Drawn from personal experience and research, authors Taylor Harris (This Boy We Made), Anushay Hossain (The Pain Gap), and N. West Moss (Flesh and Blood) share their individual stories and keen insights into the American healthcare system. Going beyond a retelling of their experiences, these authors explore the assumptions, expectations, and fears revealed by modern medicine. In conversation with Elizabeth Irvin and Andrea Mayfield from The Women’s Initiative.
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ANDREA MAYFIELD: Hello, everyone. Thank you for coming. Thank you for being here. My name is Andrea Mayfield. I’m the deputy director of the Women’s Initiative, and I’m joined in moderation by my colleague Elizabeth Irvin, who is the executive director of the Women’s Initiative. We are pleased to welcome you on behalf of the Virginia Humanities, producer of the Festival of the Book. And we are honored and grateful to be here in the Jefferson School African American Heritage Center.
Today’s discussion will center on life-threatening unknowns and inequities in American healthcare. But before we get started, we have a few announcements and brief requests. Please take a moment to silence your cell phones. Following the event, we invite you to tweet away using the hashtag #vabookfest or #vabook2022. This event is also being livestreamed, so we welcome those in virtual attendance. The Virginia Festival of the Book is free of charge, but it is not free of cost. Please support Festival programming with a donation by visiting VaBook.org—
So, with that in mind, we will remove our masks for a period of time so you’re able to hear us clearly. Elizabeth and I are in the lucky position of having read each of these books, and they are phenomenal. With that in mind, please support Festival authors—
N. WEST MOSS: I have a friend with breast cancer. She had a double mastectomy and spoke at a bunch of high schools. And over and over, she was asked in one way or another what did you do to get breast cancer. You know, what did you eat? And she kept having to bring it back to genetics, etcetera.
I also think we are flooded with television images about women being hurt. I was thinking on the drive here from New Jersey about Law and Order: SVU. And I looked it up to see how many seasons there are—twenty-three seasons, it turns out. And for me, when someone says your book is gory—there are about two pages at the front where I have intense uterine bleeding that I decided to discuss frankly. But I think of Law and Order: SVU as an example of the ways that we are trained to think it’s okay for women—they’re cadavers that are beaten and burned to be shown on TV on a nightly basis, to be stalked and harassed and raped and murdered and that is actually accepted on some level. But talking about my body and its natural functions isn’t.
N. WEST MOSS: In the book, it’s also by the way about a happy marriage and also about the ways that people care for me, which I also don’t think we have a lot of language for. The ways that my mother took care of me, my husband took care of me. There’s not a lot of tension in a happy marriage, but people don’t know how to talk about things without it being—
N. WEST MOSS: —get married or not or get married six times. You can have a thousand kids or no kids. You can be a lesbian or a nun, go to school, travel the world. We drove for a while in silence while I sort of took in what she was saying or tried to take it in. The point is, she said, all the women who came before you would’ve killed to live right now. So, be free. Do what you want. Be happy if you can. I’m still figuring out the implications of that conversation.
ANDREA MAYFIELD: What if everyone had such a motive, right? Indeed. Taylor, this book you made reveals the intersecting inequities of maternal and child health, especially around race and mental health. Can you point to a moment in your book that demonstrates how these issues are faced by Black mothers?
TAYLOR HARRIS: Can you hear me? Okay, thank you. And I also just want to briefly say there are multiple women in this room who cared for me when I had my double mastectomy. And I’m thinking about your words, West. You’ve got drains hanging out of you. It’s not something you really want to share. You’ve got your A-line bathrobe on to like cover. And I had a woman come to my house to cut my hair free of charge and do my hair free of charge because you can’t lift your arms after surgery. So, I did not plan on sharing that, but I just feel compelled because this is such a safe space. So, thank you all.
Speaking more to Andrea’s question, I’m going to share a few thoughts and then read a passage. There’s this quote that I sort of keep—I have a dry erase wall at home. It’s my way to like just write down thoughts and plan as I’m sort of thinking what I want to write next. And there’s this quote that I came on from I think she’s like a theologian and poet named Rose J. Percy, a Black woman, who says, “Be careful where you take your steps in that place. They did not build it with your face in mind.”
And I think that really anywhere in America—for sure here in Charlottesville—that’s something that I keep in mind as I walk into a space. She just put it in much better words than I could find. I see one of my friends here who I spoke to years ago after I had one of my—I have three kids. After I had one of my babies at Martha Jefferson, which is a lovely hospital, but there is a mural. And somebody will have to go around to the maternity ward—hopefully not because you have to be there, but there was a mural there of the people who help make a hospital run. And you can kind of guess maybe which role the Black woman played. I’ll give you a hint. She was not the doctor in the mural. So, I think that really speaks to this quote too.
I was thinking today that privilege might be described as not needing an “in.” So when I go into a hospital setting with my son or someone else, my first thought is like what’s my “in”? So is it because my husband is faculty? Is it because we know Dr. Tyson Bell or Dr. Cameron Webb or Dr. Leanne Webb or Dr. Ebony Hilton? And that if I can just page them really fast, I can be guaranteed to be seen.
And the last thing I’ll mention before I read is that there is just a waste of time and imagination that we deal with with racism. And so, again, someone who uses words better than I do—the poet Ross Gay calls it a corruption of the imagination or a waste of the imagination. And I think about that a lot. That, man, if I weren’t spending so much time thinking about is this doctor seeing me, is this nurse taking me seriously, do they see my son, what else could my imagination be used for? There is a cost to this. There is a cost on their part because they could be using their imagination to heal. And there’s a cost to me.
So, what I wanted to achieve with passages like the one I’m reading is not so much fix it or tell you all the statistics because there are people who can do that way better. Some of those doctors I mentioned do a lot with equity in healthcare. But I wanted you to sit with me and just feel what it’s like to have an emergency, to be receiving information, and at the same time to be sort of sorting through and trying to figure out if this is an effective system of racism, if you’ve experienced a microaggression, or if you’re just paranoid. So, I’m going to read from an earlier section in the book.
And we have taken my son Tophs to the hospital. He had to stay overnight. His blood sugar had dropped to twenty-seven, which is dangerously low, and they are coming in to tell us what they found. And sorry, one more note. We had spent like a huge amount of time trying to trap his urine in a plastic bag because he’s a baby. He’s like not even two years old. And it turns out it’s really hard to trap a baby’s pee.
Before we could go home, an entire team filed into the room, one or two people left in the hallway, unable to fit inside. No one standing in the long line of white coats said we don’t know what happened to your son. A nervous medical student with straight red hair shakily read her note cards aloud to the crowd and presumably us. Bless her heart. I felt more concerned for her confidence, her ability to pull through this, than I did for Tophs. I’m thankful for teaching hospitals, but human touch seems destined to get lost in the performance of it all.
She said Tophs had likely experienced ketotic hypoglycemia, a recurring condition in which a child’s blood glucose level drops after a period of fasting or illness. It’s a diagnosis by exclusion, meaning the doctor’s best guess when nothing else seems to make sense. A urine sample usually seals the deal, but, she briefly mentioned and moved on, something had happened to Tophs’s urine sample. That liquid gold the superhero nurse had trapped in a plastic bag was gone. They’d sent blood samples to the Mayo Clinic to rule out any more serious underlying conditions, and we’d have to wait a few weeks for those results. The team recommended Tophs never miss a meal and always eat a bedtime snack high in protein and carbs. He’d probably outgrow the episodes by eight or nine years of age.
The monologue/exam ended, and we his parents were given the floor. Several people stared adoringly at Elliot and Tophs, commenting on their cuteness, which was nice, but I was still waiting for a doctor to step in and talk to use without the awkward pauses and index cards. “Do you all have any questions” the doctor asked.
“You mentioned something about a urine sample,” Paul said, and I knew where we were headed.
“Yes. Unfortunately, we didn’t get results on that.”
Paul loved people but rarely feels trapped by their thoughts about him, and he’s got this way of asking questions—even pointed ones—that politely pin you to the wall. A Black male, even one with a crisp goatee and blazer, must inquire in the most peculiar way, his nonverbal cues and tone alternating between calm and concern. He must not offend. He must show his spine. He must not offend.
“Didn’t we collect a sample? I’m not sure I understand. What happened to it?”
I had worked so hard with those nurses to collect enough. While I’m the type to put my head down and avoid making anyone uncomfortable. I was glad Paul wasn’t afraid to call out what they’d conveniently glossed over.
“Someone downstairs must have thrown the sample out” was the most we got. No effusive apology because they’d missed the window to collect sensitive data on the cause of our son’s illness.
Later, I read in Tophs’s record that someone had sent the urine down to the lab without orders. Hospitals are run by people, many of whom work long hours, but in these moments Paul and I shift quickly. Our thoughts go to race. If a white professor and his son had been in the same situation, would the same answer have sufficed? Even if doctors couldn’t recover the sample, would they have apologized? Would they instead have led the conversation with what they’d lost?
When Paul told his friend Sydney, a doctor, that we were in the hospital, Sydney reminded Paul to let the staff know who he was, an alum of and professor at UVA. We could be gracious, yes, but for Black people receiving medical care the world leaves no room for humility or deference. We knew too many stories. We’d been warned to look for disparities in treatment. But we didn’t really have to be warned. We’d experienced variants of it all our lives.
ANDREA MAYFIELD: Taylor, how did you maintain a sense of hope in the face of all of those unknowns?
TAYLOR HARRIS: I feel like somebody—like I’ve got a song about that too. This is not a long passage, but I did think about that question because it’s an important one. This isn’t just like a doomsday memoir. And sometimes when I talk about these medical disparities, I don’t get to really give the reader or the listener a sense of Tophs. So, I’m going to read a quick passage that really gives you a little bit of a sense of him and how wonderful he is.
One inviolable rule in our house is Tophs never goes to bed without a snack, a rule reinforced by the memory of that morning when he barely woke up, when his eyes looked glossy and large, when we rushed him to the ER, his body limp and heavy, and walked back through double doors right into the after.
On a summer evening before we moved from Northern Virginia, Tophs slipped out of bed just after I tucked him in and asked for another snack. I groaned from my place at the kitchen sink, knowing he’d probably had enough to eat, but I’d never forgive myself if.
“Get it yourself, Tophs,” I snapped. I snapped a lot during those eighteen months, fighting with no one in particular. He quietly pulled a container of blackberries from the fridge and sat at the kids’ wooden table by the kitchen windows. He sat and ate without a word, without even loudly sucking the berries in through his lips as he sometimes did to amuse his sisters. I’m not sure why, but I stopped washing dishes. I pulled out one of those small, hard chairs and sat down next to him. He looked at me, lips stained purple, eyes like moons, and then turned his gaze outward toward the sky, slowly swallowed the sun, and exhaled thin breaths of peach and rose and plum. And I took him in. I drank deeply while he sat perfectly content as strands of sunlight and shadow made one final stretch across our wooden blinds and onto our hands. I knew everything about my son in that moment, everything I needed to know. He watched and ate until the berries were gone, and then he slipped off to bed as quietly as he’d come.
ANDREA MAYFIELD: Thank you, Taylor. That was indeed a song. And I’m sure that many of you have questions, and I promise that we will indeed have time once all of the authors have spoken, such that audience members can also weigh in.
Anushay, in your research for The Pain Gap, you spoke to nearly one hundred women, all of whom had their pain dismissed by medical professionals. In what way did these conversations confirm or challenge the ideas that you held about health disparities?
ANUSHAY HOSSAIN: Thank you so much for that question. Thank you so much for being here. I’m so excited to be here. I went to UVA, and I love Charlottesville so much. I actually became a writer here. I will answer your question. But I came to camp here before I went to UVA, when I was seventeen, and it was a young writer’s workshop. So, I’m so happy and honored.
It confirmed that things were worse. Things were worse, but really confirmed that every woman has a story. Every woman has a story. And she usually doesn’t tell anyone her story, and most women keep their stories to themselves because they know they’re not going to be believed. And what was really interesting doing the research for this book, which is called The Pain Gap, was that during the research of this book I discovered there’s also a credibility gap. There’s a knowledge gap, there’s a pain gap, there’s a gender gap, but there’s a credibility gap. Women are not believed about their bodies, not just when it comes to healthcare. We’re not believed when we’ve been raped. We’re not believed when we’ve been harassed at work. We’re not believed when we say we’re in pain. And what’s so interesting about writing the book when I did was that there was so much research coming out, backing what women already know. We’re not believed. We’re dismissed. It’s almost always never all in our heads. It’s almost always a tumor or like cancer or like endometriosis.
So, what I discovered was that every woman has a story. And I actually started the research for my book there, by talking to women. And I’m sure, as you know, as soon as I spoke to one woman, she was like you have to talk to my friend, or you have to talk to my mother or my sister. And everybody either had a story, or they knew somebody that had a story. And everybody always started the story with, “I didn’t know if I had imagined this or if I was crazy,” but X, Y, and Z.
So, it confirmed that things are worse, but it also confirmed—I mean, similar to your book. My book is actually—it sounds like it’s all about doom and gloom, but it’s actually very, very hopeful. I mean, women’s health shouldn’t be an enigma. And it’s not about a lack of knowledge or resources or anything—expertise. It’s really a question of do we value, do we prioritize women’s health, their lives, their perspectives. Do women’s lives matter? And the answer is no. And that is a really big problem. Every time I say it out loud, I get so angry. Because the kind of standard for health, especially in American healthcare, has been a middle-aged white guy. And in many ways, the systems are actually working exactly how they were intended to be working. But America’s face is changing.
So, it’s a very interesting time to have these perspectives. My mother loves to remind me she could never speak—women just weren’t supposed to speak out like that, about this, this, and that. And I go but it’s true. I always say but it’s true. I’m not just caterwauling about something that isn’t a fact or something that you imagined. But anyhow, so I think it’s interesting because I see it with my girls, and I feel like—I have two young daughters who are ten and four. And I feel like they will never stay quiet about their story.
And I tell my ten-year-old even now that if something bad happens to you, don’t keep it to yourself. Like tell me. Tell everybody.
ANDREA MAYFIELD: Can you share a few strategies from your book that women can use with medical professionals, for doctors who do not take us seriously?
ANUSHAY HOSSAIN: That’s a great question. That’s one of my favorite questions. And include a number of ways—how to better advocate for yourself period. But I really have to stress the onus really shouldn’t be on women that we’re not believed. It’s always like the problem is us and the solution is us and everything is somehow traced back to us and it’s our fault.
But what I call for in the book that’s quite revolutionary and scandalous is to start believing women. Let’s just start there. If we can make a cultural shift—because right now the go-to and the instinct is to not believe women. Women don’t even believe each other. So, if we just start—just give her that. Just say, okay, I’m going to assume that you are not lying in the ER.
Or by the time a woman—this is another thing I always say. Women are so busy. We’re doing so much stuff. We don’t have time to like just make up an illness and go to the doctors’ office. That takes a lot of time. Right, and women are such good—we’re such good managers, and we’re such good managers of time. We have to be because we’re supposed to be everything at the same time and not complain.
So, a couple of things. So, I do say a lot of stuff. So, until this kind of revolution can happen, this kind of cultural shift can happen, where we have to just give women credibility—something we don’t have right now—there are a couple things you can do.
Something that I thought was really interesting was that we have to change how we view the doctor and healthcare. When I was growing up Bangladesh in the 1980s, you never questioned the doctor. I can’t believe I wrote a book telling American women how to question American doctors. Because not only did you never question the doctor, you never questioned the white man—the white guy—like ever. But now I know you can, and it’s really fun, and I tell you to all the time in my work. Because they’re not always right, and they get a lot of authority, and the power balance is immediately off.
One of the things that I say in my book is that we have to change how we view our relationship with the doctor and with healthcare really and view it as a team effort. And the most important member of that team is actually you. You are the expert in your body and your health. I think we forget that.
And when we’re told you must be stressed or you have anxiety—I mean, there was a story just last month. She was a white, blonde woman who found—it was an unbelievable Washington Post story—a tumor the size of a volleyball. And she’d been complaining about migraines, and they’d been telling her it was stress or she was imagining it or it was all in her head. And sure enough, yeah—I don’t even know how big that is, but I know childbirth. I can’t imagine having something that big in your head. But anyhow, just to go to show you. So, that’s one thing. You are the expert.
And give your doctor as much information as you can. That’s another thing. After writing this book, I now like manage the health of everybody in my family, and my parents are getting such good healthcare because I keep bringing the blood reports and any family history and fill out those forms. Doctors aren’t magicians.
I was actually speaking with a doctor who said, up until COVID, you really couldn’t say as a doctor I don’t know what’s wrong with you or I don’t know how this is going to end. Like then we’d just be like that doctor is terrible; he doesn’t know anything. So, this also isn’t an anti-healthcare, anti-medicine book.
The other thing that I say that’s really interesting is to take somebody with you. Over and over again, women said this to me, and the author Maya Dusenbery, who also wrote about women not being believed—she wrote the book Doing Harm. She said as well if you have somebody with you—a friend. And this is so terrible of me to say as a feminist, but she said this too and she’s a big feminist. But bringing a male friend or companion almost always helps getting you either believed and, oh, just bring a friend. Just somebody who will advocate for you. Because you probably won’t be believed.
And the other thing that I really liked that I say in the book is research your provider. And you can change your provider. Like I never knew this. This was news to me. That if you feel like you and your doctor—he’s not listening to you, whatever’s going on—you can change. Like I always felt like I was stuck with this doctor. So, that is something really great too to know.
And I have to quickly say that there’s an amazing app called the Irth App by Kimberly Seals Allers. It’s basically like a Yelp review for hospitals for and done by Black women. Just to be like this one has a high rate of lots of Black women dying postpartum or what have you. So, there’s a lot of solutions and interventions. So I’m very actually hopeful about the whole issue.
TAYLOR HARRIS: What’s that called again?
ANUSHAY HOSSAIN: The Irth—it’s like birth without the B. Because she’s taking out the bias. So, it’s Irth—I-r-t-h.
ANDREA MAYFIELD: I-r-t-h. Yes, thank you. We’re going to move to a period of audience questions now. I’m sure that you’ve been sitting on a burning question at this point. Elizabeth will come around with a microphone. Please raise your hand if you have a question. We ask that you keep your question brief so we can get to as many audience members as possible. And Elizabeth, if you would kindly repeat the question just to make sure that everyone hears it.
ELIZABETH IRVIN: I’m going to have them talk right in the mic. That’s what the mic is for. I think she had her hand up.
AUDIENCE MEMBER: For Ms. Moss, I had a question. You were introduced as narrative medicine, and I don’t know what that is. What is narrative medicine?
N. WEST MOSS: Yeah, you may have heard of medical humanities, which is—medical humanities and narrative medicine are related. Columbia University began a narrative medicine program about fifteen years ago, and I graduated from it a few years ago. It’s hard to describe, which is why I’m hesitating. They have a journal of narrative medicine called Intima that has some great definitions around it. But essentially it’s this: it is working with clinicians, particularly in hospital settings but beyond as well, to do close readings of patients, if you know what I mean. So, it’s to listen carefully to the story.
Think about it this way, if any of you have ever done a close reading of a poem. We don’t look at a poem and say it’s right there, it’s so obvious. We look at the white space on the page. We look at the things that are not said. We look at—we interrogate it, and we go into a relationship with the poem with humility and an open mind rather than the default with medicine has been clinicians being taught to walk in already knowing the answer before the question is asked, if you know what I mean by that. So, it’s almost like teaching clinicians to read a patient the way one might read a poem.
So, there are doctors and nurses and psychologists who go through these trainings and bring them back to their hospitals, and they do things like this before doing rounds. They’ll get the whole team together, and they’ll look at a piece of art as a group for fifteen minutes, and everyone has to give—everyone is invited, from the health aide in the room to the surgeon—is asked what is it that you see. There’s a little bit more of a process than that, but there are startling statistics that go along with this, which is why a lot of hospitals are adopting it.
One is that—I hope I’m getting this right—that litigation by patients drops by two-thirds. And it’s not because they’re spending more time with the patient. They’re spending time with the patient in a way where a patient is actually being heard. Also, diagnostic rates—and I don’t have the statistic for this—but skyrocket. The diagnostic accuracy.
And just one brief last thing. Imagine if you have a patient who has been abused—is in an abusive relationship—it’s unlikely they’re going to walk in and say, “I’ve been abused at home.” So, if a clinician can talk to them, looking for what they’re not saying or what their body is telling you in addition to what they’re verbalizing, you have more of a chance of helping them.
ELIZABETH IRVIN: Wow. I’m so glad that question was asked because it just gives me hope for our future. Thank you.
AUDIENCE MEMBER: This question is for Anushay. I am a primary care doctor, and so what resonated with me about what you just said was I’ve often asked about symptoms, and often I find myself finding that my women patients downplay their symptoms a lot, and I have to really delve into what they are saying to really figure out what’s going on. And I was just wondering if you have any advice to practitioners like me about how to make sure that I’m making that space safe for my female patients to let me know.
ANUSHAY HOSSAIN: That is a great question. I think often women do downplay their pain, but I also think it’s a catch-22. Because if you downplay it, maybe like you’re not going to be believed. And then if you overplay it, people are going to think you’re hysterical. I actually wanted to call my book Hysterical because I think every woman in this room has either been called that or it’s been suggested even if you mildly show any kind of emotion.
I think what’s really interesting that’s happening with doctors is that hospitals are businesses, and you just don’t spend that much time. I love that you’re asking how you can better listen to your patients and how you can get them to open up more. Because I feel like most doctors don’t really want to give that much time. And I feel like I don’t know what you can say to your patient. I feel like it’s just how, you know, you can even just say what the problem is. Just be like I’ve been seeing with my female patients—not to say that this is what you’re doing, but this is what I’ve found. Do you think that’s accurate?
Because we’re all learning too, you know? And now we’re like in a whole new world where I feel like we’re learning to socialize all over again, where doctors’ visits have become virtual. So how do you maintain that intimacy?
That being said, the book also does profile Jenny Joseph and the Commonsense Childbirth. She’s actually the first Black—the owner of the first Black-owned midwifery school. But her entire way of intervening to—you know, lower America is very racialized. Maternal mortality crisis and statistics, which is a whole other thing, is just listening. Like not turning away anybody who might not be able to—doesn’t have insurance and whatnot—but also really, really listening. I mean, women are not listened to or heard. Hospitals do want to kind of run out and have a bunch of C-sections, get that going. They make a lot more money.
Recently, I was just on the American Hospital Association’s podcast, and then a couple of more people from kind of the healthcare and the medical world have been reaching out. And I was actually telling my editor this is the conversation we need to be having because it’s not an attack. It’s like a dialogue. And everybody should ask questions if you don’t know the answer. So, yeah.
ELIZABETH IRVIN: Other questions?
AUDIENCE MEMBER: Do any of you know if there’s any move afoot to diversify the primary care and who’s allowed into med school because we have this artificial feeling that doesn’t allow unlimited number of people into med school, and we’re keeping the number of doctors down. And I just wondered if any of you know anything or have seen any move toward that.
ANUSHAY HOSSAIN: I will say that I think—I don’t know if this answers your question exactly, but I did come across in my research a serious not only gender bias in research—what we know about women’s health—but also the lack of diversity in medicine—gender and race. And how that affects what is tested on. Apparently—it’s very common-sense stuff, but sensors for soap in bathrooms were tested dominantly on white people, so they don’t recognize darker skin colors. I did have a moment where I was like is that why, or was it me? See again we don’t believe ourselves.
But lots and lots of things. And it has obviously a very serious impact on women’s health. And there’s even a mice patriarchy. Seventy percent of people who suffer from chronic pain are women, but it’s still largely male mice that chronic pain treatment is tested on. So there’s even a mice patriarchy. It’s unbelievable what we are up against. But yeah, increasing this knowledge is really important.
ANDREA MAYFIELD: Indeed, and I think about the astronomical cost of medical school being a significant barrier for folks.
AUDIENCE MEMBER: Hi there. Taylor, you did two things in your book that I found to be magnificent. Well, more than two, but these are the two I’d like your thoughts on. One was to explain the journey of having anxiety in a way that I think may provide more people with an opportunity to name it. And I thank you for that. One.
Two, what you do with unexpected genetic knowledge. So, I was wondering if you might share with people how you navigate both of those things: managing anxiety and then on top of that getting unexpected genetic knowledge. Because it was powerful to listen to. Thank you.
TAYLOR HARRIS: Sure. Thank you. I need to clear my mind. I’m like we need shirts. Down with the mouse patriarchy. But I think in this book I was thankful to find a publisher that let me bring all of me to the page because I didn’t want it just to be a story about racism or just a story about the unknown. I needed to be honest about the way that I process the world both as like a Black woman and a Black woman with a longstanding chronic anxiety disorder.
So, that shows itself in different ways. I can be sort of frank about the things that have helped me. My parents thankfully took me to therapy when I was about fifteen or sixteen. I got started on an anti—like an SSRI antidepressant pretty early. And that allowed me then to leave home and go to college at UVA. I’m 99 percent sure I wouldn’t have been able to go away to college without that. So, I did learn coping skills.
One thing I talked about some in the book and just if you know me in real life is that when I started treatment for anxiety it was very much geared towards—it was very like cognitive behavioral therapy, which I love and think is important, but we were starting very much with like how to keep—how to stop having ten panic attacks during the school day. Like I would go to high school, and I was like a straight-A student, captain of the tennis team, student council president, and nobody knew that I was having like—every day I was dropped off at school, I thought that would be my last day. That I would like somehow die in like chemistry class and never make it home.
So, we went from sort of working on those thoughts to like me feeling better and going off to college, unexpectedly finding my soul mate on the trolley, which I have since told people like don’t just ride the trolley looking for your soul mate. It doesn’t always work.
So, I had all these great experiences. I traveled to South Africa, which I didn’t think I’d ever be able to do. It’s like a twenty-hour flight.
And then you can sort of start to think like I beat this thing. Like if I just have my meds with me—do I even need my meds? And if I have my meds, for sure like I’m good. And I started realizing that, oh wait, anxiety shows up in different ways. Even when I’m well medicated, even with I have therapy, it’s this chronic thing. It’s not this thing where I just—like, great, if you can pray out your anxiety and get delivered from it—this is not like a bashing thing on church or faith. I’m definitely a believer in Jesus. But for me it was not about praying it out, or like I will be a good Christian or I will be better when I’m rid of my fear. At the same time, I think it’s complicated because, if one of you came up to me and were like rub this magic oil on your face and you will be free of anxiety, like I would totally buy it. I would give you all my coins because I don’t love my anxiety. Does it give me a way to see the world? For sure. And are there things that I can learn through it? Yeah. But I always feel sort of like Pinky and the Brain. Like what are we doing today? Like trying to take over the world. And without my anxiety, sorry, but I would be president. So, it’s sort of this back and forth. It’s not easy.
And then about finding the unexpected result. That was tough. So, for those of you who haven’t read the book, we do whole exome testing on my son, which is like one of the highest levels of genetic testing you can get clinically. And we don’t find the answer to his litany of symptoms. What we do find out is that this four-year-old boy at the time, who watches Daniel Tiger and wears Pull-Ups is a carrier of a BRCA2 mutation, which increases your risk for several cancers, including breast and ovarian, which is really weird to find out about a four-year-old boy. So, we know right away that it comes from me, and that I have to work up my family tree and find out if my sisters have it and if I got it from my mom or my dad. Because it can obviously run-in males too.
And that was just this moment of finding out that information and feeling like—in CBT, you learn that most of your fears are irrational. Like I probably was not going to go to school in eleventh grade and die in chemistry class. Like that probably was not going to happen. And then you get to the point where you find out this unexpected sort of bad news. And it’s like, well wait, what do I do? Like I think Kate Bowler says what do we do when the worst thing happens?
So, that was really hard. I immediately thought—with anxiety, you’re like not only am I at high risk for cancer, the cancer has probably already taken over my body. I found out too late. I already started to plan like where I’d be buried. And this was like all in a matter of five minutes. So, some of that was irrational, but some of it wasn’t. I didn’t know what my life held at that moment.
ELIZABETH IRVIN: Thank you so much for sharing that. And read the book. It’s so beautiful the way that it’s woven in throughout the story to shine a light but also shine hope actually. Did somebody raise your hand?
ANDREA MAYFIELD: Looking at the time, I think we have time for just one more brief question.
AUDIENCE MEMBER: Hey, Taylor. Thank you so much, everyone, for being here. I’m sorry this is the last question. I’ll try to make it brief. My question is—and this is for anyone who’d like to answer it. How do you trust a medical system that doesn’t trust you? Specifically, I’ll just speak from my own experiences as a Black woman. I’ve experienced some of the things that, Taylor, you’ve mentioned, and just as a woman. So, I find myself in the position of sometimes—this is just me. I’m not recommending this for anyone else. But I find myself sometimes denying or not accepting certain recommendations that my doctor has recommended. I find myself wanting to advocate for not being overly medicated or too much treatment. So, this question I guess is for anyone. How do you trust a system that doesn’t necessarily trust you? And specifically, like how do you trust the recommendations for the medical treatment?
ELIZABETH IRVIN: I actually think that is such a great question to end on and have each of you speak briefly to. In terms of our time, does that work, Andrea?
ANDREA MAYFIELD: That’s perfect. Thank you, Elizabeth.
ELIZABETH IRVIN: That was a great last question.
N. WEST MOSS: Well, I don’t know the answer, but I can tell you that I’m skeptical too, and I sometimes make the wrong decision. It helps me to have a lot of friends to talk to who I do trust. And going through the Columbia program, I ended up with a lot of friends who were clinicians. So, I broke my elbow last winter, and someone said take ibuprofen, and I was like, oh, well I shouldn’t. And I told my friend, and she was like would you just do it—it’s healing the soft tissue. Then she took the time to explain it to me—why I needed to do it. And that made a huge difference, and then I went ahead and did it, and then I was pissed that my doctor hadn’t explained it that way to me. So, I don’t think there’s—I mean, I kind of feel like we should be skeptical, and I kind of feel like we need to have people in our lives who we do trust. And I think we can also prompt our clinicians to do better where possible. You know, where you feel like you can do that.
TAYLOR HARRIS: Thanks, I’ll be brief. A similar response. I’ve been asked about the importance of Black doctors and do you have to have a Black doctor, which seems like a really big question for me to answer, especially where we live in State College, Pennsylvania, right now. There aren’t—there is like one Black doctor. So, you can’t necessarily trust that that’ll be the right fit for you. But what I do have and I’m thankful to have—and I know that this could be related to where I went to school and class, so there are some things there to unpack—but there are several doctors, the ones I mentioned at the start, who I call or text when I have questions. So even if I’m seeing—my breast surgeon is a white Jewish woman who I love and trust. So that’s not something where I’m like I have to have a Black surgeon.
But after surgery, I did have some complications from it—not the fault of my breast surgeon. I want to be clear about that. But I did have some complications. And who helped me work them out? Dr. Tyson Bell, a Black doctor in the area. And he took the time when he wasn’t at work to walk through my symptoms and tell me, oh yeah, here’s what happened to you. And nobody had told me here’s what happened to you.
ANUSHAY HOSSAIN: Thank you so much for that question. I think you should be skeptical. I think you should be skeptical, and I don’t think you should just blindly accept whatever the doctor has told you. And not to say that doctors are evil or anything like that just in general but specifically in this setting. You know, I say this in my work and I say this in my book. I’m not telling Black women anything they don’t know. But while I was doing research for this book and just working in maternal health in America, you know that certain things—there’s a racial aspect to it or race is definitely a factor. But the way it jumps out at you in healthcare—I’ll quickly just say that America is the highest maternal mortality rate amongst rich nations. It’s a number that’s going up. It actually went up even last year. But women of color are more likely to die—twice as more likely to die than their white counterparts. But Black women are 243 percent—we often hear they’re three to four times more likely—but that is 243 percent more likely to die than their white counterparts. So even if you just want to be a completely oblivious person, you have to ask what is going on here.
And pre-pandemic, we had really racial explanations for this—or attempts to explain it. It’d be like, well, it’s because Black people are less educated. Then it would be like, well, they’re welfare queens. And then of course the pandemic exposed to the world just how racialized our medical system is, our healthcare system is. And now there’s actually a study that says that a Black woman with a college degree is five times more likely to die giving birth in America than a white woman with a high school degree. So now we know—it’s undeniable now with the pandemic that it’s racism, not race, that are driving these disparities. And I think it’s undeniable. I think you could’ve denied it pre-pandemic but not anymore.
ANDREA MAYFIELD: We could truly keep talking for hours. I have just been so moved by each of you. Thank you so very much. Thank you to the authors. Thank you to the Virginia Festival of the Book. Thank you to the audience for these thought-provoking questions. I’m so incredibly grateful. But that is our time. Please, please, if you have time to hang back, to purchase a book, to connect with the authors one on one. There’s a local bookseller here, New Dominion. Please consider purchasing a book. Thank you for coming.
Thanks to our bookseller for this event, New Dominion Bookshop.
“Gripping . . . With tender, evocative prose, [Taylor Harris] executes a daunting undertaking: to floodlight the intersection of two ‘burdens—Black and undiagnosed—in a world that is comfortable with neither.’ The result is alternately heartwarming and enraging.” —Maddie Bender, Scientific American
“In The Pain Gap, Anushay Hossain paints a startling picture of a nation that imperils women’s lives and then tells them they’re crazy for believing something might be wrong. Every woman, and every person who cares about women, should read this crucial book.” –Jill Filipovic author of The H-Spot: The Feminist Pursuit of Happiness and OK Boomer, Let’s Talk: How My Generation Got Left Behind
“Moss’s meditations on questions her experience have raised are full of calm maturity and quiet humor and give this book an appeal beyond its expected audience… Moss’s contemplations on life in general will resonate with women who are seeking peace and meaning in their own lives.” —Library Journal
Virginia Festival of the Book staff, volunteers, partners, and attendees appreciate all of our sponsors. It is their crucial support, along with individual donors, that allows us to present the 2022 Virginia Festival of the Book almost completely free of charge. We appreciate the generous commitment from our Premier Sponsor, The Joseph and Robert Cornell Memorial Foundation, and these major sponsors: Michelle and David Baldacci, Dominion Energy, W.K. Kellogg Foundation, and the National Endowment for the Humanities.
We appreciate the support of our community partner for helping share information about this event: The Women’s Initiative