A (3:05)

Yeah, so I've been a doctor since 1991. So I've been a doctor for a long time. I've been a neurologist for over 20 years. And this book really came out of a sort of growing anxiety of mine that has kind of arisen out of experiences with my own patients. So I look after people who are very young, very often, I mean, a range of patients. But many of my patients are in their 20s or in their 30s, and particularly in the last five years, but maybe in the last 10 to 15 years in general, I've noticed an increasing number of spectacularly young people coming to me with long lists of medical diagnoses. And that would be okay if I felt like these long lists of diagnosis were leading somewhere meaningful, where diagnosis should lead. So they get a diagnosis, they get treatment, they get better, they move on. But what I see is a recurring pattern of people accumulating medical diagnosis without actually getting better. And that really sort of has worried me a great deal in my own practice. And that was a big kind of impetus for writing this book.

B (4:11)

Yeah, I mean, that's really helpful to have it expounded so clearly at the start of this conversation, because it sort of leads to this question that I had about essentially, what is the function of a diagnosis? Right, exactly.

A (4:26)

And that's so important because I think it's something that's going a little bit wrong. Now, maybe I could start by actually defining, because the book talks an awful lot about over diagnosed and over medicalization. So maybe I'll just start by saying, well, what they are. Because I think it's really helpful to have it really put very clearly at the start of a conversation, because I find that many people don't. When you say the word over diagnosis and over medicalization, a lot of people kind of think, oh, there's nothing wrong. Someone was complaining about nothing. That this is. That over diagnosis just means people are snowflakes or complaining about very little. So when I'm talking in this conversation or any conversation, about over diagnosis and, and over medicalization. I'm talking about a diagnosis may be right or it may be wrong, but it isn't necessarily helpful at a point in time. So sometimes referring to something as a medical problem is not the optimum way of managing it. I'm not suggesting dismissing people. I'm saying that sometimes we can help people without medical labels. And that is precisely for the point that you, you know, relevant to the question you just asked me, which is what's the diagnosis for? I mean, it serves lots of purposes. Obviously people want a diagnosis so that they have an explanation and they understand what's happening to their body or to their mind. So that's an explanation, can give people a lot of ease, but it shouldn't stop there. It should then lead somewhere meaningful. Now, the ideal place for it to lead is to a treatment that either completely cures the problem or alleviates the symptoms substantially. But of course, we can't do that for everybody. So if it doesn't cure people, one would hope that it would lead somewhere substantial like some symptom relief, or if symptoms cannot easily be relieved, then some sort of meaningful kind of support in the world that makes people lives easier. And this is where I think the concept of over diagnosis comes in with the patients I've been encountering is they get a diagnosis and it doesn't lead anywhere. And one has to really question the value of a diagnosis that isn't leading anywhere meaningful.

B (6:36)

Yeah, I mean, this is actually intellectually quite a complex territory, I think, because also the sort of value of a diagnosis in different biological contexts is quite different as well. Right. So, for example, one of the earlier chapters in the book is about Huntington's, for example. Right. So that's one where we know that there's no treatment options. Right. So it's not even necessarily about having a treatment or not, essentially is what I sort of took away from this. It's about how does as that label enable management into the future. But then on the flip side, there's a lot about. I mean, you know, we hear a lot about people talking about sort of feeling validated. Right. And this idea of validation and being seen is something that, again, I would say on the opposite pole of the sort of Huntington's side of the spectrum was the chapters where you talked about Lyme's disease and Long Covid, for example. Right. So I'm curious as to how you think about the different types of. The different types of things that can go wrong with people's bodies and the sort of how These labels sort of affect that, if that makes sense.

A (7:57)

Yeah, no, let me. Because it is a very sort of, you know, let's say that, you know, 20 years ago or before I started worrying and thinking deeply about this subject, I might have thought that an explanation is always a good thing and that there's no particular downside to it. And what I really want people to understand is that every time you get a medical label or a diagnosis, it potentially brings benefits and potentially can be harmful in other ways. So, and those. And it's this balance that worries me. And I would say that generally, if you're at the severe end of a disease or disorder spectrum, so let's say you have a disability that's very, very disabling, so you can't function normally in the world, then a diagnosis which brings an explanation and support is generally very helpful because you need a lot and you have a lot to gain. And the harm of having your difficulties labeled as disease or disorder is very small because you are already disabled by the disorder. So when I'm talking about problems like over diagnosis and harms of diagnosis, I'm always talking about that other end of the spectrum where the symptoms or difficulties are much fewer. That's where someone is vulnerable to harm. So if your symptoms are much fewer, you have less to gain from the diagnosis, but you have more to lose through being labeled as having something wrong with you. And I might tell a little bit of that Huntington story just to illustrate exactly what I'm talking about. So this is a story of Valentyna, and when she was 28 years old, she learned quite out of the blue, she was pregnant with her first child, and she discovered that her mother had Huntington's. Now, for those who don't know, Huntington's disease is a genetic condition. It's a neurodegenerative condition currently untreatable. It presents us really quite distressing manifestations. So it starts with psychiatric symptoms and personality change, and then there are physical symptoms or kind of involuntary movements. And as it sort of declines, people become so disabled, they can't eat, they can't swallow, they can't speak. So it's a very distressing disease to watch in a loved one. But the minute the Valentina discovered that her mother was affected, it meant that she had a 50, 50 chance of having it. And you can imagine, I mean, she's pregnant with her first child. It's an absolutely devastating thing to learn. The diagnosis not only meant that she had a 50, 50 chance of. Of developing this awful disease, but her child had a 25% chance. Now, the impact on Valentina was absolutely enormous. I mean, she could have had a genetic test to find out if she had it straight away. But she had extensive counseling from a genetic counselor. And she realized if the test came back positive, this first pregnancy that she was so looking forward to looking after her first child would be completely overshadowed. So she chose not to have the test, and she had a second and continued making the choice not to have the test because she wanted to live with the hope the test would be negative and get on with her life. But what happened over the next few years is she became. First of all, she watched her mother decline with Huntington's, and then she began seeing all the same symptoms in herself. She became. Her personality was changing. She got into arguments more easily. She was bumping into things every time she went to an airport, she traveled for business. She simply couldn't handle it. It was the level of organization. Her brain could no longer do it. She waited 20 years until she was actually quite disabled to decide to go ahead and have the test. Now, some people will be a bit surprised that she put it off that long. She put it off that long because she was a busy working mother who wanted to just live her life. She put it off so that she could enjoy not knowing the result and get on with the kind of hope that it would be negative. But she was so disabled when she had the test that she was sure it would be positive. And she had the test, and it was negative. She didn't have Huntington's disease. And this is really, you know, very few people will ever encounter Huntington's disease. But, you know, this story is a ubiquitous one that we all are kind of at risk of. If you are believed that you have a disease and you've been given a label that makes you believe that your body might potentially start exhibiting symptoms, then you will begin over interpreting little things. So we all get flustered in airports, but when that happened to Valentina, it took on monumental significance and then spiraled out of control. We all get angry and fight with people. When it happened to Valentina, it really kind of entered the frame of her consciousness and was amplified by that. And this is the problem with labels. And a label changes your experience of your body. It changes how you interpret things that are happening to you. And that's what scares me about them.

B (13:02)

Yeah, I mean, I think the heart of it for me here is about this axis of certainty and hope. Right. So Huntington's, it has to be said, is that it is. If you carry this gene, you will develop this disorder, right?

A (13:21)

Yeah.

B (13:21)

It's a hundred percent chance. You know, it's like, it's like if you have a trisomy, you will have a syndrome. Right. These are non negotiables, but there's a huge spectrum between something that is highly genetically deterministic, such as that, and other kinds of conditions that, that get diagnosed, right?

A (13:45)

Absolutely.

B (13:47)

I mean, I don't know if you would think it's fair for me to say, for example, depression might be one that you could put potentially at the literal opposite end of the spectrum.

A (13:55)

Well, I think, yeah, I think depression is a good example. Let's stick with genetics example for one second. So now these days you can have a genetic test that tells you you're at an increased risk of having dementia. Now it's not like now you can't have that test, by the way, as a routine on the nhs, but people get it in the private sector and on those over the counter tests. Now if I talk to people and I say, you know, would you have that test? A lot of people kind of say, yeah, I'd like to have it. Because then I could decide, would I retire early, would I, you know, worry less about the mortgage, would I live my life differently? And they're very valid arguments. And if, you know, you're, a person will respond in a really positive way, it's perfectly fine to have a test like that. But the difference between a genetic test for Alzheimer's and a genetic test for Huntington's is the Huntington's disease is a certainty. But the genetic test for Alzheimer's is just a risk factor. And the difficulty is that a person really could. If you get back that positive result, some people will react positively to it and use it as a driving force to live their life differently. But other people could have the experience that Valentina had, which is, let's remind ourselves, you know, our brains, our memories. I hate to depress people, but your, your visual memory starts declining when you're about 30 or in your, in your 30s. I, I'm of the age now where I'm like, you know, I cannot remember the name of a movie, I cannot remember the name of any movie stars. You know, I'm having those conversations where you're constantly going, what's the name of that? What's the name of that? Now imagine if I had a test that told me I was at risk of Alzheimer's, how easily I could over interpret and worry about those kind of ordinary aging of memory things. So we've Got to remember, when you get these labels, they are powerful, and they might not disable everybody, but they can disable some people. So I really say to people, before you have a test like that, really know who you are, know how you will react to it.

B (16:06)

I mean, I think that's really valid to say. But of course, then there's always the. The sort of dark matter of that conversation, which is you might think you know yourself well enough.

A (16:15)

Yeah.

B (16:15)

But nobody fully knows how they're going to respond in any circumstance until they're faced with it. Right?

A (16:20)

Yeah, 100%. Yeah. I mean, and also, like, you know, when Valentina had her test, she had extensive amounts of genetic counseling beforehand, but you can now go and buy these tests over the counter. And you. They do. I mean, in fairness to companies who sell them, they do ask you to read the small print. But who reads the small print? So, yeah, I would generally recommend that. What I learned from not just Valentina, I spoke to lots of people from the Huntington's disease community is what I learned was the value of living with hope of any kind of future. You know, living with the belief that, you know, you can be anything and life can go anywhere. There is value in that. It's very interesting that you. You know, Valentina could have had a test at age 28. She didn't. That is the choice that 90% of people with Huntington's disease, at risk of Huntington's make. And they make it because, as a community, they've understood the value of not having this albatross hanging over your head all the time.

B (17:21)

Yeah. I mean, I couldn't agree more. That was, for me, at least, that was the big theme of this thing, this idea of, like, at what point do you need data? And the understanding that there is always a price for the acquisition of data. Right. And it's interesting when we think about it, when it comes to physical interventions. So, for example, if somebody has a surgery, the doctor will explain to you, look, yes, we could have this removed or do this or the other, but of course, there is an actual risk to undergoing the process of getting from A to B.

A (17:56)

Right.

B (17:57)

And that was the sort of thought that kept recurring to me as I was reading the book. I was thinking, I understand what you're saying is even the process of getting a diagnosis has an actual cost, and you can't know in advance necessarily how it's going to be.

A (18:13)

Right.

B (18:14)

For example, very personally, I've never had a general anesthetic, and I will never know how I do under those contexts. Until the first time I face it. And there's no way of knowing in advance. But also the idea of hope. Now, something that I'm very interested in and sort of brings in my personal professional interests actually, is fertility. So I know it's not something you talk about necessarily in the book, but there are many tests that people can do for things like amh, for example, and it will give you a readout of what somebody's fertility status is potentially sort of, or it's sold as such. And these kinds of tests have real impact. And I was kind of wondering whether you felt that this sort of over medicalization and overextension phenotype is now really gone so far as, you know, everybody has wearable devices, gets every test they can get done. You get the, you know, you get the, you know, you get the blood tests done every year. You pay privately. What is the driver you think that people have? What is it that's driving people to do this kind of thing?

A (19:29)

First of all, I think we're scared of illness, we're scared of death, we're scared of aging. We're desperately staving all these things off. And I don't have any objection to any sort of intervention or advice that actually keeps people healthy. But the problem with too many investigations is they actually can make you sick, ironically. So let's say that if I see very young people, patients very often now, we do batteries of various tests for various things. It's quite unusual to get a full battery of tests back with not a single abnormality on it. It just rarely happens. The bottom line is I always try to remind people, well, first of all, look how different we are on the outside. You know, we all have similar sort of fundamental elements, but we don't look the same. There's a kind of an expectation that everything is much more standardized on the inside, but quite sample, frankly isn't. Then we've got to remember that we're all aging on the outside and we're also aging on the inside. And that comes with different kind of irregularities in tests. Now, we add to that the fact that, you know, when I qualified as a doctor in 1991, we didn't even have MRI machines. You know, there was hardly any. You know, they had been developed for research, but they were just trickling into clinical practice. So now we've got sort of, you know, when I was in medical school, there was only so many tests you could do. Now we can do MRI scans and see the inside of the healthy body in Technicolor In a way that. Well, not quite technicolor. We haven't got that far yet.

B (21:04)

Soon, soon.

A (21:04)

No doubt in great, great detail. You know, we didn't. Until we got our current MRI machines, we didn't even. We couldn't even look at the inside of a healthy body in any kind of safe way. So we didn't know how many little differences there are. And then you take genetic tests. The first whole human genome took 13 years to sequence, began in 1990, finished in 2003. That was the first time we'd seen a whole human genome. Now you can do the same testing in 24 hours. So we've kind of got a combination of. And we also have a new attitude to. Since about the 70s, to seeking out illness. So I think pre1970s, you had to get sick. I mean, in terms of screening and things, you know, it used to be that you didn't. Yeah. So it used to be that, you know, you'd only went to your doctor if you were sick. But since about the 70s, we have increasingly developed screening programs. So we have this, you know, thirst for knowledge and improved technology to give us knowledge.

B (22:06)

So, I mean, I wanted to ask you about that because, of course, I mean, at least I was raised being told prevention is better than cure. Right. And then there's this idea that all these improved technologies means that you have faster detection, and if you have faster earlier detection, and then, you know, that surely that. That expedites that process. So how do you think about that now in light of.

A (22:31)

Yeah, I mean, obviously. Yeah. So let's make the distinction between early diagnosis and diagnosis of very mild or atypical cases and prevention. So I would think about prevention as eat healthily, don't smoke, don't exercise. So that's clearly always good. It's always good to do the things that avoid giving you disease, like not smoking, not drinking too much, exercising, sleeping, et cetera. The difficulty is, and it sounds so sensible and it's actually hard to. It would have been hard to predict that it could potentially go wrong. But we assumed that if we found diseases and disorders in milder and milder forms, that. That if people benefit from being treated for cancer, when you find it late, it just stands. It seems like it stands to reason that you find it earlier, they will benefit even more. And that seems very, very sensible on the surface of it. But that was before we fully realized how many of us have abnormal cells inside our body that would never progress to cancer. So as we age, we get these abnormal cells and let's say a study on the prostate done in Detroit, looked at, I might get these figures slightly wrong. I think it's right. 45% of men in their 50s and something like 50 or no more than that, 60% of men in their 70s have abnormal cells in their prostate. Now we can look for those cells A, we can look for them and we have the technology to find, find them. But the truth of the matter is that most of those will never develop into a life threatening cancer. But when we find them, we've got these great ability to look for them and find them. We cannot tell the man who will get life threatening cancer from the man who won't. So when we find them, it's very difficult to know who do you treat aggressively and who do you just watch and wait for and the consequence of that, and that's the same not just for prostate cancer, but for every kind of cancer. It means that we find abnormal cells and we treat all of them as if they were life threatening cancers, when in fact only some of them are because we're just not at the technological point yet of telling the bad ones from the good one.

B (25:02)

I'm curious, so HPV screening, how does that compare? So you know, for women you go in and you get checked and then they might tell you, oh, there's a few abnormal cells and then the reaction is not we're going to treat you for something necessarily, it's more like we're going to keep monitoring you. Is that a sort of, in terms of like practical courses of action, is that. No,

A (25:28)

I've not in any way researched hpv, so I don't want to in any way say that I'm an expert, but that would be more. So let's come back to something I have researched. So let's say that like breast cancer, if you look at that in the same way that you're talking about hpv, you find the cell. There's two different strategies you can take which is that you can either treat it, every one of them, as a life threatening cancer, and just give every woman the operation and potentially some kind of chemotherapy, or you can say, well, we don't totally know that this will become cancer and this is more like the HPV example, it's just a precursor sake, for example, and you could do watchful waiting, meaning exactly what you're suggesting, which is you just follow someone up over time. The difficulty is though, if you're a woman and you just had a mammogram and someone told you you've Got cancer cells, you know, what would your reaction be? We are both women, you know, my reaction would be even having all this knowledge, get it out, you know, and it's because it's the way we talk about, we equate the cancer found on screening with the cancer that causes symptoms. So I should be really clear for anyone listening, if you have cancer causing symptoms, meaning you feel a lump or you've got blood or you've got pain, that always needs treatment. So I'm talking about the kind of cancer, you're 100% well, and someone goes out and does an MRI scan and finds some abnormal cells that does not necessarily always need to be treated. But that's not something everyone is aware of. And because we call the cancer found due to symptoms the same thing as the cancer found on screening, it's terrifying when you get that result back. So some people would argue that these two beasts are not exactly the same thing. So perhaps you should have a slightly different name for them. So, so when a woman gets a call back from that mammogram, she doesn't have to instantaneously react with fear. And also we need to let people know that if you have a cancer found on screening, it's okay to wait briefly and decide what you want to do. You know, my reaction would be fairly instantaneous if I'm being honest. But you know, if we talked about these things differently, women might feel that they have the space to say, well, can I have another scan in a couple of months time and see if this thing is changing rather than leaping into that treatment.

B (27:51)

Yeah, that's interesting. I mean, so we do live in a world in which, you know, we have all these technologies and there is, you know, it is there. So what do you recommend actually that people sort of how they conduct themselves given the state of the world now.

A (28:15)

Yeah, I mean, it is very difficult. So first of all, as you said, prevention is always better than cure. So you shouldn't need to have screening done or genetic tests done to tell you you're at risk of heart disease to know that you shouldn't smoke and you shouldn't, you know. So if you want to put your anxious energy into anything, then put that anxious energy into good lifestyle because we know that keeps it people healthier for longer. I would say that don't you know that sometimes people equate good medicine with lots of tests? So I might encounter people who say, well, you know, I went to the doctor and he said he didn't think there was anything wrong with me. I Didn't need any tests. And that reassurance might be considered, you know, he didn't do any tests. That's not the best medicine. They might encounter another doctor who does 10 tests, and they say, well, those tests meant that doctor was taking me seriously. I can tell you as a doctor that the easiest thing in the world to do is 10 tests because, you know, you're kind of protecting yourself. It's sort of a very satisfying interaction between a patient and a doctor. Let's imagine a situation. Somebody comes to me with a headache, and they're convinced they have a brain tumor. And I say to them, well, great, I'll do a brain scan. And they're delighted because now they're having the ultimate test that will prove they don't have a brain tumor. I feel better because they're happy. I've also protected myself against making a mistake by doing the test. Now, that might sound to lots of people like, that's a great medical encounter. That's how it should happen. Unfortunately, I don't think that is how it should happen. I'll explain why. Because if you do a brain scan for no particularly great reason. So let's say I see, you know, headaches are really common. And I don't. I don't truly believe that this person has a brain tumor and I do a brain scan, the difficulty. We're back to this difficulty again with, we're all different on the outside, but we're equally different on the inside. And you do a brain scan and you find a cyst or an abnormal blood vessel or a white spot. And these things are very common on brain scans. Now, I've done a brain scan in order to reassure you that everything is okay. And now I cannot tell you that your brain scan is normal. So instead of reassuring you, I'm potentially telling you there's something on the scan that will just worsen your anxiety. A good doctor is a doctor who does tests, listens to you, properly, understands your story, and does tests. Tests are useful when there's a high risk. You have the thing. So all of the characteristics of your headache sounds like a brain tumor. You definitely want to do that scan. But if all of. And if you're a bit uncertain as a doctor, you'll do the scan. That if you really, really don't believe that somebody has a particular disease, then doing the test is like dicing with danger. Because tests pick up things that just. And it's very hard as a doctor, then when you find something, let's say I find that White spot on the scan of the person who I thought was actually, okay, what am I going to do next? Will I do blood tests and then will I do a lumbar puncture? And a lot of people are taking down little medical odysseys by unnecessary tests.

B (31:29)

I find it's really quite interesting to think about more in terms of the sort of patient doctor relationship and how being a doctor has actually changed a lot. It sounds like.

A (31:41)

Right, that's so true. And actually, because I very much come from the, let's say the Pre. The early 90s and before then, that was when, you know, if you came to a neurologist like myself and you had a set of symptoms and you were worried there was something wrong with you. It was a very, very clinic, a time of clinical diagnosis where you're really, you're listening to the story really carefully to kind of understand the nuance of the symptoms. You're examining someone carefully, you see them a second time to see if things have changed. Now, I worry that as tests have become increasingly available, that we might be getting into an era where people are listening less well to the stories and relying on the tests. But I can guarantee you that relationship with your patient, that history and examination is the reliable part of the journey, and that's what we need to invest in.

B (32:37)

That's really interesting. Again, I don't want to put words into your mouth, but it got me thinking. I wonder if it sort of, the sort of prevalence of these kinds of tests and the stature and finality that we give to a test result perhaps sort of removes the agency a little bit from a doctor in a sense. We sort of think, well, the doctor may or may not know, but the test knows. Right?

A (33:05)

Yeah. And it's the opposite, actually. You know, and I know that what you're saying there is exactly what many people think, which is that the test is the ultimate decider. But actually it's a matter of taking the text in the context, the test result in the context of the story and the examination. And, you know, I fear that, you know, we are certainly in the UK where someone. I'm a very specialist doctor, so I do get to spend quite a long time with my patients. But, you know, GPs, family doctors, they, you know, they get so little time. And I think, you know, if we want better medicine, we shouldn't be investing in more MRI scans and blood tests. We should be investing in that doctor's time to listen to that patient's story.

B (33:53)

I think that's really, really interesting because, of course, a piece of data doesn't exist in isolation. It is actually context. And I guess what I'm hearing now is you're saying that the doctor is the person who has the skills necessary to be able to contextualize any inbound information for the patient. And that's really important, I think, for people to sort of think about and see in that way.

A (34:25)

Yeah, it's really, you know, I always say that the doctor, you know, the good doctor is the doctor who you feel like you've told them your story and they have understood it and they have listened properly and, you know, it's. And they have done the appropriate examination and then the test is just a kind of a supplement to that because, you know, it's only in the context of the story that the test makes sense, the test on its own. I think sometimes we think we'll get into one of those worlds like Star Trek where they run one of those machines up and down your body and listen. We might well get into that, but we're not anywhere near it at the moment. I mean, I really learned a very valuable lesson about genetics actually in this. In this context. So I thought that, you know, for a long time I thought if you had a genetic test and the test, you know, let's say Huntington's, since we talked a little about it before that, you know, I thought every test was like Huntington's, that you. If you had the abnormal gene, that you would get the. Or that you. You were at risk of the disorder. It was only through the journey of this book and talking to a lot of geneticists that I discovered even their context is evidence, everything that you only are at risk of the disorder if the disorder is also in your family. It's not the gene alone that we don't. That there's also probably there may be something else in the family that puts you at the risk of disorder. So, for example, if you have a cancer gene and lots of people in your family have cancer, then that cancer gene is very important and you may wish to act on it. But alternative, you had the cancer gene and no one in your family has cancer. Maybe it's not as important to you. Maybe your family also has a gene that protects against cancer. So every test is like that. There's loads of kind of what ifs and provisos, and that's why the history is everything.

B (36:22)

Yeah, I think again, thinking about the word context there, and given my own background in genetics, of course, what we're talking about in that space is that it's not just one Single gene that determines everything. It's even the genetic context of that gene that determines the likelihood of manifestation. And so, effectively, a single test can't tell you an outcome because you haven't tested all of the rest of the genes. And we don't know everything else that's going to happen in that context.

A (36:58)

Right, Exactly. And you need to know. Yeah. So, you know, I think I probably even at the beginning of this journey, relied on genetic tests a tad too much. And that's because I've always. The history of genetic testing for doctors is we only ever tested people who were already symptomatic or already had a family member who was sick. This concept of testing perfectly healthy people with no family history is really new, and it's really taught me a valuable lesson about how much we don't know if. And that's why the story is so important.

B (37:31)

Yeah. I mean, determinism, Right. Is the word for this sort of thing that happens in the context of genetic determinism. It means, you know, if you get told you're a carrier for this thing, it feels like, therefore, you will get it. And I think that that's kind of the parallel to what you were saying about people getting a diagnosis. It's like, you know, if I get a diagnosis for migraines, maybe every single time I feel a bit cranky or a bit off, I'm thinking, oh, this is a migraine, you know, and this is because I. Migraines, and, you know, these sorts of things become sort of reified almost in reality. Yeah.

A (38:08)

And I think sometimes when people hear a story like that, maybe about Valentina's story or the example you just gave, then people kind of think, well, that's not, you know, that wouldn't happen to me. Or they think that perhaps that only happens to a certain sort of person, for example. But actually, we are all vulnerable to this. I say to people, when I'm in front of audiences, I always say to people, listen, if I told you that the person sitting beside you in this audience had head lice, it would not take very long for you to begin having the physical experiences as if you had it as well. So these sort of, you know, uncomfortable feelings that you get just from an idea are very, very powerful, and they affect all of us. So imagine if. Replace head lice with genetic abnormality or something abnormal on a scan, and imagine the impact of that.

B (38:55)

I mean, of course, also, we know now, increasingly, that pretty much everybody carries several potentially pathogenic variants in their genomes in any given moment. Right. So I mean, I'm sort of trying to think now. I mean, we'd said a little bit about this idea of like giving a doctor agency, but I think also it seems like there's actually not just in the context of medicine, but we've become quite passive in a way. I feel like people don't feel a sense of agency for their own sense of whether or not they're well or not well or how it's going or not going. It requires some sort of external validation or a test in the context of the medicine to tell us, are you well or are you not? The fitness tracker phenomenon is a good example of that. Often my tracker will tell me, oh, you've had a terrible night of sleep. And I'll think, oh, have I? I mean, maybe I have. Or the other way around. Right. So how do you encourage your listeners or readers to sort of feel a greater sense of agency, I guess in knowing when is the right moment for you to go to a doctor and say no, really, something's not right or to sort of.

A (40:17)

Yeah, yeah. So first it's always feel comfortable going to your doctor, but just know that, you know, be prepared to take the reassurance when it comes without necessarily having tests. But with regard to the fitness trackers and things, you know, all these bodily systems that, so a healthy person, your body is not really supposed to be in your conscious awareness really, you know, the body is changing all the time. So you know, every time you go up a flight of stairs, your heart rate increases. You know, every time you, you go up a flight of stairs, your breathing increases. Every time you eat something, your bowels move, you know you have X number of hours of sleep at night. And these are unconscious processes. These are happening at a level that we don't really notice them when we're healthy. And that's the best way for them to happen. You know, we shouldn't be noticing them, we should be just allowing them to happen. The difficulty with fitness trackers and things is they bring something we're not supposed to be thinking about that much into our conscious awareness and then we get public conversation is just so kind of rule bound now. It's like if you don't have, you know, reading some things now, you would believe that if you didn't get seven hours of sleep, something catastrophic would happen to you. Or, you know, if you vary in some small way from other people that it's going to lead somewhere catastrophic. The best way to measure your sleep or your general well being is how do you feel? Don't worry about how many hours you slept. If you wake up in the morning and you're refreshed and you're able to get through the day without having to have a nap, well then you had enough sleep. So I try to tell people not to get too obsessed about all these bodily things. Never be afraid to go to the doctor if you're worried about something. But learn to recognize what good medicine looks like. And that's again, you know, you explain your problem to the doctor, you feel like they've taken the time to listen and understand and give you an explanation back. That's what good medicine looks like. It's not the person. You go to the doctor and say, well I feel like my, you know, there's something wrong. Can I have a test? That's not always the best doctor but I think, you know, a little bit of us, we're a little bit now because we've got all these self tracking things and we can have genetic tests and we can wear blood pressure cuffs and I would say don't buy any of that stuff. You know, go to your doctor for the proper types of screening that are offered by standard health services and don't do any extras because somebody's making money out of making you anxious about your health. Basically I should say that I don't have a health, a fitness tracker but I am obsessed with my step count. But I don't let it. At least it's sort of, you know, it's not the worst one because I feel like it just encourages me to make sure I'm a little bit active every day. So it's just choose wisely what you monitor.

B (43:05)

I think that ties really beautifully into what you were saying at the start. Data has to be gathered at a point at which it is going to be used to lead to meaningful change. So if you measure your steps and that means that you're going to know that you're going to go out and take a walk after we've had this call, for example, then that's useful data and it's unlikely to result in anything too negative as a cost. And so that's, that's where that balance comes in. I mean I'm mindful of times. So if there's any one last thing that you would like to encourage the listeners to think about or what the call to action is or failing that, what was the most surprising thing that you came across while writing this book? Something that made you change your mind?

A (43:52)

Well, actually the most surprising thing I've already said, which Is my realization that even genetic tests are contextual because they're so impressive looking in there, you know, that you get back this phenomenally technical result. And, you know, for it was just, you know, when I realized how incredibly contextual they were, I just thought, wow. It's just all fields of medicine are the same, which is that, you know, the clinical skills are more important than the lab results. But what I want people to kind of realize and to think about is when they approach a situation where someone is going to give them a diagnosis. And I think this applies particularly in, say, mental health labels. You know, do you. Is it better to get a diagnosis that gives you that moment of validation or explanation? Is that a genuinely useful thing? And I think before you take the label, then think about whether there are. How much are you going to get from that label? So where will it lead? What will it get you? In what way will it be useful? And in what way could it potentially be harmful? So might it make you think differently about yourself? Might it make others treat you differently? Might it affect your ambition for the future? Even practical things like will it mean that your mortgage pay, your life insurance goes up, your travel insurance goes up, that you can't drive your car? You know, so I think always we never have to worry about these things at this. If you're very sick, you don't worry about these things. But if you're at the milder end of any spectrum, then ask yourself, what do I get from the diagnosis and what can I lose? The other thing I think is useful, again, particularly with mental health labels, is to say to people, well, can I get the help that you are offering me without the label? You know, does it, you know, if I'm feeling down and I could benefit from some counseling, well, why do you need to give me a label of being a depressed person or a person who has a mental health problem? Can you not give me the counseling without the label? Because I think we kind of think about labels as being necessary in order to get help. Whereas I would say very often if I go to the doctor and my blood pressure is on the borderline, I don't want to be called hypertensive. But I would like the advice about how I should change my lifestyle in order to improve things so it's possible to be healthier without accruing lots of medical labels.

B (46:20)

Amazing. Thank you so much for your time, Suzanne.

A (46:24)

Thank you.

B (46:25)

That was Suzanne o' Sullivan talking about her book, the Age of Diagnosis. Are medical labels doing us more harm than good? We encourage you to go out there and find it. Thank you for joining us. I've been Ganesh Taylor, this has been Suzanne and we have been on Intelligence Squared. Thanks for listening to Intelligence Squared. This episode was produced by Margarita Volpatto and it was edited by Mark Roberts for ad free episodes and full length recordings. Become a member@intelligencesquared.com membership and if you'd like to join us at any in person events, you can see our full program and buy tickets over@intelligentsquared.com attend. You've been listening to Intelligence Squared. Thanks for joining us. Ryan Reynolds here from Mint Mobile with a message for everyone paying Big wireless Way too much. Please, for the love of everything good in this world, stop with Mint. You can get premium wireless for just $15 a month. Of course, if you enjoy overpaying. No judgments. But that's weird. Okay, one judgment anyway, give it a try@mintmobile.com Switch upfront payment of $45 for

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