on the situation. But the most important thing is to have empathy for the patient and consider their experience. So maybe they wouldn't want to tell their traumatic tale, again, to yet another medical provider, if they've already done it so many times that day. Or maybe you are that chance to have that first real listening ear who's not in a rush, and who can kind of dive into the details a little bit and care about them as a human being. So I think that's really a gift that medical students have is a little bit more time and a little bit more consideration for the humanity of patients. Another thing I would say is, it's important to create a level playing fields with the patient as well, we're there to learn from them just as much or more than they're here to learn from clinical providers. So to take apart that hierarchy that traditionally stands and to stand alongside the patient instead of above them, I think that will only serve to strengthen relationships between patients and their providers, and improve care as a whole as well as the patient experience.  Lael Ngangmeni  16:49 Well, no, it just really resonated with me, Sara, this last answer about remembering the reciprocal nature of medical care, where we're just not talking to this patient, and they're not just learning from us, but we're also getting something from them. And remembering how much, how precious that trust is that is given over and then the sharing of their lives, and then what we share with them. So I just find it very, very encouraging that you chose to be vulnerable in this way with us there. And you took the time to speak with us. I'm definitely inspired and taking from this conversation to apply in my next time in the hospital. So thank you.  Sara Wang  17:20 Thank you so much, Lael. Yeah, I would agree that trust is really key. And just thinking about the experience of the student. Also keeping in mind that our learning experience is always secondary to the patient experience. Although we're there to learn, the patient always comes first and striking that balance between advocating for yourself as a learner, but also just always being there for the patient no matter what way they need you.   Jesse Sardell  17:48   Transcribed by https://otter.ai - 6 - Well said and thank you so much. Hopefully you'll keep writing and I will look forward to whatever you write next.  Qiuwei Yang  17:53 Thanks for tuning in to this episode of Murmurs: Stories from Our Journey in Medicine. If you have any questions, comments or suggestions, reach out to us via email at murmursumassmed@gmail.com. This season was produced and edited by Divya Bhatia, Qiuwei Yang, Jesse Sardell and Lael Ngangmeni with advice from Hugh Silk. Special thanks to Jake Paulson for our original theme music and Hillary Mullan for our logo art. To learn more about medical humanities at UMass Chan, visit the Humanities Lab page on the UMass Med Library website at libraryguides.umassmed.edu/humanities_lab. We'll see you soon in the next episode. Until then keep reflecting and storytelling. 

Season 2, Episode 5: Julie

https://escholarship.umassmed.edu/cgi/viewcontent.cgi?filename=0&article=1012&context=murmurs&type=additional

Season 2, Episode 5: Julie

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