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Dr Rangan ChatterjeeDr Rangan Chatterjee

Doctor SPEAKS OUT: "They're Quietly Labeling You Sick—Even When You're Not" | Suzanne O'Sullivan

VIVOBAREFOOT is sponsoring today's show. To get 20% OFF YOUR FIRST ORDER visit: https://bit.ly/3FLdvBa AG1 is sponsoring today's show. To get 1 year's FREE VITAMIN D and 5 FREE TRAVEL PACKS visit: https://bit.ly/43FwxQl Order MAKE CHANGE THAT LASTS. US & Canada version https://amzn.to/3RyO3SL UK version US https://amzn.to/4iPjdjl Could our healthcare system be making us sicker rather than healthier? In the UK, autism diagnoses have increased by a staggering 787% between 1998 and 2018, and one in five people now has some form of mental health disorder. But what if some of our health struggles aren't diseases to be cured, but normal human experiences being medicalised? This week, I'm joined by Dr Suzanne O'Sullivan, a consultant in clinical neurophysiology and neurology at The National Hospital for Neurology and Neurosurgery, who specialises in the investigation of complex epilepsy and also has an active interest in psychogenic disorders. Her latest book, The Age of Diagnosis: Sickness, Health, and Why Medicine Has Gone Too Far, aims to challenge long-held assumptions about medical progress and change the way we think about our health. In this thought-provoking conversation, we explore: • Why giving someone a diagnosis is never neutral – it can fundamentally change how a person views themselves, their body and their future possibilities • How the definition of autism has dramatically expanded over the past few decades from its original concept of "extreme autistic aloneness" to now potentially including 1 in 20 children in Northern Ireland • Why screening for diseases like prostate cancer can lead to unnecessary treatment • The potential problems of genetic testing - when results are misinterpreted or used without proper context, especially with tests that aren't clinical grade • Why early detection and treatment aren't always better, particularly when it turns healthy people into patients decades before they might develop symptoms • The profound story of how Suzanne diagnosed a rare genetic condition in a 15-year-old girl, only to question whether she had actually done the right thing by medicalising someone who believed herself to be healthy This is a nuanced, compassionate discussion that challenges many of the widely held assumptions in modern healthcare and I would urge you to listen with an open mind. Throughout our conversation, Suzanne emphasises that she's not arguing against the existence of these conditions or suggesting everyone should refuse diagnosis. Rather, she encourages both patients and doctors to consider whether medicalising our struggles is always the right approach. I hope you enjoy listening. #feelbetterlivemore ----- Suzanne’s books: The Age of Diagnosis: Sickness, Health, and Why Modern Medicine Has Gone Too Far US https://amzn.to/4lZXesG UK https://amzn.to/434gAo7 It's All in Your Head: Stories from the Frontline of Psychosomatic Illness US https://amzn.to/433aqnY UK https://amzn.to/4m8WYIe The Sleeping Beauties: And Other Stories of Mystery Illness US https://amzn.to/4iPjdjl UK https://amzn.to/4k2LLH1 Brainstorm: Detective Stories From the World of Neurology US https://amzn.to/4iSu63L UK https://amzn.to/4m3J7mi #feelbetterlivemore #feelbetterlivemorepodcast ------- Order MAKE CHANGE THAT LASTS. US & Canada version https://amzn.to/3RyO3SL, UK version https://amzn.to/3Kt5rUK ----- Follow Dr Chatterjee at: Website: https://drchatterjee.com/ Facebook: https://www.facebook.com/drchatterjee Twitter: https://twitter.com/drchatterjeeuk Instagram: https://www.instagram.com/drchatterjee/ Newsletter: https://drchatterjee.com/subscription DISCLAIMER: The content in the podcast and on this webpage is not intended to constitute or be a substitute for professional medical advice, diagnosis, or treatment. Never disregard professional medical advice or delay in seeking it because of something you have heard on the podcast or on my website.

Dr. Rangan ChatterjeehostDr Suzanne O'Sullivanguest
May 7, 20251h 43mWatch on YouTube ↗

EVERY SPOKEN WORD

  1. 0:00 – 2:01

    Why diagnoses are exploding: from under-detection to over-correction

    1. RC

      You've been seeing patients for over three decades now, and in your brand-new book, you're making the case that medicine may have gone too far. We may be over-diagnosing people, but also potentially turning basic human struggles and differences into disease.

    2. SO

      Mm.

    3. RC

      What's going on?

    4. SO

      Yeah, so, you know, I think we've had a problem in the past perhaps with kind of under-diagnosis and neglect. So if you say, think about special learning problems like autism or ADHD, I mean, I was a, a school student in the '70s and '80s. Nobody was recognized as having special educational needs then. In my class of 120, there must have been people. So we've kind of, we've neglected young people who perhaps could have done better with, um, a bit of support. Maybe people with mental health problems were afraid to come forward. Also, people were going through doctors with too late with diseases like diabetes and things. So we realized we had a bit of a problem that we needed to correct, and we've been gradually trying to correct that. My fear is that as we have sought out more and more patients with these sorts of conditions, that we might have over-corrected now. We may be detecting and treating people that we don't really need to treat.

    5. RC

      Yeah. I mean, I guess there's all kinds of conditions, aren't there, that are rapidly on the rise?

    6. SO

      Mm.

    7. RC

      I mean, I think at the moment, is it one in five people in the UK have some sort of mental health disorder?

    8. SO

      Yeah.

    9. RC

      I mean, that's a lot of people, right?

    10. SO

      It's an absolutely astonishing statistic, and you have to really start asking, "Well, what's going wrong?" Because if it's true to say that one in five people has a mental health problem, then, you know, potentially something is going extremely wrong in the world. My question, however, is, are we sadder, or are we attributing more to mental health disorders? And I think that's the key question, is, um, are we actually becoming more unhappy, or are we medicalizing what would usu- we would in the past have called ordinary unhappiness? And

  2. 2:01 – 3:28

    What overdiagnosis actually means—and why a “correct” label can still harm

    1. SO

      that, and that's kind of my focus of, of The Age of Diagnosis, is to think about what I call over-diagnosis, and I wanna kinda clear up what that is at the very start.

    2. RC

      Yeah.

    3. SO

      Because I think it's sort of, you know, people hear politicians talk about over-diagnosis, and they immediately jump to this conclusion, "Oh, you're saying that there's nothing wrong with us. We've been diagnosed, but it's wrong, and we're fine." That is not what over-diagnosis is. Over-diagnosis means that somebody could potentially have, um, significant struggles, but the question is whether medicalizing those struggles is the correct thing to do. And I guess I'm worried now that this one in five people who are said to have mental health problems are having genuine struggles medicalised when perhaps maybe social change or some different sort of support would, would help them more than a medical label.

    4. RC

      It's interesting. A- as I read through your book, I think, "Wow, this is so well-written." Um, there's a deep compassion behind your words, but you're actually trying to raise awareness of something-

    5. SO

      Mm

    6. RC

      ... that is critically, critically important.

    7. SO

      Mm.

    8. RC

      And as you say, you're not saying that, you know, y- you're not saying that certain conditions don't exist. You're absolutely not saying that. And one of the, one of the key questions you, you ask is, is the diagnosis helping you? Not is the diagnosis-

    9. SO

      Yeah

    10. RC

      ... right. Is the diagnosis helping you? Why might a diagnosis not help us?

  3. 3:28 – 8:28

    Case study: a rare genetic diagnosis that turned a healthy teenager into a patient

    1. SO

      So when I write a book, I'm writing it for my patients, you know, in a sense. I don't know if any of them read it, but I'm writing it to address things that happen in my clinical practice that I'm not comfortable with. So I start this book with a story of two people, a patient of mine, um, who I'm calling Stephanie, and her daughter, Abigail. So Stephanie was a lady who I've been looking after with epilepsy for nearly two decades now. Um, she came to me with unexplained seizures. We discovered she had epilepsy. I'd been treating her for many years, and I, I haven't been making her much better. Seizures aren't responding to treatment. But in the course of these couple of decades, I discovered that she also had a progressive difficulty with walking. Now, I couldn't find out why she had epilepsy. I couldn't find out why she had difficulty walking. And then one day, her husband made a chance remark that kind of made it all so much more clear. He said that their 15-year-old daughter, Abigail, who was not a patient of mine or of anyone's, ha- was teased in school for having a funny walk, and he said that she walked exactly like Stephanie. Now, I mean, you're a doctor. You know that's the, one of those moments where you think, "Oh, my God," you know, "there is the clue that I have been waiting for that will tell me, um, what might be wrong with Stephanie." So it immediately sent them for, to a genetics clinic, both Stephanie and Abigail, Abigail at the time was only 15, um, to investigate the possibility they had a genetic condition. It took a while to get there, but that is what they had. Now, this is sort of really an issue which, the... First of all, that's a diagnosis that in a sense, as a doctor, I could be celebrated for. You know, I had found a rare diagnosis that was hard to find. I had done for Abigail what people kind of are telling me I should do, which is predict diagnosis ahead of time so people are empowered, um, anticipate future health conditions so they can be addressed as soon as symptoms start. You know, it, it should, in a way, be a success story for my practice as a doctor, but I actually came away from that experience feeling incredibly guilty, um, and just thinking, "What, what did I do?" Because if I looked at it another way, you know, I'd taken a 15-year-old girl who was, um, you know, she, she had some gait problems, some walking problem, but it was so subtle, she didn't, it didn't bother her. She was good at yoga, and she wasn't good at running. That suited her fine.

    2. RC

      Mm.

    3. SO

      And I pretty much said to her, "I think you have a potentially neurodegenerative problem. Now I'm gonna send you for tests." I turned a girl who believed she was healthy into a patient. And I, this for me in this book is the really important... point about overdiagnosis is overdiagnosis doesn't mean the diagnosis was wrong. I had found something wrong with Abigail, but h- what favor had I done her really? You know, she could have quite happily waited another 10 to 15 years f- for her life to be medicalised. You know, it could be that, um, I could have changed the whole course of her life by telling her that she had this problem. You know, I could have made her feel that her body wasn't healthy or wasn't normal. I could have f- forced her to worry about the walking that she wasn't worried about. And I think this is really the whole point about diagnosis is diagnosis should come along to solve a problem, and it should lead somewhere. But if we're increasingly giving healthy people diagnoses to anticipate futures that might never happen or kind of burdening people with diagnoses 10 years before it's necessary, then are we really doing the right thing for those people?

    4. RC

      Yeah. You brought up so many interesting points there, that you would be celebrated and are celebrated as a doctor for making that diagnosis.

    5. SO

      Mm.

    6. RC

      And I was thinking about this this morning. You know, I was reflecting on your book, and, and a lot of the concepts in it are kind of things that I've intuitively felt in medicine since I've practiced actually.

    7. SO

      Mm.

    8. RC

      I've always struggled with giving people labels.

    9. SO

      Mm-hmm.

    10. RC

      Like, I always have. I can see it so clearly now. It always felt wrong or, can I say, limiting to me-

    11. SO

      Mm

    12. RC

      ... to do that. Um, and I've got plenty examples that I'll perhaps share with you.

    13. SO

      Mm.

    14. RC

      But I thought about our medical school training. Everything about us as doctors from the-

    15. SO

      Mm

    16. RC

      ... minute we walk into medical school is about making the diagnosis.

    17. SO

      Mm.

    18. RC

      Right? And I kind of feel that perhaps in a different era where what was coming into to, to medical doctors was, I guess, largely acute problems which responded well to, you know, "Oh, you've got pneumonia. Here's a, a, a pill. You take this three times a day for a week, and, you know, then your pneumonia's gone," perhaps that worked. But in a lot of the conditions that we're now starting to diagnose, mental health problems being one of them-

    19. SO

      Mm

    20. RC

      ... there is no clean, quick fix. So there may be an unintended consequence-

    21. SO

      Mm

    22. RC

      ... of making that diagnosis. Does that make sense?

  4. 8:28 – 11:22

    Diagnosis is not neutral: the nocebo effect and learning to “see blood”

    1. SO

      Absolute sense. I mean, clearly we recognize when diagnosis is useful. You know, if you, if you get a diagnosis that leads to a treatment, that leads to a cure, that leads to recovery or, you know, if we need to be able to direct people into pathways, then labels and diagnoses are useful and essential. But a diagnosis is not inert. It's not just something that comes with positives or neu- is neutral. It comes with negatives. And actually, Abigail, the 15-year-old I was talking about, said something really... You know, I, I met with her years later after I gave her that diagnosis, and-

    2. RC

      What, what was the diagnosis?

    3. SO

      So she was d- She had a very rare genetic mutation that is associated with a gradual, um, neurological decline. So only, like, about five people in the world have ever had this mutation.

    4. RC

      Wow.

    5. SO

      So, you know, that's as rare as it gets.

    6. RC

      Yeah.

    7. SO

      And you can imagine therefore that, you know, that, a diagnosis like that doesn't bring you an awful lot 'cause you don't have a whole community of people who you can bond with over your diagnosis. You don't know where it's going. There's no treatment. But I, I spoke to Abigail years later and kind of, you know, really just to kind of say... When I was writing The Age of Diagnosis, I wanted to know... I felt guilty, and I wanted to know if she felt any, any negative way about what had happened to her. Um, and she said something really interesting. She said... She was a, a primary teacher then, and she said, you know, that she understood exactly what my concern was because she l- was used to seeing kids in the schoolyard falling, and if they fell down and they looked at their bodies and they saw blood, you know, they'd burst out crying and they'd, um, become very distressed. But if they fell down and they couldn't see any problem, they just got up and went running again. And that was... It beautifully encapsulated my concern.

    8. RC

      Mm.

    9. SO

      It was almost like I'd pointed at Abigail's body and said, you know, "I see blood," and that, you know, I was drawing her attention to things about her body that were not normal and, and how badly that could have gone. So that's how a diagnosis changes a person's relationship with their body. Um, you begin... You know, if someone tells you you've got, you know, asthma or diabetes, you begin noticing little things that go along with that diagnosis. So symptoms can be really reinforced by your knowledge of that disorder and the attention that you pay. I mean, I got lucky with Abigail. I mean, she was a resilient, happy, lighthearted person, and it didn't really change the course of her life. But I didn't know that when I just kind of automatically sent her to a genetics clinic with the kind of idea in my head that I d- was doing her a favor.

    10. RC

      Let, let's contrast that with the family towards the start of your book with Huntington's.

    11. SO

      Mm.

    12. RC

      Right? 'Cause that was very, very powerful. So if you could just go through that.

    13. SO

      Yeah.

    14. RC

      Because I think it, it touches on so many different points, including this idea that getting medicine involved, testing early, predicting stuff, we think is always good.

    15. SO

      Yeah.

    16. RC

      But I think this kind of turns it on its head a little bit.

  5. 11:22 – 19:10

    Huntington’s without the gene: how fear can mimic disease

    1. SO

      Yeah. So I mean, I, I... Yeah, I started the book with the story about Valentina and Huntington's disease, which I know is not a, a disease that will touch a lot of people's lives. For those who don't know, it's a neurodegenerative condition, very unpleasant to have and to see in a loved one. It causes psychiatric symptoms, cognitive decline, and eventually a physical decline. You know, over several years, a person will end up in a position where they can't swallow, they can't speak, they can't walk, uh, and there's no cure or treatment. It's also a genetic condition. If your parent has it, you have a 50/50 chance of being affected. So Valentina, she's in her 40s now, but when she was 28, she was pregnant with her first child, and she discovered her mum had Huntington's disease. I mean, you can imagine the devastation because that discovery immediately meant that Valentina went from being a perfectly healthy young person-To having a 50/50 chance of having a neurodegenerative disease. And her, her unborn child went from being absolutely perfect to having a 25% chance. So it was devastating news for her to get.

    2. RC

      So this is not even her being diagnosed. This is her mother-

    3. SO

      Her mother

    4. RC

      ... being diagnosed.

    5. SO

      Yeah.

    6. RC

      Automatically changes her perception of herself-

    7. SO

      Yeah

    8. RC

      ... her life, and her child.

    9. SO

      Yeah. It just completely changed her personality and her wellbeing overnight. And sh- there is a, a genetic test that, um, can be done for Huntington's disease, and it might seem a, a little counterintuitive to people, but, um, she decided not to have it. That's a really common choice for people in, in her position, um, because people understand that if you go and have the test and it's positive, well, that will change your life forever. So most people with Huntington's dise- risk of Huntington's disease don't have the test because they wanna believe that it can be negative. A, a, a life lived with the hope that the test will be negative is more productive than a life lived with a positive test. So Valentina didn't have the test. She, sh- essentially she decided, "Listen, I'm having my first baby. I want to enjoy being a mother to this child." Um, and then she went on and had a second baby, and she did enjoy her life going forward. But she, she would say that, you know, her whole personality had changed. She went from being a really happy person to being a person with constant kind of anxiety. She said at the happiest times, she had like a specter of Huntington's disease was always sort of hanging over her. And then it got worse because then she started noticing she had the symptoms. So she'd seen what happened to her mother, and she began noticing she had the same symptoms. Her personality was changing. She was angering easily. She was tripping over things, her coordination goes. She was bumping into things. If she went to an airport, she couldn't multitask. She just got flustered. And this was sort of progressing as the years passed.

    10. RC

      Mm-hmm.

    11. SO

      And she kept putting off testing because she wanted to bring up her children without the worry of the, um, positive diagnosis.

    12. RC

      Even though she was worried.

    13. SO

      She was s- so worried, but she realized you've got to understand the implications for the family. Let's say she goes and gets the test and it confirms her worst fears, then suddenly her 14-year-old child has gone from having a 25% chance of having Huntington's to a 50% chance.

    14. RC

      Yeah.

    15. SO

      So it, you know, it changes the whole family for her to get that positive test. Um, and basically it would also... The geneticist advised her, you know, "If you get that positive test, you will begin seeing your whole life through the lens of, of impending Huntington's." So with collaboration with her genetic counselor, she put off the test until she got to a point where she felt so symptomatic she just thought, you know, at this point now, you're nearly 20 years later, her kids are 18, 19 years old, and she finally said, "Things are so bad now, I just have to bite the bullet and admit this to myself." And she went and had the genetic test. It was during COVID. Um, and she turned up at the hospital and for the result, and she watched the geneticist come down the corridor with a mask on, her desperately trying to read h- the, the expression on her face, and couldn't because of the mask. And then they went into the clinic room, and the geneticist... I almost never tell this bit of the story [laughs] without crying 'cause it's so sad. It's basically sh- the geneticist pulled down the mask, and the test was negative. She didn't have Huntington's disease. [laughs] Basically, she had... And this is really the point of telling this whole story at the very beginning of a book about-

    16. RC

      Yeah

    17. SO

      ... common dis- a rare disease about common diseases, is to point out that the way that you, um, if you believe that you have a disease, this is like the labeling or nocebo effect. If you have belief that you have a disease, then what will happen is you'll start searching your body for evidence of that disease.

    18. RC

      Yeah.

    19. SO

      And because our bodies are not perfect, and because, you know, we always... Everyone feels tired sometimes. Everyone gets flustered sometimes. Every-

    20. RC

      Everyone-

    21. SO

      Yeah

    22. RC

      ... gets flustered at the airport sometimes. [laughs]

    23. SO

      Exactly. And what, what happened to her when she went to the airport, I mean, I'm the most flustered at the airport, I have to say. [laughs] You know, what, what would happen to her at the airport is because she thought she had Huntington's disease, that flustering would just get spiral out of control.

    24. RC

      'Cause it's confirma- oh my, I'm gonna-

    25. SO

      Yeah

    26. RC

      ... end up like my mom. I'm like-

    27. SO

      Yeah

    28. RC

      ... you know, you know, I have, I need to do the test, but I don't wanna do the test.

    29. SO

      Yeah.

    30. RC

      But of course this is Huntington's.

  6. 19:10 – 21:57

    Words, scans, and incidental findings: when ‘degeneration’ becomes destiny

    1. RC

      You know? And I'll tell you, you know, it's interesting, I've always had this slight aversion to labels-

    2. SO

      Mm

    3. RC

      ... as a doctor, which is hard because the whole medical system wants you to label people.

    4. SO

      Yeah.

    5. RC

      Um, but I remember, I've told this story, I think maybe a few months ago on this podcast, but it's to do with when I was suffering with backache.

    6. SO

      Mm.

    7. RC

      Severe backache in my 20s, and in essence, I'd tried all kinds of things.

    8. SO

      Mm.

    9. RC

      People would say, "Oh, you know, you're, you're almost 6'7".

    10. SO

      Mm.

    11. RC

      You know, you're gonna have backache." I thought, kind of doesn't make sense to me. Why would that mean I'm going to have backache?

    12. SO

      [laughs]

    13. RC

      And I saw a spinal surgeon-

    14. SO

      Mm

    15. RC

      ... um, probably back in 2003, something like that.

    16. SO

      Mm.

    17. RC

      And I remember w- we went through the results, and he said, "Look, yeah, you do have a disc prolapse at-

    18. SO

      Mm

    19. RC

      ... I can't remember where, I think L4, L5.

    20. SO

      Mm.

    21. RC

      But he said, "Rangan, the interesting thing is, at your age, I could go out to the street and pull 100 people-

    22. SO

      Mm

    23. RC

      ... off the street with pain or without pain, and-

    24. SO

      Mm

    25. RC

      ... it was something like 30 or 40% are gonna have the same scan-

    26. SO

      Yeah

    27. RC

      ... as you."

    28. SO

      Yeah, yeah.

    29. RC

      We've spoken about chronic pain a few times on this podcast, and I've-

    30. SO

      Mm

  7. 21:57 – 24:21

    What good medicine looks like: slow care, listening, and choosing tests wisely

    1. RC

      What is good medicine?

    2. SO

      Well, I think good medicine is, you know, if you go to a doctor, and you're always concern- you're concerned about a headache, and you want a scan, and they just do a scan, that, for me, isn't good medicine. You know, because the vast majority of headaches aren't due to things like tumors. A good medicine looks like your doctor listens to you, um, doesn't do a test every time they see you. They'll see you a few times. They'll spend time with you. It's, it's slow medicine, which I know, you know, doesn't work fantastic in the NHS we have at the moment. But, you know, medicine that, um, where you have a symptom and you respond with a test is, is not the best type of medicine. Medicine where someone listens to you, examines you, sees you a second time, gives you time, and only does tests in those occasional circumstances is what good medicine looks like. Uh, I don't know if you're familiar with Choosing Wisely. There's a lot of-

    3. RC

      Yeah

    4. SO

      ... kinda overdiagnosis, um, concern in the world, not, not just, um, um... It is not only my concern. So Choosing Wisely, um, i- is a campaign for kind of advising doctors to be a bit more kind of, um, mindful about how they perform investigations. And they did a survey of doctors who said that 72% of them or something said that they thought unnecessary investigations were a big problem. But then when they were asked if they did unnecessary investigations, kind of 72% also said that they did them regularly. [laughs] So I think, as doctors, we're in quite a tricky place.

    5. RC

      I- it's hard, isn't it? Because that, you know... O- one of the things you said about what good medicine is, is-

    6. SO

      Mm

    7. RC

      ... not always ordering a test when your patient-

    8. SO

      Yeah

    9. RC

      ... wants it, which presents its own challenges, right? Because you may call that good medicine-

    10. SO

      Yeah

    11. RC

      ... but that patient may not feel as though they were-

    12. SO

      Yeah

    13. RC

      ... delivered good medicine. And I have, I've always felt that growing up and being trained as an NHS doctor helps you here in some regard versus private healthcare systems where you can order... It, it's... People are a lot more liberal with what they order.

    14. SO

      Mm.

    15. RC

      Because what I learned very early on as a GP is, if I couldn't order a test for whatever reason, but you were... You know, you made sure someone felt listened to-

    16. SO

      Mm

    17. RC

      ... seen, validated-

    18. SO

      Mm

    19. RC

      ... that, you know, you were really compassionate with them, and you say, "Well, listen, um, why don't we see you again in a few weeks? But, you know, this all sounds... I can see why this-

    20. SO

      Mm

    21. RC

      ... is causing you so many struggles," and-

    22. SO

      Mm-hmm

    23. RC

      ... you know, a lot of things-

    24. SO

      Yeah

    25. RC

      ... kind of get better by themselves.

  8. 24:21 – 31:13

    The missing safety net: how society pushes struggles into the medical system

    1. SO

      I definitely feel that way. I think part of the problem may be that sort of our type of society, like, kind of-Um, developed countries and wealthy nations and so forth, is that we've lost other supportive-

    2. RC

      Yeah

    3. SO

      ... systems. So where does a person go when they are struggling? There's not a lot of places to turn, and also we're very an ind- individualistic society. We don't live with our families.

    4. RC

      Yeah.

    5. SO

      I'm not personally a religious person, but that's, you know, less of a prominent kind of support system in society now. But there is a place you can always go, and that's to your doctor. But to go to your doctor, you have to medicalize your problem, and they have to medicalize your problem. It's a kind of collusion between us.

    6. RC

      Yeah, because you don't realize, but-

    7. SO

      Mm

    8. RC

      ... by going to your doctor, you know, the lens through which most doctors will see things because of our training is through the lens of diagnosis and medicalization.

    9. SO

      Mm. Yeah.

    10. RC

      So actually, that's what you'll probably [laughs] get there-

    11. SO

      Yeah

    12. RC

      ... unless you're very careful.

    13. SO

      Yeah.

    14. RC

      Um-

    15. SO

      And the system works through labels and, you know, if you, if you need to go to the next step, your doctor wants to get you support, they almost have to give you a label so that the next layer-

    16. RC

      Yeah

    17. SO

      ... of support will accept you. The system depends on it.

    18. RC

      There, there-

    19. SO

      It'd be lovely if it didn't

    20. RC

      ... there's two cases that are always come to mind when I think about this. One was in my first week in general practice. So I'd moved... I'd, I was doing specialism. I was in-

    21. SO

      Mm-hmm

    22. RC

      ... neurology, and I, as I mentioned to you in my kitchen just now-

    23. SO

      Mm

    24. RC

      ... I, I, I've always wanted to see everything.

    25. SO

      Mm.

    26. RC

      Like, I've always felt I want to see all symptoms and how the whole body is connected.

    27. SO

      Mm.

    28. RC

      And I moved to general practice, and I remember the first week, a lady came in, young lady-

    29. SO

      Mm

    30. RC

      ... um, really struggling with her moods.

  9. 31:13 – 33:42

    Hyper-specialization and ‘diagnosis stacking’: no one sees the whole patient

    1. RC

      um, I think in the conclusion about some of the problems within medicine that lend itself to over-diagnosis.

    2. SO

      Mm.

    3. RC

      And one of the things you talk about there is the downsides of hyper-specialization-

    4. SO

      Mm

    5. RC

      ... and how we do need to-

    6. SO

      Yeah

    7. RC

      ... value, again, the role of the generalist.

    8. SO

      Yeah, yeah.

    9. RC

      And this is, you know, one of the reasons I moved from specialist into... I, I consider myself an expert generalist.

    10. SO

      Yeah.

    11. RC

      I love being a generalist and trying to-

    12. SO

      Mm

    13. RC

      ... put it all together.

    14. SO

      Yeah. I mean, I feel really strongly about this. I qualified in medicine in 1991, and so I was kind of on that moment when everyone was suddenly getting more and more specialist. All of the, the people I learned from, you know, they were neurologists, but they also did general medicine, you know? But now neurologists don't only not do general medicine, they only do, like, the brain, but not just, you know, one does the brain, one does muscles. But you don't even just do the brain and muscles. You only do one disease of the brain. We're so specialized, and that's... And that has, I think, really affected our ability to see people as whole people.

    15. RC

      Yeah.

    16. SO

      Um, and one of the real difficulties that I have when, you know... An- another kind of trigger for writing this book was, um, that I keep seeing these super young people, like people in their 20s, who maybe have six or seven different diagnoses, and sometimes I think they've been given different diagnoses to explain the same symptom.

    17. RC

      Yeah.

    18. SO

      And I, I worry about it. I don't see them getting better, but if I try to say to somebody, "You know, uh, maybe this diagnosis, this other diagnosis made by this other specialist is worth reviewing. Maybe it's not correct," oh, people don't, you know... I sh- I need to stay in my lane is what I sometimes feel. Like, I'm not allowed, and I'm not allowed address multiple different diagnoses, just what, what I've been asked to look at. And that's a problem then, because nobody's looking at the patient as a whole patient.

    19. RC

      Yeah.

    20. SO

      We really need... And not just GPs, but we need hospital generalists who are overseeing, how many tablets is this person on? You know, do they need every one of those? 'Cause, um, you- you've had this experience, I'm sure, where people have, are on tablets for the side effects of the tablet and then another tablet-

    21. RC

      Oh, yeah

    22. SO

      ... to address the side effects of the other tablet.

    23. RC

      Well, once you step back from this-

    24. SO

      Mm

    25. RC

      ... and look at it with a bit of detachment-

    26. SO

      Yeah

    27. RC

      ... you're like, what are we doing in medicine?

    28. SO

      Mm-hmm.

    29. RC

      Right? I think it's okay to say modern medicine is really good at certain things.

    30. SO

      Mm.

  10. 33:42 – 1:07:00

    Primary prevention’s hidden costs: borderline hypertension, pre-diabetes, and fear

    1. SO

      Yeah, I think we really... So I often think that we're working with really great assumptions. So I think this kind of over-diagnosis crisis has arisen out of a, certain assumptions. Like, we assume that if we detect as many people as possible with kind of milder or borderline diseases or mental health problems, that we'll be helping more people. Um, so for example, you know, the, uh, the cutoff point for blood pressure has been coming lower and lower and lower, so that now anyone with a blood pressure over 130/80, which used to be completely normal, could potentially be considered hypertensive, and we think that we are helping more people that way. And it kind of seems to make sense. Well, what can be the harm in telling, in advising people they've got a borderline problem and hoping that that's, prevents strokes, for example? You will prevent strokes, but for every stroke that you prevent, you will potentially medicalise the, the lives of actually hundreds of other people.

    2. RC

      Th- this, this, this played out, right, literally February half term.

    3. SO

      Mm.

    4. RC

      As I was driving, there was an elderly lady-

    5. SO

      Mm-hmm

    6. RC

      ... who literally just fell backwards, and y- she didn't even break her fall.

    7. SO

      Mm.

    8. RC

      She just fell down.

    9. SO

      Wow.

    10. RC

      So I obviously immediately stopped the car-

    11. SO

      Yeah

    12. RC

      ... went out to try and help and, you know, helped to get her settled, checked her injuries. This is literally about five weeks ago now.

    13. SO

      Mm-hmm.

    14. RC

      And as she came round, I started to chat to her.

    15. SO

      Mm.

    16. RC

      And it was really interesting. She was put on blood pressure lowering medication-

    17. SO

      Right

    18. RC

      ... about six months ago. She said-

    19. SO

      Mm

    20. RC

      ... "I don't know why the doctor put me on this. I don't want it. I don't feel good on it, but they said it's gonna help me not have a stroke in the future."

    21. SO

      Mm.

    22. RC

      Now, to be clear, I don't know the whole ins and outs of her story.

    23. SO

      Yeah, yeah.

    24. RC

      So I ain't... I'm not criticizing anyone.

    25. SO

      Yeah.

    26. RC

      But what was really interesting to me, and this is what medicine does, right? We think we're helping.

    27. SO

      Mm-hmm. Mm-hmm.

    28. RC

      Because the, the, the goal is with, we're saying, "Oh, you may get a stroke in the future."

    29. SO

      Mm.

    30. RC

      "So therefore, if I can catch that increased blood pressure now-

  11. 1:07:00 – 1:11:33

    Cancer screening and over-treatment: detecting cells we can’t interpret

    1. RC

      Let's go back to cancer screening.

    2. SO

      Mm.

    3. RC

      Because I think there's a general view-

    4. SO

      Mm

    5. RC

      ... that more screening is better.

    6. SO

      Yeah.

    7. RC

      I certainly think with the general public, then there would be a view that, yes, I, I wanna get screened 'cause I wanna catch it early.

    8. SO

      Mm. Mm.

    9. RC

      And you go through, and you mentioned some of it already in this conversation-

    10. SO

      Mm

    11. RC

      ... but you go through some of the data, and I guess prostate, for example.

    12. SO

      Yeah.

    13. RC

      It's kind of super interesting. It's, it's everything... I guess the overarching principle is that, and I think this is frankly a principle for anything in life, right, [laughs] goes beyond medicine-

    14. SO

      Mm

    15. RC

      ... which is that there is a consequence to everything. Nothing is neutral.

    16. SO

      Yeah.

    17. RC

      There's an upside, and there's a downside.

    18. SO

      Mm.

    19. RC

      And are you paying attention to both of them? So what is the potential downside of an-

    20. SO

      Yeah

    21. RC

      ... increase in cancer screening?

    22. SO

      I mean, if we think about prostate screening, 'cause it's very topical now, you know, we- there are a lot of sign, signs up saying, you know, think about going to your GP for screening, but there's no national screening program for prostate cancer, and that- there's a reason for that. And the reason is that if you screen 1,000 men for prostate cancer using PSA, the blood test, uh, you will save no lives, and you will potentially treat at least 10 men for cancer who didn't need to be treated. Now, this'll kind of blow some people's minds, but I mean, it shouldn't, because medicine has known this for years.

    23. RC

      Yeah.

    24. SO

      That's one of the things that upsets me a little bit is, you know, if you read the British Medical Journal, you'll see doctors debating these things for years, but it's not filtering through. We all have little clusters of, not we all, but a large percentage of us have clusters of abnormal cells in our body. We know this now because we finally have MRI scans and mammography, and you know, we didn't have the means to find these things before. We now have the means, and that means when we s- begin screening people, we're finding cells that were probably there in many previous generations, didn't cause health problems. We can find them now, but what we can't do is distinguish the abnormal cells that will grow into something frightening and life-threatening from the abnormal cell that will never change at all. And I kind of, I definitely don't wanna scare people off screening, but I do want people to know this, so if you go for a screening test and they find some abnormal cells, be aware that not every abnormal cell will grow into something important so that you are empowered to discuss with your doctor, you know, do I need to panic over this?

    25. RC

      Yeah. A- and you're saying, like, be empowered, but it's w- let's say, I don't know, in prostate-

    26. SO

      Mm

    27. RC

      ... screening, for example, and I know there isn't-

    28. SO

      Mm

    29. RC

      ... this national program.

    30. SO

      Mm.

  12. 1:11:33 – 1:27:06

    Genetic testing and AI: powerful tools, weak interpretation, family-wide consequences

    1. RC

      Um, anything you wanna share about that?

    2. SO

      Yeah. I mean, the, again, this is, you know, this is the kind of story about science and how, you know, if we learn how to do something and it's really clever, we want to, and we know we can help a group of people with this clever thing, then we'll help a group of people, and then we'll think, oh, you know, I wonder, can we help more people if we do-

    3. RC

      Yeah

    4. SO

      ... more of this? So the BRCA gene, as people will be f- familiar probably with it, is it, it increases the risk of certain cancers, particularly breast cancer, ovarian cancer, fallopian tube cancer. Um, it's if you have a family history of cancer, so your mother, your grandmother, f- or anyone in your family has had cancer at a very young age and you test positive for this gene, you can have a very elevated risk of cancer, which could mean that, um, some people will choose to have prophylactic surgery. So I'm, I'm sure everyone has read the story of Angelina Jolie, who had a mastectomy and, um, hysterectomy and oophorectomy, um, her ovaries removed as well. So you can... This is an option that you can take if you learn you have this gene. Now, it's, that's pretty dramatic stuff, and not, you know, this is big surgery, and not everyone who has that gene will get the cancer. But a lot of people will choose to have the surgery because, again, little bit like the Huntington's disease story, they've seen this horrible disease in their family. They saw their mom get sick.

    5. RC

      Yeah.

    6. SO

      Um, and therefore they, they think, well, I don't want that to happen to me. They've had family members die. But this is the bit of the story that, reason I included the BRCA gene in this book is because-It is likely that women who've had this drastic surgery, I don't know for sure, but it's likely that some of these women, um, s- lives were saved, um, and that some probably had surgery that wasn't absolutely necessary, but a bigger number's life were saved. But what we're doing now is scientists are saying, "Hey, what if we test for this BRCA gene in other groups of people?" So all of the science of the BRCA gene has been done in people who have a family history of cancer. So it's a, it's like a statistical model. It's like if you have two family members and this gene, you've got an 87% chance of cancer. If you've got three family hist- family members with cancer-

    7. RC

      Yeah

    8. SO

      ... and this gene, you have an 80% chance. Um, but now we've decided we want to extend this testing to bigger groups, and it's a real medical thing, you know. Hey, we've got this fancy thing we can do. We can do it really quickly. Let's do it in more people and see what happens. We have no statistics for what this gene means to a person who doesn't have a family history of cancer. So to understand your risk of cancer if you have one of these genes, you factor in multiple things, that you've got a family history, what types of cancers-

    9. RC

      Yeah

    10. SO

      ... how many in the family. Um, but when you apply this exact same medical test to a group of people who have no family history of cancer, you've no statistics for that. Um, but we are already at the point of potentially offering surgery to people in that position as if we knew what this cancer gene meant to them.

    11. RC

      But there's also a culture, isn't there, about doing, right?

    12. SO

      Mm.

    13. RC

      So we, we, uh, this, not just related to this, but, but I guess everything we've spoken about so far and, and most of the things you write about-

    14. SO

      Mm

    15. RC

      ... in your book, there is, there is this expectation that when you go and see a doctor, the patient expects it, and the doctor expects it of themselves that-

    16. SO

      Mm-hmm

    17. RC

      ... something is going to be done.

    18. SO

      Mm.

    19. RC

      A label is probably going to be applied, and some form of treatment-

    20. SO

      Mm

    21. RC

      ... in some form will be given. I think that is a, maybe an unwritten expectation-

    22. SO

      Mm

    23. RC

      ... that we might have of ourselves as well as doctors.

    24. SO

      I... Yes, you're right, and I, I think sometimes for a patient, the satisfying consultation, and, and it's, can be satisfying for the doctor too, is where something is done and a label is given. You know, just reassuring someone isn't always feel as satisfying. But I think the bigger problem is that we are associating, um, high tech with better medicine and-

    25. RC

      Yeah

    26. SO

      ... modern tests with better medicine. Essentially, medical diagnosis is a clinical skill, as you know.

    27. RC

      Yeah.

    28. SO

      Like, you would never give a doctor, you know, a neurologist a hundred brain scans and then maybe a, a cursory history like, you know, this lady has headache, this man has, and then say, "Give me a diagnosis." You just wouldn't do it. You, you make a diagnosis by listening to the story, understanding the nuance of the story, and then the tests are like a kind of a supplementary thing that help you to-

    29. RC

      Yeah

    30. SO

      ... put the little bits together. But then we get something like genetic testing, and we start thinking we don't need those principles any longer. We can just do this really fancy, you know, phenomenal thing.

  13. 1:27:06 – 1:37:33

    From illness identity to recovery identity: belonging, belief, and getting better

    1. RC

      Let's also talk about replacing our illness identity with a recovery identity.

    2. SO

      Yeah.

    3. RC

      And again, you're very sensitive with how you write about this.

    4. SO

      Yeah.

    5. RC

      But I, I think, and I've certainly experienced this, uh, I've seen it many times, where someone's illness becomes their identity.

    6. SO

      Yeah.

    7. RC

      And I can understand why as well.

    8. SO

      Me too.

    9. RC

      I really can understand why, but it doesn't tend... In my experience, it doesn't tend to help you in the long term.

    10. SO

      Mm-hmm. Yeah.

    11. RC

      Uh, wh- what's your take on this?

    12. SO

      Yeah. So sort of, I think when we talk about illnesses, uh, as identity, people always kind of think of, of, um, behavioral conditions or autism or ADHD, but I've actually in the book described a study that looked at people with cardiomyopathy who, um... So cardiomyopathy, an inherited heart problem, and, um, they, they did an assessment of these people for how strongly they identified with their illness, and so they call it engulfment. So some people were kind of engulfed by their, um, identity as being a person with cardiomyopathy. What was really interesting to note is that the people who really identified very strongly with being cardiomyopathy patients had more healthcare needs. They went to the hospital more. They needed, had more, um, casualty, um, presentations. They had more symptoms than people with worse heart disease.

    13. RC

      Mm-hmm.

    14. SO

      So it actually, you were more symptomatic if you identified very strongly with cardiomyopathy than you were if you had worse heart d- disease or even psych- um, psychiatric symptoms like depression and anxiety. So identifying very strongly with an illness can heighten your symptoms because it sort of focuses you on your body, um, and it gets in the way of recovery. You know, if your illness is y- your identity, then how do you move forward?

    15. RC

      Yeah.

    16. SO

      Or if you're part of a, of a group who also have that illness and your belonging within that group is predicated on you having that illness-

    17. RC

      Yeah

    18. SO

      ... and talking about that illness, well, then, how do you move forward?

    19. RC

      Yeah. There's just this real tension, isn't there, about, like, let's say, having a, having a label, right? A label, a diagnosis can make you feel validated.

    20. SO

      Mm-hmm.

    21. RC

      You go, "Yes, I knew there was something wrong."

    22. SO

      Mm-hmm.

    23. RC

      At the same time, it could also potentially trap you-

    24. SO

      Mm

    25. RC

      ... and make you think that's the entirety of who you are.

    26. SO

      Yeah.

    27. RC

      There's like a tension there.

    28. SO

      Mm-hmm.

    29. RC

      There's a tension there with your... Potentially for some people, where having this illness means I've got this strong community support.

    30. SO

      Mm.

  14. 1:37:33 – 1:43:08

    Closing message: protect ‘any kind of future’ with careful, human-centered diagnosis

    1. RC

      Suzanne, listen, I could talk to you about this for, for hours. I think we've, we've not even scratched the surface of what's in your book.

    2. SO

      Mm-hmm.

    3. RC

      Um, there's so many powerful ideas. You know, the kind of, the over-medicalization sometimes of basic human struggles, uh, expanded definitions are turning millions into patients.

    4. SO

      Mm.

    5. RC

      Diagnoses are becoming a social identity.

    6. SO

      Mm.

    7. RC

      We've covered some of that. Um, you know, we're medicalizing normal entire life stages.

    8. SO

      Mm.

    9. RC

      You know? I know we didn't cover this today, but, you know, I've even spoken to people on this podcast before who call aging a disease.

    10. SO

      Yeah.

    11. RC

      You know? And it's interesting, and I understand their rationale for doing it, but we are at risk of medicalizing, uh, normal entire life stages.

    12. SO

      Mm.

    13. RC

      And also this powerful idea you write about, that medicine in some ways might be fueling perfectionism.

    14. SO

      Mm.

    15. RC

      Right?

    16. SO

      Yeah.

    17. RC

      Which is really powerful. Look, there's-There's all kinds of things in your book for people to get stuck into. I- I've gotta say, I believe some people will push back at some of these ideas.

    18. SO

      Mm.

    19. RC

      But I think you've written it so beautifully and so compassionately to get across these ideas, and I think if we don't talk about these things, right, where do we end up in 20 years if we keep-

    20. SO

      Mm

    21. RC

      ... diagnosing at this rate?

    22. SO

      Yeah.

    23. RC

      Very soon, being well will be in the minority.

    24. SO

      Yeah. I mean, these... I know these are difficult conversations, but what I would just like us to do is not be afraid to have that conversation.

    25. RC

      Yeah.

    26. SO

      Yeah.

    27. RC

      Yeah. And that's one of the reasons, A- A- I love a lot of these ideas.

    28. SO

      Mm.

    29. RC

      I- I- I'm very aligns-

    30. SO

      Mm-hmm

Episode duration: 1:43:08

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