Feel Better, Live More with Dr Rangan Chatterjee - Why Medicine Has Gone Too Far, The Problem With Getting A Diagnosis & Why Early Detection Is Not Always A Good Thing with Dr Suzanne O'Sullivan #553
Episode Date: May 6, 2025Could 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 o...f 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.  Support the podcast and enjoy Ad-Free episodes. Try FREE for 7 days on Apple Podcasts https://apple.co/feelbetterlivemore.  For other podcast platforms go to https://fblm.supercast.com.  Thanks to our sponsors: https://thriva.co https://drinkag1.com/livemore https://vivobarefoot.com/livemore https://airbnb.co.uk/host  Show notes https://drchatterjee.com/553  DISCLAIMER: The content in the podcast and on this webpage is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified healthcare provider. Never disregard professional medical advice or delay in seeking it because of something you have heard on the podcast or on my website.
Transcript
Discussion (0)
Identifying very strongly with an illness can heighten your symptoms because it sort
of focuses you on your body and it gets in the way of recovery.
You know if your illness is your identity then how do you move forward?
Hey guys, how are you doing?
Hope you're having a good week so far.
My name is Dr. Rangan Chatterjee and this is my podcast, Feel Better, Live More.
Might our healthcare system in some ways be making us sicker rather than healthier?
In the UK, autism diagnoses have increased by a staggering 787% between 1998 and 2018, and 1 in 5 people have now been diagnosed with some form of
mental health disorder.
But what if some of our health struggles aren't necessarily diseases to be cured, but rather
normal human experiences that are being overly medicalised. This week my wonderful guest is Dr. Suzanne
O'Sullivan, consultant in neurology and clinical neurophysiology 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 truly thought-provoking conversation,
we explore a variety of different themes,
including why giving someone a diagnosis is never neutral, how the definition of autism
has dramatically expanded over the past few decades, why screening for diseases like prostate
cancer can often lead to unnecessary treatment, the potential problems of genetic
testing and why early detection and treatment are not always better, particularly when it turns
healthy people into patients. I think this is a much needed conversation about a crucially
important topic that challenges many of the widely held
assumptions about 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 that everyone should refuse a diagnosis, rather, she's encouraging
both patients and doctors alike to consider whether medicalising our struggles is always
the right approach.
You are a consultant neurologist. 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. What's going on?
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 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 neglected young people who perhaps could have done better with a bit of support.
Maybe people with mental health problems were afraid to come forward.
Also people were going through doctors 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.
Yeah. I mean, I guess there's all kinds of conditions aren't there that are rapidly on the rise.
I mean, I think at the moment, is it one in five people in the UK have some sort of mental
health disorder?
Yeah.
I mean, that's a lot of people, right?
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, are we actually becoming more unhappy or are we medicalizing what we would in the past have called ordinary unhappiness?
And that's kind of my focus of the age of diagnosis is to think about what I call overdiagnosis.
And I want to kind of clear up what that is at the very start because I think it's sort of,
you know, people hear politicians talk about overdiagnosis 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 overdiagnosis is.
Overdiagnosis means that somebody could potentially have 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 medicalized when perhaps maybe social change or some different sort of support
would help them more than a medical label.
It's interesting, as I read through your book, I think, wow, this is so well written.
There's a deep compassion behind your words, but you're actually trying
to raise awareness of something that is critically, critically important. And as you say, you're
not saying that, you know, you're not saying that certain conditions don't exist. You're
absolutely not saying that. And one of the key questions you ask is, is the diagnosis helping you? Not as a diagnosis, right? Is the diagnosis
helping you? Why might a diagnosis not help us?
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 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.
She came to me with unexplained seizures.
We discovered she had epilepsy.
I've been treating her for many years and 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,
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 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 what might be wrong with Stephanie. So it immediately sent them to a genetics clinic, both Stephanie and Abigail.
Abigail at the time was only 15.
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, 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, anticipate future health conditions so they
can be addressed as soon as symptoms start.
You know, 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
and just thinking what did I do?
Because if I looked at it another way, you know, I had taken a 15-year-old girl who was,
you know, she had some gait problems, some walking problem,
but it was so subtle, it didn't bother her.
She was good at yoga and she wasn't good at running.
That suited her fine.
And I pretty much said to her,
I think you have a potentially neurodegenerative problem,
now I'm going to send you for tests.
I turned a girl who believed she was healthy into a patient.
And 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 what favour had I done her really?
She could have quite happily waited another 10 to 15 years for her life to be medicalised.
You know, it could be that 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 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 diagnosis to anticipate futures
that might never happen or kind of burdening people with diagnosis 10 years
before it's necessary, then are we really doing the right thing for those people? Yeah. You brought up so many interesting points there that you would be celebrated and are
celebrated as a doctor for making that diagnosis. I was thinking about this this morning, you know,
I was reflecting on your book and a lot of the concepts in it are kind of things that I've
intuitively felt in medicine since I practice actually. I've always struggled with giving people labels. I can always have,
I can see it so clearly now. It always felt wrong or can I say limiting to me to do that.
And I've got plenty of examples that I'll perhaps share with you. But I thought about
our medical school training, everything about us as doctors from the minute we walk into medical school
is about making the diagnosis. Right? And I kind of feel that perhaps in a different
era where what was coming into medical doctors was, I guess, largely acute problems which responded well to, you know,
oh, you've got pneumonia, here's a pill, you take this three times a day for a week and,
you know, then your pneumonia is 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, there is no clean,
mental health problems being one of them, there is no clean, quick fix. So there may be an unintended consequence of making that diagnosis.
Does that make sense?
Absolute sense.
I mean, clearly we recognise when diagnosis is useful, you know, 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 and labels
and diagnosis are useful and essential. But a diagnosis is not inert. It's not just something
that comes with positives or is neutral. It comes with negatives and actually Abigail,
the 15 year old I was talking about said something really, you know, I met with her years later
after I gave her that diagnosis.
What was the diagnosis? So she had a very rare genetic mutation that is associated with a gradual neurological decline.
So only about five people in the world have ever had this mutation.
So that's as rare as it gets.
And you can imagine therefore that a diagnosis like that doesn't bring you an awful lot,
because 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 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 negative way about what had happened to her.
And she said something really interesting. She said she was a primary teacher then, and she said, you know, that she understood exactly what my concern was, because she 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 burst out crying and they'd 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. 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 how
badly that could have gone. So that's how a diagnosis changes
a person's relationship with their body. 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. 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 was doing her a favor.
Let's contrast that with the family
towards the start of your book with Huntington's.
Right, because that was very, very powerful. So if you could just go through that, because I think it touches
on so many different points, including this idea that getting medicine involved, testing
early, predicting stuff we think is always good. But I think this kind of turns it on its head a little bit.
So, I mean, I started the book with the story about Valentina and Huntington's disease,
which I know is not 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 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 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 newer degenerative disease.
And her unborn child went from being absolutely perfect to having a 25% chance.
So it was devastating news for her to get.
So this is not even her being diagnosed.
This is her mother being diagnosed.
Automatically changes her perception of herself, her life and her child.
It just completely changed her personality and her wellbeing overnight.
And there is a genetic test that can be done for Huntington's disease.
And it might seem a little counterintuitive to people, but she decided not to have it.
That's a really common choice for people in her position, 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 disease, risk of Huntington's disease,
don't have the test because they want to believe that it can be negative.
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.
Essentially she decided, listen, I'm having my first baby.
I want to enjoy being a mother to this child.
And then she went on and had a second baby and she did enjoy her life going forward.
But she would say that 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 spectre 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. The 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. And she kept putting off testing because she wanted to bring up
her children without the worry of the positive diagnosis.
Even though she was worried.
She was 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.
So it changes the whole family for her to get that positive test.
And basically it would also, the geneticist advised her, if you get that positive test. 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 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, 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.
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 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 without
crying because it's so sad. It's basically the geneticist pulled down the mask and the
test was negative. She didn't have Huntington's disease.
Basically she had, and this is really the point of telling
this whole story at the very beginning of a book about
common disease, a rare disease about common diseases,
is to point out that the way that you,
if you believe that you have a disease,
this is like the labeling or nocebo effect.
If you have believed that you have a disease, then what will happen is you'll start searching your
body for evidence of that disease. And because our bodies are not perfect and because, you
know, we always, everyone feels tired sometimes, everyone gets flustered sometimes.
Everyone gets flustered at the airport sometimes.
Exactly. And what would happen to her when she went to the airport, I mean, I'm the most
flustered at the airport, I have to say, you know, what would happen to her at the airport sometimes. Exactly. And what would happen to her when she went to the airport, I mean, I'm the most flustered at the airport, I have to say. You know, 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.
Because it's confirmed, oh my, I'm going to end up like my mom. I need to do the test,
but I don't want to do the test. But of course this is Huntington's disease, what else would
it be?
And as you say, like she had seen her mom.
So imagine she'd seen this vivid, vivid portrayal of Huntington.
So she knew exactly what to expect and how awful it was.
And she had a very vivid inner picture in her brain of what was happening to her.
And that absolute conviction and that anxious attention to her body made her body less reliable
and made her notice
everything which amplified everything.
And then when she found out she was negative, she didn't suddenly stop being flustered
in airports.
She didn't suddenly stop tripping over things, but she was able to say, okay, that was nothing.
So nothing spiralled any longer.
But it's such, for me, this is such an important story in two ways.
One, because if we're going to increasingly label people with mental health diagnosis,
for example, we need to understand that a label changes a person.
A person can conform to a label without even realising they're doing it.
And I need people to know that. I also would like people to learn from the very inspirational Huntington's disease community.
So in the sort of 70s, 80s,
before it was possible to test for Huntington's disease,
people at risk all said,
yeah, when a test comes available,
I will definitely have that test.
And I think a lot of us would feel that way now,
wouldn't we?
If we think we'd have it.
Now decades later, the test became available in the early 1990s.
80 to 90 percent of people at risk of Huntington's do not take the test. So Valentina's choice is
the majority choice. And the reason they don't take the test is because they realize once you
learn it, you have a disease, you can't unlearn it. And they realize that living with a hope of
any type of future is very, very valuable. Because the minute you discover that you've
got a big thing coming in your future, it alters your whole experience of life. And
that's how I feel about mental health labels and things is, you know, they really make
things concrete. And I would like us young people in particular to allow young people
to live with any kind
of future.
Yeah. Hope is such an important thing for humans, isn't it? It's so important that we
have a sense of hope that our lives could get better, that there is potential in our
future. And I guess a incurable condition with devastating consequences, the natural belief would be, oh yeah, it's
good to know, it's good to test. Which is, that's the belief in medicine. It's good to
test, it's good to know, but is it good to know? You know? And I'll tell you, you know,
it's interesting. I've always had this slight aversion to labels as a doctor, which is hard
because the whole medical system wants you to label people. 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, severe backache in my twenties.
And in essence, I'd tried all kinds of things. People would say, oh, you know, you're, you're
almost six or seven, you know, you're going to have backache. I thought, it kind of doesn't make sense to me.
Why would that mean I'm going to have backache?
And I saw a spinal surgeon, probably back in 2003, something like that.
And I remember we went through the results and he said, look, yeah, you do have a disc
prolapse.
I can't remember where, I think L4, L5. But
he said, wrong. The interesting thing is at your age, I could go out into the street and
pull a hundred people off the streets with pain or without pain. And it was something
like 30 or 40% are going to have the same scan as you. We've spoken about chronic pain
a few times on this podcast and I've even questioned how we report scans, right? So a young kid comes in, it has a back scan and we say, oh, you
know, it's fine, but you just got a bit of degeneration on your spine. Degeneration?
In radiology and medicine, that's a normal term. I'm like, hold on a minute, we can't
be telling people you've got degenerative spine because I know that affects in me for
five or 10 years, because there's a belief within you, I've got a problem, I've got a
weak back.
And I've come out the other side of it where I know I've actually got a strong back and
I'm capable of, because I've all kinds of stuff I've had to address, emotions, physical
stuff.
But the point is, is that words matter, labels matter.
100%. You know, it's funny because you just made me think of something that happened to me,
which is I broke a bone in my foot and then I had to go back and get an x-ray to make
sure the bone was healed.
And someone read the x-ray report to me over the phone and they said, oh, you've got arthritis
in your toe.
I don't have arthritis.
You know, I have like, I'm a woman who wore shoes that were too uncomfortable for two, you know,
how easily that, when I heard that I was mildly horrified
because it just tells you why doing tests
can be really problematic for patients
because you will never get an X-ray back
that says what a pristine X-ray this is.
You know, you will always see wear and tear.
And then these things are then communicated to patients in a way that, you know, if I wasn't a doctor,
I might have walked away from that thinking I had arthritis rather than I should wear better footwear,
you know, which is the ultimate message. But it's a real problem.
I worry that people don't know what good medicine looks like anymore.
What is good medicine?
looks like anymore. What is good medicine?
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Well, I think good medicine is, you know, if you go to a doctor and you're always concerned
about a headache and you want to 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 tumours. Good medicine
looks like your doctor listens to you, 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 slow medicine, which I know, you know, doesn't work
fantastic in the NHS we have at the moment. but you know, medicine where you have a symptom and you respond with a test
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.
I don't know if you're familiar with choosing wisely.
There's a lot of kind of over diagnosis concern in the world, not just,
it is not only my concern. So Choosing Wisely is a campaign for kind of advising
doctors to be a bit more kind of 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 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% of them also said that they did
them regularly. So I think as doctors, we're in quite a tricky place.
It's hard, isn't it? Because that, you know, one of the things she said about what good medicine is, is not always ordering a test when your patient wants it, which presents
its own challenges, right? Because you may call that good medicine, but that patient
may not feel as though they were delivered good medicine. And 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's people a lot more liberal with what they order.
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, seen, validated,
that you know, you were really compassionate with them.
And so, well listen, why don't we see you again in a few weeks? But this all sounds like I could see
why this is causing you so many struggles and a lot of things kind of get better by themselves.
I definitely feel that way. I think part of the problem maybe that sort of our type of society,
like kind of developed countries and wealthy nations and so forth,
is that we've lost other supportive 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 individualistic society. We don't
live with our families. I'm not personally a religious person, but that's 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 medicalise your problem and they have
to medicalise your problem. It's the kind of collusion between us.
Yeah, because you don't realise, but by going to your doctor, the lens through which most
doctors will see things because of our
training is through the lens of diagnosis and medicalization. So actually that's what
you'll probably get there unless you're very careful.
And the system works through labels and you know, 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 of support will accept you. The system depends on it and it'd be lovely if it didn't.
And there's two cases that always come to mind when I think about this. One was in my first week
in general practice. So I'd moved, I was doing specialism, I was in nephrology and I, as I
mentioned to you in my kitchen just now, I've always wanted to see everything. Like I've always
felt I want to see all symptoms and how the whole body see everything. Like I've always felt I want to
see all symptoms and how the whole body is connected. And I moved to general practice
and remember the first week a lady came in, young lady, really struggling with her moods.
And the truth is I could have very easily diagnosed her with depression, right? But
it just felt wrong to me. I just
thought, I can't, I need to get my head around what's going on here. Okay. I just can't in
10 minutes go, Oh yeah, you meet these criteria. We'll do a PHQ-9 questionnaire on you and
I'll code this as moderate depression or whatever it might be. Just for some reason, it didn't
feel right to me. So I said to her, look, can we have a bit more time? Can you come tomorrow at the end of my morning clinic? Spend a bit more time with you. I'd
love to understand what's happening. And in essence, you know, she had broken up with
her boyfriends relatively recently. I think it was her first big breakup. She was really
struggling. There was a few other things in her life, but I would see her every week for
a period of time. I can't remember how long now, but over that
time, I don't think anywhere else in her life, as you mentioned before, like religion, whether
you are religious or not, one thing that religion did provide people is this community and this
sense that if there's something wrong, I can go somewhere and talk about it with other
people. She got better off her own accord.
And one of the things I learned then was, wow, listening wrong is really powerful medicine.
I wasn't taught that at medical school, but I'm learning that if I listen carefully and
that person feels that they've been listened to, that can be healing. Right? I did see
her a few times for the next few years for a variety of other things and her
mood issues never returned, right?
So my point is, is that that's just one case.
It's not a clinical study, but I've often wondered if I had slapped a depression label
on her, what might be the implications of that for the coming years?
Anytime you're starting to feel low for whatever reason, oh yeah, yeah, I knew I've got depression. You know, that's
what I've got. Exactly. So it is an issue. Exactly. And when we kind of conceptualize
problems like depression through brain chemistry and brain scan findings and things, you know,
I think people get a little bit of relief from that because it kind of says, okay, it's
not my fault that I feel this way. And I'm glad that people get relief from that.
But the real big downside of it is that it potentially gets in the way of them doing exactly what you just described,
which is examining, you know, your mood cannot be separated from your environment or your history or your circumstances.
So irrespective of what you call it, an examination of life is needed when you're feeling down.
And that's the thing you're sort of, you're in control of.
You're not necessarily in control
of your brain chemistry, et cetera.
But I also wanted to say, you know,
that your experience there,
I think about this as a doctor all the time,
you know, I think sometimes I'd like to say
to junior doctors that you think that sort of the exciting bit of medicine
is going to be like, I don't know,
ripping someone's chest open or something gory.
I'm putting defibrillator on the chest.
But I would like to say to junior doctors,
now I'm not sure that everyone learns this,
but there is nothing as fulfilling,
there is nothing as fulfilling
as having a conversation like that.
And then someone feels better and you're going like,
I did that all on my own,
just with the power of our discussion.
And I'd love for more medical students and junior doctors
to kind of appreciate that and not be sort of,
I think sometimes those kind of softer skills in medicine
are kind of looked down on.
And we think that specialists who do really fancy tests and things that there's something clever and amazing
about that. I think anyone can learn to do the really fancy test part of medicine, but
only a certain number of people can make people better by talking to them.
In the book, you detail, I think in the conclusion about some of the problems within medicine that lend itself
to overdiagnosis. And one of the things you talk about there is the downsides of hyper
specialization and how we do need to value again, the role of the generalists. And this
is, you know, one of the reasons I moved from specializing to I consider myself an expert
generalist. I love being a generalist and trying to put it all together.
Yeah.
I mean, I feel really strongly about this.
I qualified in medicine in 1991.
So I was kind of on that moment when everyone was suddenly getting more and more specialist.
All of 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.
And one of the real difficulties that I have, you know, another kind of trigger
for writing this book was that I keep seeing these super young people, like people in their
twenties who maybe have six or seven different diagnoses. And sometimes I think they've been
given different diagnosis to explain the same symptom. And I worry about it. I don't see
them getting better. But if I try to say to somebody, you know, 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 need to stay in my lane is what I sometimes feel like I'm
not allowed and I'm not allowed address multiple different diagnosis, just what I've been asked
to look at. And that's the problem then, because nobody's looking at the patient as a whole patient.
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?
Because you've had this experience, I'm sure, where people are on tablets for the side effects
of the tablet and then another tablet to address the side effects of the other tablet.
Once you step back from this and look at it with a bit of detachment, you're like, what
are we doing in medicine? Right? I think it's okay to say modern medicine is really good
at certain things, but there's some things we're not that good at. And I think it's okay
to go, you know what, maybe we need some help or some new training or a broader lens to look at here.
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 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.
So for example, you know, the cutoff point for blood pressure has been coming lower and
lower and lower so that now anyone with a blood pressure over 130 over 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 prevents strokes, for example, you will
prevent strokes. But for every stroke that you prevent, you will potentially medicalize the lives
of actually hundreds of other people. This played out right literally February half term. As I was driving there was an elderly
lady who literally just fell backwards and she didn't even break her fall. She just fell
down. So I obviously immediately stopped the car, went out to try and help and you know,
help to get her settled, checked her injuries. This is literally about five weeks ago now. And as she came around, I started to chat to her and it was
really interesting. She was put on blood pressure lowering medication about six months ago. She
said, I don't know why the doctor put me on this. I don't want to, I don't feel good on it, but they
said it's going to help me not have a stroke in the future. Now, to be clear, I don't know the whole ins and outs
of her story. So I'm not criticizing anyone. But what was really interesting to me, and
this is what medicine does, right? We think we're helping because the goal is with, we're
saying, oh, you may get a stroke in the future. So therefore, if I can catch that increased blood pressure
now and treat you for it, I'm going to stop you getting that or reduce the likelihood.
But then we don't think about, or sometimes I would say we don't think enough about what
are the implications of being on a daily medicine for 10 years, for example. And also for this
lady and I, you know, I did keep in touch with her son, so I think
it was a side effect to the blood pressure medicine. She basically just had this dizziness.
Again, in order to prevent a theoretical stroke at some point in the future, she may well
have had permanent damage from a fall that possibly was a side effect to that blood pressure
lowering medication. That's a real cost to this stuff.
Absolutely. And I don't think people, because I've been talking about this kind of stuff
a lot now and I find a lot of people really identify very heavily with the person whose
stroke was prevented, but people are still failing to appreciate the hundred people who took tablets,
but their life was also medicalized in other ways. That affects your insurance,
your travel insurance. It affects lots of things in your life. When you turn a healthy person into
a patient, it affects your psychology, affects your financial situation. And I don't think we're
paying enough attention to the kind of health economics of that.
You know, it's the same with, I mean, it always worries me slightly talking about cancer screening,
because I want people to go for cancer screening, but I want them to go empowered with the questions
or the right questions for their doctor and to understand the tests they're going to get.
But if we look at cancer screening, so a symptomatic cancer is one where someone
has a lump or white loss that needs to be treated, that always needs to be treated.
A screened cancer in a perfectly healthy person is something a bit different. You can screen
2000 women for breast cancer, you'll save one life, but you'll potentially treat 10
women for cancer that never needed to be treated. And the thing is in those sort of circumstances,
every one of those 10, 11 women will think
they were the person whose life was saved
because we're not adequately educating people
of the fact that when something abnormal is found,
it's okay to think about it and watch and wait for a while
and discover if you are actually a person
who needs all of that aggressive treatment.
You know, one of the things you have done in this book is you have not shied away from
some difficult topics, right? Because you've covered autism, ADHD, cancer, POTS. I mean,
you've really gone into areas which frankly as a doctor would be a lot easier
to not go and cover.
Have you had much pushback since this book has come out?
And if so, what?
So I mean, I completely understood when I was writing this book that, you know, people,
I'm talking about diagnosis that people have found personally valuable to them.
And I realized therefore it's difficult for people to hear if I'm saying, well, maybe
that label isn't, you know, it has some harm associated with it.
So I want to just make it clear, if anyone genuinely feels that, you know, their diagnosis
is really benefiting them, I don't want anyone to feel that they have to give any diagnosis
up.
And, but I do want to kind of say to people, you know, think before you take a label.
With regards to the pushback that I've had, you know, there are people who have specific labels that they have found useful.
So, you know, it is my position that if you're at the very, very, very mild end of, say, an autistic spectrum,
you might actually benefit more from being helped without the label.
So not being dismissed, but being supported without being referred to as autistic.
Why?
Well, because basically, imagine you're a 14 year old child and you're having some social
communication problems in school and you're assessed and somebody, again, if you've got
severe or moderate autism, you're already disabled by your disorder.
But if you're at that mild end of the spectrum where you've been compensating and managing
okay for a long time, what can happen with that label is that that child focuses all
of their attention on what they can't do, that they lower their expectations for themselves
because now they believe they have a neurodevelopmental problem that means they can't do certain things.
And other people, teachers will unconsciously probably think,
well, you know, this person has an autism label, so they probably won't be great at this.
So the minute you label people in that borderline zone, the little gains they get from the label
might be overshadowed by that sort of self-fulfilling prophecy of the label. The label says you were this kind of person and you can't overcome it.
So it might, for some people, not for everyone, we want to make that clear,
and you do make that clear in your book, okay?
The initial comfort and reassurance of having a label
for maybe something that you've struggled with for a period of time,
having a label for maybe something that you've struggled with for a period of time might over time be outweighed by the negatives, which you may not realize when you get it.
You know, what is it now? Is it one in 36 US children have autism?
And one in 20 people in Northern Ireland, yeah.
Is this children, adults or everything? Children have autism. Okay. And also a staggering statistic in your book was between 1998 and 2018.
So that's, what's that?
That's just 20 years.
Autism diagnoses in the UK increased by 787%.
Yeah.
Okay.
Are we getting better at diagnosing it or is there something else going on?
Well, you know, to a certain degree, we're getting better at diagnosing it or is there something else going on? Well, you know, to a certain degree, we're getting better at diagnosing it.
So, you know, as I said before, I think there is a kind of a chronic neglect of struggling
children that had to be corrected.
But I think now something else is going on.
So what's happened?
If you're so in the 1940s, when the concept of autism was coined, it was called extreme
autistic aloneness.
And 11 children were described
and they were described as being no more interested in people than they would be in filing cabinets
or bookshelves. So that was the sort of what autism was in the 1940s. Then in the 1960s,
a study in Camberwell in South London, you know, of children attending mental health
services, they said, hey, you know, this thing we're calling autism, I think actually it
comes in milder versions, and that might be affecting the mental health of, they said, hey, you know, this thing we're calling autism, I think actually it comes in milder versions and that might be affecting the mental health of children.
So then they created a kind of milder version of autism called autism spectrum disorder.
And since then, there's just been multiple changes.
You know, there's every committee for the Diagnostic and Statistical Manual of Psychiatric
Illnesses slightly adjusts, just tweaks the diagnostic criteria to allow it
in another group. So the age keeps being adjusted. So it used to be a diagnosis of infants. You had
to show it first in infancy, but now you can get a diagnosis in adulthood. Or they slightly change
the diagnostic criteria so that it fits better with women. So they will say, well, teenage girls
don't really exhibit this aloneness.
So perhaps their social communication problems
manifest differently.
Maybe they have lots of social groups,
but only shallow friendships.
So what's happening there is that the diagnosis
is completely changing in little ways all the time
until the diagnosis now looks nothing.
I mean, if you think, for example, Anthony Hopkins is
said to have, the actor Anthony Hopkins is said to have autism, I mean, you would not
look at him and think extreme autistic aloneness, so that what it was and what it is now are
two wildly different things. I feel that, not everyone feels this way, of course, my
concern is that as well-meaning as all this is, so the idea with all of these
changes is if we can find more struggling children and help them, that we will have
a healthier population going forward.
The reason I think it's overdiagnosed is that we don't have a healthier population going
forward.
So you can imagine if you're helping more kids in school, you should be seeing happier,
healthier, better adjusted young adults.
But we actually have worse mental health in young adults than we've ever had.
So how, how has it helped them?
You know, that's my question is, if it was a good idea to give so many people an autism
diagnosis in school, where's the downstream positive effect?
And I think we have to stand back and say, hey, listen, we meant well, but maybe we should rethink it's not working.
Could some people argue, say, well, listen, I hear what you're saying, but at the same
time, the support hasn't caught up with the diagnosis. So we're now catching more people
who we were missing before, but we haven't quite got adequate support. Is that why mental
health isn't improving?
And certainly people do say that. And I do agree that I'm sure that everyone isn't getting
the support they needed. But let's look again at what's happening in school with special
educational needs coordinators. So, you know, 1990s, there were none of, I'm not sure exactly
when they came in. Let's say I was in school in the 80s, it didn't exist then.
So sometime in the 90s, this came in.
27% of children in school now get special accommodations
because they have a medical diagnosis.
So we might not be doing it perfectly,
but we are identifying a huge number of people
and making special accommodations for them in school.
I appreciate there's so many things that feed into mental health and there's so many other factors. But you know,
if you went from zero to 20%, 27% and you are not seeing some improvement in the wellbeing
of young people, then I really think, you know, you have to stand back and say, hey,
maybe it's not working.
Yeah. And if we just take that trajectory and go,
if we keep increasing at this rate in a decade, in 15 years,
it is not unreasonable to think that we could tip over 50%.
Right? So if over 50% of kids are requiring, you know,
special help at school, you know, we have to ask ourselves,
well, what is normal anymore? Like what is typical? What is atypical? We have to ask
ourselves, you know, is there something wrong with the school system? Right? We have to
certainly ask questions and for anyone who is pushing back at what you're writing about
or saying, I just want to say, listen, you may or may not agree with everything Susanne is
saying, but it is an important conversation. This conversation has to be had. And I think
a lot of doctors are feeling it, a lot of the public are feeling it, that all these
diagnosis are going up. Yes, it can be helpful for sure, but for some people it's not. And
we have to be interrogating the approach that we're taking, don't we?
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Absolutely. And I'm absolutely in no way saying that those, let's say there's 27% of children
who are getting special accommodations in school. I'm not saying that those children
aren't struggling and that we should go back to a period of just ignoring struggling children. What I'm saying is that A, the diagnosis, labelling
them as having a brain disorder and B, the type of help we're giving. Well, we're not
seeing any evidence it's working. It may be that what we're doing is asking young people
to focus on what's negative about them and what they cannot do.
Whereas perhaps what we should be doing is looking at young people and helping them to figure out
what their talents are and what they can do so they can work to their strengths rather than
sort of expecting a world to accommodate to their weaknesses.
Yeah, it's interesting that I think your chat is very, very good. It's very, very thorough and
you present
all kinds of different viewpoints in it. And you, you know, in fact, some of the challenges,
you know, is it someone with autism? Is it an autistic individual? And you, and you,
and you raise, you know, where people's concerns come up. What I also found super interesting
is you write about this chap called Miles and you write autistic people don't want to be
fixed and you write that Miles is one of a very large and growing number of autistic
people who disagree with the medical profession's deficit based approach to diagnosis, preferring
an approach that concentrates more on what makes an autistic person special.
The people with this view, the concept of treatment is
offensive and it's kind of interesting is that this as more and more people have been
brought into a diagnosis of autism, people are challenging all kinds of things, which
is possibly is probably a good thing.
Yeah, I mean, it was interesting, Miles and actually another young woman called Poppy,
who I wrote about in the book, but I talked to, I should say, a large number of people,
but I could only write a small number of stories.
So I heard quite often the opinion expressed that, you know, autism is a difference rather
than a disorder, and therefore, you know, to ask someone to change is it would be like trying to tell
someone not to be homosexual or not to be, you know, it's changing a fundamental part
of yourself.
Also, Miles and Poppy both expressed the opinion that they didn't want to be called a person
with autism, they wanted to be called autistic because it's an integral part of them, which
is interesting because I work with people with epilepsy, they don't want to be called epileptics, they want to be called people with epilepsy.
So it's a very unusual view that applies more to autism than to anything else.
I mean, my feeling about that is that I agree that they're probably, the world probably works
better for some people than other people. And there probably are people who feel different and are different,
and perhaps the world isn't set up equally for people who feel different
and feel they don't process in the same way.
But the concept of autism was created to help people who do have a disorder.
It was created to help people who've got a very significant
social communication and behavioral problem,
which stops them doing super ordinary things
that everyone should be able to do,
going to school, going to the shops,
making friends, having relationships.
So autism was created as a disorder
to identify this group of people,
to get them support, to make them better.
I think that basically if we then co-opted into a place where there are people struggling
in a different sort of way, which perhaps would be better referred to as a difference,
then we're probably talking about something else.
And what I would argue for is that both groups need support, but we keep autism for the autistic
community who have a medical disorder for which they need medical support, but we keep autism for the autistic community who have a medical
disorder for which they need medical support and that we have a different way of supporting
people who feel their problem is more of an integral difference.
Maybe a different word?
I think a different word would be useful because, you know, there are people and I did also write about a boy or man with very severe autism.
His story was told to me by his mother Agatha.
He was severely autistic from infancy to the point that he would not be safe in the world
if he didn't have somebody kind of helping him at all times.
He also had a learning disability.
His autism was so severe that, you know, he would have regular meltdowns if things went
a little wrong in his environment, like he needed, even if he was in a cafe, for example,
he'd need his plate cleaned the minute he'd finished eating.
And if his plate wasn't cleaned, you know, then he would have a meltdown. So the concept of autism was created for people like him because in that meltdown, he's a
danger to himself.
And he needs significant support just to go to school.
He's had great support.
He has a job where he empties bins in a business and, and helps with photocopying and stuff
like that.
But he only does that because he got a diagnosis of autism and therefore tons of support.
So for that individual, you're saying the diagnosis and the support that comes along
with it is extremely helpful.
And just absolutely vital. He would not be able to, if there weren't sort of support
systems and pathways and if there wasn't a knowledge base about autism, people wouldn't
even know how to approach his problem.
I don't think anyone really believes that autism is a single thing.
You know, it's probably a whole range of different brain disorders, genetic conditions that lead to a certain set of behaviours.
And I think we need that label for the people who do have a disorder that is such that they can't do really important things. And I think perhaps we should think about
changing the language for people who are struggling in the kind of realm where, you know, the world
has not been very fair to them. They do need support, but not necessarily need to be asked
to change who they are. Yeah. It's interesting in that chat, you write about the potential negative effects of an autism
diagnosis. You said they are various. The stigma of autism has been associated with
low self-esteem in children, which is super interesting. Self-determination, the ability
to be motivated and in control of one's own life could be eroded for some people by an autism diagnosis. And you do make the case,
I'm not just talking about autism now. You make the case throughout the book that, you know,
a diagnosis is not always neutral. A diagnosis does not always equal better health. You also
talk about diagnoses sometimes becoming a social identity
and the potential problems with that.
Yeah. I mean, I just want people to know they have a choice. I want people to know that like,
if they have a child who's struggling a little bit, know your child. What do you think will work
best for your child? If they get a diagnosis, what will they get from it? And what could it take away from them?
Because the minute an illness becomes an identity, I always think of this, like
if anyone comes from a large family, you know, what happens in a large family is
you get the clever one, the sporty one, the, you know, and those kind of identities
you're given as a child, they really affect you and you grow, you can grow up
the rest of your life thinking of yourself as not as clever as your sister or not as sporty as your sister or...
Well, these beliefs, right? As you highlighted with the Huntington's case, right? Belief
is huge. I recently had a lady called Ellen Langer on the podcast. I think you said you
were listening to that episode.
Yeah, it was. It was fantastic.
She is very much of the belief. She doesn't necessarily talk about over diagnosis, but
what you believe to be true does impact your life. It does impact your health. That point,
a diagnosis is not neutral.
Yeah, exactly. And it's children that worry me most actually, because I think we talked
about Miles there. Miles got a diagnosis of autism when he was 50. By the time you're 50, your identity has developed.
But imagine a 14-year-old learning that they have this label
and then they're aware that this label means that you possibly can't do this very well,
you possibly can't do that very well,
your brain isn't necessarily developed entirely normally.
I mean, what does that do to a child?
Now, obviously, if that, if a person is really struggling, they might need that label, so
they can figure themselves out and they can figure out how to move forward.
But I just want people to think, okay, well, you know, could my child take this on board
too literally?
Might it stop them?
Let's face it, like, your brain doesn't mature until you're in your 20s, your mid 20s. So there's plenty of time for a person
to change, but will they still change if we tell them that there's something fundamental
about them that can't change?
Yeah. What would you say, Suzanne? Someone who's listening to this and is feeling at
the moment, quite upset with your comments on autism. If they're feeling,
you know what, this is, let's say for them personally, a diagnosis has been life-changing,
right? It's validated what they always knew to be the case. You know, people always thought they
were lazy, they were struggling, they were whatever it might be, whereas now they've got a reason,
right? So, you know, and I'm also thinking about, let's say a mother, maybe
a mother has got a child who has struggled somewhat and getting the diagnosis and the
support has been a game changer. What would you say to those people?
Yeah, I mean, I am a doctor, I'm in the business of making people better, you know, and if
anybody has a diagnosis, I do not want to threaten anyone's individual diagnosis
because if something has genuinely helped someone and something has genuinely helped
someone move forward in their life, well, that's fantastic.
That's what we want as doctors.
But just going forward for people, I would like, you know, people to hold the diagnosis
sometimes a little more lightly.
So if something is changing in their life, they might realize that the diagnosis doesn't
need to stay with them for the whole life.
And I'd like particularly for young people in school whose families are thinking, will
I, won't I, I just like people to kind of think, okay, what are my choices here?
You need the information, you need to understand all these issues so you
can make the right choice for yourself. And the right choice for one person might be get
a diagnosis, but that might not be the right choice for another person. So I just want
people to think about the issues.
There's nuance. It reminds me of my approach to, for example, I've got this health wearable
on. Now, there's a lot of discussion. Are wearables a good thing? Are they a bad thing? Right? And again,
I think it's too black and white, even the way that that question is posed, right? It's
not black and white. So for example, if you can be relatively detached from the data and
it helps you understand yourself better to make better choices, I think it can be amazing.
If on the other hand, as it is for many people,
you become over dependent, overly reliant, can't function without them and the data makes
you anxious, it's probably not a good thing, right? So the tool is actually neutral, but
it depends on who you are and your personality is to whether it's going to have an effect.
And I kind of feel we don't think about that through the lens of diagnosis, but we could even now apply those principles to getting a diagnosis. You know,
what is your personality like? Are you going to make it the entirety of who you are? And I know
it depends on what the condition is, but it's a very interesting point that I don't think we're
discussing enough. I guess it's easy to think about this through the lens of more
subjective diagnoses, right? We might think, oh, with type 2 diabetes, which is a lot more
clear, it's more clear cut. I actually don't even think it's clear cut on type 2 diabetes,
right? So I'll give you my take and then you can tell me how you see it, right? But let's
say in this country, your HbA1c, the average blood sugar marker,
once it hits 6.5, you are given a diagnosis of type 2 diabetes. Now, as I say, I've always
slightly had a problem with labels. So, what I would often do early in my career, if someone
came in with 6.5 or 6.6 or 6.7, what I would say is your blood sugar is currently consistent
with a diagnosis of type 2 diabetes, but there's probably multiple things in your life that
we might be able to address that if we address them might mean that it's no longer in that
range. Are you interested in me trying to help you figure out what some of those factors
are?
And usually if you frame it like that, people are like, oh yeah, is there something I can
do about this?
Whereas you could also, and this is what we teach on this prescribing lifestyle medicine
course that we do with the Royal College of GPs, right?
You could also in that consultation say, oh, actually, Martin, you've now got type 2 diabetes. We're
going to start you on metformin because that's the drug for doing this. You know, normally
within a couple of years, you're going to need another drug and you might end up needing
insulin at some point in the future. And as they're walking out saying, oh, if you can
lose a bit of weight, that might help you, which is often what happens, the way we frame that, what those two patients walk out with
is completely different. And so I think doctors, and I know it's hard in the current system,
I get that. But I think these have real implications. So I would even argue for type 2 diabetes,
you could apply this principle and go, do I have to make that diagnosis?
And what are the consequences? What's your take on that?
Yeah, no, I completely agree with your approach, but worse than type two diabetes is that we now
have pre-diabetes that we're telling people that, you know, a kind of a border zone between having
diabetes and being normal. So it's not a diagnosis, but you can, if someone told you you had pre-diabetes,
you would think you'd been given a diagnosis. What you've been told is you're in a high-risk state for diabetes.
You're talking about being more cautious about
telling someone who has a measure that is diabetic, whether you should be cautious and how you give that information.
But we're already developing systems to tell people who are just at risk of diabetes.
This is a great point, because generally speaking, this would be deemed as a good thing.
It would be deemed that, yeah, we want to get people early.
If we can get people early and we can empower them, we can prevent how many people ultimately
get a diagnosis of type 2 diabetes. What's your pushback against that?
Well, first of all, when they changed the definition of pre-diabetes by slightly lowering
the fasting glucose level, I think it was about 2017, that change meant that if those
new diagnostic criteria were applied to everybody in China, 50% of Chinese adults would have
pre-diabetes. If it was applied
in the UK and the US, a third of adults. So we're potentially labelling a third of adults
as high risk for diabetes. Now people will say, well great, so just tell them to eat
better and lose weight and exercise and all the things we should be doing anyway. But
the truth is that in the 10 years following that pre-diabetes diagnosis, even
though it isn't really a diagnosis, a lot of people will just revert back to normal.
You know, a lot of people will, the majority of people in the following 10 years will not
become diabetic, but could potentially live as if they are going to become diabetic. I
don't mean in terms of adjusting their lifestyle, that would be great. I mean in terms of worrying
about what's going to happen to them in the future. That's a big psychological load to
place on a person. You might get sick in 10 years, a very serious illness that has lots
of complications. I think we think an awful lot about the person with type 2 diabetes
that we saved, but we don't think nearly enough about all the people that we scared to get
there. Yeah, Suzanne, what you just said was so profound and interesting because
you're basically saying that one of the core tenets of how we practice medicine
or our belief about what the practice of modern medicine is, which is early detection,
identify people at risk, treat them early, may not be the best approach.
Well, I think we are medicalizing far more lives than we're saving. Of course, with these
approaches, we do save lives, but we are really being quite kind of blasé in a sense about
all of the lives. Yeah.
You could even apply this, right? Although you don't cover this in the book,
but obviously statins are quite controversial. Okay. And you know, there's, there's perspectives
on both sides, right? But again, like that lady who fell and potentially risked having
significant permanent disability from a fall that I think was highly
likely secondary to her blood pressure medication that was to help her prevent sickness in the
future. You could also argue the same thing that we have this thing in medicine, primary
prevention. You don't have anything yet, but if we give you this and the truth is, and
it's an uncomfortable truth, often it's pharmaceuticals, right? Which you have to be on every day for life.
If you assume, if you accept that it may reduce your risk, which I know is hotly debated and
contested, right?
In primary prevention.
If you sort of believe the data saying that actually, yes, if I start taking this at and I'm going
to reduce my chance of having a heart attack in the future. What we don't weigh up is yes,
but what is the implication of believing that and also having to take this drug, which does
have side effects for quite a lot of people for 20, 30 years. And the problem is, is you
can't do the test. You can't run the trial to get what would have happened
had you not taken it.
I mean, that's the problem.
And you never know who's been saved and who hasn't.
And you also don't sort of realize that,
you know, I saw one, I've forgotten the full details
of it now, but they looked at people
who'd been diagnosed with borderline hypertension
and found that
they were more likely to be off work sick because it changes your kind of
health perception to be told that you have a health problem. You know what I
would like, I'm not kind of here to say listen let's not ever check anyone's
blood pressure or screen healthy people again, but you know I have a feeling
that these innovations that they target the
wrong people, who pays attention to these things? People are already a little bit
minded to be healthy, kind of usually middle-class kind of people who are
already kind of on that path to health, whereas higher risk individuals, people
who are smoking and very overweight and drinking aren't necessarily the people coming forward.
I think we should be targeting people with multiple risk factors because we know that
they're the high risk group rather than targeting a whole population including lots of people
who have no other risk factors.
Let's go back to cancer screening because I think there's a general view that more screening
is better. I certainly think with the general public, there would be a view that, yes, I
want to get screening because I want to catch it early. And you go through, and you mentioned
some of it already in this conversation, but you go through some of the data, I guess prostate,
for example, it's kind of super interesting. It's everything, I guess, the overarching
principle is that, and I think this is frankly a principle for anything in life, right? It
goes beyond medicine, which is that there is a consequence to everything. Nothing is
neutral. There's an upside and there's a downside. And are you paying attention to both of them?
So what is the potential downside of an increase in cancer screening?
I mean, if we think about prostate screening, because it's very topical now,
you know, there are a lot of signs up saying, you know, think about going to GP for screening,
but there's no national screening program for prostate cancer.
And there's a reason for that.
And the reason is that if you screen a thousand men for prostate cancer using PSA,
the blood test, 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 is kind of below some people's minds,
but I mean it shouldn't because medicine has known this for years. 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 we didn't have the means
to find these things before.
We now have the means. And that means when we begin screening people, we're't have the means to find these things before. We now have the means.
And that means when we 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 want to 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?
Yeah, and you're saying like be empowered, but it's, let's say, I don't know, in prostate
screening, for example, and I know there isn't this national program, let's say, I guess
the unnecessary investigation that may come from a positive result can be quite significant,
can't it?
I mean, I think first of all, know that this issue exists.
So know that, so there was a study in Detroit where they did postmortems on people who died for things,
nothing to do with the prostate, and they found 45% of men over the age of 50 had abnormal cells
in their prostate that could be interpreted as cancerous.
So these cells are really common.
So first of all, know that that can happen.
So these guys weren't people who died from prostate cancer. They died for other causes,
but they found that almost half of them had abnormal cells. It's a bit like that MRI backscan
I said before. You got back pain, you don't have back pain. Take a hundred people off
the street. 30 to 40% will have a scan like that.
Exactly. And when you get older, it'll be more than 50%.
So first of all, know that,
and then realize that there is other...
Because I think what happens, and this is human nature,
I totally understand it.
Here you've got these abnormal cells.
What do you think? Immediately, oh, get them out.
That's your kind of, would be my immediate reaction.
But I want people to be aware that in huge proportions,
in the majority, these cells will not grow at all or will grow very slowly.
Therefore, there's no need to panic.
So what you can do is opt for ask about what we call watchful waiting programs.
So that means that you just have regular scans for a while and that will divide you
from the person who has cells that are going to grow quickly.
But you can't have that chat with your GP or your hospital doctor if you don't know
these issues exist.
So I don't want to scare people into not sort of looking after their health properly and
not going for screening when called.
What I want is for people to be able to know these things exist so that they can say, listen,
you know, is there an option for thinking about this for a while?
We could save a lot of people some really unpleasant operations.
Yeah. You mentioned the brachy gene and breast cancer in that chapter.
Yeah.
Anything you want to share about that?
Yeah. I mean, again, this is a 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 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 more of this?
So the BRCA gene, as people will be familiar probably with it, is it increases the risk
of certain cancers, particularly breast cancer, ovarian cancer, fallopian tube cancer.
If you have a family history of cancer, so your mother, your grandmother, 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 some people will choose to
have prophylactic surgery.
So I'm sure everyone has read the story of Angelina Jolie, who had a mastectomy and hysterectomy
and oophorectomy, ovaries removed as well.
So this is an option that you can take if you learn you have this gene.
Now 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, a little bit like the Huntington's disease story, they've seen this horrible disease in their family.
They saw their mom get sick and therefore they think, well, I don't want that to happen to me.
They've had family members die.
And therefore they think, well, I don't want that to happen to me. They've had family members die.
This is the bit of the story that, the reason I included the Brackett 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's lives were saved and that some probably had
surgery that wasn't absolutely necessary, but a bigger number's lives 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 like a statistical model.
It's like if you have two family members in this gene,
you've got an 87% chance of cancer.
If you've got three family members with cancer
and this gene, you have an 80% chance.
But now we've decided we want to extend this testing
to bigger groups and it's a real medical thing.
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, how many in the family,
but when you apply this exact same medical test to a group of people who have no family history of cancers, how many in the family. 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. 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.
There's also a culture isn't there about doing, right? So we, this not just related to this, but,
but I guess everything we've spoken about so far and most of the things you write about
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 something is going to be done. A label
is probably going to be applied and some form
of treatment in some form will be given. I think that is a maybe an unwritten expectation
that we might have of ourselves as well as doctors.
Yes, you're right. And I think sometimes for a patient, the satisfying consultation and
it can be satisfying for the doctor too, is where something is done and a label is given,
just reassuring someone isn't always feeling as satisfying.
But I think the bigger problem is that we are associating
high tech with better medicine
and modern tests with better medicine.
Essentially, medical diagnosis is a clinical skill,
as you know, like you would never give a doctor,
a neurologist a hundred brain scans
and then maybe a cursory history,
like this lady has headache, this man has,
and then say, give me a diagnosis, you just wouldn't do it.
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 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.
And then not even take humans out, have AI interpret and just give you the protocol or
whatever, you know, because we're moving into more and more of a tech world. But as I think about the potential
applications to technology and medicine and AI and all this kind of stuff, and I'm sure
there's going to be lots of really beneficial applications. I think you write about, as
I've read about how I think AI can read scans better than radiologists, I believe, or certain types of scans.
But you know, human beings are not machines.
No, and that what...
So an AI can read a scan better, but it cannot tell you if what is on that scan explains
what that person came into the room with.
And that's the problem that we're not getting with tests and rolling them out is,
listen, you know, there's lots of things are found on scans that have nothing to do with anything.
And you always have to be coming back to the clinical skill.
What did your patient tell you?
You know, did it sound consistent with what's on the scan?
So I really hope what's going to happen with AI and etc.
Is that it just means that GPs, and
I feel so bad for GPs and that I get a long time with my patients, they don't care very
long at all. What I'd love to see is that AI etc. takes those mundane scan reading jobs,
sorry radiologists, I'm sure it's very exciting, takes those kind of jobs and allows the doctor
spend more time with their patient. That's what I'm hoping.
That would be a real upside one in a sense. Going back to the brachyagine for a minute.
The brachyagine as you say is not deterministic, i.e. if you get it, it does not mean 100%
for certain you're going to get something. And it's not the same thing at all, right?
But if we just zoom out and look at these
as principles and what's going on here, there is of course a field of epigenetics, right?
And how our environment interacts with our genes. So let's go to type 2 diabetes. It's
a lot easier for people to get their head around it. A lot of people, and this is again,
speaks to the problem with labels and our perception. A lot of people will often say,
oh, you know, yeah, well, my dad had diabetes. Of course I was going to get it. Without realizing
that actually you may have a gene that gives you an increased likelihood, but it's still the inputs
into your life that will ultimately determine if you get type 2 diabetes or not. So even if all your family members have had it and you were able to, for you know, and yes, there's
many factors that go into this, but you were able to eat well and exercise well and have
a low stress level, whatever it might be, you're probably not going to get the type
2 diabetes. I think we're seeing in a lot of things, because you do even mention APOE4
and dementia. And when I spoke to Professor Dale Braddison
from the Buck Institute, who's done some incredible work with Alzheimer's, I think he said to
me that even though APOE4 is associated with an increased risk of dementia in the Western
world, I think he said to me in some African countries, it's not.
Oh, that's interesting. Yeah.
I.e. these genes are, they can show an increased propensity for something, but our lifestyle,
our environments, the stress we're exposed to, all these things also play a role, which
kind of takes away that empowerment piece.
If we say it's all genes.
I know Huntington's is a different case. It's kind of a hundred percent.
Yes. Except that, you know, perhaps it isn't because we've never done testing for Huntington's
disease in the general population. So even there, there are doubts, you know, so it's
we were kind of taking a test that we've done in patients who have a problem and we think
the exact same rules apply to people.
Of course, we're making gross assumptions.
And again, I'm a doctor and I do genetic tests because I deal with people who have, I mean,
I don't analyze them, I send my patients for them.
So you would think I would kind of really have, I should have a really good understanding,
but I learned so much writing this book from a geneticist about, you know,
these tests are every bit as hard to interpret as an x-ray or brain scan. So for example,
you know, there's a gene that does put increased people's risk of type 2 diabetes. If your
family has this gene and you have the gene, you have a very, very high risk of getting
diabetes. But I don't know if people will be familiar with the UK Biobank, which is 500, it's half a million healthy participants have given lots of samples and they're following
their health over time. And by looking at populations like that, they find there's loads
of people who have this diabetes gene who don't get diabetes. And these are people without
a family history of diabetes. So what that probably means is the family history people who are at risk, there's something
else in there.
Maybe it's their shared environment when they were growing up or maybe these other people
who don't get diabetes have a whole gene we haven't discovered yet that protects you
against diabetes.
Yeah.
The other thing we don't think about when we think of, oh, my parents had type two diabetes,
of course I'm going to get it. You know, because the assumption is that it's genetics, but
you know, there are probably certain behaviors in that family, which you may have absorbed
as a child, eating behaviors, you know, resolving your difficult emotions with food or whatever
it might be. And I say this with compassion, but we've got to look at this. There's other ways that these things can be passed on that aren't just genes.
The other thing with genetics, I mean, I don't know how familiar you are with
all these kind of new genetic companies direct to consumer. And, you know, so there's a thing,
for example, with caffeine, whether are you a fast metabolizer or a slow metabolizer? Okay, and the theory is that the genes will tell you,
the genetic tests will tell you that,
or if you're a fast metabolizer,
you process it really quickly.
So you might be one of those people
who can have a double espresso in the evening
and it not affect your sleep, right?
That's why I thought, okay, this is interesting.
And I love to experiment and see these things.
I'm exquisitely sensitive to caffeine.
Exquisitely.
But the genes tell me I'm a fast metabolizer.
And I'm like, so you would bet your bottom dollar or I would based on what I know about
myself.
Oh, I'm going to be someone who metabolizes this slowly.
But it isn't.
So I certainly you could say the test is wrong.
Maybe I need to corroborate
it with a different laboratory. Sure. But it raises questions in my head to go, how
much do we really know about these genes? That's my big question.
But we really don't, you know, and again, I'm not a geneticist and it was a real learning
curve for me. I spoke to geneticists who taught me so much. And the bottom line is that, you
know, we've decoded so little of the human genome that we actually know phenomenally little. I would really cancel
people. It sounds like, did you have a direct to consumer genetic test?
I did, yeah. Not to learn about myself. Because of what I do and how many people I communicate
with us on this podcast each week, I'd like to keep abreast of what's happening. And I'm,
yeah, sometimes I'll just go, yeah, I'm just going to do that just to get a sense of the playing field and what's
going on.
Yeah. I mean, I would say to people just be super cautious. I spoke to one woman and she
did the test and she just ticked the health box without really, you know, if you're getting
a genetic test in the NHS, you will see a genetic counselor probably multiple times before you have that test so you can understand all the implications.
But in these tests, you just tick a box.
Now in fairness to the companies, I should say, they do offer counseling.
There's a video you can play.
But you know what we're all like when it comes to ticking consent boxes and watching videos.
You don't always do it as thoroughly as perhaps you should.
And I spoke to a woman who discovered she had a cancer gene on a direct to consumer
test.
Now what people don't understand is that the methods used by some of the direct to consumer
companies, they're not clinical grade.
So they're not as reliable as the test that you have when you if you saw a geneticist
in the NHS.
So that's one problem. The other problem is that you cannot completely trust either a geneticist in the NHS. So that's one problem.
The other problem is that you cannot completely trust
either a positive or a negative test
because there's lots of different bracket genes,
for example, and they only test for some of them.
So a person might get a result back saying
they were totally fine,
but actually the test just wasn't very comprehensive,
or they'll get back a positive test
and because of methodological problems,
it's a false positive.
So ultimately, you know, they're not terribly reliable.
But the other thing I kind of need people to understand
when you take one of those tests is you're not just taking it for yourself,
you're taking it for your whole family.
You know, if you discover you've got, you know, an APOE4 gene
that suggests you're at a higher risk of dementia,
well then, you know, your brothers, your sisters,
your cousins, your parents, your children,
all of them potentially now have been drawn into this.
Yeah, you're bringing them into it.
Maybe they didn't want to even be brought into it
in the first place.
Yeah, you know, you're kind of taking the test
for your whole family.
And, you know, I spoke to one woman who tested
and discovered that she had two APOE4 genes,
which immediately told her parents
that they must both each have one. You know, they didn't need to test because they each
must have contributed one to her. That's a lot to do to your family.
The flip side, however, Suzanne, to sort of make sure we're being balanced is that some
people will argue, and maybe this again is personality dependent, I want to know. Because
if I know there are things I can potentially do with my lifestyle
or get stricter on to reduce my likelihood.
And I think that's for me at least that's very valid as well for something like that
where we know there are so many factors that we can potentially engage with if we have
the time and capability to that would reduce our risk of dementia. If
you have this, it may incentivize some people, whereas other people might go, oh, what's
the point of doing anything? I'm going to get it.
No, you're absolutely right. I mean, it is know yourself again. It's sort of because
there are advantages to knowing, you know, that you can decide to sort out your financial
future for your children, etc cetera, if, you know,
just in case, you know, it might affect your life decisions and obviously your health choices.
So I can completely understand why a person would want to know. But I guess what I want
people to do is just realize when they tick that box that, you know, all the implications
so they can figure out who am I, how will I respond to this, you know? Let's also talk about replacing our illness identity with a recovery identity. And again,
you're very sensitive with how you write about this, but I think, and I've certainly experienced
this, I've seen it many times where someone's illness becomes their identity and I can understand why as well. I really can
understand why, but it doesn't tend, in my experience, it doesn't tend to help you in
the long term. What's your take on this?
Yeah. So sort of, I think when we talk about illnesses as identity, people always kind
of think of behavioral conditions or autism or ADHD, but I've actually in the book described a
study that looked at people with cardiomyopathy. So cardiomyopathy, an inherited heart problem.
And they did an assessment of these people for how strongly they identified with their
illness and they call it engulfment. So some people were kind of engulfed by their 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 casualty presentations,
they had more symptoms than people with worse heart disease.
So it actually, you were more symptomatic if you identified very strongly with cardiomyopathy than you were
if you had worse heart disease or even 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.
And it gets in the way of recovery.
You know, if your illness is your identity, then how do you move forward?
Or if you're part of a group who also have that illness and your belonging within that group
is predicated on you having that illness and talking about that illness, well,
then how do you move forward?
Yeah, there's this real tension, isn't there?
Like, let's say having a label, right?
A label, a diagnosis can make you feel validated.
You go, yes, I knew there was something wrong.
At the same time, it could also potentially trap you and make you think that's the entirety
of who you are. There's like a tension there.
There's a tension there with your potentially for some people where having this illness
means I've got this strong community support, but I could only be part of this community
as long as I have this illness.
And it's kind of so easy answer here, isn't it?
But there is this kind of fine tension we have to navigate. Yeah, you have to believe, you have to be able to visualize recovery to recover.
I wrote the story of a professor of infectious diseases called Paul Garner.
And during the COVID pandemic, I mean, he's an infectious disease specialist.
So he got COVID and because of his specialist area of medicine, he thought he knew what
would happen next.
He thought, well, I'll be sick for a couple of weeks and then I'll get better.
But he didn't get better.
His symptoms were persisting for weeks and he found this quite disorientating as a specialist.
His belief system was always just that you get a viral infection and then you get better.
So he began researching on the internet and he found a lot of other people who had long COVID
who all were in the same position as him, they were not getting better.
And he became very integrally involved with the group and they all talked about how you
had to learn to accommodate your symptoms rather than trying to overcome them.
So it became a sort of a group that was very intent on the idea that you didn't do too much
and that you paid attention to your body and paid attention to your symptoms.
But because he was a kind of research doctor, he thought, okay, I see that this is actually
making me feel a little bit better, but it's not helping me recover.
So I'm going to look for other types of recovery.
And he found another group who also had similar chronic symptoms
after a viral infection, but they were called Recovery Norway.
So they were based in Norway.
Their group was centered around recovery.
The other group was centered around living with the difficulty of the symptoms.
And as soon as he encountered this recovery group,
and they helped him to see his problem
differently, you know, he stopped checking himself for symptoms and worrying about the
things he couldn't do.
And shortly after meeting that group, he made a full recovery.
So kind of moral of the story is that, you know, you do not everything is recoverable,
of course, you can't recover from everything, but you have to have an idea what recovery
could look like if you're going to recovery.
And if illness is too central to your life and too central to your identity, that might
be hard.
Yeah, it's kind of interesting.
You know, the first time I came face to face with this illness identity that I can remember,
at least, is in 2015.
And at the time I had this BBC One documentary series called Doctor in the
House, where I went and lived alongside families for four to six weeks who were sick. And there
was a lovely lady called Nicola. And actually her case speaks to so many of the themes in
your book actually. So she had fibromyalgia. She had basically accumulated diagnoses, multiple
diagnoses from multiple doctors over her life. And to the point where when I see her for
the first time, she can't work. She can't even walk, I don't know, a hundred yards.
She's exhausted. She can't be the mother to her children the way she wants to be. And basically she has a diagnosis of this. I think
she had fibromyalgia, ME, irritable bowel syndrome, depression. There was, there was
10, but I can't even remember them now. There were 10 different diagnoses. And I was, I
remember trying to get us, get my head around this case thinking, what would happen if we
just put all these
labels to the side for a minute? I just could pretend there's no label here. And I went
through this with Nicola. We did this analogy with a train set and we got rid of all these
labels one by one and said, Nicola, for let's see, let's start from scratch. Let me just
focus on you and let me see if I can help create health and focus on the creation of
health in you.
Quite a controversial concept when we're used to diagnosing people, but you know, I'm not
kidding you, after six weeks she was completely pain free for the first time in 10 years.
When I first saw her, she was on 20 pills a day. So, she's on 20 pills a day, right?
Two years after I first saw her, she was on zero pills a day. So that
six week period I spent with her, one of the things I think I helped, you know, I don't
want to take credit for this, like ultimately I believe patients get better, right? I was
just provided that kind of environments and I helped her believe in herself. I helped
to believe that that, you know, recovery was possible, that it was possible to try different things. And it really, it's a remarkable
story that shows the power of when we just park the labels for a moment and give people
the possibility of recovery, what can happen. But the point I was trying to make relating
to this illness identity is when that show came out, Susan,
and you know, about five million people watched it and yes, there was loads of positive comments
on Twitter, but then I started to get viciously attacked by a certain community and then I noticed
something. I noticed that everyone who was attacking, and I wrote about this in my latest book, I noticed that they all had handles. Fibro Tash, Fibro Jane, Fibro Sally. And do you know what? Instantaneously
I was like, oh, I get it. It's too much. But actually I did turn around and have compassion
because I thought, oh, I get it. Your whole identity as a human has become your illness.
Do you know what I mean? Which I think speaks to these ideas.
I mean, I've noticed that also with people on social media, with their bios are always
about their illness and their names are about their illness. But the difficulty, you know,
the bravery of that woman that you helped is incredible. Because if you do get better, you have to
live with the possibility you could have got better 10 years before. You know, there's
a lot of really hard psychological humps to get over to get better.
And it can be hard to get better as well.
Oh, not everything is recoverable.
Not everything is recoverable and it can be challenging. And, you know, Nicola had me for six weeks going through everything with it.
That's not a practical solution for people.
No.
Right?
Hadley Freeman, the journalist wrote a biography recently, I think it's called The Good Girls
and it was about her fight with anorexia.
I mean, she's such a successful lady now, you would never tell that when she was a teenager,
she was hospitalized for long periods with anorexia.
But she described something very powerful in her book in which, you know, for a long
time she was in hospital just with other people who were very sick all the time.
And she had to suddenly one day look around and just think, okay, I'm going to imagine
a different kind of future.
Again, yeah, listen, everyone, illnesses,
we can't all overcome them,
but if you want to overcome it at all,
then you have to imagine
what a different kind of future would be.
Actually, Ellen Langen, is that her name?
She said something to you
that I thought was really interesting,
which was she was talking about people with chronic pain
who were in pain all the time. And she kind of said to them, well, are you in pain all the time, like every
single moment and start paying attention to the moments of the day when you're not in
pain. I found that so profound.
It is because what that does for people, right? When you, when you tell yourself, I've always
got this pain. Oh, I've always got it, right? As soon as you break
through that story, you go, well, I've got it most of the time, but I don't have it all the time.
In some ways, that's one of the most profound realizations. You just start to shake the
foundation upon which that identity is built. It's pretty fascinating.
When she said that, it was so simple, but I still kind of went, what?
When she said that, it was so simple, but I still kind of went, what? You know, it was, because it was such an amazing insight.
It's so simple and yet so important.
So profound.
Yeah, absolutely.
Suzanne, listen, I could talk to you about this for hours.
I think we've not even scratched the surface of what's in your book.
There's so many powerful ideas, you know, the kind of the over medicalization sometimes
of basic human struggles, expanded definitions
are turning millions into patients, diagnoses are becoming a social identity.
We've covered some of that.
You know, we're medicalizing normal entire life stages.
And then we didn't cover this today, but you know, I've even spoken to people on this podcast
before who call aging a disease.
You know, and it's interesting and I understand their rationale for doing it,
but we are at risk of medicalizing at normal, entailized ages.
And also this powerful idea you write about that medicine in some ways might be fueling perfectionism, right?
Which is really powerful.
Look, there's all kinds of things in your book for people to get stuck into.
I've got to say, I believe some people
will push back at some of these ideas, 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 diagnosing at this rate, very soon
being well will be in the minority.
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.
Yeah. Yeah. And that's one of the reasons, I love a lot of these ideas.
I've been very aligned with some of these concepts, but I also believe, as you say,
we have to be having these conversations.
It's so important.
What is the kind of main take home you want people to get from this book?
Yeah.
So what I really would love is I want for young people, I want us to be able to help
their struggles, but still leaving them with kind of any kind of future for them.
You know, I started the book with the story of Abigail and Stephanie, and Stephanie, the mother who had the genetic diagnosis at the age of almost 50,
you know, I said, do you regret that it took so long to have that, get that diagnosis?
And she said no, because she had a free life. She allowed herself any
kind of ambition. She believed anything was possible for her and she really valued that.
So I want us to think about labels and diagnosis a little more carefully so that as much as
possible we allow people to have that kind of free life with any kind of future.
Yeah, love that. And for any doctors who pick up this book and I really, you know, I think
it's definitely a book for the general public, and I really, you know, I think it's definitely
a book for the general public, but I think a lot of doctors would be very well served
to read this book because it will, I think, provoke some very important questions for
them to ask themselves. Some will be comfortable, some might be a little bit uncomfortable,
but nonetheless, very, very important. What would you like doctors to take away from this book?
Yeah, I'd like, you know, as I'd like, so a patient, I spoke to a patient who had seen
private doctors who did loads of tests that I would consider irresponsible, you know, she got
excessive tests, excessive medical care, I thought it was terrible from people who I felt were sure
were profiting from her.
And I asked her, I said, listen, you know, every person I spoke to for the book, I said
to them at the end, what's the message you would like me to get a course for you?
And she said, I want you to learn from my private doctors.
Now, this was a little shocking for me because I felt like they had given her not particularly
great care.
But then after I thought about it, I realized that she did get something very important
from them, forget the tests for a moment.
What they really helped her with was they listened to her,
they made her feel believed, they made her feel cared for.
And yes, perhaps their practices were unconventional
and I would not supporting that.
But we as doctors need to learn that,
that there's a quality diagnosis
comes from a good consultation and time spent with the doctor.
And I think we need to not, you know, rely so heavily on investigations and modernity
and high tech and remember that good medicine is in person, time spent listening and hearing.
And of course, that's very difficult for many doctors in the current system, but it also
going back to medical school, what did we all get told? A good history.
All the time.
You get the diagnosis from a really good history. And the truth is you do. You do. You pay attention,
you listen carefully. The patient will tell you most of the time, everything you need
to know. I really believe that.
Yeah, absolutely. And I do honestly believe that, you know, doctors have the same, most
doctors have the same concerns. I'm the person who's saying this out loud, but I don't believe
I'm alone in this at all.
I feel like I'm so lucky. I'm a specialist doctor. I could, if it needs, if I have to
spend an hour with the patient when I meet them the first time, I can spend an hour,
you know, imagine having to do that same skill in five minutes or 10 minutes. I feel for
GPs and I really hope that when people are developing the health service that they say,
let's use AI to free up time so these doctors can do the job they were trained to do.
Yeah. Well Suzanne, listen, I think it's a very thought provoking book, a very important
book. Thank you for making time to come on my podcast.
Thank you for having me.
Really hope you enjoyed that conversation.
Do think about one thing that you can take away and apply into your own life.
And also have a think about one thing from this conversation that you can teach to somebody
else.
Remember when you teach someone, it not only helps them, it also helps you learn and retain the information.
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