Modern medicine has given us incredible tools to peer inside the body and spot disease earlier than ever before. But with that power comes a problem: the more we look, the more we find — and not everything we find needs fixing.
My guest today, neurologist Dr. Suzanne O’Sullivan, argues that our culture of over-diagnosis is leaving many people more anxious, more medicalized, and sometimes less healthy. In her book The Age of Diagnosis: How Our Obsession with Medical Labels Is Making Us Sicker, she explains how screening tests, shifting definitions of “normal,” and the rise of mental health labels can turn ordinary struggles or idiosyncrasies into problems in need of treatment. We dig into everything from cancer and diabetes to Lyme disease and ADHD and discuss how diagnosis really works, why screening can sometimes harm as much as it helps, and how to know when a label is and isn’t useful.
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Brett McKay: Brett McKay here and welcome to another edition of The Art of Manliness podcast. Modern medicine has given us incredible tools to appear inside the body and spot disease earlier than ever before. But with that power comes a problem. The more we look, the more we find. And not everything we find needs fixing.
My guest today, neurologist, Dr. Suzanne O’Sullivan, argues that her culture of overdiagnosis is leaving many people more anxious, more medicalized, and sometimes less healthy. In her book, The Age of Diagnosis, How Obsession With Medical Labels is Making Us Sicker, she explains how screening tests are shifting definitions of normal and the rise of mental health labels can turn ordinary struggles and idiosyncrasies into problems in need of treatment.
We dig into everything from cancer and diabetes to Lyme disease and discuss how diagnosis really works, why screening can sometimes harm as much as it helps, and how to know when a label is and isn’t useful after the show’s over. Check out our show notes at AoM.is/diagnosis.
All right, Suzanne O’Sullivan, welcome to the show.
Suzanne O’Sullivan: Thanks for having me.
Brett McKay: So you are a neurologist and you’ve got a book out called The Age of Diagnosis, how Our obsession with medical labels is making us sicker and you’re making the case that in the past few decades we’ve developed this culture in the West where you have patients who are actively seeking.
Medical diagnoses for things they might not have thought about addressing a few decades ago. And this might actually be doing us more harm than good. And so in your book, you talk about over-diagnosis. What do you mean by over-diagnosis and why is it a problem?
Suzanne O’Sullivan: Yeah, so I think the definition of over-diagnosis is crucial here because I think a lot of people, if they hear over-diagnosis, their mind immediately goes to this idea that, oh, there’s nothing wrong with that person.
They’ve been diagnosed and, and they’re complaining about nothing. But that’s really not what over-diagnosis is. Over-diagnosis could mean that someone is really suffering and they definitely have a problem. But that medicalizing, that problem is doing more harm than good. So if I give you a couple of examples, it can happen in different ways.
So one way that over diagnosis occurs is over detection. So now we’ve got all these amazing tests we can do. We have MRI scans, we have blood tests that weren’t available decades ago. The consequence of those tests is that we can pick up diseases and abnormalities at earlier and earlier stages. And when we do that, we usually treat everything that we find, but not everything that we find was inevitably going to cause a medical problem in the long run.
So not everything we find actually needs to be treated. So that’s kind of over-diagnosis by over detection, treating things that are there but did not necessarily need to be treated and wouldn’t have caused health problems if left alone. And the second way that we get over diagnosis is through over medicalization.
So that’s where you begin applying medical labels to things that may really just be ordinary types of suffering. So that may be giving mental health labels, for example. To people who are genuinely suffering. But it may be that that suffering is better addressed through examinations of life, such as, you know, changing your work circumstances or changing your relationship rather than referring to that suffering by a medical label.
So it’s really sort of, overdiagnosis doesn’t mean that a person doesn’t have a problem, but it’s asking the question whether referring to that problem as medical, is that really the right thing to do? And I also want to, I, my. Terrible talker, and you may often need to interrupt me, but at the, at the outset you said that we are seeking this out.
I have to say that that’s not my perception. I think it’s a kind of a collusion between scientists and doctors and the public. We’ve got tests and we want to do them, and we want to find diseases at earlier, earlier stages. We are calling people forward to be medicalized, but people are equally coming forward quite willingly and allowing that to happen to them.
Brett McKay: Yeah that was one of the big takeaways that I got from your book was that one of the reasons why this overdiagnosis is happening is that we just have these tests that are available to us that weren’t available decades ago. And I think what it’s done, and you talk about this in the book. Is that it’s really maybe distorted the lay person’s idea of how a diagnosis is supposed to work.
Because I think now with these tests, we think, well, you just take a test. You do the MRI, you do the blood test, maybe answer a few diagnostic questions, and then the doctor gives you this definitive diagnosis. But you argue with any medical diagnosis, there’s. An interpretive element to it. It’s not just this objective test.
Can you explain what people misunderstand about how diagnoses are actually made?
Suzanne O’Sullivan: Yeah, so I mean, a diagnosis is much more of of a clinical process, so that means that you have a complaint, it’s a pain, or it’s a lump, or something along those lines. And through the doctor listening to the story of what happened to you and examining you, they form a theory about what the diagnosis might be and then the test.
And I think people often think the test is then done to make the diagnosis, but really the test is done in order to help with. The clinical diagnosis a doctor has already made. Now, the important distinction here is that tests are meaningless without that first part of the stage. And I think MRI scans are a great example of this.
So I have to always remind people that MRI scans only came into regular clinical use in the 1990s. So. We’ve really only been using them in clinics for actually a relatively short amount of time, and the early MRI scanners weren’t very strong. So the new scanners have only been around for 10 or 20 years.
Before we had an MRI scan, it wasn’t possible to look. Inside a healthy person safely. We didn’t know what the inside of a healthy body looked like. ’cause you wouldn’t do a CT scan, a CAT scan, which is the predecessor really well still in use. But you wouldn’t do a CAT scan on a healthy person because it comes with a big dose of radiation.
So you only did CAT scans if you really needed to. The consequence of that is we didn’t really know what the inside of the healthy body looked like until we began doing regular MRI scans, and we’d never seen the inside of the healthy body in high definition until we got the MRI scan. Another thing I remind people then is look at how different we are on the outside.
Most of us have two eyes, two ears. You know, we, we are basically the same, and yet we are completely different on the outside. We are also different on the inside. So we suddenly have this technology that allows us look at the inside of the healthy body as we never could before, and we’re suddenly finding all these differences that we quite frankly just didn’t realize were there because we’d never looked at the inside of a healthy body before.
So in the same way that some of us have big noses and some of us have small noses and some of us have birthmarks and you know, other kind of outward differences. We also have inner differences that really don’t matter in any way to our health. The minute you do a test, be it an MRI scan or a blood test or, or almost any test, you begin finding all these irregularities by the time you get into your fifties.
About 50% of people have an abnormality on their MRI scan. So what I’m trying to point out is that these tests will pick up loads of little things that doctors call incidental omas. So just incidental findings that don’t matter to a person’s health. So the thing you find on the scan is not making a diagnosis, it is being taken in the context of the story you told your doctor and what your doctor found when examining you.
And then the doctor dismisses or places emphasis on what they found in the test based on that story, the test. Produce red herrings all the time, and this is the case for almost every type of test. So doctors are constantly filtering through those red herrings based on the quality of the story that they got from you.
So it’s not really a case of that you go to your doctor and they ultimately do the test to make the diagnosis. They’ll make the diagnosis clinically, and then they’ll use the test to help them. So it’s a real art, but the story is still really central to diagnosis.
Brett McKay: Have you noticed that younger doctors who have gone to medical school where these tests existed, they rely more on the tests than maybe an older doctor who didn’t have these tests when they were coming of age?
Suzanne O’Sullivan: Yeah, I absolutely have noticed that actually, and it is a concern. You know, I’m sort of, unfortunately, I hate to have to admit to it. I’m getting into the older doctor territory now. You know, I’m in my fifties and I qualified as a doctor in 1991, so I qualified just before we had a real kind of technological explosion.
And I think doctors of my era understand the clinical art and its importance a little bit more. Not in all younger doctors, but recently qualified doctors have all these incredibly high tech tests at their fingertips, and I’m not sure that they’ve learned the art of using them as well as they could always.
Of course, there’s many. Excellent doctors, but also there are doctors dependent on technology when I think really technology is a kind of an aid rather than something you should be dependent on.
Brett McKay: Yeah, I noticed this. So I had a general practitioner for a long time. He was an older guy in his sixties, and at the physical we do blood work, the typical thing.
And sometimes he’d say, well, here’s this thing. It’s a little. Out of the normal range, but uh, it’s not a big deal. And he’d ask a few questions, are you experiencing any of the issues? I’d say no. And he’d say, okay, we’ll just keep an eye on it, but you’re fine. Well, he retired and then I got this new general practitioner when she was younger.
She was younger than I was. That’s a weird moment whenever your doctor’s younger than you. And I went in to meet her and she’s like, well, while you’re here, let’s just do some blood work. And I’m like, okay, whatever. Sure. And we did it, and there was some stuff that came back abnormal, not super out of the range.
And she said, okay, we gotta do more tests. I’m worried about this. And I’m like, wait a minute, I don’t. I don’t think there’s a problem. I’m not experiencing any things. She’s like, no, we have to do it. And for a while there I was kind of spooked. I thought, oh my gosh, maybe something’s really wrong with me. I don’t know.
But it was interesting. I saw that difference between a younger doctor. And the older doctor, maybe that’s just a situation where as she gets more experience, she won’t be so test happy.
Suzanne O’Sullivan: Yeah, I think that probably is the case. You know, I think medicine is still really one of those careers where maturity makes a really big difference to how you practice.
You learn from, you know, what you see regularly and you will become a little bit less trigger happy with tests. But your story really, it illustrates the exact problem is if you do enough tests, you’ll find irregularities, especially as we get older. If I do blood tests in people in their sixties, I’ll rarely find that I get a hundred percent normal tests back.
There’ll be lots of little irregularities and that can really send a person down a rabbit hole, you know, ’cause you have a test to check the test and then that test shows something. And I’ve seen quite a lot of people going down that sort of medical rabbit hole that led nowhere. And a lot of us would shrug it off.
You know, most of us would just say, Hey, you know, it’s, you know, you’re a little bit worried, but it’s probably nothing. But it can take over some people’s lives. It can be very anxiety provoking. It can also have a lot of practical impacts on people in terms of insurance and things like that. So we, we do need to be, I think sometimes people don’t know what a good doctor looks like.
And I would say to people that good doctor isn’t the doctor who, when you go to them every time you tell them you have a pain or an ache somewhere, they do a test. That to me, isn’t the good doctor. The good doctor is the one who listens to you and understands when to do tests and when not to do tests.
If they do tests every time, then that’s a situation that concerns me.
Brett McKay: One of the arguments you make in the book is that doctors should only give a diagnosis whenever it would be useful. What makes a diagnosis useful or not.
Suzanne O’Sullivan: So again, you know, we’re doing all these tests and we’re constantly turning up irregularities, and it’s really part of the clinical acumen of a doctor to know how to communicate.
That to their patient and, and, um, what a patient can understand. So I, I think I use the example in the book. We can do a lot of genetic tests now and people with children who have learning problems can have quite extensive genetic tests done that sometimes show up. These things that we call variants of uncertain significance.
So again, we’re, we’re talking about a test here that’s only been around for 20 years and is turning up results that we don’t understand. And in the world of genetics, if you get a result you don’t understand, you call it a variant of uncertain significance. Now imagine you had a a two year-old child who’s struggling a little bit.
You get genetic tests and you’re hoping, those genetic tests will either tell you, you know, this is the problem, or there is no problem, and instead you get that middling answer, oh, your child has a variant of uncertain significance. Now nobody knows what that means. Could be absolutely nothing, could be something.
The question that I’m really asking is if that test result. Tells you nothing. Is it information that I need to pass on to you? I don’t think there’s a right answer to this question, by the way, because I think it depends on the doctor and the patient and their interaction. But if it’s possible that this test result that I got back that I don’t understand at all, and that might be meaningless and that I can’t really explain to you because it’s clinical significance is unknown.
If I pass that on to you and you spend the next 20 years. Terrified for your child’s health. Have I really done you a favor? Or if I withhold that information, am I being paternalistic and withholding information? You might want to know. So I think there’s a real delicate balance in medicine about what information you share and what you don’t share.
Because our job is not to find lots of irregularities that we don’t understand and then scare the living daylights out of our patients, which is becoming increasingly easy with all the tests we have available to us.
Brett McKay: So in the book you talk about different areas where we’re seeing over-diagnosis happen.
Let’s talk about over-diagnosis in cancer. So I think all of us have probably seen reports that cancer rates are increasing, particularly among young people. Do we know if cancer rates are actually increasing or is that we’re just catching more cancer because we’re doing more screening?
Suzanne O’Sullivan: Yeah, I think there’s pretty good evidence that cancer rates are increasing.
So if I make the distinction between symptomatic cancer, so symptomatic cancer is something you found a lump where there’s blood or there’s pain, you know, so you have a symptom that draws your attention to the cancer. And then the second type of cancer I’m gonna talk about is cancer found on screening.
And that’s where you are 100% healthy. You’ve been called forward for screening, and someone has. Found something that you didn’t know was there. So the first kind of cancer, symptomatic cancer that is increasing, you know, there is evidence that people under the age of 50, younger people than ever before are getting cancer.
So I do think there’s a real increase in cancer rates. Maybe it’s related to lifestyle, diet, obesity, et cetera. But we also have a problem of. Overdiagnosis in this group of screened cancer. So this is where people are being called forward and having mammography or blood tests to try and detect cancer that they haven’t detected because they’re perfectly well.
This type of cancer is subject to huge overdiagnosis, which I think it might be a little confusing to people, but we’re back into that sort of territory of. The inside of the healthy body is riddled with little irregularities. And until we got the technology to find them, we didn’t know that people lived out their lives with these super early looking cancer cells that never grow and never cause health problems.
So if you do autopsies and lots of people who died for other reasons, you find little. Abnormal cells that would be technically considered to be cancerous, but they never grew enough to cause health problems. The problem is when you do screening, you find these irregularities. They were always there. They were there in previous generations.
We didn’t know they were there in previous generations because we never looked at at them. We started screening and say the 1970s. Pre 1970s, we didn’t know that people lived out their lives with little abnormal cells that never go into anything dangerous. Post screening. We’re now finding these things, but we cannot tell the difference between an abnormal cell that will become malignant, life-threatening cancer, and an abnormal cell.
The won’t become malignant life-threatening cancer. And the consequence of that is we kind of have a tendency to treat all of them as equal when they’re not really equal. So a lot of people who are treated for cancer and screening probably would’ve been perfectly fine if we never treated them. I hasten to say, I don’t want to put people off from screening with this conversation.
You know, if they’re screening programs, it’s reasonable for people to present themselves for that, for that, but they need to know. About the uncertainties of the results so they can have a good conversation with their doctor about what they do if they got a positive result. So for example, if I have breast cancer screening and I was found to have an abnormal cell, I wouldn’t necessarily automatically say, well, I want, you know, all bells and whistles, cancers.
Tests and treatment, I might say, well, if it’s a very small localized abnormal cell and I know about these things, perhaps can we just do another scan in two months time and another scan two months time after that and see if it’s growing. So there are different ways of addressing these abnormalities when they’re found, and that’s what I want people to take away from this.
Brett McKay: Yeah. So a watch and wait.
Suzanne O’Sullivan: Exactly. A watchful waiting.
Brett McKay: What’s interesting though, with all this, and this is kind of counterintuitive ’cause I, I had a hard time wrapping my head around this, is that overall mortality rates for cancer are down. And so people would think, well that’s because, you know, we’re just catching this stuff earlier.
So the early screenings work, but that’s not entirely what’s going on. So what is going on?
Suzanne O’Sullivan: Well, it’s a little bit a mixture of things and it is kind of a hard thing to wrap your head around. Certainly people are surviving from, say, symptomatic cancer, so cancers that unequivocally need to be treated.
People are surviving better because cancer treatments are better. You know, there used to be no treatment for melanoma. Now there is a treatment, so, you know, treatments for cancer are getting better. However, we also have these sort of really, um, kind of difficult to interpret cancer survival statistics from people who are getting.
Diagnosed with cancer from screening. So just imagine that you screen a thousand people for, for cancer, and let’s say a hundred of those were destined to get symptomatic cancer at some point in their lives, but you over diagnose 300 people and you treat all of those 300 people for cancer. Well, 200 of of those 300 were never going to get symptomatic cancer in the first place.
But if you now look at how successfully you treated those people, the results will look really optimistic. They were never gonna get cancer, therefore they didn’t get cancer and therefore they didn’t die of cancer, but they were never going to. Anyway, my hope I’m making sense here because it’s, yeah. It’s, you know, if you over-diagnose people with cancer and you treat too many people for cancer, you will make cancer survival statistics look a lot better than they actually are.
And that’s why a more useful way sometimes at looking at how successfully we’re treating cancers that are found on screening is to look at what we call all, all cause mortality. So you can look at one of two things. Did they die of cancer? One would hope if you’re overdiagnosed in cancer, that the answer to that question would be no.
So let’s look instead at this thing called all cause mortality. So deaths for any reason. And there was a really sobering study published, I think it was in the Journal of the American Medical Association in 2023 in which they looked at all cause mortality. People who’d been diagnosed with cancer and screening for a whole bunch of cancers like colon, prostate, breast, and they found that they had not prolonged any lives in most of the groups through cancer screening and the colon cancer group.
They had prolonged life by three months, but in the other groups like prostate and breast, people did not live any longer courtesy of their screening and cancer diagnosis. And the reason for that is if you’re over diagnosing, so you screen people. You save somebody’s life for sure. So you found somebody who had cancer that was gonna grow.
You found it, you treated it, you saved that life. But probably there are 10 or 20 other people who you treated who never needed to be treated, and now you have negatively impacted the health of those 20 people. So you’ve saved one person’s life, but you have. Affected the health negatively of 20 or 30 other people who might die of complications of treatment, for example.
So you’re saving some lives, but you are having a very negative impact on others. So it’s a kind of zero sum game, you know? Yes, some people are safe, but other people are given unnecessary treatment that is dangerous to them.
Brett McKay: Yeah, cancer treatment is rough.
Suzanne O’Sullivan: Yeah. You know, people always relate very strongly to the life that was saved in these questions because we all know people with cancer and we know people who’ve died of cancer, and it’s a very frightening thing.
I don’t think we think long or hard enough about the people who got the unnecessary treatment because. Radiotherapy, chemotherapy operations. These are really enormous things physically, but also the psychological impact of being told you have cancer is absolutely enormous. And then we’ve got the kind of financial impact in terms of insurance or jobs or applying for mortgages going forward.
So there’s, we’ve got a very kind of strong focus on saving that one life. And I think we have an unnecessarily kind of blase attitude to that overdiagnosed group.
Brett McKay: One area in cancer where you see a lot of over-diagnosis due to screening. There’s a lot of debate around it. Is prostate cancer, why is prostate cancer so prone to over-diagnosis?
Suzanne O’Sullivan: Yeah. I mean, you know, so. Prostate cancer. It’s because the type of screening they do for prostate cancer at the moment. Now this will change and people are working on improving this, but at the moment the most common type of screening is just to measure a blood test for prostatic specific antigen. So this is sort of a, a blood test that if it is elevated, it doesn’t mean you definitely have prostate cancer, but it means that you could potentially have prostate cancer.
The problem with that test is it’s just completely unreliable. You know, I draw people’s attention to the fact that there is no national screening program for prostate cancer in the US or in the uk or in most countries in the world. And that’s because this particular test has such a reputation for over-diagnosis.
You know, studies are really different on these statistics. To give people a rough idea. If you screen a thousand men for prostate cancer using PSA, you will likely save one life, but you will probably find an elevated prostate in about 240 or 250 people. That’s a lot of men who are now kind of gonna go on a diag.
They won’t all be diagnosed with prostate cancer, but they will all be started on a kind of diagnostic odyssey of do they don’t? They have prostate cancer and tests and screening. A small number of them will have biopsies and. Small number of them will be told that they do have prostate cancer. But most of those never needed to know that because as men get older, a huge number of them develop cancerous cells in the prostate that never progress.
So there was an interesting study done in Detroit where the autopsies were done on people who had died in accidents and things unrelated in any way to the prostate. And they found that 45% of men in their fifties have abnormal cells in the prostate and 60% of men in in their. Might have that. Statistics might be slightly low actually, of men in their sixties have abnormal cells in the prostate.
So as men get older, they all get abnormal or a large number, get abnormal cells in the prostate. Once you start screening for that, using prostate specific antigen, you’ll over diagnose lots and lots of men. So the unreliability of the test is the reason we don’t do this now. I think the solution to this.
Is to screen the right people. So there are men who are at higher risk of prostate cancer than other people. People with family history of prostate cancer, for example. Um, black men are more likely to have prostate cancer, so you can still do screening. But screening is more meaningful if it’s done in people who are at high risk.
Whereas if it’s done in people with low risk, it can produce very unpredictable results. And also, if a person is really concerned about their health, they may still wish to discuss getting a PSA test with their doctor, but it’s important they know before they have that test done. How. Uncertain. The interpretation of the results will be know yourself in a sense.
You know, are you the kind of person who if they get that abnormal result back, will struggle to live with that knowledge? Or are you the sort of person who can enter a watchful waiting program and not worry too much? So it’s all about knowledge, so you know what to ask, and knowing whether you can handle the information that you get back.
Brett McKay: Yeah, I got an example of someone who had a deleterious outcome because of a PSA test. So he is in his fifties. Got the PSA, it was elevated and the doctor’s like, I’d like to do a biopsy. And for those who don’t know biopsies, they basically stick a needle through your rectum to your prostate and then extract some tissue.
And he’s like, I don’t want to, no, I don’t. I don’t think so. I don’t think I have prostate. I’m healthy. I don’t have a history of it. And the I said, no, you need to do it. And so he, he did it and he ended up getting sepsis from the biopsy. And he was in the hospital for a few weeks and he didn’t end up having prostate cancer.
There was nothing there.
Suzanne O’Sullivan: Well that’s, that’s it. Precisely. I mean, you know, you will save the occasional life through this type of screening, but you will send a lot of people on this very, very unpleasant road of tests. So they’re working obviously very hard on, on proving this screening. And in the future I hope that things will be better, but at the moment, there is no national screening program for a reason, and that’s worth thinking about.
Brett McKay: We’re gonna take a quick break for your word from our sponsors and now back to the show. You mentioned colon cancer and there’s been more of a push in the past decade or so to get a colonoscopy, but I think the recommendation for the age to get your first one has been lowered. It used to be 50, now it’s 45, at least here in America.
Suzanne O’Sullivan: Yeah. We don’t have colonoscopy as a standard screening tool in most countries. It’s usually testing for blood in your feces, and if there’s blood there, then that potentially is symptomatic cancer, but it could also be hemorrhoids. So that’s the usual type of screening that it wouldn’t be to go straight to colonoscopy because colonoscopies, you know that that’s an unpleasant test that comes with risks of things like perforation.
You don’t want to. Leap into that unless you have a family history. Again, we’re we’re, we’re always back to this sort of, these things need to be made. These decisions need to be made in the context of risk. It’s like, what’s your clinical story? What’s your story? What’s your background? If you’ve got a family history of colon cancer, then you’re in a high risk group, and then certainly colonoscopy is something you’d wanna consider.
But if you’re someone who’s very healthy with a very healthy diet, who is asymptomatic. Then that may be not something you want to consider.
Brett McKay: Yeah, that’s something I’ve interesting. I’ve noticed America tends to be screening happy, like we love our tests and not so much in Europe.
Suzanne O’Sullivan: Yeah. Well, do you know what we do fair bit of screening as well, but I, I think you’re, you’re right, we’re not quite as, I think it’s how to, a certain degree is how our health services differ.
You know, we, in the National Health Service in a way. I, I consider myself to be protected by the NHS from Overdiagnosis because, you know, there’s no, you can’t have a test on demand. We’re much less likely to have whole body MRI scans or to have MRI scans if you have no, or minimal symptoms and a. I’m quite happy with that term of events because the more tests you have, the more likely you are to find these incidental things.
And I think that once really sobering, um, study was in the New England Journal, I’ve forgotten the date of it now, but a very, very recent in the twenties roughly. And they looked at cancer diagnosis in high income countries like the US for example. Versus low income countries. And what they found was that, yeah, people live longer in high income countries.
Well that’s not surprising. You know, you, you don’t only have better healthcare, you also have better lifestyles, et cetera. But they found something else that is worrying. They found that much more people were being diagnosed with cancer in the high income countries than in the low income countries. But the cancer survival rates for those cancers were actually quite similar.
So. It seemed like a lot of people in high income countries, by virtue of having more tests and more high quality tests are being diagnosed with cancer potentially unnecessarily. No extra lives were saved by all the extra cancers being diagnosed. The paper estimated that, you know, for every cancer diagnosis, through all of this availability of technology, 10 probably weren’t necessary.
So, you know, I know that the NHS has a great deal of problems. It is. Needs to be a a lot better funded than it is, but there is something to be said for the lack of financial dealings between patient and doctor. You know, a patient comes to see me. The diagnosis is dependent on nothing but the story that they tell me.
I have no, they’re not my customer. I don’t need them to come back to me to be paid and so forth. And there’s something in this kind of financial transaction between patient and doctor that is, is potentially harmful. And I don’t think people always realize that.
Brett McKay: Another area you talked about where there could be.
Overdiagnosis going on is diabetes. I mean that’s because the diagnostic boundaries have shifted in the past, I think, decade. What was that change and how has that led to overdiagnosis?
Suzanne O’Sullivan: Yeah, so this is a trend in medicine in multiple different areas of medicine. So, you know, there’s lots of medical problems, which the diagnosis isn’t based on there being an abnormality.
It’s. Based on drawing a line between normal and abnormal, like what level of blood sugar are we willing to accept as normal? What level of blood pressure are we willing to accept as normal? And we’ve had this assumption in medicine that if we kind of keep moving, that if we can detect more and more people with borderline diabetes or borderline hypertension.
Or borderline obesity, borderline mental health problems, that we will help more people and therefore we keep adjusting the line between normal and abnormal to diagnose more and more people. So I think it was in about 2003, we had created this condition called pre-diabetes. So this isn’t diabetes. This is a kind of borderline state between being perfectly healthy and potentially going on to develop diabetes.
In 2003, they made this slight adjustment. To the measure that would allow a diagnosis of pre-diabetes and then a fasting blood glucose. You fast, you have your blood sugar taken. And on one day in 2003, if you had a measure of 6.1 millimoles per liter of fasting blood glucose, you were healthy. But then they adjusted that and said, no, 5.6 will be the new cutoff.
So it’s just a small change, you know, one day. 6.1 is normal. The next day, 5.6 is normal, but the result of that is that if the changes in the way that pre-diabetes was diagnosed was applied to everybody in the world, this small adjustment along with some other changes in how the diagnosis made would mean that half of Chinese adults would be pre-diabetic and a third of us adults would be pre-diabetic.
So. You are sitting at home minding your own business essentially, and you feel you’re perfectly healthy. And meanwhile, somewhere in the background, a committee is convening and deciding, you know what, what counts as normal glucose? And on a Monday they change it and suddenly you are. No longer healthy.
Now you are a patient, and this is done with very good intention. It’s because, well now we’ve recognized loads of more people with pre-diabetes, we can stop people getting diabetes. The problem is that it’s not working. The rates of diabetes are rising all the time. Even though for 20 years we’ve had escalating diagnoses of pre-diabetes, and this is really the absolute definition of overdiagnosis, is you identify more and more and more patients.
But you’re not actually making people healthier. And it may be that they’re not following the advice that they were given, for example, but what is clear is that this kind of growing, um, group of people with pre-diabetes is, is not benefiting them to know that.
Brett McKay: Yeah. And it’s essentially about pre-diabetes.
It’s in this weird gray area ’cause it’s not officially a diagnosis, but then people treat it like a diagnosis. They think of themselves as a patient. Well, I have pre-diabetes and I have to do certain things to make sure I don’t get full-blown diabetes.
Suzanne O’Sullivan: Yeah, that’s it. It’s not actually a disease, pre-diabetes.
It’s like a pre disease state, but it sounds very much like a diagnosis and in one sense it could be a great thing. So it depends really on your mindset and your lifestyle and how you respond to news. You know, if I was told that I had pre-diabetes, then perhaps I would respond by improving my diet and exercising a bit more and trying to lose some weight.
And, you know, it could have a really positive impact on me. It could be a really good. Thing for my long-term health, but somebody else might respond differently to that. If you take a healthy person and tell them, you know, now because of this blood test, I consider you a patient. That can have a very negative impact on other people.
It can affect, if you turn a person into a patient, they can start behaving like a patient. They begin noticing things about their body. You know, being told that you’re unhealthy turns your attention inwards to your body. And then you start noticing little things and worrying about symptoms you didn’t worry about before.
You know, in a sense, the creation of pre-diabetes, we created it to protect people’s long-term health, but we’ve underestimated the impact of the news that you have pre-diabetes on a person, how that might affect their kind of self-concept and how it might affect how they feel about their body and so forth.
Brett McKay: Yeah, it threw me for a loop for a while, so I remember I had some blood work done. My fasting glucose was high. It was like 102, and I was like, oh my gosh. I got pre-diabetes and I even went out and I bought a glucose monitor, started measuring my glucose every day, and I’m like, I don’t know what I’m supposed to do.
’cause I exercise, I eat right, I don’t drink. I’m doing everything. I’m not overweight. And I remember I finally talked to a doctor, I was like, what do I do? I have pre-diabetes. And they’re like, well, let’s check your insulin, your fasting insulin looks good. So you don’t look like you’re on the road to diabetes.
Maybe your glucose just runs a little high. In the morning and that’s your normal.
Suzanne O’Sullivan: Yeah. Well that’s it. You know, again, I kind of remind people of how different we are on the outside and you know, these sort of differences exist on the inside too, and it doesn’t have to be an abnormality. And in a sense you made the important point there, which is you are otherwise a very healthy person.
You know, these things have to be taken in context. If I was told I had pre-diabetes and I was also a smoker. You know, my father had heart disease and my mother had a stroke and I’ve also got borderline high blood pressure. Well then these are issues that need to be addressed. But if you’re otherwise a very healthy person with a borderline blood test abnormality, then you don’t necessarily have to be so worried about it.
So we need to take these things in context and, and not be terrified of every abnormal result.
Brett McKay: You mentioned high blood pressure, uh, has undergone. Uh, a change similar to diabetes and how we define it?
Suzanne O’Sullivan: Yeah, I mean, you know, uh, so there’s this thing sort of borderline hypertension, which I guess is the same as pre-diabetes.
You know, you, your blood pressure’s kind of in that border area. You’re not really hypertensive, but you could spill over into that region. The level of blood pressure required to have borderline hypertension just keeps shifting and. In the US Now, borderline hypertension is a measure of 130 over 80. Now, when I was in medical school in the 1980s, 130 over 80, you’d be delighted with that blood pressure.
That’s perfectly normal blood pressure. Whereas now if if it’s a little bit higher than that, you potentially. Could be offered. Well, you’ll definitely be offered lifestyle changes, but you could also be offered drug treatment for that, something which would’ve been considered completely normal two or three decades ago.
In Europe, we use a slightly more generous cutoff, more around 140 over 80, or 140 over 90, because these are arbitrary cutoffs. No one knows where normal blood pressure begins and ends. So committees of experts get together and make arbitrary cutoffs. And when they do that, when the change was made to decide that blood pressure should now be normal, up to 130 over 80 and abnormal above that, that immediately made a third of American adults a borderline hypertensive, which is just astonishing statistics.
Can it really be true that a third of adults in the US are borderline hypertensive? The purpose is good. The purpose is prevent heart disease, prevent strokes. But how many people with borderline hypertension do you have to treat to prevent a stroke? Well, that could be, if I treat every single person I meet with borderline hypertension, I might prevent.
You know, one stroke per per a thousand people, but I might treat 150 people who never needed to be treated. So you always, with these adjustments, you’re always saving somebody, but you are equally, you can be guaranteed. You’re overtreating a great deal. Many people. More people. So you’re probably, you know, per life save you’re probably overtreating a hundred and 150 people.
But that’s, you know, that’s okay if it’s just a little kind of reminder to be healthy. You know, if you are the person who goes to your doctor and they say you’ve got borderline hypertension, and then you go home and your lifestyle is suddenly transformed by the news, well then that’s been great for you.
And I don’t object to that. But you could be the person whose life is taken over by concern about your blood pressure or who goes on tablets and gets side effects that makes you sick when you weren’t sick before, or whose health insurance goes so high that you can no longer afford it. So we have to think both sides of it.
Brett McKay: Another area you talk about where there’s a lot of over-diagnosis is Lyme disease. Why is Lyme disease so hard to diagnose and why is it vulnerable to over-diagnosis?
Suzanne O’Sullivan: You know what, uh, the first thing I’d say is I don’t think Lyme disease is hard to diagnose. Lyme disease is very well defined clinical criteria and you know, no test is a hundred percent reliable, of course, but pretty reliable.
Two stage blood testing, there’s two stages of blood testing you have to make the diagnosis. So actually, I’d say diagnosing Lyme disease. Is relatively straightforward. The reason it’s so overdiagnosed is twofold. One, because Lyme disease causes a huge array of symptoms, many of which are symptoms that any one of us could, you know, have probably experienced at some point in our lives, like fatigue, joint aches, and pains.
Just these kind of non-specific symptoms that are part of loads and loads of different medical problems, including psychiatric problems, but also physical problems and also aging. So these are super common symptoms, so that makes Lyme disease very available to overdiagnosis. If you go to your doctor tired and they can’t think of any other explanation.
Well, Lyme disease is one that can be provided if you are desperate for an explanation. That’s one reason I think it’s overdiagnosed. It’s in a world where people are suffering and want answers, it’s an answer. The other reason it’s overdiagnosed is because the tests are misused. Really. You know, as I’ve said before, tests need to be taken in a context.
The tests for Lyme disease have lots of reasons. You can have a positive test but not have Lyme disease. So if you spent your whole life, you grew up. Living beside a forest in Connecticut where there’s loads of Lyme disease, chances are that in childhood you’re exposed to Lyme disease and developed immunity.
And later in life, if you have a blood test, you can test positive for Lyme but not have Lyme disease. Or maybe if you’re sick in some other way, you’ll get a false positive on the test. So the tests are easily misinterpreted and you’ve got a disease that has symptoms that overlap with so many other things.
And you’ve got a society that needs explanations when they’re not feeling well, and if explanations aren’t readily available, then Lyme disease. Will account for quite a wide range of symptoms. Then you also have an element of corruption added in here. You know, if you have a diagnosis that is available to give to people who are desperate for an explanation and you work in as a private doctor in, in this area, then over diagnosing is very, very simple because of the uncertainties in the blood tests.
Brett McKay: Yeah, I thought it was interesting you talk about, there’s a surprisingly large number of people who have been diagnosed with Lyme disease in Australia, but Lyme disease, the bacteria that causes Lyme disease doesn’t exist in Australia.
Suzanne O’Sullivan: Yeah, I mean, this really speaks to the problem, so, you know, e exactly that.
I mean the, the type of the climate in Australia, the type of ticks that carry the bacteria that cause Lyme disease, they can’t survive in Australia because of the climate, and therefore nobody has ever found the bacteria in any ticks that. In Australia, and yet there’s something like a half a million people in Australia who believe they contracted Lyme disease in Australia, which is fundamentally impossible.
And yet people are getting these diagnosis. But you know, there’s similar. Very high misdiagnosis rates in the us. So a specialist Lyme disease clinic reviewed the diagnosis of a, a large thousands, I think it was 5,000 people who had a diagnosis of Lyme disease. Went to this specialist Lyme Disease Clinic, and they determined that 85% of the people who thought they had Lyme disease did not have Lyme disease.
So this is a diagnosis that is overused at an enormous rate. It’s estimated that about 60,000 people test positive in a, in a proper lab that is making the diagnosis correctly in the US 60,000 people per year. And yet something in the region of half a million people are being treated for Lyme disease.
So the number of people being overdiagnosis is very high. And I think that’s because it’s an available explanation for symptoms that people struggle to explain. And I think it’s also because there is a problem with people. Essentially giving out slightly over exuberant diagnosis for monetary reasons.
Brett McKay: What do you think is going on with these people who, you know, they get the diagnosis of Lyme disease, but maybe they don’t have it? Like they do the test and they don’t, there’s like, okay, you don’t, there’s no way you could have Lyme disease, but they’re obviously suffering. You know, they’ve got the fatigue, the joint pain, brain fog.
Similar thing happened with people after COVID and they’re like, I got, you know, this whole idea of long COVID, they’re obviously suffering. So what do you think’s going on?
Suzanne O’Sullivan: Yeah, I think, I mean, that’s a super important point to emphasize, which you just did, which is to say that someone has been misdiagnosed doesn’t mean they’re not suffering.
But yes, so there’s, at any one point in time, there’s a lot of people who are suffering with non-specific symptoms like headaches, difficulty sleeping, joint pains, tiredness, and those people will be given a diagnosis that sort of makes sense at a. Particular point in time, and as you said, during a COVID pandemic, if you have that collection of symptoms, you’ll be, could be told you have COVID or long COVID.
You know, if you live beside a forest filled with Lyme disease or in a period when Lyme disease is common, you be given Lyme diseases that diagnose for the exact same symptoms. What is going on with these people? Well, there’s a variety. People are probably just hard to diagnose. They have something that we have not yet fully understood, like an autoimmune condition that we don’t yet fully understand.
But I would suspect that the largest proportion of these people probably have what I would refer to as psychosomatic symptoms. So I’m a neurologist. This would be something I would see very often. So a lot of people in response to stresses or anxiety or difficult lives or unhealthy lives, develop non-specific symptoms.
So we’ve all had this experience. You know, if you’re stressed, you get a headache, or if you are. Just very tired or not looking after yourself, you’re more likely to pick up colds and flus, or you get aches and pains. So our bodies are very vulnerable to developing physical symptoms in response to psychological stressors, and very common symptoms in that context are things like tiredness and aches and pains.
I actually see people with much more extreme versions of this with seizures, paralysis, blindness, and so forth. I think a great, many of these people have psychosomatic symptoms, but we live in a society that. Looks down on psychosomatic symptoms. So you know, if somebody is very sick, if they’re bed bound because they feel so bad, they literally can’t get outta bed.
And you learn that the problem has a more of a psychological cause than a physical cause that’s looked down on, you know, we don’t have a lot of respect for that. And that pushes people into the need to find an explanation that society is more understanding of. And usually that’s a physical disease. So I think there’s a lot of people who have an array of physical symptoms that probably arise out of psychological distress, but which are diagnosed as a disease because that’s the culture we live in.
You know, psychological suffering is not respected to the same degree as physical disease.
Brett McKay: And you talk about once someone gets a di, like a medical, a biological. Diagnosis for what could be psychosomatic. It causes the nocebo effect where you start paying more attention to your body and thinking, oh, this is actually, this shows that I have this thing.
And it just sort of creates this vicious cycle downwards.
Suzanne O’Sullivan: Yeah, I mean, this is the problem with all the medical labels we’ve been talking about. This is the problem for the people with hypertension, the people with pre-diabetes, the people with cancer, et cetera, is that once you’re given a medical diagnosis, it, it can have, you know, it’s, everyone’s familiar with the placebo effect, which is if you given a tablet and you believe it will work, it can alleviate your symptoms.
The exact same happens in the opposite direction, referred to as the no sibu effect. So this is where you know, if you believe something will make you sick, it can make you sick. I always say to people, listen, there is examples of this in everyday life everywhere. You know, if you were about to sit down to your dinner in a restaurant and you turned around and you saw the chef.
Coughing into the food, which immediately changes your experience of your body following what you’ve just eaten. You know, um, if you eat something and then you suspect it was unhygienic after the fact, you can start feeling sick. This is the most normal thing in the world. So imagine now that somebody has told you that you have a disease and that it causes, you know, X number of symptoms.
You immediately kind of look at your body and beginning examining yourself for those symptoms. And I guarantee you, especially as you get older, your body is awash with things to be found. If you pay enough attention, you know that aching knee that you know, it only lasted a day. Normally you’d dismiss it, but you’ve just been told you have Lyme disease, so now you.
Place a lot of emphasis on that aching knee, whereas you might not have worried about it yesterday or you know, some little mole on your skin suddenly gets heightened in your perspective through anxious tension. This is the problem with medical labeling, is it reinforces not in everyone, but in a percentage of people, it can reinforce symptoms.
By turning anxious attention to your body and really worrying less about your health is sometimes the answer.
Brett McKay: There’s been an increase in mental health diagnoses in the past few decades. Are there actually rising rates of mental health issues or are we diagnosing people that maybe don’t need a diagnosis?
Suzanne O’Sullivan: Yeah, so it’s such a super hard question answer in the sense that it’s so hard to untangle. In in one sense, there does seem to be evidence that suggests that particularly in the group of adolescents to young adults, say age 16 to 24, there does appear to be more mental health issues in this group, for example, more than any other, and that means they’re more likely to go to the doctor with symptoms and also that they have more mental health symptoms.
But does that mean that there is more mental health illness in this group because that can be explained in so many ways. It could be that we’ve got all these awareness campaigns going now, often targeted at young people and awareness campaigns in schools that bring people’s attention to mental health problems.
So are they going to their doctor because they’ve been. Given express instruction to examine themselves for problems, and they’re finding things we wouldn’t have found before because we didn’t think that way. Are they more symptomatic because of the anxious attention that they’re paying to their moods, or are they genuinely more symptomatic?
So I think it’s really hard to untangle. To what degree is the fact that young people have more mental health problems there because we have created that through awareness campaigns, through telling people to worry about small changes in mood, or is it a real increase in mental health problems. But I think whatever.
Conclusion you come to on that you have to say that there is an over-diagnosis of conditions like ADHD, and autism. Now, again, I emphasize that when I talk about over-diagnosis, I’m not saying this person isn’t suffering and you should ignore them and tell them to snap out of it. That’s not my attitude.
I’m saying that. Adolescents sometimes have struggles, and by over-diagnosis, I mean medicalizing those struggles by referring to them through labels of ADHD and autism might be harmful to them. The reason I say there’s over-diagnosis is very hard to spot over-diagnose an individual. So let’s say you’ve got a 16-year-old and they’ve been told they have a DHD, and they’re validated by the diagnosis and they feel better.
Is that over-diagnosis or isn’t it? You can’t really tell. You can tell by looking at the population. So we’ve been making mental health diagnosis at escalating rates since the 1990s. We’ve been telling young people they have ADHD and autism at escalating rates since the 1990s. Now, the purpose of seeking out those young people and giving them those labels is that the problem should be recognized.
They should get support, and then they should be happier, healthier. Better adjusted adults, but what do we see downstream? We’ve got way more teenagers getting diagnosis of ADHD and autism, but we also have way more young adults who now have mental health problems like depression and anxiety, and that’s the very definition of over-diagnosis.
It’s not to say that original group who were told they had autism and ADHD didn’t have a problem at all. But it seems to me that framing the problem through these lenses of autism and ADHD has not resulted in healthier and happier adults, and we really need to rethink what we’re doing. You know, my real fear is that you take an adolescent and you tell them that their communication problems are.
Abnormal and due to a brain chemistry abnormality or that their sort of attentional difficulties are not because they’re a teenager and teenagers have attentional difficulties, but because they have a dopamine and abnormality in their brain, then you potentially make that problem so concrete that a child can’t overcome it.
Adolescence is a time of change. You should have the opportunity to mature out of your difficulties or to work on things, and I’m afraid that because we tend to make a diagnosis and then accommodate them, we’re not giving children the chance to make the changes that we all made.
Brett McKay: People get really touchy about this, particularly around ADHD and autism.
Uh, I know it can get very heated, the debates about it. Why do you think that is?
Suzanne O’Sullivan: Yeah, I think it’s mostly because people kind of understand this conversation to mean that. Their difficulties are being dismissed as irrelevant or they don’t have struggles, and that’s certainly not how I feel about it. I think that adolescents in particular is a real time of difficulty, but also people who are getting diagnosis in older age, I believe the difficulties are real.
But I don’t think medicalizing the difficulties with these labels is the right thing to do. So I wouldn’t wish in any way for anyone to feel that. I’m saying we should go back to the old days where everyone was told to snap out of it or you know, I was in school in the eighties, you know, nobody in my class of 120 was recognized as having a special learning need.
There must have been someone, you know, so we had an underdiagnosis problem. I’m not suggesting we should go back there, but I’m suggesting that we should think about how we are helping struggling people and ask if it’s the right kind of help, you know, is it really optimal? I still think we should. If someone has a problem, then they need to be able to voice it and then their problem needs to be acknowledged, but is then attaching a medical label, the right way to go about things.
And I know that it can make people feel validated and I don’t want to take that away from people. But I think that a diagnosis needs to come with something more than validation. It needs really to lead to something more positive. Unfortunately, when you’re validated by a diagnosis, it can just make the symptoms worse because in order to.
Remain validated and remain part of this new tribe that you belong to. Courtesy of your diagnosis, you have to continue to not be well. Getting well means you lose your tribe and you potentially lose your diagnosis. So how do you get well in those circumstances, I think we’re better to frame our difficulties in terms of, you know, what in my life can be changed to make me feel better.
Rather than framing them through internal chemistry.
Brett McKay: And in the case of ADHD, I mean, one of the things you do to treat it is, you know, prescribe Ritalin or Adderall, which, I mean, those are schedule one substances, like those can be highly addictive substances. And it’s like, well maybe you don’t need to get on that if you don’t need it.
Suzanne O’Sullivan: You know, it’s interesting how, how badly we learned from the past. You know, we had a whole benzodiazepine crisis in the eighties. You know, it seemed to be a drug that did amazing things for people, but then people got highly addicted to it. And then we had an opioid crisis, you know, for a while everyone thought opioids were the best thing ever, you know?
And look, look where that led us. We are not very good at learning from the difficulties of the past. You know, I’d be very loath to take a medication that is fundamentally a stimulant, which isn’t amphetamine-like drug unless I knew I had to take it. Now, that’s not to say that I don’t think there’s a role for medication.
There will always be people who have extreme disability. There always are hyperactive children who are so hyperactive. They really cannot. Engage in education and they may need something to help them through a difficult period. So I’m not a kind of, never say never, but this wide prescribing of stimulant drug seems really ill-advised to me.
Brett McKay: So what do you think the right balance is between diagnosing too much and not diagnosing enough? Like what do you want readers to take away from your book the next time they’re dealing with a health concern?
Suzanne O’Sullivan: Yeah, so I think what’s really important is first of all, you know that you have choices very often, and I think that’s something people don’t really realize.
Uh, most medical. Situations are not urgent. So we have occasional emergencies, but most things you go to your doctor with, you can get a test result and you can think about it. So I think that we should be creating a system of more slow medicine where you get test results back and then you consider all the variables.
Are you a high risk? Person, what else in your life might put you at risk of this particular disease so that you can decide whether you need to react urgently or whether you may be someone who doesn’t have to worry and can go down a more watchful waiting pathway? I think it’s very useful for people to understand the uncertainties in test results ’cause it, it might feel like the best thing in a certain circumstance to have that blood test or to have the scan. You know, a lot of neurologists wouldn’t have a brain scan as it happens, and I think it’s useful for people to know that, that sometimes the scan that you have to relieve your anxiety can actually cause more anxiety.
I really want people to just do a balancing exercise when it comes to diagnosis. Ask themselves before they get that. Mental health diagnosis or ADHD or autism diagnosis. If I get this diagnosis, what will I get? What will it bring me that is positive? And if I get this diagnosis, what are the potential negative impacts of that diagnosis?
And you really need to be sure that what you get is substantially greater than what you lose through a diagnosis.
Brett McKay: Well, Suzanne O’Sullivan, this has been a great conversation. Where can people go to learn more about the book and your work?
Suzanne O’Sullivan: Well, I hope everybody will buy the book, which is called The Age of Diagnosis, How Our Obsession With Medicine is Making Us Sicker.
You know, I feel like sometimes when I talk about this subject, people might think I’m an outlier doctor that you know, who is this doctor coming along and saying all of these kind of slightly scary things. But actually everything I’m talking about is widely discussed within medicine. We’re just not having a good enough public conversation yet.
Brett McKay: Well, Suzanne O’Sullivan, thanks. Your time has been a pleasure.
Suzanne O’Sullivan: Thank you for having me.
Brett McKay: My guest there is Dr. Suzanne O’Sullivan. She’s the author of the book, the Age of Diagnosis. It’s available on amazon.com at bookstores everywhere. Check out our show notes at AoM.is/diagnosis where you can find links to resources and we delve deeper into this topic.
Well that wraps up another edition of the AoM podcast. Make sure to check out our website at artofmanliness.com to find the podcast archives. And while you’re there, sign up for a newsletter. We have a daily and weekly option. They’re both free. It’s the best way to stay on top of what’s going on at AoM. And if you haven’t done so, I’d appreciate it if you take one minute to review the show on your podcast app or Spotify, it helps out a lot. And if you’ve done that already, thank you. Please consider sharing the show with a friend or family member if you think you’ve gotten something out of it. As always, thanks for the continuous support. Until next time this is Brett McKay. Put what you’ve heard into action.
This article was originally published on The Art of Manliness.