You can also listen to this episode on Apple—or wherever you get your podcasts. You can also find it on YouTube.

Alexandra is a health and science journalist and an Opinion editor at The New York Times. Her first book, The Elusive Body: Patients, Doctors, and the Diagnosis Crisis, just recently came out, but she started the reporting for it back in 2018. It’s a fascinating read—full of interesting research and human stories—about how often patients are misdiagnosed, the large cost of this, and the people who are creatively working to improve our medical system. Which includes many talented doctors from within the system.

We talk about all of this today, including the amazing cast of characters at the Undiagnosed Diseases Network, which is run out of the NIH, and which could serve as a model for our larger healthcare system.

We talked about patient experiences, which I’m sure will resonate with many of you. We also talked about the role that technology and AI currently plays in a doctor’s diagnosis, and how this might change in the future. And we get a bit into the downsides of some of the newer early screening and detection trends.

The Elusive Body: Patients, Doctors, and the Diagnosis Crisis

ELISE:

Hi, it’s Elise Luna and host of Pulling the Thread. Today I’m talking to health and science journalist, Alexandra Ciferlin.

Hi, it’s Elise Lunen, host of Pulling the Thread. On this show, we pull apart the web in which we all live to understand who we are and why we’re here. My hope is that these conversations spark moments of resonance and plant tiny seeds of awareness so that we might all collectively learn and grow. Here is today’s guest, journalist Alexandra Ciferlin, talking about a unique group called the Undiagnosed Diseases Network.

ALEXANDRA:

What’s great about this program too is that many of the experts involved in it, it’s run by this physician, Dr. William Goll. We’ll be very frank with the patient like, “I think you have something very rare. I may not figure it out or I may not figure it out today or this week or this year, but I am committed to helping you figure it out and I’m going to do everything I can and put all the resources I can towards you.

ELISE:

Well, I feel like books like this are always well-timed, but this book feels particularly well-timed in the context of where we are culturally and technologically, right? But when did you start working on this?

ALEXANDRA:

I started the reporting for this back in 2018, so quite a while. And so many things were different. That was pre-COVID pandemic. That was pre this iteration of artificial intelligence. And so much of what happened over the years reporting this book ended up informing my

Thinking about so many elements and so many of the conditions I cover and how the solutions. So it’s been a long time coming.

ELISE:

Yeah. Well, and I think it just sort of puts its finger right on that point of fracture in our healthcare system, unfortunately, but where we find ourselves with this rolling disaster in terms of NIH grants being rolled back, just extreme mistrust, maha and its emergence. Now we have AI. But I feel like this, ironically, I guess, diagnosis exactly what happens that inspires or has inspired this moment that we find ourselves in, which is there are a whole lot of people who are misdiagnosed or are lacking diagnoses. And we don’t like to think about it. And my dad’s a physician and I’m so grateful for doctors and scientists. And this is just the baseline reality of the human body, right? The elusive body. It’s the name of your book. And the sooner we can start talking about it and naming it, and instead of pretending like it doesn’t exist, I think it’s an important step towards getting our whole system back on the rails.

Would you agree? Totally.

ALEXANDRA:

I do. I do. I absolutely agree. And I also think that, as you said, it’s not just the patient community, I would say, that is sort of upset about the status quo, though obviously those are the people who are going undiagnosed, but I have found through the reporting that so many of the medical professionals that I spoke to are also frustrated by the state of the system that they are supposed to be working in. So this is not a new trend, but right now a lot of physicians have huge caseloads. They only get so much time. I think if the average appointment is 18 minutes and you’re seeing something like 20 people a day, and that amount of time might be okay for a quick diagnosis of something like shingles, something pretty obvious. But for something that takes a little bit more time or is a little bit more complex, physicians don’t have all the time in the world.

They also have all the administrative demands on their time filling out electronic health records. These are things that the medical community has been complaining about for a long time. And I think the answers to helping the diagnosis crisis, as I call it, will require changes on all ends of the spectrum, both from the medical community and system-wide. And I actually think there are many people within healthcare who would agree that this needs to change and who would desire a better system to work in.

ELISE:

A hundred percent. And I think so often, as the world often is, it’s presented to us as this sort of false binary of Western medicine versus Eastern medicine and doctor versus patient, and that somehow wanting people to feel well, do well, be diagnosed and walk out of hospitals intact isn’t the goal, isn’t why people go into medicine, right? Inherently, it’s a human and healing practice, and yet I think so many of us feel there’s an antagonism, or that’s what we’ve seen play out politically, that there are all these people conspiring to make us ill and keep us ill. But I think some of the roots of this are really expertly explored in your book. So let’s start with just the basic facts. This was shocking to me that the statistic that ... What is it? That almost 800,000 Americans become permanently disabled or die each year because dangerous diseases are misdiagnosed.

That’s a John Hopkins statistic.

ALEXANDRA:

Yes. And the National Academies of Sciences, Engineering and Medicine also have this estimate that most people will experience a diagnostic error in their lifetime, some with devastating consequences. So I think while physicians get the diagnosis right most of the time, there’s still this huge number of diagnostic errors that happen every year. And there’s a variety of different estimates on the prevalence, et cetera, that Johns Hopkins ones is one of the most recent studies on this. But even some will cite some of the more conservative statistics, which would say, let’s say a doctor gets the diagnosis wrong in some way five or 10% of the time. So most of the time they’re actually getting it right. But then if you consider that there are 155 million visits to the emergency room every year, there’s one billion doctor’s visits every year, that’s still a lot of affected people.

And I think what’s been interesting in reporting this book is when I talk to people about it, just tell them I’m working on this book, it is about diagnosis, it’s about what happens when there’s some kind of error, whether somebody doesn’t get the right diagnosis, whether it takes a very long time, whether it’s wrong diagnosis. And almost every time someone says to me, either that happened to me or that’s my mother, my friend, everyone seems to know someone who has experienced either a very long time trying to get a diagnosis or they simply don’t have one currently. And I think what’s been interesting is that that has sort of been taken for granted. It’s very frustrating experience on an individual level, but what I found when reporting this book was just we’re talking about so many people who go through these really long diagnostic journeys and it’s so frustrating and isolating and often counterproductive, and there just has to be a better way.

ELISE:

Yeah. And the unfortunate thing, of course, is that there are the true sort of medical mysteries, and we’ll talk about the UDP and that whole world. That was so fascinating. And then there are the people who, as you, I can’t remember the exact terminology, but are laboring to prove that they’re really ill. We know all of this from the last 20, 30 years, these diseases that were thought to be all in your head and chronic fatigue and other sort of complicated autoimmune diseases, long COVID, which I know has sort of proven this out as actually a real and concern and shed light on some of these other issues within the same sort of domain. But can you talk about that, the promises of evidence-based medicine and then its pitfalls and where it fails patients who don’t fit the diagnostic criteria and then what happens to them?

ALEXANDRA:

Absolutely. So as medicine has gotten more scientific over time, so through the history of medicine where you have gone from basically a physician’s observations just of the person in front of them to a physician being able to not only listen to your heart and lungs and your chest with something like a stethoscope, to actually being able to peer inside your body with an ultrasound to being able to sequence a genome, there’s now so many more technical ways to diagnose. At the same time, what this has meant is that there is now a system in place where when a physician is looking at a patient and wants to diagnose them, often the signs of illness become almost more important than the symptoms. So what I mean by this is if someone comes in and they say, I’m having this horrible burning itching on my neck, and a physician takes that and says, okay, there’s so many things that could cause an itching sensation.

But then if the patient shows them an actual rash, then the physician can say, I either recognize this, perhaps it’s shingles, that’s a well-known kind of rash that a physician might see very often. The signs of disease like a rash, a fever, a test result have now, because we have the ability to measure those things, those become so important to the diagnosis. It is much harder for a physician to diagnose someone if they come in and they don’t have a lot of signs of disease. So they come in and say, “I’m very fatigued. I don’t feel like myself anymore. Even I’m feeling general pain, I’m feeling lightheaded, or even I have a headache.” Those symptoms could be symptoms of a huge number of possibilities. So what happens with some conditions, and for a long time, a lot of autoimmune type of illnesses might fall into this category because you are having people feeling a lot of things without a lot of test results that can prove what’s happening.

So those people are then falling into this bucket of the doctor doesn’t really know exactly what’s going on. And this sort of category can be really frustrating to be there. Sometimes it’ll be categorized as a medically unexplained case. They’re not quite sure what’s going on. And I think for a long time, there are a lot of those kinds of cases without a clear understanding of what’s going on. What’s interesting and what has changed a bit, and we sort of mentioned this at the beginning of our conversation, is this growing understanding of how certain things like viruses can cause a very long tail of an illness or just the growing understanding of autoimmunity in general, which has allowed medicine to be more open-minded to a variety of possibilities, whereas maybe even not that long ago, you would be told, “I have no idea what’s happening to you.

You might be told, “Oh, maybe this is psychological,” when really you were just at the edge of available medical knowledge. So it’s been interesting in that way that both science has improved the accuracy of diagnosis over history, and also when there are cases that are in some kind of murky middle, they can get kind of lost.

ELISE:

Yeah. And historically, I mean, there are massive implications for that beyond feeling gaslit, that somehow you have a psychiatric disorder that’s creating these feelings or you want attention. I mean, whatever the ways that we used to talk about people who fell into this black hole, but you couldn’t get a diagnostic code, you couldn’t get a treatment plan, you couldn’t get insurance coverage. So it has had sowed a lot of distrust versus where medicine seems to be going, particularly with things like long COVID or recognizing the recent sort of, was it, I don’t know if it was a meta study or that Epstein-Barr virus drives

At least a certain amount of MS that you can have these ... I think I have a fair amount of latent strep in my system, for example, that can kick up in weird ways, but now we’re starting to understand that, that’s actually a real event. COVID was helpful in that context. But yeah, in that chasm though, you end up with a lot of veterans, right? Massive groups of people who are abandoned and left to their own devices and frustrated and sick. I did feel reassured by your book that doctors are not leaving that as a vacuum, but are starting to become more comfortable saying, “There’s something happening. I don’t know what it is. It is at the limits of my knowledge or my institution’s knowledge or medicine’s knowledge, and it doesn’t mean that it’s not real and valid and that we aren’t going to try and help you.

We need that conversation and the funding for it so desperately, right?

ALEXANDRA:

Yes. And I think that COVID in a way actually really helped many in the medical community to understand this because there’s been a variety of diseases and diagnoses that have been associated with viruses and are basically potentially a lingering long-term, sometimes chronic response to having some kind of viral illness. And within these communities, and there have been people in science and medicine who have been studying them for a really long time, but it really wasn’t until COVID that the idea that a virus could basically just do rick havoc on a person’s body and that it might take them a really long time to recover was something that became far more acutely understood by all physicians. You mentioned Epstein-Barr virus. That was very recently, in the last five years, pretty definitively connected to MS. And that was a huge finding. It was just incredible that one of the most prevalent viruses can cause this disorder that people have had forever and has been a bit of a mystery.

And when I started reporting this book, neither of those things were widely recognized. And so even just in the past five years or so, this understanding that, oh, perhaps this has been happening for far longer than I’ve ... Perhaps a medical professional might go back and think about the cases that they’ve seen in the past that perhaps they may be dismissed as something psychological when in fact it was just something they didn’t quite understand yet.

ELISE:

It’s interesting in sort of my previous career, we would write about some of these connections between Epstein-Barr and what is it doing to the body and mostly not through sort of the studies that have emerged in the last five years, but through physicians, experiential or patients, et cetera, and get maligned for it. And that’s sort of what then drives this, not to say that everything was perfect or that everything was accurate or right, but it’s that when that’s shut down rather than saying like, “Let’s explore it. “ You start to get a population that is unwilling to ... You start to get this animosity, I guess, which we’re really seeing play out big time now. But I agree. I feel like I’m hopeful that as things like COVID will sort of get it on the line, that there’ll be a certain amount of humility that I think hasn’t always been attached to the practice of medicine.

Even though I know so many just incredible, wonderful, humble doctors who are absolutely willing to say, “I don’t know. “ But that hasn’t necessarily ... Maybe that’s been too rare historically. And you write about this. Doctors, for all of those perverse incentives and whatnot, can’t spend as much time talking to you, are glossing over the physical exam, are missing things, or this isn’t taught in the way the human side of medicine has been somewhat abandoned for technical testing, and there’s a lot that we lose in that.

ALEXANDRA:

Definitely. And I think you mentioned the physical exam, so that is something that used to be sort of foundational in a bedrock to medicine and to diagnosis, and that’s something that increasingly is going away. I was at a recent event where there were physicians and scientists, and someone just basically said, “Our medical students are not good at the physical exam. What do we do in this era?” And they were specifically talking about how do we think about artificial intelligence and people leaning on that more, but they were just reiterating that some of these mainstays of understanding the human body are changing, and it really does need to be something that’s instilled very early on in medical school. Something that was interesting to me in the reporting of this that you alluded to as well is that that humility and that sort of ability to say, “I don’t know what’s going on with you.

This is beyond my scope. I’m very uncertain right now.” That is still a very uncomfortable position, I think most physicians would say to be in. As a physician, you want to heal the person in front of you, you want to give them answers, and when you can’t, it’s really frustrating. But on top of that, even though uncertainty is such an inherent part of medicine, and as a practitioner, you’re going to deal with that so often. I found in my reporting that many clinicians talked about how they were never really trained for that. There was never really a session in medical school about, “And here is what you do when you have no idea what’s going on. Here is the script that you should use to explain to a patient that you just don’t know and you need to ... “ Physicians know how to refer people, of course, but many people I interviewed for my book talked about just this deep discomfort with uncertainty and how they really do think that if uncertainty became a bigger part of their training, basically how to deal with it, how to navigate it, that would be really helpful to them.

There are many things that sort of perpetuate this idea that the doctor needs to be all knowing at all times. And I think having that humility be more ingrained in their training could be really helpful.

ELISE:

Yeah. And just to stay there for a minute, and you write about this a bit, but what happens in terms of the legalities of that and also with errors and how so many doctors because of our incredibly litigious culture are also taught to minimize mistakes or to not own the wrong decision, even though that’s going to happen. My dad’s a physician, my mom’s a nurse now many years ago, but my mom had an aneurysm in her brain behind her eye that had partially ruptured and she was lifting weights and had a horrible headache. And my dad was like, “You’re getting an MRI.” And my aunt had also had an aneurysm. Anyway, my mom flew that night to see the world specialist and this specific type of aneurysm, which is hard to locate. He saved her life and his team left surgical gauze in my mom’s head and she was having recurring double vision and just not healing well.

And back in Montana where I grew up, they went back in, found the gauze, retrieved it, et cetera. And what was so striking about that experience is my mom reached out to her physician and she ran my dad’s practice. So she was always on guard against malpractice. She’s not immune to that anxiety, but she reached out to him to tell him what had happened. And this might’ve been before all the checklists that are now in place, making sure that people are properly counting out everything that went in and he wouldn’t respond. He never engaged with her and he didn’t apologize. And so she sued him and remodeled her kitchen.

ALEXANDRA:

Good for her.

ELISE:

I know, but she was really pissed to have to do that and yet felt forced by his own inability to apologize. And then conversely, my dad, who’s retired now, was never sued and things would of course go wrong. He did practice a lot of intensive care and he chalks it up and he’s of a different generation to having the bedside manner to go and sit with people even when things were terrible and to be human with them and to wish for a different outcome, to take responsibility for anything that was his responsibility. Anyway, I don’t think that doctors are really allowed to do that anymore.

ALEXANDRA:

No, that’s been one of the really frustrating parts of reporting this was in talking to experts who are really trying to think about solutions, something that everyone runs up against is this sort of litigious culture and this fear that health systems as well as individual physicians have over admitting mistakes or even tracking them. So

Might realize until this reporting that oftentimes a doctor or a health system may never know if they got the diagnosis wrong because it’s not really tracked in that way. So if you are going, let’s say into an emergency room and you see one physician and they do the diagnosis and then they go off on their shift and then perhaps you leave, but it wasn’t correctly diagnosed, so you go back and you’re seen by somebody else or you end up going to a whole other medical system, that first doctor that you saw is not necessarily being informed that they didn’t get the diagnosis right. So there’s no real reflection happening. And what many experts who are trying to fix this problem and saying, we do need to take on diagnostic error and lower these rates, what they say is it’s really hard to get a medical system to say, we’re even going to track this.

And honestly, sometimes for good reason, because what would happen legally is very scary to them.

What is interesting though is that many of the clinicians that I spoke to interviewed for the book who are considered especially good diagnosticians, many of them personally track cases and do feel like that is actually something that is very important to their own training and diagnosis, very important to their ability to get things right because they are learning from mistakes. So many of them will develop their own practices where basically they look at the last two weeks of all the patients that they saw and they try as best they can to get some sort of sense of the follow-up, whether they’re looking back in the person’s record and seeing, did I get that right? Did I get that wrong? And if I did get it wrong, why? Was it because I’ve never seen this kind of presentation before? Is it because it was at the end of my shift and I was really tired?

Trying to think through all of those factors and they really do think that that is an important part of their practice, but that’s not something that is implemented system-wide.

ELISE:

No, and I loved those stories. I loved Dr. Dollywall and the way that he does that so specifically in order to learn and to become ever better. And you have this quote from Dr. William Osler in 1905, which is, he advises the students to keep notes on their patients, begin early to make a threefold category, clear cases, doubtful cases, mistakes, and learn to play the game fair. No self-deception, no shrinking from the truth, mercy and consideration for the other man, but none for yourself upon whom you have to keep an incessant watch. But that’s a fantastic process to create a sense of accountability, to close the loop. I think it was Dr. Dollywal talks about when you don’t know how the story ends with the patient, then you’re going to tell yourself the most complimentary version, but that we don’t get better. And that feels not only imperative because of this diagnostic crisis, but also imperative.

I mean, you write about AI and how it’s sort of probably past the point of being able to pass its medical school exam at this point, but that it’s still, it’s at best an excellent counterpoint, but that it can’t do the physical exam. It lacks the context, it needs to be fact-checked, it can hallucinate, it can spiral. So we talk a bit about how this could look as a pairing.

ALEXANDRA:

Yes. So it’s been really interesting how quickly this iteration of artificial intelligence, especially these large language models, programs like the ChatGPTs or Open Evidence, which is a more medical system-focused version, it’s wild how much they’ve progressed. And when the book comes out, I’m sure there is going to be something. What has been interesting is that many of the medical experts I’ve spoken to are pretty optimistic about these technologies in a way that was surprising to me because back in 2018 when I was reporting on whether AI could help with diagnosis or medicine in general, there was a lot more skepticism because I think the kinds of technologies that had been available, just they weren’t as good. Now, these versions do appear to be much better and what they’re doing is taking just enormous amounts of information and distilling it very quickly. And so I speak to a lot of physicians who have started using these tools basically as what you might call a curbside consult, which used to be you would pull aside another doctor in the hallway and say, “Hey, I have this case.

Can I talk to you about it? And what do you think? “ And more and more physicians are now basically putting that kind of question into a chatbot. The issue is that it’s still, for every two studies that have some incredible finding about how well these technologies are performing, there’s a study that finds they’re not that great. So it’s still a bit mixed. What I think could end up being helpful in this process is it does seem like these tools can be helpful for things like identifying something that is very rare. So a given doctor who sees tons of cases of things like pneumonia probably doesn’t need to ask a chatbot what this patient has because they’ve seen all the different ways that pneumonia can present in a body because they’ve been a primary care doctor for however long. But when a physician bumps up against something they’ve never seen before, there’s some early evidence to suggest that perhaps a chatbot with access to tons of medical literature might be able to identify or at least raise a possibility that potentially a physician hadn’t considered before.

I think merging what a physician does, which is not just being able to hold all the information about the human body and their mind at one time, but is also clinical judgment and just being able to decide, okay, here’s this list of possibilities, but what do I actually think is happening to the person in front of me? I think that ability is very human and is something that I imagine physicians will be doing for a very long time still to come, but perhaps some of these artificial intelligence tools could help them with that disease differential list, that list of potential conditions, especially if it’s something that seems complicated or potentially rare, it might raise something they hadn’t thought of before, but then it’s still going to be up to the doctor to decide what to do with that information and whether it does actually make sense for the person that they’re seeing.

ELISE:

Yeah. It feels like if anything puts even more of a permanence on the human parts of medicine, the physical exam, the context, the environment, all those less obvious cues or things that might not necessarily be picked up on a lab, whereas the AI could crunch all that data, I’m sure much more efficiently, but it seems like it will always be, at best, it’s a dual-pronged approach. Let’s talk about, I loved this idea of the UDP and that this exists at different universities and it’s an NIH program. I know it’s sort of under fire, but this idea that there’s a group of houselike physicians, even though we don’t get necessarily the results in a single episode, but who are taking on these cases that are not diagnosable. Can you talk a bit about ... I loved that whole cast of characters.

ALEXANDRA:

Yes, I love this cast of characters as well. So the Undiagnosed Diseases Network, it started as the Undiagnosed Diseases Program is run out of the National Institutes of Health. And basically the UDP, which is the program at the NIH, it started with this goal to basically take on the most complicated medical mysteries, undiagnosed patients in the United States. And it’s such an interesting model. So people who typically they have seen many different physicians and they very clearly have something wrong. This is often someone with what might be a rare or even a novel disease. They get referred to the NIH, which then has this amazing protocol for trying to diagnose these patients. So if you are accepted into the program, what happens is a group of experts from different disciplines. So it is like a geneticist, a neurologist, a cardiologist, a dermatologist, anyone that they think their area of expertise might be relevant, they gather and they review the patient’s file, their medical history, the letters from the doctors that they’ve seen.

Typically, there’s letters from either the patient themselves or their family members, and they all review that before the patient even arrives and they sort of come up with a plan of what they’re going to do to try to diagnose this person. Then you get to go to this program typically at the NIH or there are these clinics now at universities around the US, but you go and you have what is typically a week long, maybe even beyond that series of appointments where you are seeing a variety of physicians and scientists, you’re doing all sorts of diagnostic tests, you get access to a variety of different technologies like genetic screenings, et cetera. And they take this very comprehensive, holistic approach to trying to understand the patient from all angles and ideally make a diagnosis at the end. And they’ve been quite successful in identifying very rare diseases and even identifying novel diseases that have not been seen before.

And what I love about this model is that it just feels very humane and it’s obviously very scientific, but from talking to numerous patients who have gone through this, often what they talk about the most is less, I got access to this incredible diagnostic tool, but more, this was the best medical experience I’ve ever had in my life.

And it does feel like it could be an actually very applicable model for instances in which someone has something much more complicated and difficult to diagnose that this kind of approach of having many people of different disciplines work together to figure out the diagnosis could be very beneficial.

ELISE:

Well, I think many people have an experience of, and I think my guess is that this happens to more women and certainly more people of color where you go and you feel, and rather than sort of innocent until proven guilty, you feel sort of guilty of Munchausens, I don’t know, guilty of making stuff up like you’re proving out, I don’t feel well. And I think in reading the case studies of the UDP patients, just that being heard, being listened to, being taken seriously, being treated in that way is kind of just the table stakes that seems hard to achieve. And if we could all just start there with slightly better bedside manner, curiosity and an acknowledgement, I get that you don’t feel well, it feels like it would go a long way towards rebuilding trust.

ALEXANDRA:

Yes, I definitely think so because I think what many patients who I interviewed for this book will talk about is how in a typical doctor’s appointment, they almost felt like it was about getting them out the door. Whether or not that’s true, that’s what it felt like. It was really hurried, especially if it’s a person who has something a bit more complicated and is not a quick diagnosis, they will feel like, oh, I have to reexplain all this information to this doctor and then they’re going to say they don’t know what’s wrong, so I have to go find someone else and I have to bring all this with me. And everyone’s just sort of trying to scooch me through the process as fast as possible versus when you go to the Undiagnosed Diseases Network or the Undiagnosed Diseases Program, you know that you are entering a space in which they are explicitly there to try to figure you out, which really should be what every appointment is, but it doesn’t always feel that way.

And what’s great about this program too is that many of the experts involved in it, it’s run by this physician, Dr. William Gall, will be very frank with the patient like, “I think you have something very rare. I may not figure it out or I may not figure it out today or this week or this year, but I am committed to helping you figure it out and I’m going to do everything I can and put all the resources I can toward you and hopefully we will get to an answer.” But I think just having that commitment to be with the patient over this journey, I think is very trust building and can really help what feels like very fractured relationships between patients and the medical system. People I think are aware that diseases are complicated, diagnosis is complicated. Of course, they want answers right away, but I think people also understand this can take a while, especially if it’s complex, but what they really need is someone who makes them feel like they are committed to getting those answers.

And I think people lack that right now.

ELISE:

Yeah. Well, and I think it pushes people, and again, all of these things have sort of their own shadow and their own light, but it pushes people to feeling like, “I have to be my own advocate, I have to be my own Dr. Google doctor. I need to go and get all these scans that I can get without a prescription to diagnose myself.” You write a bit about diagnostic creep, but I think as this technology becomes more available, and I know things like thyroid cancer have been well explored or this idea that sometimes we don’t need to know that there’s a non-invasive, that fine line between hitting everything with a hammer and actually only attending to the things that actually need intervention. Can you talk a bit about that because living in LA, I certainly see that where I’m like, I don’t want a full body scan.

I’m not symptomatic. Yeah.

ALEXANDRA:

Yeah. I can’t tell just how popular it is, but I find the growing popularity of full body MRIs to be pretty concerning because when you go searching for something, you’re going to find things. And with a full body scan, something might come up and it looks concerning, but perhaps it’s just a benign cyst that would’ve gone away on its own and it didn’t need any sort of intensive intervention. What I think can happen is when people feel like the medical system is ignoring very real symptoms that they are having, after they’ve gone through the traditional system for a while, they will or can get really fed up and feel like, “You know what? I’m throwing up my hands and I’m going elsewhere.” And it might be the influencer I see on my Instagram, it might be a full body MRI, it might be who knows what.

And sometimes people get the relief they’re looking for, but sometimes they can also be vulnerable to more medical type scams. I think there is this desire for answers and for relief that is very understandable. I think when you get to a place where you’re maybe more worried well isn’t quite the right term, but you’re sort of diagnosing things that are maybe ... There’s a lot of self-diagnosis, for example, that happens, I think, a lot on TikTok and social media platforms where people maybe didn’t think they had ADHD, but now that they see a bunch of videos online, they think maybe I do. And in some cases, maybe they do, but in other cases, maybe they don’t. But I think there’s just this desire for answers and diagnosis is an answer, but it’s not always the right one. And I do think that it is helpful for people to be more directly engaged with the healthcare systems.

ELISE:

I think that that’s right. You think about something like thyroid cancer, you mentioned in the book how the jury is still somewhat out, which was shocking to me, but that things like mammograms at the pace at which we currently get them, that I think we’re acculturated to believe diagnose, treat is always the best thing when in reality our bodies, if we were scanning our bodies every day, we would find sort of the beginnings of a cancer that then gets resolved on its own before it ever crosses our awareness or might be so slow growing, it will never be a problem in our lifetimes. That’s very difficult for us to sit with, but I do think when we think about where the technical part of diagnosis is going or things like function health, the biotracking, what it says, here’s information, take action on that information, I don’t know that it’s always helpful.

ALEXANDRA:

Definitely. And I think there is this big debate around the benefits of early screening, whether it’s for something like cancer or something else. And this has been why some of the guidelines around mammograms have shifted back and forth at this point over the years. But I think what perhaps some people get confused about when it comes to screening and the benefits or risks of early screening is the goal of screening for something like cancer or breast cancer is to prevent early deaths from breast cancer, to prevent cancer deaths. It’s not just to find things, it’s not just to find tumors. And this is very complicated, I think, to really wrap your head around, but it is the case that sometimes a very, very, very early stage cancer found in someone was never going to affect them over their lifetime. And so you have to ask the question, well, if that’s the case, then is it worth it to be treating that very aggressively?

Or had I not known about it, would it have not caused health problems or led to early death over time? It’s complicated questions, but I think the goal of diagnosis is not just to find things, it’s to ideally accurately diagnose someone so that you can provide a treatment that either alleviates their symptoms or helps them live longer. That’s the idea, not just finding things that need to.

ELISE:

And there’s a very massive, a life-changing difference between something going on in your thyroid and something going on in your lungs, right? If you could catch lung cancer stage one, that would be lifesaving, dramatically lifesaving. That’s one of those horrible deadly cancers that’s typically always caught at the end. I have hope that the technology will become more specific or more helpful in that way. I do think, and you sit obviously in this space in your day job, but that consumers are ... We’ve been getting a massive civics lesson for the last decade. I know some people have been engaged much longer than that, but I think everyone is like, “Oh, I do need to be political or this does affect me. “ And to that end, I feel like we’re in the middle of this grappling with healthcare and I do feel optimistic about the other side that we’ll see some sort of retooling, that there’ll be some context, some perspective taking around this entire process that will put people’s minds more at ease and create better relationships that include uncertainty and that the technology will come to a truly helpful place rather than just a chaotic overwhelm of today you have this thing wrong with you that you need to attend to or not, right?

ALEXANDRA:

Yeah. I’m really hopeful for that too. I really think that the issues with the healthcare system and where people feel like it’s falling short for them are so widely recognized and unfortunately increasingly recognized. And as I mentioned earlier, on all levels, I do find that some of the first people to criticize the way that the health system is functioning right now are people working within the health system. Everyone is very frustrated and I’m hopeful that we can figure out a way to inject some humanity back into it, not just in terms of having incredible bedside manner, though I think that matters hugely, but also just longer appointments when they’re needed, people not feeling like they have to be their own advocates through the entire system, and hopefully there could be more integration with other disciplines, et cetera, like the Undiagnosed Diseases Network model. I do feel hopeful about this because I do feel that both patients and the medical community do desire this better way forward.

ELISE:

So you will fall in love with some of the physicians that Alexandra profiles in the elusive body. These are physicians who are deeply caring and empathic and also genius level diagnosticians who also work hard to disabuse their students that technology will save us all, or that technology is inherently better than the physical exam and the context that goes with the patient and what they’re presenting with. So I don’t know, I’m hopeful that AI technology, the need to recreate, reconstitute our healthcare system as sort of one of the most pressing needs, at least on voters’ minds, will force the next iteration or evolution of medicine that will serve everyone so much better, where patients are seen by doctors who are allowed to spend time with them at their bedside, doing that physical exam, doing the interview, listening, looking, seeing, searching, because hopefully AI and other technological advances will take care of so much of the other dredge work that’s required in the practice of medicine.

So I think it will become more human, more loving, more clarifying, and more empathic. I’m going to hold that as a vision. So the book is called The Elusive Body. She’s a great writer and it’s a really interesting and fun read. Thanks as always for listening. I’ll see you next time.

If you got something out of today’s episode, I would so appreciate your help spreading the word. Please rate and review the episode, follow pulling the thread on your preferred podcast platform, and share this episode with a friend who would also enjoy it. That’s how we grow this thing. It’s so helpful. Thank you.