Theresa Brown, HEALING: When a Nurse Becomes a Patient
Zibby is joined by New York Times bestselling author and oncology nurse Theresa Brown to discuss Healing: When a Nurse Becomes a Patient, a riveting memoir about navigating the imperfect American healthcare system after a sudden breast cancer diagnosis. Theresa talks about the lack of compassion she encountered in a profit-obsessed system, the challenge of writing this book before coming to terms with her experience (it took moving to a new neighborhood!), and the complex topic she’s tackling in her next book.
Transcript:
Zibby Owens: Welcome, Theresa. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to talk about Healing: When a Nurse Becomes a Patient.
Theresa Brown: You are welcome. Thanks for having me. I love the title. I remember those days.
Zibby: Oh, I thought you meant your title. I was like, yeah, it’s really good.
Theresa: No, no, “Moms Don’t Have Time.”
Zibby: Thank you. I also like your title, so there we go. Would you mind telling listeners what your book is about?
Theresa: I would not mind at all. Five years ago now, I was diagnosed with breast cancer, a very small tumor, slow-growing, but nonetheless terrifying. My background is, I’m an oncology nurse. My real background is, I have a PhD in English. I taught English in college, had kids, had a life change, went back to school, became a nurse, worked in oncology and in hospice. I knew how bad cancer can be in a very visceral, detailed way. I think even if you don’t have that, a diagnosis of cancer is always terrifying. I was terrified and went through treatment and was surprised to experience all these ways that the health-care system was just completely lacking in compassion toward people. Clinically, I got great care, but there were so many glitches and things that happened that were scary and hurtful and made me feel abandoned. What that did was it made me start thinking about my work as a nurse. I knew there were glitches. You’d have to be living under a rock not to know there are problems in our health-care system. I thought I and the people I work with, we care so much. We make up for anything that goes wrong. We make the difference. The care we give is great. We save people’s lives. As a patient, I just saw, no, it’s not like that. There’s a huge gap between what patients need in terms of having their humanity recognized and what they get.
The book alternates between me learning I have cancer, getting treatment for cancer, managing that, and looking back on my time as a nurse. This is a good tip for moms who don’t have time to read. My son, who’s twenty-six now — I’m bad at remembering ages — read the book. He said, “You know, that back-and-forth, at first, I thought it was annoying. Then I realized it was your mindset.” That’s another tip. I appreciate his honesty. He said it in a very loving way. That’s a tip for this alternating I was doing in my own mind between, oh, my god, now I realize, wow, we can’t make up for that — we can’t make up for the person who came in to get chemo and it was really, really, really delayed or just all the things that are going on with people. This is a very long answer, I realize. Basically, what it comes down to is, having cancer is terrifying. Some of that is because we’re not really told, as I was not, this is very treatable. It’s small. We can handle it. We know how to take care of this. Some of it is the reality, that people, every year, die of cancer. It’s one of the leading causes of death in the US. Our health-care system just is not there to deal with that terror, anxiety, worry. It’s much more like an assembly line. We’re people, not widgets or TVs or cars, and so we need better. I wrote the book in a hope for better.
Zibby: Wow. What you did so well is, even though that was a fabulous summary, in the book, you show us with so many examples, all the flaws and weaknesses and just little moments where compassion on the part of a nurse or a health-care worker of some type would’ve made the biggest difference in the world to you, particularly when you talked about your whole diagnosis. You take us through all the steps of that. There was this one particular nurse, the one nurse who left early and then the other nurse who was just like, “We probably can’t give you your results until Monday.” You’re like, “How can I just spend a weekend waiting? So you’re telling me that the results will be there, but they’re going to be on your desk and you won’t have time to call?” She’s like, “Well, I leave at three.” You’re like, what? Then she never called you. She never called you.
Theresa: Right, yes.
Zibby: Insane. How do you make sense of that? What do you make of that, especially because you’re such a compassionate nurse yourself? What can we do? I know at some points you said it’s not the fault of the individual people. It’s the structure of the system and everything. How do you take out the compassion of someone, or empathy, even just to say, gosh, I wouldn’t want to wait all weekend long either?
Theresa: When you get right down to it, it is individual failure. It is on that nurse to just say, I leave a four. That’s not an answer. If the buck stops with you, then you need to do something different. You can’t just say, I leave. That’s it. You’re going to be hanging. I try to be careful to say it’s the system. Also, that was part of what was so painful for me in my own treatment, is realizing, oh, I had moments like this. Not like that. I was never like that. I find that particularly bad. I certainly had moments like that. I’m going to give what may seem like a little bit of an indirect answer. I talk in the book about radiation oncology, which people don’t usually think of as being warm and fuzzy. It’s the most creepy aspect of your treatment. Where I went for radiation oncology, it was so great. It wasn’t like they had a patient compassion initiative or banners up saying, “You’re important.” It just was obvious in everything that they did. They had a Keurig machine. I know COVID has made that complicated, but this is before the pandemic. Just a simple thing like that. They had a Keurig machine that was well-stocked. They pointed it out to me. You were supposed to come in and check in by putting your index finger on this thing that sometimes worked, sometimes didn’t and use the computer. A couple times, I forgot. The secretary said, “Oh, I’ll just check you in here. It’s fine,” instead of saying, use the computer, which has happened to me more than once.
Then I didn’t like having to wait in the waiting room with the television on. I don’t know why. Let’s Make a Deal before radiation just made me incredibly anxious. I don’t know why. I said, “Can we turn the TV off?” They said, “We’ll talk about it.” They said, “No, we can’t because some people like it, but you can sit in the hallway. This was five days a week, four weeks. Sat out in the hallway. A tech came out and got me. He never said, you’re really making me work extra here. People would not believe the things that get said to you. I’m not exaggerating. That particular thing didn’t get said to me, but I know that kind of thing has been said to other patients. They were just so wonderful and lovely. One of the techs — they were all in their twenties. Anyone who knocks millennials, I feel like you just haven’t spent time with people. I just want to put that out there.
That said, I know that when you work in a system where you’re constantly being evaluated on your output — did you fill out this form right? Hey, you got this detail on this fifth computer sheet you were supposed to do wrong. That is going to beat the compassion out of you. It really does have to start at the top, but it doesn’t have to be complicated. It has to be a recognition that the people doing the work are also human beings. That’s going to enable them to treat patients like human beings. We have gotten so far away from that by allowing to develop, this health-care system that’s so focused on money. Are you able to pay? How can we maximize revenue? Discrimination, if you look at — the rates of cancer death among African Americans are much higher than among white Americans. The people who get denied care just because they don’t have the money to afford it, on and on and on, all the stuff we read about during COVID and that most people are very aware of, this is how it plays out. It plays out in that casual cruelty, I think is not too harsh a word to use. Then what I try to also show in the book through data and research is that compassion really does help people heal. This is not just about, no one made me feel like a human being. It’s much deeper than that. It really makes a difference in terms of how well you do, whether you’re willing to listen to what’s being said to you, on and on and on. It just has a cascade effect that can either be positive or negative. We want that to be positive, right?
Zibby: Of course.
Theresa: We’re here to heal people. That’s supposed to be the goal, helping people.
Zibby: It’s true. I know. It’s like putting all these ingredients that didn’t go well together in a pot. You have all these people with fear and uncertainty and just totally unsettled and then another group of people feeling angry and tired and resentful and stressed and overworked. It’s just the worst combination. It’s hard to make that into magic.
Theresa: That’s a great analogy. I love that analogy, angrily throwing everything you can find into a pot. This is what the recipe calls for. Just take a minute and say, I think maybe a little bit less salt. Maybe a little more tomato.
Zibby: It’s true, or we have to get a different pot. We just have to change the whole ecosystem. I think there are some things — I don’t know how you feel. I feel like even scheduling appointments can be stressful. You keep hearing, I found this out, and then I couldn’t get an appointment. I just read this book about a woman who broke her arm. She could not get in. She had to fix it within three days. Then she couldn’t get an appointment. Her whole family just had to keep calling around to different orthopedists. That was from the ER. This is in a book called Twenty-Two by Allison Trowbridge. This happened a while ago. It’s so not unique in that it happens all the time. You hear people being like, I can’t get into this doctor or that doctor. I feel like some things are workarounds, like Zocdoc and online scheduling, which takes that down. Still, even getting X-rays; even, you need an MRI, but wait, you might have something so terrible — now your insurance — I don’t know. I’m just venting at this point. It’s so hard.
Theresa: No, that’s exactly right. I recently — it was actually during the pandemic — partially tore my rotator cuff in two places, which is really painful. It’s mostly healed now, which is great. It’s a small thing, but it’s a big deal. It sounds like you know. Maybe people listening know too. The whole wait for an authorization, what I would do is just call and make the appointment and assume it would come through. People who don’t know to do that — you have this painful shoulder injury. You don’t know what’s wrong. I was at home. I was writing the book. What if I had to work? What if I had to do work that involved me using my shoulder? Let’s be honest, most jobs are going to involve that. What am I supposed to do while I’m waiting for my diagnosis? That just kills me because we have this culture that’s very much like, if you’re not working, you’re malingering. Yet you can’t, in a timely manner, get the health care that you need that would say, no, I really shouldn’t be working because my shoulder’s really hurt.
Zibby: It’s not like people who are trying to get MRIs are big scammers. There are other ways to make an extra few bucks or to steal. They’re not like, ooh, I’m going to try to get an unauthorized MRI of my left kneecap today. Just give the people the authorization. Why is it even required? Maybe there’s a need for a new insurance model. Obviously, there is. I know people way smarter are working on solutions.
Theresa: That’s such a great and amazing point. No one’s like, you know what, I’m going to rip off my health-care system. I’m going to get a colonoscopy.
Zibby: Exactly. It’s ridiculous. What are they protecting so hard against? The cost/benefit, you’re stressing out ninety-nine percent of the people unnecessarily. Then they come in even more stressed. Then they deal with the tech who’s there who’s — it’s this ball of inefficiency and emotional chaos.
Theresa: Right, and then people who just get incredibly angry because they had to wait, which I understand. Also, I think that’s become a thing that people feel like they can get upset about instead of saying, why is this whole system so terrible? Why can’t it be more respectful of me as a human being, my time? I hear you. Such a great point. Nobody’s like, I just want to sit in an MRI machine. I really love those loud clicks and bangs.
Zibby: Let me in. This is fun.
Theresa: I’m just going to pretend my shoulder hurts. There’s this syndrome called Munchausen where people pretend they have health issues, but it’s very unusual. Most of us have better things to do with our time.
Zibby: Exactly. Ridiculous. That’s funny. If I were to start my own MRI business, how would we do it? How would we all do it differently? When did you decide to make your experience into a book?
Theresa: That’s a really good question that I’m not sure I have a great answer to. Being a writer, I just had stories in my head. It was probably at least a year or a year and a half until I was done with treatment. Probably about a year, I had been thinking about, what’s my third book going to be? Then I was diagnosed and then just couldn’t figure it out. My agent said — couldn’t figure out this book. Sorry, I’m not being clear. She said, “Theresa, you’re still grappling with the dragon,” by which she meant, you’re still coming to terms yourself with everything that happened. You’re not ready to write about it, which was exactly right. She said, “I don’t know if you need a break or what.” Then we made the decision to move. We’d always lived in the same neighborhood in Pittsburgh. In Pittsburgh, if you move, especially because we moved across a river, it’s just like, oh, my god, you might as well have gone to Tibet. We moved to a new neighborhood. We crossed a river. That was what I was focused on, the move and getting us there and selling our house.
Got into my new study in the house. Suddenly, the book started to make sense. Then I was able to put it together. I’d sort of written pieces. The whole book was like that. It was the most unusual writing experience where even though I had an outline, I could only write a very small amount. I could never see into what was going to come next. It was my life. I knew what had happened, but I couldn’t see exactly how I was going to write it. It was just a fog. I did have, definitely, some anxiety. What if I get to a point where I don’t see into the fog anymore? The fog clears, and there’s nothing there? That didn’t happen. It was always that back and forth and these very short chapters that I wanted to be gem-like, not in the sense of, this is amazing and beautiful — although, that would be nice — but refracting light in different colors and shapes and textures and different intersecting hard surfaces. That was really my hope for the book. I hope the next one will be a little more straightforward.
Zibby: Do you already know what it’s going to be?
Theresa: I’m thinking about writing a book about pain, which is a huge topic. I’m not sure what angle I would take with that.
Zibby: Sounds uplifting.
Theresa: Yeah, I know. That’s the other thing.
Zibby: I’m going to write about agony and disaster. Great.
Theresa: It’s true, though.
Zibby: Managing pain and being — it’s all sort of of a piece, I feel like. You’re trying to increase empathy among everybody for what people are going through.
Theresa: Right. How do we think about our pain? Interestingly, back when I was a PhD student in English, that was some of what I wrote about. How do people tell narratives about trauma? This great book came out called The Body in Pain by a woman named Elaine Scarry, who was at Harvard. I think she still is. It’s a great book but also a hard book. She went to Amnesty International archives. I’m not going to be doing that. I’m going to try to find something a little bit less mired in the worst possible pain you can imagine, a little more ordinary, which can still be terrible, but what we go through. It is all of a piece, yeah.
Zibby: Now my mind is kind of spinning on how to make this experience better because everybody has to deal with the health-care system. I feel like even this conversation has made me shift how I feel about even walking into it. If I know I’m going into a fraught situation, I’ll have a different — as opposed to thinking everything’s going to run smoothly — maybe we should all bring a little card or two with us for every doctor’s appointment or things that we feel stressed about. The card is something like, “I know you’re having a rough day. You have a thousand patients. You don’t have to pay attention to me, but you’re making my day by even thinking about my life. Thank you.” I bet it would change the whole dynamic and the whole rest of their day.
Theresa: Wow, that is a great idea.
Zibby: It’s so cheap. You could just handwrite it on a scrap of paper and put it in a — I don’t know. I think I’m going to try it next time. If everybody were to do that or approach it with that attitude — anyway.
Theresa: The one thing I really encourage people to do — I keep intending to write something about this. If something goes wrong and makes you feel bad and or you feel like you weren’t attended to, complain, but complain appropriately. Here’s what happened. Here’s how it made me feel. I do think places want that feedback, but you want to make sure —
Zibby: — Not to get people in trouble.
Theresa: Right. For example, at an oncologist appointment, they had me in a room where they were getting my vitals. A nurse didn’t knock on the door, came into the room, and just stood there and didn’t say anything and stared at the computer screen. I got very upset. I talked about it, and they listened. It seems like that’s just basic manners. Having an opportunity to have management remind people, these are human beings, they are vulnerable.
Zibby: Amazing. Theresa, thank you so much. I feel like this has changed my life, our little, brief conversation.
Theresa: That’s so lovely.
Zibby: I hope your book will do so too, Healing by Theresa Brown. Thank you so much.
Theresa: Thank you. You’re welcome. Bye-bye.
Zibby: Buh-bye.
