Emily Dwass is a writer living in Los Angeles. Having written for numerous publications about food, health, and cultural issues (including the New York Times, Los Angeles Times, LA Weekly, Chicago Tribune, and USA Today), she also served as the “Kid Health” columnist for the Los Angeles Times for four years. She has also written several feature scripts and been a writer on TV shows produced by Disney and Lifetime, among others. A writer by training and trade, she holds a degree in creative writing from the University of Illinois, and a master’s degree from the Medill School of Journalism at Northwestern University. Several years ago, she struggled to receive effective medical treatment and was forced to have a craniotomy to remove a non-malignant brain tumor. This experience led her down the rabbit hole of adverse women’s health experiences – and she began research into the depth of medical bias, discovering how both medical research AND the health system are, in many ways, rigged against women’s better health. This served as the jumping-off-point for her groundbreaking book, Diagnosis Female: How Medical Bias Endangers Women’s Health. In this episode, she sat down with Lauren to discuss her personal journey and what she discovered. Both shocking and revelatory, her exposé reminds us that health is a human right, and gives us hope that with accurate information, we can begin to better serve everyone.
Join us as Emily shares…
- the focus of her book: cardiology, neurology, autoimmunity, and gynecology
- that she had strange neurological symptoms for 4 years, at which point she was incorrectly diagnosed with Guillain-Barré syndrome – but never offered tests (MRI) to confirm the diagnosis
- that she was eventually given the correct diagnosis of a meningioma – a non-malignant brain tumor that had been growing for years – and offered a craniotomy to remove it
- that if she’d been diagnosed years earlier, she would have had more treatment options – including one-day radiation – as opposed to the craniotomy she was forced to have
- that she had a recurrence of the meningioma, and this time was treated with one-day radiation
- that her meningioma recurrence wasn’t noticed early on, because it was revealed that her physician likely hadn’t personally reviewed her imaging
- about the concept of empathy, and the patient-doctor dynamic
- her family’s choice regarding health insurance after she was diagnosed with her meningioma
- that she didn’t share with her employers about her diagnosis – because in Hollywood you can’t be “female, old, and sick”
- the concept of hysteria, and how an antiquated idea has trickled into modern women’s healthcare
- that for most of medical history, research has been done not only on male humans – but also on male tissue, cells, and animals – which reveals massive gaps in our knowledge and understanding
- that all of medical research excluded women until 1993
- that it wasn’t until 2016 that the NIH included sex as a biological variable in research – and mandated equity of male and female cells (which still isn’t always followed-through on)
- that disparities in research filter into clinical care – in that males are considered typical, while women are considered atypical – leaving women with a systemic lack of recognition in the medical industry
- concerns with medical devices, particularly in gynecology – which are often approved without proper research. The most poignant example is the use of power morcellators, which have been known to spread cancers during/after fibroid removal (and examples in which women haven’t had voices in their own care)
- that doctors can have relationships with companies that design medical devices or produce pharmaceuticals, which can influence your care
- that the #MeToo movement may help women become stronger self-advocates in their medical care
- that women of color are disproportionately misdiagnosed, under-diagnosed, and generally disregarded by the medical industry
- the concept of medical trauma, and that women of color experience greater micro-traumas over time, which add up
- her advice: have an “elevator pitch” for your doctor visit, bring an advocate, and don’t be afraid to get a second opinion
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Lauren: All right guys, thank you so much for joining us. I’m here today with Emily Dwass. Emily is an author and a freelance journalist. She's written an amazing book that came out in October, called DIAGNOSIS FEMALE: How Medical Bias Endangers Women’s Health, and it's inspired in part by your own experience. So, Emily, thank you for being here.
Emily: Well, thanks for having me. And I appreciate your kind words about the book.
Lauren: Oh, gosh, yeah. I've already been talking about it on social media. Some of you guys who are listening in may have actually seen me post about this book, because it's really fantastic. We were actually just talking about this, Emily and I, about the book; that it's very digestible. It's dense, but it's not 1500 pages! It’s just the right length to really get a sense of what is actually going on in the medical industry, and how it's affecting women in particular, with invisible illness. The focus of the book is on cardiac events, neurological issues and gynecology.
Emily: And autoimmune issues, too.
Lauren: Yeah, but it sort of goes into other things, and you touch on, especially, the discrepancy in health differences between women of color and white women, and things like that. So it's really exciting to have a book like this that really covers the things that I think a lot of us have been feeling and thinking — but no one's been doing all the research and putting it in one place. And you've just done it.
Emily: Thank you.
Lauren: Thank you! So why don't we start with your journey. Can you tell us a little bit about what happened to you, and the time span over which it happened, and how things went down.
Emily: Sure. So there were, I would say, four years when I started having strange neurological symptoms — like numbness in my arms and legs. And I started with my primary care doctor, who was very nice, and he diagnosed me with Guillain- Barre Syndrome, which is where your autoimmune system attacks your nervous system. That kind of made sense. He referred me to a neurologist right here in the Valley, in West Hills; he agreed with that diagnosis, sort of.
He said I had a Guillain-Barré-like virus, and that I should get better in a few weeks.
Lauren: And they said virus, right, not a condition.
Emily: A virus, right. And again, he was the doctor and I believed what he said. I should say, I grew up where I would never question an authority figure — whether it was a parent or a teacher. Or if I did question, I would get into trouble! (laughs)
Lauren: I don’t think you’re alone in that. I grew up believing ‘doctor is God’. It’s a synonym, no? (laughs)
Emily: I certainly would not question a doctor, but I didn't get better. And so I went to another neurologist at UCLA, who also said what I had was Guillain-Barre Syndrome. And I remember tentatively, fearfully, saying to him, “Should I maybe have some kind of test or something?” Because there are tests you can do to definitively diagnose Guillain-Barre Syndrome. None of those were ever done on me.
Lauren: It was conjectured.
And as one of the doctors in the book later said to me, “A diagnosis is just a guess. And if you don't like the guess that somebody's making about you, you might want to get another opinion.”
Well, now I had three opinions. And they were all, renowned doctors, nice people. And they all said that I had Guillain-Barre Syndrome.
Lauren: It seems like open-and-shut.
Emily: Yeah. And it didn't occur to me to … you don't know what you don't know, and I didn't know that I should say, “Well, give me an MRI exam just to make sure.” And I don't know why it took four years to stick me in an MRI machine.
Lauren: Four years.
Emily: Four years. So I think not feeling well became my new normal. I just kind of muddled through, and, life was busy. I had kids, and work.
Lauren: Do you think you also went through that thing of being female and being told … well, you're going to live in chronic pain, or you're going to live in chronic discomfort — because we already knew we had a uterus.
Emily: Right. And I think I was very aware of not wanting to be a difficult patient or not wanting them to think I was crazy. So I just kind of carried on, until I had what I call a ‘flip flop malfunction’. I was helping my daughter get ready for the senior prom, and we were running around with the hair and makeup and all that stuff. And I had my flip flops by the front door, and I thought I put them on, and ran to the car. And then I looked down and my flip flop was not on my right foot. I thought, the flip flop must have broken, and I went back and got it. The flip flop was perfectly fine. But my right foot was not able to navigate into the flip flop — which was a new symptom. That hadn’t happened before.
Lauren: It sounds like it became directionally challenged.
Emily: Right, exactly. And so my husband said, the neurologist at UCLA always said if something new happens or you get worse, come back.
Lauren: That was good advice.
Emily: It was good advice. So we went back to him. And this time, he did do a test. He had me sit on the exam table, close my eyes, and he manipulated the toes on my right foot. I was supposed to tell him, are they up or down?
I had no clue. With my eyes closed, I couldn't tell.
Lauren: But you hadn’t lost sensation, though. It wasn't like a total sensation loss?
Emily: No. But there was some disconnect between my brain to my toes. And so that finally got me a ride in an MRI machine — which happened immediately. They sent me in. But halfway through the MRI exam, the technician came into the room and said, “So, um, do you get a lot of headaches?” And I said, “No. Why? What do you see?” As she backed up toward the door she said, “Oh, we’ll let the professionals answer that.” At which point, I thought, ‘Okay, I'm in trouble. Something’s going on!’ And so by the end of the day, I learned that I had this thing in my head that was the size of a baseball.
Lauren: And it turned out to be a non-malignant tumor.
Emily: Right. The first neurologist, when we were looking at the scan together, he said, "This is probably a meningioma, a non-malignant tumor.” They're not always non-malignant, and the reason I don't use the word ‘benign’ — and a lot of advocates don't — is because it can be dangerous, even if it's not cancer. And actually, when I thought about brain tumors, I always thought brain tumor meant cancer.
I didn't even know there was such a thing as a non-malignant brain tumor.
Lauren: I don't think a lot of people would know that. Wow. So that happened? It took you four years to get the diagnosis. So at that point, what happened … were you sent immediately into surgery?
Emily: So I was given the names of two neurosurgeons — one at UCLA, and another one at Cedars-Sinai. So we started out with the guy at UCLA. Which was without a doubt one of the weirdest medical appointments I've ever had in my life — and probably somewhere along the way jumpstarted this book. I wasn't aware of it at the time. I never wanted to write a book. I was perfectly happy writing freelance articles.
Lauren: What happened in this strange appointment??
Emily: So this guy was very highly regarded. I'm not going to give his name because … I hope he's not still working.
Lauren: That’s always the hope, isn’t it, when things go awry.
Emily: Yes. But we came in and he was sitting at his desk, looking up at the ceiling. He didn’t turn to greet me. My husband was with me, but he didn’t say any of the usual niceties you would say.
He looked like he was completely bored. And finally he said, “Well, what do you want me to tell you?”
I was shocked. I was already dazed by all the events that had happened. And so I didn't respond. But my husband said to him, “Well, we'd like you to look at Emily's scans and tell us what you think.” My scans were there on a light box. So now he looked at the scans. And he turns to me and he says, “We're going to cut your head open like a pumpkin.” And while he's doing it, he's miming the activity of cutting my head open. “And we’re going to take out, … “ The whole thing was so crazy and so bizarre!
Lauren: So shocking.
Emily: So shocking.
Lauren: It’s enough that you've already gotten the news that you have a baseball-sized tumor, right? But then to have someone say, “And then we're going to do this craniotomy. And that's like carving a pumpkin.” Okay, maybe it is to you.
Emily: He was just being mean, and it occurred to me, I wonder if he just talked to me that way because I was a woman.
Would he have talked that way to a man?
Lauren: But I wonder whether it would have been different if your husband hadn’t been there?
Emily: Well, interestingly, my husband started peppering him with lots of questions.
Lauren: And this is where it's interesting, because in so many cases, it's so useful to bring an advocate with you to appointments and this was a male advocate, too.
Emily: Right, and a male advocate who was good at asking questions. The doctor said to him, “You ask a lot of questions.” And my husband said, “It's an occupational hazard.” And he explained that he was a reporter for the LA Times. And when the doctor heard that, he immediately changed his demeanor. He started bragging that he'd had dinner with some suit from the LA Times recently.
Lauren: Who cares?? We're here to talk about my brain tumor, right, not your social life!
Lauren: Oh, you want a good review? I don’t know. Let’s talk about it later!
There was no way I was gonna have this guy be my surgeon.
So from there, we went to Cedars-Sinai, where I was very fortunate to have Dr. Keith Black be the neurosurgeon.
Lauren: And you talk about Dr. Black and you do interview him in the book.
Emily: I quoted from things he had told me, including … I'd asked him about the Guillain-Barre diagnosis I'd gotten, and he said, “When you have a tumor, even a benign one, that's in your head for a long time, it messes up your whole autoimmune system. Or it can.”
Lauren: That makes sense.
Emily: Yeah. And so it wasn't that they were completely wrong in saying I had it.
Lauren: But they didn’t dig deep enough.
Emily: Yeah, why are the symptoms not going away?
Lauren: Okay. So how long did it take at that point? You waited four years for the diagnosis. Was it then several months before you saw Dr. Black and had the operation?
Emily: Once I had the diagnosis, I saw him within two weeks and I liked him right away. He had a stellar reputation. He was very compassionate, very nice. And in talking with him, one of the first things he said was, the only treatment now at this point was surgery. And that was the first time I realized, oh, so if this had been diagnosed four years ago, I probably could have had a one-day radiation treatment.
I wouldn't have needed to have a five-hour, dangerous craniotomy.
Lauren: Do you think you would have opted for something like a one-day radiation?
Emily: Oh, sure. Yeah, no, no, I definitely would have. Brain surgery is no fun.
Lauren: So in that sense, we're bordering on malpractice here that you had to wait that long for that diagnosis.
Emily: No, absolutely.
Lauren: Nobody’s perfect. But what would it have cost these early diagnosing doctors to have just ordered the MRI to confirm their suspicions?
Emily: Right. It made no sense.
Lauren: Do you wonder if it's also sometimes to do with the restrictions placed upon physicians by the insurance industry?
Emily: I'm sure that's part of it.
Lauren: That that may have been why they didn't call for the MRI immediately.
Emily: That may have been. And it also may have just been that they thought they knew what it was.
I think that was part of it, too: that they were confident in their diagnosis.
Lauren: It's very interesting because I had a physician on the show recently who talked about the presence of ego in medical settings … that patients go in with ego sometimes, and so do doctors. And if we could all just leave the ego at the door and say, “Well, sometimes I don't have the answer to everything." “Sometimes I come in because I have questions, and I don't know everything.” You know, it would be a lot easier for everyone involved.
Emily: No, absolutely. One of the doctors in the book, this lovely young woman who herself had had a catastrophic medical crisis, talks a lot about the sort of patient/doctor dynamic, and sometimes it's sort of adversarial. When she was going through her crisis, she heard one of the doctors yell out, “She's trying to die on us.” And she knew it was because of the emergency.
Lauren: I just cringed! Things not to say in front of your patient!
Emily: Right! But also the patient/doctor dynamic was kind of off balance.
Lauren: Yeah, and it’s almost as if there's a glass plate between you, as if you're not partners in your care. Which is exactly what you should be. Or at least what we should all be striving for, I guess.
Lauren: So you mentioned that you brought your husband with you to some of these appointments. Was that something that you considered beforehand and said to yourself, gee, I'm going to bring him just in case. The idea of bringing an advocate into these appointments? Was it something that occurred to you that you might need before all this happened?
Emily: Now I know that, yes, you should always have an advocate with you if you're going through, especially a difficult diagnosis.
I think I was just so overwhelmed. I couldn't even drive myself there.
And once I got the diagnosis, I wasn't allowed to drive. But I just wanted the moral support, too.
Lauren: Absolutely. Do you think that it also helped your relationship? That in a way it may have strengthened your relationship?
Emily: No, I think … we've been married 40 years. When I had the surgery at Cedars-Sinai, they put a cot in the room and he got to stay in the room. The funny thing was, he had an allergic reaction to the detergent they use. So the nurses would come in and look at his rash. And I was, like, “Hey, I'm the one who had the surgery here!” (laughs)
Lauren: (laughs) I’m also thinking, what detergent are they using if your average person …
Emily: Well, he's got sensitive skin. It was funny.
Lauren: So that's really great because he was very much there for you.
Emily: Oh, absolutely.
Lauren: So what about a typical day? Now, I know when I ask this question there's no such thing as a typical day for so many of us. But when you were managing your symptoms, versus now … this is post-op many years now. What was it like? What were the awarenesses that you had to sort of stack up that maybe weren't adding up in your synapses? With regard to the brain tumor, what were the things that you had to be extra aware of?
Emily: That's a good question.
I just didn't feel like myself. And I knew something was wrong.
It was vague neurological symptoms, like weird numbness in my hands.
Lauren: And you didn’t know when or where.
Emily: Right, some loss of strength, and actually, because the tumor was there for so long, my right foot’s permanently messed up. It's partially numb. And so I had physical therapy, and I think I wrote in the book about learning to drive with my left foot, with adaptive equipment. It’s not that I can't walk. I walk miles every day, but I don't have perfect sensory perception in my foot.
Lauren: Right. Well, first of all, it's wonderful that there's adaptive equipment available.
Lauren: But second, I wonder if the unpredictability of your symptoms at any point also bred fear. That suddenly you were fearful in your own body?
Emily: Absolutely. I didn't want it to be something serious. So part of the reason I was so happy when they said, “Oh, it's nothing, you'll get better,” I was, like, “Oh, good. I don't want it to be anything. Works for me!” (laughs)
Lauren: We’re willing to accept that, yes! (laughs)
Lauren: Yeah. So since you've had the surgery, do you have total trust in your body again? Or do you think that you still sort of second guess yourself sometimes?
I have trust in my body. Do I have total trust in the medical system?
No, because what happened after I had the surgery, which thank goodness went well, then you have to have MRIs regularly. So first, it was every six months, and then every year, and then I graduated to every two years. Then we switched health plans and I went to Kaiser. I was given a neurologist and my goal of my first appointment was to say to them, ”Can I have an MRI every three years now?” I hate the MRIs because of the dye they give you, because it possibly can cause kidney problems.
Lauren: And you were getting them frequently enough.
Emily: Right. My grandmother and an aunt both died of kidney disease. So I'm kind of protective of my kidneys.
Lauren: And that's a note about people being aware of their medical history in their family, and how that can affect the choices that you make in your own care.
Emily: And when I first started getting MRIs, there was no blood test given before the MRI. Now they do a blood test specifically to test your kidney function. So I was getting regular MRIs and this was through the neurologist at UCLA, and he would always send me an email saying, “No evidence of tumor recurrence.” Which obviously I was thrilled about. Then I switched to Kaiser, and the new neurologist said, “Go for an MRI now. If it's good, then we can talk about spacing out the MRIs.”
And it turned out the tumor had come back.
But not only had it come back … there’s a group at Kaiser they call the Tumor Board, and they looked at all of my MRIs I'd had at Cedars-Sinai, and it turned out the tumor had come back five years before. And meanwhile, I was getting emails saying, “No evidence of tumor recurrence.” So someone was reading the MRIs and missed it. They showed me; they said, “Look, you can see it's right here.”
Lauren: That's also a thing, that the medical system is this big machine. And who's handing what off to whom. And there's obviously some kind of disconnect, or there's someone who just didn't properly read the radiology reports.
Emily: Yeah. And the neurologist should have looked at it himself. When I interviewed Dr. Linda Liau, who’s head of neurosurgery at UCLA, and I said, “Is that common practice?”, she said she always looks at the MRI herself.
Because it's like having somebody describe a picture to you, versus actually looking at the picture yourself.
Lauren: And it's interesting you bring that up … because certainly with people who've been on the show, there have been incidences in which doctors may have or may not have read the radiology reports or looked at the scans themselves, and have missed things when they haven't read them themselves. Because sometimes the people who are interpreting this information, they're not the end-all be-all. And sometimes it's also good to have a second eye on it. You'd think that at this point, with enough of those cases stacking up, that somehow hospitals would respond by saying, well, we'll make sure that at least two eyes or three sets of eyes get on these.
Emily: That’s a great idea.
Lauren: It would be such a simple fix, wouldn't it? Well, from my perspective! Who knows, with the red tape in the hospital system. But you’d think just having a few extra sets of eyes could potentially solve this massive problem,
Emily: And also making sure, it's okay for patients to ask, “If it's a brain scan, is a neuro-radiologist going to be looking at my scan?” As opposed to a general radiologist who spends all day looking at elbows and knees and other things.
Lauren: Very true. That was also the thing that happened with you, that it was probably someone who's looking at a knee …
Emily: I don't know. The name’s there in the chart. I never reported it. I guess I'm reporting that now! If somebody wants to go back and look up who did that, that might be useful.
Lauren: Yeah. Well, and it's useful, at least, that they give you the names. It gives you someone to answer for that kind of thing. So, as that was discovered, what was the next thing that happened? You had to have a second surgery.
Emily: So I fortunately did not have to have surgery because it was so tiny when they found it at Kaiser that I got to have a one-day radiation treatment, which fortunately went well. One of the funny things … of course, I was completely freaking out that this came back, and then I was reading stuff about radiation treatments that go wrong, all the horrible things that can go wrong. Needless to say, I didn't sleep the night before. And when they do it at Kaiser Sunset, they give you an anti-seizure medication to take before —because anytime your brain gets messed with, you could potentially have a seizure.
Lauren: And then you think, ‘Oh God, am I gonna have a seizure?’
Emily: So when I was walking into the treatment room, a nice young doctor said to me, “How are you doing?” And I said, “Well, I'm tired. I don't know if it’s because I didn't sleep last night, or because of the anti-seizure medication.” And he looked at me so puzzled, and he said, “Oh, did you have butterflies?” And he was a nice man, a smart man. But I thought, somewhere in his medical school education they didn't tell him that this is traumatic for patients! I said, “Butterflies? No, I'm freaking out here!”
Lauren: Because I've been saying ever since I started doing this podcast that I wish there were an extra year of medical school … everyone can thank me for this later! … but I wish there were an extra full year of medical school where doctors learned bedside manner. It would just make such a huge difference when you think about it, right? I've got tons of great ideas. I don't know how much they would cost the taxpayer, or someone going to medical school. But it’s very interesting that this is a thing that happens all the time, that you hear a doctor saying, “She’s trying to die on us.” Or, someone asks a weird question, perhaps for their own clarification, but still, you’re telling someone that they might have a seizure, but you're doing this to help a tumor. Okay, but it doesn't change the fact that, psychologically, there's trauma involved in this whole process.
Emily: One of the doctors I interviewed in the book is a wonderful doctor at Stanford. He teaches undergraduates and first year med students about the patient/doctor dynamic and how to have empathy.
You wouldn't think you have to be taught how to have empathy.
Lauren: But you do! If the medical system hasn’t taught us that, there are plenty of other instances, I think, in our world, that would teach us that sometimes you don't just get that at home. So now you are completely free and you're just having follow-ups to see if the tumor grows back. Is that where we're at now?
Emily: Right. The radiation doesn't remove the tumor; it just kind of takes away its mojo. And because radiation can cause new tumors to grow, then you still have to be monitored for that.
Lauren: So that’s not stressful!
Emily: No, not at all! (laughs)
Lauren: So you’re going back every few months now.
Emily: No, I've actually graduated to every two years, which is very nice.
Lauren: That’s really great! It's close to what you were pushing for! So, in terms of getting ill … You are a freelancer. So when you got sick, were there immediate concerns about: How will I pay my bills if I can't work, if I'm having these surgeries and treatments? And how will I pay my medical bills? And how are you balancing these demands of work and life when you are hit with something chronic like this?
Emily: Well, this was before the Affordable Care Act.
So now I had this monster of a pre-existing condition.
I was always a freelancer, and my husband was a reporter and editor at the LA Times, and we got our health insurance through his job. And because the paper was kind of in shaky ground in those days, they were offering buyouts, and he took the last buyout, where they were promising that you could keep your health insurance. You still had to pay for it, but we didn't have to go apply for it — because I would be rejected. And so more than affecting my career, it really affected his — because he left a job he loved because he wanted to make sure that I had health insurance. So that was pretty huge.
Lauren: It’s a huge choice to make. If he hadn't taken that, you would have had to potentially face this situation with self-funded health insurance. You would have been paying absolutely through the roof with a pre-existing condition like that.
Lauren: And that people are forced to make decisions like that, it seems to me very inhuman. But that's the nature of the system we have … that we'll get into. So in terms of justifying the fact that you have this illness that no one else could see … Did you go through experiences? Aside from obviously being misdiagnosed, were there experiences that you had to explain to people, “No, this is what's going on.” Or, "No, I have a brain tumor.” And had to make them believe you?
Emily: I don't think with friends or people I was working with there was disbelief.
But I definitely was sort of careful on who I talked to about it. I didn't want it to be sort of how I was defined.
And in addition to journalism, I've also done some work for the entertainment industry. And when I was diagnosed, I was working on a script with a small production company. And I did not want to tell them; I didn't tell them what was going on. Because, I mean, first of all, you can't be female, old and sick in Hollywood — even if you're a writer and nobody's going to see you on screen.
Lauren: Well, you’re not old! But by Hollywood standards, that’s a BS thing too, isn't it.
Emily: Right, so I never did tell them. I just sort of disappeared.
Lauren: Right. So that was something that you were very conscious of.
Emily: Very conscious of. You don't want to be known as the person who was sick.
Lauren: And do you think if you were male, that story might have been different?
Emily: Good question. I don't know that men can be sick either.
But men definitely have an easier time in Hollywood.
There’s been so many studies showing that.
Lauren: Yes. Men have an easier time with that, but also in the medical system. So we know that your experience has in part inspired the book, Diagnosis Female. So why don't we dig into it? Tell us about how the book was born. And for listeners who haven't read the book yet, what it's about?
Emily: Sure. I think the seed for the book was planted when I was recovering from brain surgery, still in the hospital. This was in August, and the surgery went well. But the night after the surgery, I was hungry and they brought me some Jello, and as soon as I finished eating it, I got really weird muscle spasms — violent muscle spasms from my toes to my nose, uncontrollable. And because this was August, the only doctors on the floor were the newly hired residents, so four or five of these young men stood there by the bed, watching me have this attack — whatever it was.
Lauren: Just watched it?
Emily: Just watched it.
And then the leader of the pack says, very seriously, “Well, we don't know what's wrong with you. But we think the problem is all in your head.”
And if I hadn’t been shaking so violently, I would have laughed, because I thought … that’s a really good neurosurgery joke! Except that he wasn't trying to be funny. He actually thought that I was hysterical. Even though I had just spent five hours having the inside of my head rearranged, he thought that it was a psychological problem. And that got me thinking. First of all, again, I thought, okay, he's only saying that to me because I'm a woman. No way would he say that to a man. But he's a smart guy; you don't get to be a neurosurgical resident unless you're smart. So, what was it in his medical school education that he thought it was … one, okay to think that … and two, that it was okay to say it to me. And I really think that's maybe how the seed for the book was planted there.
Lauren: Between that and, "So we open your head like a pumpkin …”
Emily: Right! Exactly.
Lauren: So you cover in this book numerous facets of the medical industry in relation to women. And you discuss specific cases — women who you've interviewed, some of whom are women of color, and some of whom are white women — and discussing the disparities there, and their treatment, and how long it takes them to get treated. I don't expect you to sort of name all of statistics off the top of your head. But in general, what kind of … I’m going to call it an epidemic … what kind of epidemic are we looking at here?
Emily: So we can talk about cardiology, for example. And the reason I decided to focus on cardiology, neurology, autoimmune diseases and some stuff in gynecology, is because I think it goes on systemically in all of medicine … but those are areas where women face particular challenges.
So, with cardiology, to this day, a woman can go into an emergency room having a heart attack, and be told she's having a panic attack and be sent home.
Part of the reason is that women's heart attack symptoms do not always look like men's heart attack symptoms. We think of the classic Hollywood heart attack … the guy gets blue in the face, clutches his chest, and keels over. For a woman, it may not be that way. A woman can just be extremely tired; that can be a symptom of a heart attack.
Emily: Yeah. And one of the doctors I interviewed said that being tired is the symptom that's often dismissed when women say that. She advised, never say, “I'm tired” to a doctor. Say, “I'm functionally exhausted.” You might get a little more traction with that. That was interesting.
Lauren: Yeah, just choosing language differently in terms of the way that doctors receive information or data, as it were. And it's really interesting because this connection to the idea of hysteria is not new.
Emily: No, not at all.
Lauren: This is something that traces back centuries,.
Emily: Four thousand years, when “hysteria” was the term they used to describe symptoms in women when they didn't know what else to call them.
Lauren: Yeah. And one of the things that you discuss, particularly in the first half or third of the book, in talking to various researchers and doctors that you interview for the book, is the disparity in research as well. That in so many medical studies, the subjects chosen are largely white men. Very infrequently are they female. The NIH has brought in some rules about that when it comes to government-funded research. But you can tell us a little bit about that.
Emily: And that was one of the things … when I started writing the book, I had no idea. That was a real eye-opener. That for most of medical history, the research has been done on males. Not just male people, but male cells, male tissue, male animals.
For example, two-thirds of people with Alzheimer's disease in this country are women. Yet almost all of the research has been done on male mice.
So then you wonder, is that why they don't know why women are more prone to getting Alzheimer's disease?
Lauren: It's really interesting, because if we had that data, doctors might sooner be able to diagnose women. Or might be more aware of these conditions that largely affect women as well. So it's not just cardiology … what else are we looking at here?
Emily: All of medical research has excluded women, basically, until 1993. That was when women started to be included.
Lauren: And that was because the NIH mandated it.
Emily: Right. And in 2016, the NIH said that for federally-funded research, sex as a biological variable has to be included in the research. Meaning, the cells you use, the tissues you use, the animals you use … you have to have equal numbers of male and female.
Lauren: Only in 2016. So, only three years ago.
Emily: And one of the researchers I interviewed said, “Well, it's great that we have this, but it's not always followed.” And in her research, she looked at how many studies just used males — and it still goes on.
Lauren: So we’re actually spending time researching the research — to prove that we need equality in the research. And here we are lost in the mire.
Emily: Right, and part of the problem is that the disparities in research do filter their way into clinical care. Because there's this feeling that male symptoms are typical, and females are atypical. When in fact, for the very same disease, men and women can just present differently. But there's a lack of recognition to this day that women’s symptoms are different. And again, the example of heart attacks … there's still a lack of recognition that a woman couldn't have a heart attack without having terrible chest pain or arm pain.
Lauren: You mentioned that this is systemic in the medical industry. But it's systemic, culturally and socially, isn't it, that women are always the second class citizens. Women are the second thought, they're not the first thought. So the fact that here we are — and these are very serious situations … not to undermine any other situation in which equity comes up — that when it comes to someone's health, and emergency situations — which the cardiology discussion is really focused on — that women will wait days and go through several heart attacks, where a man will be treated right away. And that's not just true of heart attacks. It's true of a number of other conditions. When it comes to gynecology in particular, we're looking specifically at female organs … where there's just not enough research, right? Because research is always more on the male body, right? Reading the book, it was very clear to me … I knew that there was this disparity … I think we know that. If you're reading the news, you're aware that there's something going on. But the depth of it is shocking. It's beyond beyond to me. And it didn't just take you having to go through it. The stories just unfold one after the other.
Emily: No, definitely.
And then, in gynecology, one of the problems are medical devices which are often approved without extensive testing. Probably one of the more shocking things I learned was about power morcellators, which I had not really been aware of until I started seeing it in the research and hearing what women went through.
Lauren: I was underlining things just for myself, for future reference. Because I thought if I ever end up with fibroids, you just do not want something power morcellated.
Emily: No. And probably most medical facilities now do not allow them. But you can still be morcellated with a scalpel and there's no way to know ahead of time if a fibroid is malignant or benign.
Lauren: And there's one particular case that you talk about — a woman who you interviewed who actually had malignant fibroids, had tried not to have the power morcellator used, really advocated for herself because she knew … yet was forced to have the power morcellator surgery, had that, and then of course, has had the recurrence of cancer.
Emily: And her story really moved me, because she specifically said, “I do not want to have this surgery. I want to have an open abdominal procedure, where you take out the tumors.” She suspected she might have a malignancy, but she didn't know that for sure. But because she was in the medical profession herself — she worked as a physician's assistant — she was worried.
And she did not get a voice in her own treatment plan.
She was told no, you don't qualify for that kind of surgery, you have to have minimally invasive. And that was it. She had no choice. She had to have surgery done in a way she didn't want to have, with the tool that she feared. And she's been suffering the consequences ever since.
Lauren: And it's fascinating because a lot of these measures are put in place to save in costs in medical care. And yet, what happens so frequently and where we finally realize the errors, is when enough people get sick enough — whether it's from a poorly-designed medical device, or an under-researched treatment or something like that — that enough people end up having negative side-effects or consequences of these treatments … that finally the health industry realizes, oh, gee, it's costing us more money than if we maybe did the more invasive thing or did the more expensive surgery to begin with. But it takes thousands of people having to experience what this poor woman is experiencing and she's been dealing with for years, for people to wake up. Meanwhile, there are people who are living with these life-threatening illnesses.
Emily: There was a wonderful documentary, I think it came out in 2018, The Bleeding Edge, that looked at medical devices.
Lauren: And you also interviewed the director of that, right?
That was a horrifying look at what's been done to men and women from some of these devices that were not properly tested.
Lauren: Yeah. Well, it's interesting because the director, Amy Ziering, even said … toward the end of that portion of the book … you quoted her as saying, ‘Even when you think you're getting a particular kind of care, you might not be, and you really have to know all the answers and ask all the questions. Because you're not fully in control.’
Emily: Right. With medical devices, and also medication a lot of times, the researchers and doctors may have a financial interest with outside companies. And you don't know … is that influencing your treatment plan?
Lauren: Yeah. And we're talking about all of this, because so many of these illnesses, in the first place, are invisible. They’re conditions that are either overlooked or cannot be seen, and so a doctor or perhaps a loved one might not believe that a woman is dealing with this condition. But the extra layer of invisibility here is being female, isn't it. And culturally, how we're looking at women, and the lack of acknowledgement that we're giving to women in these settings.
Emily: That’s definitely true with autoimmune diseases and fibromyalgia and chronic fatigue syndrome — where, because there's no specific test often that can clearly show … there’s no X-ray, for instance, that will show … that women are often not believed, even sometimes by their own families.
And those women really go through a lot in trying to get compassionate care.
Lauren: Yeah, it can be a real struggle. This comes up on the show, too … we talk to people, many of whom have their families supporting them … but many don't necessarily have that. And if you don't have any support — be it in the medical system, at home, online, wherever you manage to find people who are going through what you're going through — that adds an extra layer of difficulty in these situations.
Emily: Absolutely. One of the doctors was telling me about a patient of hers who has lupus, and she had to have chemotherapy — which can happen with lupus. And this woman got absolutely no support from her friends. Whereas if she had breast cancer … people understood that. They understand breast cancer. They didn't understand lupus.
Lauren: When one of their girlfriends in the neighborhood had breast cancer, everyone brought her meals and stuff. And then when she went through chemo, no one did anything.
Emily: Right. And I'm not saying this was because they were not nice. I'm sure they just didn't understand.
Lauren: Yeah, well, and also because people don't necessarily know what a disease like lupus is. And this comes up a lot too. I'm always saying ‘this comes up a lot, this comes up a lot’ … because they're coming up a lot in our discussions on the show … but they’re discussions that we want to shout from the mountaintops … that there are, in many cases, as many people … be they male, female, what-have-you … who are living with certain conditions that we talk about on this show specifically, as there may be living with cancer. There are as many people living with autoimmune — 15 million people living with autoimmune diseases. It's more than cancer and many other diseases combined. But, because perhaps they're under-researched, they're under-marketed … I tend to think … and your book has sort of confirmed it for me in many ways … because 75% of these people are also female, we’re not talking about it as much. And so even though, yes, there's less visibility, it's not like you're living with a condition that people can see from the outside. People don't necessarily know what these conditions are. I knew vaguely the words ‘lupus’ and ‘fibromyalgia’. But until a few years ago, when I really started having these conversations, I didn't know much about those conditions myself. It's fascinating. And I commend you for writing the book because I say, it's essential reading. So, based on all of the research that you did, we know that there are several ways in which the medical system is falling short. What about ways in which maybe it's working? Are there positives to this story at all?
Emily: Definitely. The awareness is growing, a lot. I'm not the only person writing this kind of book. There's some other really good, important books out there. And there are doctors who specialize in treating women and transgender women and different people who have been kind of left out.
So there definitely are improvements. Reason to be hopeful.
Lauren: Yes, absolutely. And in terms of the way in which the medical system is falling short or needing improvement, are there specific improvements that you can imagine, just from the stories that you share in the book, or the treatments that are shared about in there?
Emily: I think in some ways the #MeToo movement maybe will help women in health care as well, because it maybe will make us braver about advocating for ourselves. And not being afraid to speak up and ask for what we need.
Lauren: Yeah, absolutely. Well, speaking of speaking up, can you talk to us a bit about also the role of privilege, or lack thereof — in your experience, but also in some of the experiences that you share in the book? Because we know that in many cases, women of color are disproportionately treated badly in these situations, or misdiagnosed, under-diagnosed. How would you see that in your own experience?
Emily: I would say that women, in general, can have a tough time in getting compassionate health care.
But for women of color, it's often much worse. One of the most tragic ways this plays out has to do with maternal health and infant mortality.
Our country has a terrible track record with that; I think we're the worst of any country in the developed world. And women of color have a much harder time. Probably the most famous example recently was Serena Williams, who literally had to jump up and down … she had had blood clots in the past, and she was pretty sure that's what was going on. But she had to literally demand that they give her the heparin drip and a CT scan to find out what was going on.
Lauren: And she very specifically told them she knew.
Emily: She knew, yes.
Lauren: She knew, and she said, "This is what's going on.” And no one believed her.
Emily: No, exactly. It took her a lot of effort to get the treatment she needed.
Lauren: And this is Serena Williams we're talking about.
Emily: Yeah, exactly.
Lauren: It’s unbelievable. Luckily, she's okay, if anyone’s wondering.
Emily: She's okay. But she also went through significant postpartum depression, and one of the things I learned is that African-American women can have more problems with postpartum depression. And one of the psychiatrists I interviewed said part of it may be because sort of the accumulated trauma they go through in their health care … that could be a contributing factor.
It's kind of ‘micro traumas’, I think was the word she used to describe it, which was interesting.
Lauren: And those stack up, of course. And when you say African-American women have more problems with postpartum depression, is it that they're more likely to have it, or that they have it disproportionately at higher rates?
Emily: Both, I think. And they probably have a harder time getting treatment.
Lauren: And diagnosis.
Emily: I think a lot of women with postpartum depression, sometimes they themselves don't recognize the symptoms. And their family members don't. And doctors may say, “Go have a girls’ night out, or a glass of wine” — when that's not going to help.
Lauren: A friend was telling me that just the other day, that she's been dealing with something like that. And it's fascinating, because I was, like, “If you feel bad … end of. If you don't feel good …” But that's also me, because I've been through a health crisis. Not everyone's been through what we've been through to be able to say, “No. I’m putting my foot down.” And speaking of putting your foot down, I'm wondering what your Top Three Tips would be for someone who may have something off, may think ‘gee, that’s an odd symptom.’ Particularly for women, in this case … what would you recommend that people do if they're entering this world of invisible illness?
Emily: So the last chapter of the book, I tried to offer practical advice.
Lauren: I was underlining that! I’ve got to tell you, the good thing was, I was underlining, and I went, ‘I already do that!’
Emily: Oh good!
Lauren: But there were a couple of others where I thought, ‘Oh, I didn't think of that before.’
Emily: See, all the advice I've given … I never did any of that before. I didn't know what the heck I was doing. Because I'd never had a serious health problem before. But I would say, and different doctors offered good advice … probably the top thing is, when you go into the doctor, have like an elevator pitch or a logline of your problem. I think that's smart. That's number one. Number two, bring somebody with you; have your questions written down on your phone or on index cards, and give your support person a copy of those in case you get overwhelmed and you can't get them out, then maybe they can step in. Don't be afraid to get a second opinion … if you don't agree, if something doesn't feel right. One of the doctors I interviewed said, “Look, if I took my car to the same car mechanic five times, and they couldn't figure out what was wrong, I would go to a different car mechanic.” So I think we have to have as much respect for our bodies as we do for our cars.
Lauren: Absolutely! At the very least! But I think it's also a mark of a good physician … and this is something that came up with a few of the physicians that you interviewed, too and that I've interviewed myself … where they say, “Yeah, go get another opinion; mine's not the most important.” A good physician will say, “Go for it."
Emily: Right. They won't be threatened by that. People sometimes frown on going on Dr. Google, but I think it's a good idea. That way you can go in and say, “Look, I have these six symptoms, it kind of sounds like lupus, what do you think?”
Lauren: Well, that happened to one of the women in your book, right. That’s where it's also about knowing, if you're going to go to Dr. Google, picking reliable …
Emily: …respected sites.
Lauren: Exactly. Sites like the Mayo Clinic.
Emily: National Institutes of Health is good.
Lauren: Even the CDC in some cases, but not all. But also, really not going down the rabbit hole too far, right. Because if you go all the way down the rabbit hole, then you'll start having your own worries, and things that will just add to your own trauma. But it's good to have a measured approach to Dr. Google for sure.
Emily: Right. And support groups are terrific, too. The advocacy and support groups can give you lots of good information. Especially once you get a diagnosis, then they can help you out.
Lauren: Yes, for sure. Well, and there are also organizations that aren't specific necessarily to certain conditions, but provide support across the board for different umbrellas. So it's definitely worth doing the research and finding those communities. And you mention a number of them in your book, which is wonderful. So for you now, as someone who's been through everything that you've been through medically, written a whole book about it … do you have Top Three things that give you unbridled joy, that maybe compromise your lifestyle changes or might be indulgences or guilty pleasures. This is like my fun wrap-up question. Three things that give you total joy, that you're unwilling to compromise on, that really just make you feel good.
Emily: That’s so easy for me to answer because it's my three grandsons.
Lauren: Oh, that’s perfect!
Emily: They’re 5, 3 and one years old. I love every minute of being with them.
Lauren: Well, that’s perfect. And that doesn’t mess with your health in any way!
Emily: Interestingly, when I had the tumor come back and I had to go for the radiation, the first grandson had just been born. That was five years ago. And I remember stopping at their house on the way to go for the treatment. I think I was dropping off something.
And he was so cute and so little, I remember thinking, I've got to get through this because I want to be here for him.
Lauren: That’s really lovely. And it's really a message to people to turn to your loved ones if you can, soak up that support and love that they give you.
Emily: Yeah, and if you're not getting it from your family, then friends.
Lauren: Or these community resources.
Emily: And support groups are really terrific.
Lauren: Well, Emily, we know that the title of book is Diagnosis Female. Where can people find your book? And where can they find you?
Emily: The book can be found on Amazon, and also in a lot of public libraries. I'm a big library person so I'm really happy that this publisher places books in a lot of libraries. So if you don't want to buy the book, go to the library!
Lauren: And we’ll post a link to the Amazon link to the book.
Emily: Thank you.
Lauren: And on the the website page for this episode as well. Is there anything else that you'd like to share with everyone listening?
Emily: No, just thank you for your kind words about the book.
And I wish all your listeners happiness and good health.
A health crisis is no fun, but sometimes it leads to unexpected gifts — like meeting you!
Lauren: And you know, the other side of that is also reading a book like this, if you haven't been through a health crisis, can be so useful — because there's so many insights to be had that you may not know you need to know. Whether you're male or female. And this could affect you, it could affect your loved ones. This is why I call it essential reading. There's even info in here on how to spot a heart attack in a woman that might be different from the way you spot one in a man. I was writing this down in the back of my diary. Just in case I see Mom with any of these symptoms. That's just me being neurotic, I can't help myself. But there's some really useful insights and information. And despite the facts and the research in this, it's full of heart. There are such beautiful stories told here. And so I encourage everyone who's listening to get yourself a copy, because it's absolutely essential reading. So Emily, it's been a total pleasure.
Emily: Thanks, Lauren. It was great.
Lauren: Thank you for being on the show.
Emily: Thanks for having me.