Why Can’t Anyone Tell Me What’s Wrong? | Alexandra Sifferlin
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What is the main topic discussed in this episode?
I am not saying that physicians are bad at diagnosing. They get it right 90% of the time. However, if you have 1 billion doctor's office visits a year, 155 million visits to the emergency room a year, you can quickly see how even a low rate of error can still affect a large number of people.
So that 10% adds up to millions of people every year living with a missed, a delayed, or a wrong diagnosis. Maybe you're even one of them. Maybe someone you know or you love is one of them. Well, my guest, Alexander Sifilin, spent years inside this problem, talking to the country's best diagnosticians, tracing families who waited decades sometimes for answers, and mapping exactly where the system is breaking down and what to do about it. Her book, The Elusive Body, Patients, Doctors, and the Diagnosis Crisis, is the most clear-eyed account that I've read of what's actually happening when medicine can't tell you what's wrong and what you can do about it. I'm Jonathan Fields, and this is Good Life Project.
And I want to start with a phrase that stuck me cold.
What is the diagnosis crisis and why does it matter?
We'll jump right into that after this short break. So we're having this conversation, I think, a really interesting time. We're a couple of years on the tail end of this big global pandemic where a lot of people were deeply reacquainted with their own physical and psychological well-being. A lot of people suffered. And a lot of people started asking big questions. And also a lot of people, I think, became a lot more attuned to what was going on in their body. They kind of Any little thing that was happening, they started asking, what is this? You talk about something that you describe as a diagnosis crisis. What do you actually mean by that?
How does a diagnosis provide emotional and social validation?
And why does it matter so much now?
So by diagnosis crisis, I mean that there are millions of Americans who are living either without a diagnosis or they have experienced some kind of diagnostic error. So that could mean a delayed diagnosis. So you've spent a very long time, sometimes years, without a diagnosis. So it just took much longer than maybe it needed to. That could be a missed diagnosis. So you're sort of living undiagnosed or something wasn't caught early enough. That could also mean a wrong diagnosis. So you were given a diagnosis of pneumonia, turned out to be heart failure. It was an incorrect diagnosis. And There are millions of people who have experienced this, and research suggests that nearly everyone will experience one diagnostic error in their lifetime.
And I think what's important about it is your diagnosis is the most important piece of medical information that a person can receive because it informs everything else. Without a diagnosis, it's hard to get the best treatment for your health condition. It's hard to get insurance coverage for treatments or other appointments. You can end up spending a lot of time and money going from physician to physician, clinic to clinic, trying to get answers. And it's also just a sort of baffling experience and frustrating experience to feel like you're suffering without answers.
Yeah. I mean, you just shared the stat that the typical person, I guess, will have at least one misdiagnosis or missed diagnosis, um, and their experience. And I think we all kind of feel like, all right, if it's something small, no big deal.
What lessons can we learn from the Proctor family's experience?
You like it's, it's this bug versus this bug and we'll get over it. But when the stakes start to get higher, you know, when you're walking through each day, suffering significantly and not knowing what's going on, um, This could be really devastating. I mean, it's, you know, beyond naming, you know, an injury or an illness saying like, okay, so we know what this thing is and like, here's what it is. I mean, what does a diagnosis actually give a person emotionally and socially and practically?
There's this sociologist, Sarah Needleman, who says that a diagnosis gives you permission to be ill. And basically, what she means by that, or how I've interpreted it, is... A diagnosis provides something sort of just beyond the code for insurance coverage, let's say, which is very important.
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Chapters
8 chapters
1
What is the main topic discussed in this episode?
0:00–1:06
2
What is the diagnosis crisis and why does it matter?
1:06–1:53
3
How does a diagnosis provide emotional and social validation?
1:53–3:57
4
What lessons can we learn from the Proctor family's experience?
3:57–5:57
5
How do the best diagnosticians approach their work?
5:57–7:41
6
What role does AI play in improving patient interactions?
7:41–9:47
7
What should you do when multiple doctors can't find an answer?
9:47–12:08
8
How can patients advocate for themselves in the medical system?
12:08–57:34
Speakers
3 identifiedMore from Good Life Project
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