S7E12: Patient and Doctor—Navigating Medicine with a Chronic Condition

Hạ: First, new changes. Zencastr decided to get a new look in the virtual studio. Weird. It's my first week of second-year as a resident, which means I'm now . . . is it senior resident? Junior resident? Who knows what this terminology is? It's all hullabaloo anyway.

This is Ha in the virtual studio, and I'm here with a very, very special guest. I'm here with Eunice in the virtual studio. She is a fourth-year medical student at the University of Utah School of Medicine. Or I guess they've changed the name now, but she is very awesome. I've known her since she was a little first-year, and it's been really cool seeing her travel through medicine, in general. It's so awesome.

Also, for our dear listeners, my first week of second-year is on nights, so my word ability is a bit questionable right now. But Eunice has always filled my soul with joy with her love for community, her compassion, her kindness, her good energy, and she's going to make an amazing internal medicine doctor.

Eunice: Thank you so much, Ha. I appreciate all of the kind words, and I definitely would say the exact same thing about you. You're amazing, and thank you for having me here.

So just a little bit about me. I am originally from Nigeria and moved to Texas when I was about 6 years old, and kind of grew up between Nigeria and Texas. So I've had a little taste of what the education system kind of looks like in both worlds.

But I am the first of four children in my family, and really close to all my siblings. Love them a lot. Excited to be in Utah for med school. It's been a journey, but I've really enjoyed it and I've met some of the most amazing people here. So yeah, that's a little bit about me and my story.

Hạ: That is awesome. When you said, "I am the oldest of siblings," I was like, "Yeah, Eunice gives out oldest sibling energy."

Eunice: Oh my gosh. Everyone tells me that, and I'm always like, "Okay, I think I'll take that as a compliment."

Hạ: It is a compliment. The oldest siblings keep everything going and bring in the good energy.

I'm super stoked to have Eunice chat a bit more, and hopefully in this conversation you'll all get to learn even more about how awesome she is.

But before we do that, I have to give a disclaimer. The contents of this episode and the conversations that we have represent our personal views. They don't represent the views of the institutions to which we belong in. So, as always, don't fire me from my job for doing this podcast.

And now that we've got all of that out of the way, one of the reasons why I wanted Eunice here in this episode, outside of the fact that I absolutely love her and love to maximize my Eunice time, is that Eunice also provides a very critical perspective about medicine.

And as we all know in this podcast, "Bundle of Hers," we care a lot about providing a space to empower and to allow voices and stories that are often not really told to be told.

I think one of the most critical stories to really consider about, but I feel oftentimes gets forgotten, is about navigating medicine with a chronic medical condition.

Eunice, would you . . . I don't want to take the mic from you, so I would love it if you could provide a little bit more context and share a little bit more about, when I say "this conversation topic," what thoughts and what feelings come up for you.

Eunice: I wanted to kind of provide my perspective on this, both as a patient and also as somebody who's a trainee to be a future physician. And thinking about my story as a patient navigating having a chronic illness is one that evokes a lot of different feelings for me.

So I grew up, like I said, in Nigeria and Texas, and for the most part, always been a pretty healthy kid, and my family was also pretty healthy too. So I actually rarely ever saw the doctor. But I knew that I wanted to be a doctor myself, and I always thought that my first encounter in the space of medicine would be as a trainee or future doctor and not as a patient.

So in 2018 when I got sick, that was just a really big shock for me and a huge adjustment for me. During this time, just for context, I was 21 years old, I was a junior in college, taking a pretty heavy course load, and also studying for the MCATs, applying for med school. So a lot of things were going on during this time.

And when people end up having huge things that happen in their lives, it's usually during times that are not the most convenient. So it was pretty tough.

I would say, for me, how I ended up getting sick was kind of this insidious onset of I just didn't know something was wrong until a couple weeks had passed by and I was like, "Whoa, this is not normal for me."

So, basically, I woke up one day in April 2018, getting ready for my biochem class, and I ate my breakfast, did my normal routine, and I was about to step out of my dorm room and then I just threw up. I was like, "This is weird. Okay, maybe I got a stomach bug. Let's just let this go. I'll text my friends to send me the notes after class and I'll just sit this one out." Thought that was going to be the end of it.

But then the next day, couldn't eat, couldn't really keep anything down. And that basically ended up just carrying on for a whole week. I ended up just seeking medical care after a week because I was like, "This is not normal for me."

And my interaction with a lot of medical professionals when I initially presented with these super vague symptoms that were just like nausea, vomiting, stomachache, not really being able to tolerate food, was met with a lot of . . . I'm trying to think of the best way to put this, but I just felt like I was being dismissed.

I don't know if it had to do with . . . Part of it was my identity as being a college pre-med student that was really stressed and busy and I just needed to take a break, or they just did not think my symptoms were very serious at the time.

But I remember going to see a PCP, I saw a GI doctor, and I was kind of met with the same. "Oh, it's fine. You're just stressed. Just relax, reduce your course load, take a break, move your MCAT. It's going to be okay." But it wasn't okay, and I knew something was up.

So I basically carried on for several weeks with the same symptoms. But when you're not able to eat or drink anything for several weeks, something has to give. I was becoming severely malnourished. I could not really have any energy to go to class and do my daily activities anymore. I was losing a lot of weight, and then weirdly my abdomen was becoming extremely distended, and I just could not sleep because I was in so much gnawing pain.

So summer started approaching and I decided to go home. I remember when I eventually went home after those several weeks, at that point I had lost like 20 pounds. None of my clothes could fit. And my mom was the main person that was providing care for me during this time, and she really was getting super worried.

But I'm so thankful for her for being an advocate for me because, basically, about a month and a half since I first presented with my symptoms, my mom ended up going to one of my GI doctors back at home, and basically went into the office and said, "Hey, something is wrong with my daughter and we're not leaving this place until somebody admits her and you guys find out what's wrong with her and take her concerns seriously."

At this point, I had been through five ER visits, I had seen several physicians, and it really took my mom advocating for me. I felt like I had gotten to the point that I was so weak, I was so sick, I didn't have a voice to advocate for myself anymore.

That was basically just the start of my journey to getting my diagnosis and to learning more about just how the medical system worked and how to navigate that as a patient, and also as a black woman, and also as somebody who was wanting to also go into medicine myself.

Hạ: Thank you so much for sharing all of that, because you don't need to tell us all of these details, and so I want to give that space to honor that and for your vulnerability and honesty.

Hearing your story, it brought up a lot of feelings and also a lot of thoughts from me, especially as someone who's now got that MD in her name and struggles a lot with sometimes thinking about how we do patient care.

The reason why I really wanted to have this conversation is because I feel it's very important to center on these experiences and these stories about where the medical system fails and where the medical system goes wrong.

I feel that because we aren't really trained to handle these situations appropriately . . . and I think that the people within the medical system, a lot of times with the way the medical system is built, haven't had these experiences of these patients. And that's why we don't have the insight or the understanding of how we could do better.

Is our medical training even really made for people who have chronic medical conditions who could actually come in with these perspectives and really make it more patient-centered and thoughtful? It's something I really sit with.

And in trying to understand this a bit more, I would love to understand a bit more about when you felt experiences were positive with folks in medicine versus when they were negative, and what challenges did you have.

Eunice: With positive experiences that I have experienced, as a patient, I would say that one of the biggest things, and I know it seems so simple, is just really that empathy, really meeting patients where they're at.

For me, I felt that the physicians that I can still remember that really made a difference in my life, especially when things were still very unclear . . . As I mentioned in my story, mid-May was when I finally got admitted to the hospital and I was able to start getting a lot of different workups to try and figure out what was going on with me. But I didn't get my diagnosis until almost a month after.

So it was still a very scary time where I was not doing okay. I was almost getting worse. I felt like I was just being kept in the hospital barely alive at that point, and they were just giving me nutrition, but nobody knew what was going on.

And the people that I remember that really made an impact for me were the people that came in and sat with me in that pain, and scariness, and loneliness of what it feels to not know what's going on and be so scared, and basically have your life in the hands of people who are trained to be there for you, and not just treat you as somebody that's just another patient but as somebody who is going through something that's really, really scary. That's just what really helped me get through that time.

And one specific example I can give was when I was still in the midst of them trying to figure out what was going on. One of the big issues for me was pain management. My abdomen was so distended. Nothing was going through, basically. Every time they would try and advance my diet or give me something, it would immediately come back up and I would be in so much pain.

And just navigating trying to make sure that I was comfortable without giving me so many medications that it makes the constipation worse for me was a really hard battle.

I had a physician come in there, and basically, she told me like, "Hey, we cannot continue to give you these really strong pain medications because we think it may be making things worse. We may try and give you something a little bit less strong, but it probably will not touch your pain as much as the medications we're giving you now are."

In that moment, I was just like, "Oh my gosh. I feel like my experience in this hospital is going to be very different now, and I am not going to be able to be as comfortable as I was before when my pain was being managed a different way." I just burst into tears, basically.

And I was basically at a point where I don't even know what to do anymore. Nothing is even really helping. Even the pain management you guys were giving me before wasn't even really that . . . It wasn't like I didn't feel any pain, but now to completely change the regimen and still things are up in the air as to what's going on with my health, I just burst into tears.

And she just knelt beside me and held my hand. That's all she did. And I felt like just her doing that was a statement as to, "I'm here. I don't understand what you're going through right now, but I'm here. And if you just need to cry this out, cry it out, hold my hand, I'm here."

She just was there for 30 minutes. I'm pretty sure she had a lot of other things going on, and I just really appreciated that moment. That really just stood out to me as, "This is a physician that is somebody that cares for me and is just not there to tick the checkboxes for the day. She really cares about me."

And that was just something that I would say can be perceived as something small, but it was so important for me at that moment to have somebody just be there and hear me cry.

So, for me, I think empathy is one of the really, really big things. And you don't always have to have all the answers. You don't have to have something profound to say. She didn't have the answers at that point. She was just conveying a message. She wanted to let me know that the care they were giving me was going to change, and that was scary, and she just held my hand.

That's something that I also try to emulate when I am with my patients, and I wouldn't say it's always the easiest.

You brought up really good points, Ha, about the medical system is just not built to have these interactions with all your patients as much as you try, but the few times that you can, it really goes a long way.

I don't know if she remembers me, but I remember her, and I will never forget that moment.

I would say some of the challenges, though, in terms of the physicians that I have encountered during my time, would just be this automatic dismissal of patients when they come in with concerns, or when you come in with concerns and a physician just automatically is like, "This is what's happening. I already know. I know you more than you know yourself. I'm not even going to ask any further questions based on X, Y, and Z, whether it's your looks, your beliefs, where you are in life. I'm going to just put you in this box, and I'm going to say this is what's wrong with you."

I've come across that so many times. That's one of the biggest challenges, especially with my diagnosis.

I was diagnosed with lupus. Especially with my diagnosis and how there are so many different systems that lupus can affect, and there are so many different ways that people are affected by this disease, there are certain people who can basically live a "normal life" and may not need to get as thorough of medical care throughout their time with the disease while others need organ transplants. You have such a wide spectrum.

And I feel like a lot of times, people just want to place you in this box and say, "This is where you belong on that spectrum. And based off of that, I'm going to either not take you seriously or just outrightly ignore whatever concerns you feel."

You need to remember that this is somebody's body and they've lived in that body, and if they say something is wrong, to take their concerns seriously. And that's something that I struggled with even before I got my diagnosis, and I struggle with now as I continue to get care as a patient.

Hạ: I think one of the trickiest things for us, I don't know about other specialties, but for pediatrics, is our kiddos with chronic conditions that include pain. We have a specialized pain team at the hospital, and even sometimes we max it out and the kid is still in a lot of pain. And I sit so much with, "What can I do for this child?"

I really appreciate what you said about empathy, and just presence, and being there, and sometimes not even having answers. I think we as healers, we want to fix things, right? So I want to go in and have answers, and it makes me so uncomfortable when I go in and we've maxed out your pain regimen and your pain is still a 9 out of 10 in severity.

And so hearing you just talk about that, it really re-centered me and re-brought me back to, "Oh, it's so important to just even give them the space to feel their feelings. And sometimes it's not about the solution, but just being there."

Then, similarly, just hearing about dismissal and stuff, I think we anchor a lot on common diagnosis. And it's hard because sometimes, for me, the child comes in and it is a viral URI, but sometimes you don't want to miss stuff.

It's just so hard to do that balance, but I think it's such a disservice because I do notice that a lot of times this imbalance particularly happens to patients who can't advocate for themselves, who are just used to the system disappointing them.

And typically those patients, I've noticed, are patients who are black, indigenous, coming from minority, historically oppressed communities. And so they just live with it, and they just don't really . . . They feel like there's no point in fighting the system, in a way, to advocate.

It also happens in patients who just don't know how to navigate the medical system that well. And it does such a disservice.

Then, for the other hand, I feel like sometimes when the patients do have the toolkits to advocate, they're able to get exactly what they want. I just think about, "How do we make this care more equitable in that way?"

I don't know if you've had any thoughts about it since you've probably been able to muse about it quite a bit too.

Eunice: I do feel like a lot of times when we are having this conversation just about how do we create this system that is going to be more equitable, I feel like it's just so hard to really do this topic justice. I feel like we need a whole other episode to be able to really dig deep.

Hạ: Story of "Bundle of Hers," Eunice.

Eunice: I know. It's just so disappointing because I feel like the medical system just really, really fails patients of color and so many communities, and it just really hurts my heart.

A weird conundrum, I would say, for me, is I had so many issues when I was receiving care. It wasn't just issues with interacting with physicians and getting physicians to actually believe me, but it was also the bill that you just get slapped with.

I went to the ED a couple times within a month and I got slapped with this horrible, horrible bill. I was in a situation where I was also about to start medical school and I needed to get loans, but you have this bill, and they're like, "We're going to try and get this money from you any way we can, but then you're trying to pay your medical school loans at the same time."

I was in a financial situation due to the medical system that failed me so much. I was almost in a situation where I could not get loans to even go into medical school.

And I feel like part of the problem and why we're failing these communities is that we do not have enough people that look like these patients that are in these situations where they can provide care to these communities.

And especially when you're looking at black communities, indigenous communities, we need more physicians coming from these areas. I basically had the medical system almost even stop me from being able to provide care to these communities and even get into medical school and do all these things.

So I'm just trying to say our medical system is so messed up that part of the aspect of making medical school and going into healthcare, something that's accessible to a lot of these people in these communities is just so difficult that I don't even know where to even start from when we're talking about "How are we going to make it more equitable?"

There are just so many layers of thinking through how we failed these communities in so many ways, and we're not even creating a system where we're making it accessible for more people that look like us to be in these positions.

That's what we need. We need more people that look like us. And I am glad that I was able to kind of navigate my way through that, but not everybody is in a situation where they could.

Hạ: Also, the question is about thinking about intersectionality, too, in this component of the situation. There's not only the historical oppression due to race, there's also not the historical oppression due to financial constraints, but there's also the historical oppression that benefits able-bodied folks versus folks that are not able-bodied, right?

And it's wild because we are trained to care for patients from the well babies to the most complex chronic medical conditions, and yet we have not designed a system that allows for that equity with first bringing people into the system to train, and it has ripple effects.

Eunice: Yes, it does. At least for me, when I initially got diagnosed, I felt like I did not really know anybody that was in a similar situation where they had this chronic condition where they would be needing healthcare for their lifetime, basically, and they were also able to successfully navigate a career in medicine. I felt like I didn't have anybody that I could really look to for this.

So when I initially got my diagnosis, unfortunately, I was in a situation where a lot of the voices I was hearing were telling me that I need to choose a different career path and that this career path was not made for people like me. I almost gave up because of this, and I am so glad that I didn't.

But it is so interesting to think because once I got my diagnosis and once I was in a situation where I let everybody know basically that was close to me, "This is the reality of my situation," I thought this was actually going to be something that would make me even a better physician because I would have had a lot of experiences that I could also really draw on to take care of patients. But I was met with a lot of resistance and a lot of negative comments.

And to be honest, there have been times in my medical journey where I felt like, "Was the system really made for me? Were those people right?" Because it's not been easy.

And that's kind of what I wanted to just mention in response to what you said, is we're taught to care for the sickest people. However, we don't really have a way of letting people that do have chronic conditions and do need medical help . . . we are not really welcoming them into this space and not really letting their voice be heard.

I feel like, for me, even if all people take from this is that there are people with chronic conditions who are in medicine, who are here to do great things, and really want to be there and advocate for their patients, that's just what I want at least one person to know.

I feel like if I at least had that, I would've been a lot more comfortable with my decision when I decided to go to medical school, and not really scared and not feeling like, "Oh my gosh, am I making a mistake? Is this system meant for me? Am I going to be able to make it through?

Hạ: I really appreciate you sharing that so much. And I think it's something that I sit and think about, because I feel like even for someone who's able-bodied, with the way that the system is set out, thinking about even trying to . . . For my able-bodied peers and myself, it's even hard getting appointments to go to the dentist, to get our PCP, and to do all of these things.

I remember once I needed an appointment for an eye doctor and I had to book it out and reach out to my chief residents months in advance to just get it, and then they canceled. The eye appointment doctors canceled on me and rescheduled. I was like, "Wait. This was impossible."

It's so frustrating. We have created a system that's not built . . . And I hate that the system made it feel like you didn't have a place for you to go where you're like, "There are people that can do this," or to get the support, because you bring so much greatness to medicine and you bring such an important . . . Your personality and everything are already wonderful, but you also bring such an important perspective.

I think our medical field does better when we let a lot of people come in from different perspectives instead of just one. That's how we grow. That's how we meet people where they're at. And it angers me, Eunice. It angers me so much that the system isn't built for this.

Eunice: Yeah, it angers me too. Trust me. And that's why I'm just so glad that I've been able to be given this space to really talk about my story, because I just want people to know that they can do it.

There's so much negativity that's just being said. Especially when, like you said, even people who are able-bodied are struggling to even get just basic checkup appointments that are usually yearly. And then you have people who need multiple appointments, several different physicians scattered throughout the year.

So just having to think about, "How am I going to navigate this as I continue to progress in my training?" is a scary thought, but it is possible. And I'm hoping that this inspires somebody.

I'm also wanting people to know that it is still difficult and it still needs so much work. I think if we have more people talking about this, hopefully we can get some sort of change that will happen and more people in positions where they can really fight and advocate for people with chronic conditions in medicine. We are out there and we deserve as much as everybody else, and we also cannot care for others if we are not cared for ourselves.

Hạ: Thank you so much, Eunice. That was absolutely beautiful, and I think that's a great way to close everything. I hope that with this topic and our conversation, it's really helped you explore about what it means to be a patient and then also to navigate medicine on the other side. And I also hope that it helps you kind of discover more questions that you want to think about, more perspectives that you want to get.

I'm trying, y'all. I just want to put it out there again. On nights. I'm about one minute away from walking into sign-out for my shift, but . . .

Eunice: You're doing great.

Hạ: I really thank you all for listening. We always love your participation and feedback. Follow us on Instagram. You can listen to us wherever you listen to your podcasts. Subscribe, review, send us love, send Eunice love, and follow @timmiejoon on Instagram. That's for you, Mariam.

Signing off, Eunice. Do you want to be the last one to say goodbye?

Eunice: Bye, everyone. Thank you guys for listening.

Hạ: Love.