Program: What the hell is wrong with me?

Shelby Traynor: Norman, what the hell is wrong with me?

Norman Swan: If you don't know, how am I going to know?

Shelby Traynor: Spoken like a true GP.

Norman Swan: Well, I've never been a GP, it's too hard a job. But it's a really important issue, which is that when people go to their doctor with symptoms they think they're going to get a clear diagnosis, and sometimes they're not, and this is a source of both conflict and frustration and worry. So I've got a symptom. Is this something serious? Do I have cancer? Do I have heart disease? What's going on? And in the end, it could be that there's no physical diagnosis to be made. You've got a pattern of symptoms. What's going on? 

One person with a strong interest in this area is Gillian Deakin, who's a general practitioner and has researched this area, and she's the author of What the Hell is Wrong With Me?, in fact, she co-wrote a piece in The Lancet on this recently. So this is really about how to recover from pain, fatigue, weakness and other undiagnosed symptoms which don't have an easy label. I spoke to Gillian recently. 

Gillian Deakin: Look, I've been a GP for over 40 years now, and every single day of my working life, I have people coming in with symptoms that simply have no medical diagnosis.

Norman Swan: Every day?

Gillian Deakin: Every day. It's much, much more common than people realise. Some people are left with symptoms that go on for weeks, months and even years, and sometimes these symptoms are very, very disabling.

Norman Swan: So what sort of symptoms are we talking about? 

Gillian Deakin: Well, look, the symptoms I'm talking about really range right across the board, and nearly every single symptom known to humankind can be a functional symptom, so this is the problem. You could even go so far as collapsing, having seizures, losing the use of a limb, having a disturbed gait. More commonly, people get headaches, disturbed gut, upset stomach, itches, rashes, things like that. Fatigue is a big one.

Norman Swan: Okay, I mean, you're calling them functional disorders and that used to be code for…I mean, in the 19th century people like Freud called these hysterical disorders. Some others have called it psychosomatic disorders, and then the immediate assumption by the person with the symptoms is, 'Well, Doctor, you're denying the existence of these symptoms and you think it's all in my head, or you're demeaning me, because you really think it's hysterical, you don't think it's real at all.' And the big one is fatigue, where people with fatigue feel that their situation is being denied and possibly makes them worse, having that feeling.

Gillian Deakin: This is why I've written the book, because we have to resolve this conundrum, because doctors often avoid giving people any diagnosis when they have these symptoms. And the reason is they just don't want the consultation to veer off into kind of acrimony. We're talking about a physical response within the body, genuine symptoms. They're not faked, they're not imagined, they're as real as the symptoms would be if you had a medical illness. I want to make that very clear, that's the first thing. So it feels real because it is real. 

The body still is perfectly intact, everything's healthy in the body, but it's not functioning well, so that's why it's called a functional illness. The analogy I use is like a computer. Your computer might stop working. If there's a hardware problem, like the hard drive is blown up, or something, you've got to replace it. That's like a medical condition. But if the computer just needs a reboot or reprogramming, a software problem, that's more akin to what is a functional condition. So we need to learn how to reprogram the body so it works normally again. 

Norman Swan: But here's the problem. I mean, I personally don't want a GP who's trigger-happy in terms of functional disorders, because as medical knowledge expands…for example, non-specific bowel symptoms can be the first symptoms of pancreatic or ovarian cancer. So I don't want a GP who jumps to the conclusion that I've got nothing; 'Don't worry about it, this is just irritable bowel syndrome.' And then a year later, I'm dead, or I'm diagnosed with an advanced cancer. 

Gillian Deakin: That's exactly right.

Norman Swan: On the other side you've got GPs who fear this and fear missing something, and you get on a diagnostic merry-go-round, in fact you use that word 'merry-go-round' in your book, where the doctor and the person themselves are so terrified of missing something physical, you don't know when to stop in terms of investigations. Well, just try one more thing or one more specialist, and it never ends, and nobody comes to the conclusion. How do you know when to stop and say; 'This is something functional and we need to take this seriously as a software problem between the body and the brain, or the body and the mind, and we need to sort this out because your body's not working properly, but it's not something that we can operate on'?

Gillian Deakin: One of the things I've written in my book is how to pace that investigative process and how to build a relationship with the patient with the symptoms that they keep going back to the same doctor and keep getting evaluated. Because, as I said, a lot of these symptoms do go away within a reasonable period of time, so watchful expectation is actually a form of time-honoured treatment. And the whole thing is it has to be watched, you're quite right. If there's any progression, further testing needs to be done. That's the first thing. The second thing is we use the term 'red flags' to look for symptoms that show something more serious is afoot. So if there's red flags, doctors definitely should be progressing with the investigations.

Norman Swan: So this is things like bruising, bleeding, loss of weight, unexpected and unplanned loss of weight, things like that.

Gillian Deakin: Exactly. What happens, though, unfortunately, is that people come in, doctors do their due diligence, rule out most known physical conditions, but then the patient is not given a diagnosis, and the patient wanders off to the next doctor, and the whole process can start again and it's very unsatisfactory. So what I'm hoping to achieve is that patients are given; look, you appear to have a functional condition, we're going to see you back in an agreed period of time, and you're going to keep track of the symptoms, and in the meantime we're going to manage it like this. And if we get in early, the treatment is effective.

Norman Swan: But you're talking about a variety of problems. You're talking about fatigue, you're talking about pain, you're talking about problems swallowing, you're talking about abdominal symptoms, and you describe this in your book as a stress response. What evidence is there that it's a stress response? Because, again, this is something that can get people's hackles up.

Gillian Deakin: Yes, I don't actually say it's a stress response, I say it's a body stress response, and I think that's a very important distinction. Cold weather is a stress upon the body. It's not the way most people think of the word 'stress'. A vaccination is a stress upon the body, and it is. Surgery is certainly a stress upon the body. The body needs to always respond to whatever happens to it, but extreme stressors can trigger an excessive and persistent response which causes all manner of symptoms. 

Norman Swan: So what are those stressors? What are the predisposing factors to having symptoms which are functional, where there isn't an easy fix with a medication or a scalpel?

Gillian Deakin: We think they're very diverse; genetics, epigenetics, nutrition, lack of sleep, competitive sports. Yes, past trauma, yes, stress, yes, anxiety and depression, those factors do come in, but only in about 50% of people they have that. But the rest of us who get functional symptoms don't have any overt stress, and people are quite right to object to doctors insisting on that, and this is the trouble, in a 15-minute GP consultation, to collect all the possible risk factors that are going on in someone's life is quite complex and difficult. This is why it's much better if people have an ongoing relationship with their GP where this sort of information's already been collected. 

Norman Swan: If you've got one of these symptom sets, and you think you've had the tests that really explore every avenue, but you don't know what the cause is, how can you, as a GP, start treatment? 

Gillian Deakin: You start to treat it in the time-honoured fashion that's been established. And I use Professor Kozlowska's work out at Westmead to do this, she talks about the body stress systems, and we seek to resolve and settle those back into normal. The basic way of doing that is get adequate sleep, make sure your diet's good, and exercise in a safe fashion. And that's the starting point. But then, of course, as you say, with swallowing we might use speech therapists, gait disturbance, you use a skilled physiotherapist who has knowledge about functional disturbances. There's a lot of means that we can use to address some of the symptoms. I've got patients who have symptoms we never resolve, but they don't worry about them. They have to put up with them, but they don't worry about them, and that itself is a big help.

Norman Swan: Which is, in fact, the modern approach to chronic pain, not promising to solve the problem, and in fact tinnitus is another one, you learn not to allow it to fill your life. 

Gillian Deakin: That's right. And when people are left undiagnosed, it's very hard for them to accept that. So people can take it to the doctor. If they walk in and say, 'Do you think my symptoms could be functional, Doctor?' I think that would be a big sigh of relief for the doctors to say that people are open to that idea, and then the relationship can move forward in a more productive fashion. 

Norman Swan: Some of the angriest responses we get to the Health Report are from people with functional disorders who feel that they've been demeaned or we're blaming it on something in the brain, and I've always assumed that this is the result of trauma from the medical system, that they've been demeaned so often, and now they think they hear it on air. 

Gillian Deakin: That's right, and that's why I object to the word, using 'stress'. I don't use it in the book. I talk about the body reacting to stressors, but I don't use the word just simply 'stress', because there is an implied blame for that, and we have to learn to move forward with that. We won't always have an explanation. I wish we did, I wish we had a better explanation, but my book is a start, and I'd love people to just try some of the things I've mentioned and go forward from there.

Norman Swan: But you've got to change doctor's attitudes. 

Gillian Deakin: Yes.

Norman Swan: When you talk to GPs about this problem, they have a term…so just to be transparent, they have a term for patients like this, and they're called heart-sink patients. Your heart sinks when they walk into the surgery. And that's more a reflection of the helplessness of the doctor, and they don't like looking after them and they can see this long consultation and the waiting period in the waiting room going up and up and up. How do you argue those doctors out of the heart-sink point of view to a therapeutic approach?

Gillian Deakin: Well, the good news is that in Germany all the doctors receive guidelines on how to manage functional symptoms, and once we start to follow and treat these people just like any other patient with any symptom, that's the first step, that these patients all deserve the same sort of approach as any other patient. 'Here's your diagnosis. This is a treatment we're going to start with. Let's see how it goes. Come back and tell me how it went.' This is what we do with every single patient, and these patients deserve that just as much. But that won't happen until patients accept that functional conditions are a thing, and I can only say they are because I've treated them, I guess, hundreds of patients, I haven't counted them, but today I had two or three patients in my room who had classic functional symptoms, and my patients are happy to accept that and accept the treatment, and it's quite a productive encounter.

Norman Swan: Gillian, thank you very much indeed.

Gillian Deakin: Thank you very much, Norman.

Norman Swan: Gillian Deakin, whose book is What the Hell is Wrong With Me?.

Shelby Traynor: A part of me wonders if some of these things that are being diagnosed as functional disorders might eventually have a diagnosis down the track. There's a lot that we don't know about health.

Norman Swan: That is absolutely right, and I was trying to make that point with Gillian, and she accepts that at some point you might find there's a clear cause, and that's the whole debate and anger in the chronic myalgic encephalomyelitis community, they're really angry when they're told they have a functional disorder because they think it's a physical disorder with a physical cause that just hasn't been found yet. And they've got justice on their side, because with long covid and the studies of long covid, we're finding abnormalities there which may also apply to chronic fatigue syndrome, which is to your point.

Shelby Traynor: We may just not know the pathways of these things, but it does go to the point that you guys also made, which is you don't necessarily need that name to start treatments that you know will work.

Norman Swan: Yeah, and this is the problem with some of these areas, is if you hang in there, hang in there, waiting for something new to be discovered, you're missing the opportunity just to get a bit better, or be able to cope better with the symptoms rather than a cure.

Shelby Traynor: Yeah, it's a tricky situation, though, for patients and for doctors.

Norman Swan: It is.