SPENCER: Suzanne, welcome.

SUZANNE: Thank you for having me.

SPENCER: Do people misunderstand long COVID?

SUZANNE: Yes, I think there is a very neglected part of the conversation when it comes to long COVID. I think long COVID probably encompasses lots of different conditions, one of which probably accounts for the greatest number of people and has been talked about the least. I think that it is absolutely inevitable that people who are in intensive care with severe COVID — I worked in intensive care during the pandemic — that those people will have lasting symptoms. They were very sick, they were on ventilators, multiple drugs, and it would be inevitable they would have long-term end organ damage as a result of the seriousness of their illness that could be interpreted as long COVID. It's also inevitable that if you are in a viral pandemic, after any virus, you can get a post-viral illness. That's well recognized and has been for a very long time.

SPENCER: What does that mean, a post-viral illness? Just to clarify that.

SUZANNE: What that really means is that most of us bounce back from a viral illness in a couple of weeks, but some people can have a sort of chronic fatigue-like illness, which lasts maybe six months, or for some people even longer than that, and that's well recognized after viruses. We don't understand what the mechanism for that is, but it's usually self-limiting. Most people will recover. I think these two explanations account for a percentage of people with long COVID, but I think there's mounting evidence that a much larger number of people who have long COVID probably have what I would refer to as a psychosomatic condition. I want to make it super clear from the outset, I do not mean that they're making it up or that they are imagining the symptoms. Psychosomatic conditions are real physical symptoms that are incredibly disabling, but they arise more from psychological mechanisms, from how ideas about illness and fear of illness, and how we feel about our body change brain connections to produce symptoms, rather than arising as a direct result of the virus. Let me give you an example of that. I've even used myself as an example. I don't have long COVID, but I had multiple psychosomatic symptoms during the pandemic. When the pandemic started in the UK in February, March 2020, I was working in a hospital, and we were absolutely terrified. We were listening to stories coming out of Italy where doctors were now caring for colleague doctors in the intensive care unit. We were told that a percentage of us would end up in the intensive care unit, so we were in a really frightening situation. At the same time, we had the government instructing us to search our bodies for symptoms, and our entire lifestyles had changed. We were eating differently. We were sleeping differently. In that context, I noticed multiple bodily changes that I interpreted to be COVID, but every time I was tested for COVID, I didn't have COVID. What I'm describing here is a perfect storm for producing psychosomatic symptoms. If you tell people to examine their body for symptoms, you will find them, because our bodies are awash with funny sensations, and every time we go up the stairs, our heart rate goes up or our breathing changes. There are loads of bodily changes to be found. If we are asked to search for them, and we're in an anxiety-provoking situation, that activates the fight or flight system, the heart goes faster, the breathing changes. Not only are we looking for symptoms, but now we've got a body activated by anxiety, and then somebody comes along and announces on Twitter that they are predicting that millions of people in the future will be disabled by this concept of long COVID. That just reinforces our belief that the symptoms we are having could potentially be very disabling and lasting, and I think that has had a very powerful effect on a percentage of people. The concept of long COVID arose on Twitter. It didn't arise out of science or any medical establishment. Somebody on Twitter, I think it was May 2020, so two or three months into the pandemic, said that they believed that this concept called long COVID existed, and that there would be millions of people disabled by chronic symptoms. We hadn't really had time, even then, to make such a statement. That went viral around the world very quickly. When you have an anxious population who are suffering — and we really were suffering during that time — long COVID was a convenient explanation. Scientifically, if one is looking for evidence that long COVID is a psychosomatic condition, it's a different population of people from those who had COVID. People who died of COVID were frail people, elderly people, people with diabetes, people with comorbid illnesses, whereas people with long COVID tended to be extra healthy before the pandemic, and they were more women and younger people. They are two distinct populations, and there have been numerous studies that show that an expectation of symptom severity, a feeling of loneliness, and pre-morbid psychiatric symptoms put you at risk of long COVID. I'll finish by saying again that none of this is meant to dismiss how severe long COVID is. I'm a doctor. I'm a neurologist. I work with people who have seizures, paralysis, blindness, some of the worst disabilities imaginable that have a psychosomatic origin, so that shouldn't be seen to diminish the severity of the symptoms, but it's sort of a pity we didn't discuss it more to allow people to potentially get better by knowing that.

SPENCER: I think psychosomatic illnesses are very important and misunderstood, and so we'll get into that more about what that really means and what it doesn't mean, and misconceptions about that. Before we do, I just want to note that when long COVID was first identified as a concept, you started to see all these different studies that were asking people about, "Okay, did you have COVID? Did you have any symptoms afterwards?" Then they started getting a little more rigorous, where they would at least look for a COVID diagnosis, and they would look for new elements of their symptomology that were not there prior to the diagnosis but started after. When I started looking at these studies, the thing that really blew my mind about them is the lack of criteria. They basically counted anything that you had after COVID and didn't have before as a symptom of long COVID, anything from fatigue to anxiety to headaches. These are things that so many different diseases cause, and many mental health challenges cause, so non-specific. I'm curious, what was your reaction when you were seeing this research come out?

SUZANNE: This was a really typical example of how a kind of psychosomatic disorder spreads, exactly as you say. There was no definition for this. The only thing you had to have to have long COVID were symptoms during the pandemic, and that meant that anybody who was suffering could potentially have this diagnosis. I actually even attended one meeting where people were being asked to go to their GP and ask if they had long COVID, even if they had no symptoms. You didn't need a particular kind of test. It wasn't associated with anything. It was a completely unanchored concept, which meant it just got out of control very quickly. Because we were in a pandemic, I don't think there was really time to do the research. A lot of the early studies did exactly what you were saying, which is they asked people about their symptoms, but they didn't ask people who didn't believe they had COVID about their symptoms. They didn't have a control group where they compared people, and when the later studies came about, and they actually had a control group, they discovered that even people who had not had COVID were extra symptomatic during the pandemic. We were all suffering in different ways, partially through stress, partially through the change in our lifestyles. We weren't exercising, we were drinking more alcohol, we were eating unhealthily, and we were anxious. Our lives had changed, and we were suffering, and long COVID was just a very non-scientific concept, which scientists kind of followed. This is a problem; sometimes we follow the social pressure without reining it in and saying, "Let's do the science first." In this instance, science kind of followed the social contagion rather than trying to contain it.

SPENCER: I also want to put a fine point on what you are saying, because I interpret what you're saying as someone getting COVID, and then having new symptoms they never had before, and those persist for months, let's say. There are four possibilities. One is they could have had very severe disease, like they were on a respirator, maybe they had organ failure due to the virus, or whatever. We expect those people will have side effects that could last a long time from that severe disease. The second is this post-viral condition, which we know affects many viruses and is present among many viruses. You can feel fatigue and malaise for a long time after a virus. We don't fully understand it. Third, and I think maybe you didn't give it this name, but I think you're referring to a sort of misattribution. Maybe they just happened to get something else, some other condition that started cropping up, and they're now misattributing it to COVID because they happened to get COVID around the same time. I think this is a really common thing to happen, as you get some other thing crop up, and you're misattributing it. But then the fourth is psychosomatic, so that's saying it's real, but it's a psychosomatic disorder. Did I cover the full space?

SUZANNE: Yeah, I think that absolutely captures it. Psychosomatic conditions are so stigmatized; people really don't take them seriously. I consider them to be some of the most difficult things to suffer with, with symptoms that are hardest to treat and most stigmatized. But that is not the public perception. The public perception kind of mixes them up with malingering. Malingering is pretending to be sick for gain. They assume that it must be something psychosomatic conditions are things that happen to people who are psychiatrically troubled in some way. But actually, psychosomatic conditions can happen to anybody. They really are about the attention you pay to your body, misunderstanding symptoms, and reacting to them in a certain way. I always give examples like, you can change how efficient your body is with the tiniest thing. If you think of a footballer, some footballers can take penalties or kicks in front of audiences; some can't, because you can change the efficiency of someone who's highly efficient just through scrutiny or anxiety. Our bodies are really vulnerable to expectations, anxiety, and the attention we pay to them. You don't have to be a psychologically vulnerable person for that to happen; you just need to be in the right circumstance. Unfortunately, because we tend to mix these disorders up with people, there's an implication that someone's mad or faking. It's quite a hard conversation to have, and I think that really affected our conversation around long COVID. I listened to many news broadcasts in which people speculated about the multiple causes, but they never even raised this one absolutely obvious potential cause, which was a psychosomatic cause. Perhaps knowing that if we could get past the stigma could have given people relief.

SPENCER: Before we get into the details of psychosomatic illness, how do we know it's not some fifth thing? There's not some special attribute of COVID that leads to this particular syndrome that's not just a normal post-viral syndrome? It's not misattribution; it's not psychosomatic.

SUZANNE: Yeah. I think that's a really reasonable question. Obviously, we've been through something we've never been through before, so who's to say it didn't provoke something that we've never encountered before? But I think there's very compelling evidence for this kind of psychosomatic theory. First of all, there's a really big disparity between what tests show and the degree of symptoms. If you look at people who have the biggest breathing problems, they have a great amount of difficulty breathing, yet you are seeing the most normal tests in those people. Obviously, doctors deal with unexplained diseases and illnesses all the time. I've been a doctor since the early 1990s, and before we had tests, we constantly couldn't diagnose people. Before we had MRI scans and genetic tests, we were constantly not diagnosing people, but we knew they had diseases because we could see the objective evidence in the tests or even in their physical findings. With a large number of people with psychosomatic conditions, there is a great disparity between the degree of symptomatology and the objective findings on the clinical examination or on the tests, and that's really one of the big hallmarks of psychosomatic conditions. Before we knew that HIV existed, we could see that people had AIDS, and we knew that there was something very significant wrong with them. We just didn't know what it was, but we had the hallmarks of disease. Similarly, before we figured out COVID was COVID, we could see the interstitial lung changes. We are not seeing those kinds of objective evidence in long COVID. I think it's also interesting to look at some of the studies that were done. For example, one European study followed healthcare workers through the pandemic, and they discovered that people who had an expectation of symptom severity were more likely to develop long COVID. That's really how psychosomatic conditions work. They're about how your body behaves, how you expect it to behave in a certain circumstance. If you think about the placebo effect, a tablet will make you feel better if you believe it will make you feel better. This is the nocebo effect. If you expect that contracting a virus will lead to this type of long-term disability, then there is a small chance that that could actually happen to you. We can see that pattern in the research studies that have evolved in the latter stages once there was time for the science to be done.

SPENCER: It might be hard research to do, but I imagine at least in theory, you could take people with long COVID and try to divvy them up into these boxes and say, "Okay, did they have severe disease or not? Do they seem to have a post-viral infection? Could they be misattributing?" Then psychosomatic, you could see if anything's left over right. Once you've gone through all those cases, are we down to essentially nobody?

SUZANNE: Yeah. I think it's quite hard. Yes, I think you can do that. I think probably a large number of people would fall into very obvious boxes because we can see people who've been in intensive care, the lung damage they have suffered, or the kidney damage they have suffered, that will be pretty measurable. I think there will be a large group of people with psychosomatic conditions in which those really big hallmarks, like the huge disparity between objective findings and subjective symptoms, will really be a hallmark for those. We will have people in that middling group. It's a little like the post-viral fatigue syndrome that we mentioned earlier. That's still very poorly understood.

SPENCER: But that's not psychosomatic. It's understood that that is...

SUZANNE: Well, I think even that might have a psychosomatic element to it. I think the answer to that is, I don't know the answer to that. It may be that somebody has a severe viral illness, and then they react psychologically to that illness. The illness is just a virus. It's a disease like any other one, but there's something in the way they respond to that that propagates and worsens their symptoms over time. The more you rest, the less you're able to do. I wouldn't pretend that I knew the cause for every post-viral syndrome, but it is possible that even a percentage of those with the commonly seen post-viral chronic fatigue syndrome may also be psychosomatic.

SPENCER: See, but others could be something about the way the viruses affect your body that's maybe subtle, and not that there's not such a clear, definitive test for it, but something is kind of wrong with your body for a while that needs to be repaired.

SUZANNE: I think it's possible, because anything is possible, but I don't think that that will represent a very large number of these people. I don't think that this virus differs so substantially from our experience of other viruses that it has produced things we have never seen before. But of course, everyone can be wrong.

SPENCER: I want to give you an example from my own life, and I want you to tell me if you think it's a somatic issue.

SUZANNE: I love it when I'm asked to diagnose somebody in a podcast.

SPENCER: It's more just to help us understand what psychosomatic means. I had this experience where I started getting strange symptoms. I started feeling sick in my stomach a lot, not like I would feel. I felt weird feelings in my stomach, nausea and stuff like that. I would get tingling in my fingers. I had trouble concentrating, and I felt very brain foggy. I went to a whole bunch of doctors, and none of the doctors could figure out anything wrong with me. Then I went to one doctor, and he said, "You know what, I think you're experiencing anxiety." I then went to Burning Man for the first time, and at Burning Man, all my symptoms went away. At first, I thought this doctor was crazy. I was like, "There's no way this is anxiety." Then I got back from Burning Man, and I was like, "You know what? I think this doctor is right. Why would it go away when I was there?" I think the doctor was completely right. I think something quite traumatic had happened to me right before the symptoms started that was still affecting me a lot. It was very difficult in my life at the time. I think the doctor was right. I do think what was happening is I was having very severe anxiety. It was causing all the changes in my body. Anxiety can make your stomach twist up in knots. It can give you tingling in your fingers. People don't usually think of that because usually anxiety is low enough that it doesn't cause such intense effects. Now, assuming the doctor's right, is that psychosomatic?

SUZANNE: Yeah, I think it would be. I'm not going to say that I know what was wrong with you, but let's say that story would not be unreasonable for someone who had psychosomatic symptoms. Let's say you have your initial symptom, and it's stomach upset. Maybe that stomach upset was due to some of the life stresses you were going through, or maybe you just had a stomach upset because viruses go around, and we occasionally have stomach upset. But then what happens next is what creates a kind of psychosomatic phenomenon that can get gradually worse, and that's that you start worrying and noticing the symptoms. The first thing that happens when you start noticing things is that a healthy body is not normally within conscious awareness. Most of us younger people, certainly, as you get older, you get aches and pains, so you become more aware of your body. But when you're younger, you just don't think about it. You walk, you talk, you do things every day without thinking about it. You take it for granted. But once you get an illness, it focuses your attention on your body, and when you focus your attention on your body, it completely changes how your body feels. I always say to audiences when I'm speaking to them, "Imagine that the person you're rubbing shoulders with has head lice, and you realize at this moment they have head lice." It's immediately going to produce symptoms in you, even if it's not true at all. So, yeah, exactly. The attention you pay to your body and a belief about potential illness creates symptoms because our bodies are washed with this kind of white noise. Every time you go up the stairs, your breathing increases a little, and your heart rate increases. If you're healthy, you don't even notice it. You don't even think about it. Now imagine you're caught in a pandemic, and you've just turned on the news, and they said, "Look out for shortness of breath." Now you walk up the stairs, and you feel a bit short of breath. Suddenly this enters the frame of your anxious attention, and once a symptom is in that sort of area of stopping something normal in your body, now you're worrying about it. You pay more attention to it, which activates the fight or flight system, producing more symptoms. Now you've got more things to worry about. I see people who have this so badly that they can have blackouts and seizures, and very often, the solution to it is very much what you described, which is to direct your attention somewhere else. You're now worried about your body. You think that something terrible is happening to you. You feel the stomach upset, and you think, "What comes after the stomach upset? It's the tingling. Are my hands tingling now?" Your attention is moving around your body. Very often, I'll say to my patients, "You get that first symptom, you know that feeling in your stomach that might lead to a blackout. Instead of thinking about the next symptom, what you do is you learn distraction techniques. You say, 'I'm going to list all of my favorite Hollywood movie stars,' or 'I'm going to pay attention to everything in the room that's a color green.'" The brain acts on expectations and predictions. It predicts that you will get tingling in your hands every time you feel the funny feeling in your stomach. It's a little like if you touch a radiator or something you think is going to be hot, but it's actually cold, and for a moment, your brain is a bit confused. This hot thing is cold. This doesn't make sense. It takes a moment for your brain to correct a wrong expectation. That's how our brains work. They're based on predicting how the world will behave, and if they predict your symptoms will go one way, they'll go that way. My job very often is to say, "Listen, change that prediction and distract yourself and force the symptoms to go in a different direction." That's what Burning Man did for you, I guess.

SPENCER: I feel like you're kind of hitting on three different effects that are very subtle and very much related. One is just paying more attention. This is something I've noticed in meditation. If you do a body scan meditation, you're really paying attention to your body. It's insane. When I pay close attention, it's almost like my body is made of static electricity. That's what it feels like. But you never notice that in normal life. You have to really sit there and pay attention. If you trained yourself without realizing it to pay subtle attention, you'd be like, "Oh my god. Why am I feeling this weird electricity in my stomach? What does that mean?" So that's one thing: paying attention and how that changes your experience. The second thing is an expectancy effect, like you're suggesting that if you expect something to happen, like, "Oh, now that I'm feeling this, maybe I'll feel this," then you can actually will it into existence, almost.

SUZANNE: You very much can. Think of a person who's got a needle phobia. Lots of us don't like needles, but imagine a person who's really phobic, terrified of an injection. As you approach somebody like that with the needle, they may feel the pain in the arm before you have even touched their skin. You can create symptoms, not out of nowhere, but out of the belief in the symptoms and out of the expectation that that's what's going to happen. So it's powerful.

SPENCER: One time I was opening some aluminum foil, and I cut my hand really badly, a really deep cut on the sharp tooth thing that you use to cut the aluminum foil. And then for about a year, every time I would reach for the aluminum foil box, I would feel the pain of that cut. My brain was just like, "Okay, it's gonna happen. You're gonna get cut again." You feel it; it's not as intense as the original cut, but you literally experience the pain of that cut. It's so strange.

SUZANNE: Yeah, we all experience these things all the time, and that's a little bit of why I'm always surprised that people are so surprised that psychosomatic conditions exist. Even if you're in the most sound mind imaginable, you're an intelligent person, your body tells you these lies all the time. The reason it does that is because we need to process the world really quickly. We can't handle all of the information in our environment because there's just too much going on. Therefore, our body is not being in that conscious part of our brain because it doesn't need to be. We can walk automatically because we don't need to think about it, and we have to pay attention to more important things. You just need a little something to make you think. Imagine if you were walking along the road and I asked you to walk like in a sobriety test. You could do it without any difficulty. If I asked you to do the same thing at the top of a high wall or on the edge of a cliff, you'd probably struggle with it. It doesn't take very much for your body to become less efficient or for your body to feel strange, and that happens to the best of us. That's what always surprises me, that people are so shocked that if that can happen with almost no provocation, then why can't something much bigger and more serious happen with provocation?

SPENCER: I think a lot of people are just not paying super subtle attention to themselves all the time. It's happening, but they're not paying attention to it. But that raises the third effect, which I think is subtly different from the other two, which is the way that mental health can interact with this. In my example, I was having anxiety from an external stressor, and I think it was causing physiological changes, like maybe my cortisol levels were rising or whatever, and then your stomach maybe reacts to the different changes in your hormone levels, and you start getting this weird feeling. I think that is different from an expectancy. It's like you're actually in some kind of emotionally elevated state which can cause physiological effects.

SUZANNE: I think there are lots of different ways that psychosomatic symptoms can arise. Sometimes it is just a pure chemical reaction in your body, so you're frightened and the adrenaline is pumping and the autonomic nervous system is activated, and your heart beats very quickly. I think most of us are familiar with that, and I guess that's why I don't emphasize that side of it very much, because most people are kind of familiar with what happens. The fight or flight concept is quite a well-known concept, but I think the idea that your body can simply stop working through attention and expectation is the one that confuses people.

SPENCER: I might have been more ignorant than your average patient, but I didn't attribute the physiological symptoms to my anxiety. I knew I was anxious, but I did not see the link between them until it became obvious.

SUZANNE: I guess that's not unusual, is it? We sort of expect that if something frightening is actively happening, then that's when we expect our bodies to behave in that way. These things are hard to interpret, sometimes. I would say that one of my anxiety symptoms is dizziness. But when am I dizzy because I'm anxious, and when am I dizzy because I didn't drink enough? I don't always know. These symptoms have so many causes, and these subtler symptoms can be hard to unpick. But I think the most important thing is to realize that they do exist and that this is an explanation for why a person can feel dizzy and why a person can feel sick. Not being aware that this is one of the potential explanations is one of the things that sends people down this kind of rabbit hole of tests. The minute you start getting into the test rabbit hole, you're really potentially in trouble. What exacerbates symptoms more than waiting for an MRI scan and then waiting for the results of an MRI scan and then learning that there was some incidental, nonspecific finding that we don't know how to interpret on the MRI scan? The thing about long COVID is it's not to say that I know this person has a psychosomatic disorder, and I know this person doesn't. It's more to say that here are a couple of different explanations for the symptoms that you have. If we can accept these different explanations as equal explanations, it might stop people from going down the rabbit hole of tests. What happened with long COVID is the psychosomatic explanation was left so late it was not available to people, so they'd already gone down a rabbit hole of believing that this long COVID thing was a kind of end organ damage, even though there wasn't evidence for it.

SPENCER: Right. The belief kept being reinforced by all these different media stories and so on. As you say, these people are genuinely suffering. Nobody's making this up. When you're suffering a lot, it can be very hard to even consider the possibility that it's not real in the sense that you're used to thinking of real. Not to say psychosomatic disorders are not real, but you want to link it to some external thing. There was this virus, and this thing happened to me. To say this is a disorder related to the way my mind interacts with my body may feel undermining in some way.

SUZANNE: I feel sorry for people because of how undermining it feels to them. It shouldn't be, but if we imagine that, I see people with seizures and they have a psychosomatic cause. Imagine that you go to a doctor with seizures, you've told your boss, your neighbors, your partner, and everyone thinks your seizures are due to a brain disease like epilepsy. Then suddenly, you have a variety of assessments, and you're told, "Well, actually, we think these have a psychosomatic cause." Imagine how difficult that is for a person. It shouldn't be this way, but it is. First of all, they have to go to that neighbor and their boss and say, "You know what, I don't have epilepsy. This is all psychological." A lot of people are going to think, "Oh, she's doing it on purpose," or "It's not as serious." This person was having seizures before the diagnosis was changed. They're having seizures after the diagnosis was changed, but somehow that change in label has completely diminished their suffering in other people's eyes. It's also quite a hard concept to get your head around. It's easy to understand that you have a head injury, and that causes epilepsy. These are concepts we can accept, whereas the concept of serious physical symptoms for psychological reasons can be quite hard to wrap your head around. You're also less likely to get financial support from disability payments for these kinds of disorders. You're also going to find it harder to find people who can treat you. For epilepsy, you get a tablet. What do you do for these kinds of seizures? It's much lengthier and more difficult. I absolutely feel for people in this situation. I wish we could move forward in society to appreciate this is just another illness, a real one that is disabling. Then people wouldn't have to resist the diagnosis if it wasn't viewed in such a way.

SPENCER: I kind of hate the phrase mind-body connection, but you really have to give it credit. Everything that we experience is essentially mediated through our mind at the end of the day. The idea, and I think dreams are a really good example, is that our brain can literally hallucinate a new reality in your dream. In your dream, you can see something, you can hear something, you can feel pain; anything can happen in a dream. That just shows that in waking life, your brain can fully mediate your experience. Anything that can happen to you in real life can also happen because your brain is making it seem that way.

SUZANNE: I love the evolution of social media and various things on the internet. You see these visual illusions all the time where you're asked to look at something, and if you look at it for long enough, then it all changes color. There was a picture of a dress that went around the world, and some people saw it as gold and white, and some people saw it as black and purple. I love all these visual illusions because I think they're super useful for people to understand that your brain is fantastic because it doesn't go wrong most of the time, but it is constantly tricking you and reinterpreting the world for you to keep you safe. You don't want to have to calculate how fast a car is going every time you're crossing the road; you want to be able to just run across the road in a safe way. Your brain is doing those calculations super rapidly for you, and that's the purpose. It's keeping you safe. But even the soundest mind in the world does not have control over that. Our brains are drawing on experiences that we had when we were children to create a world that makes sense to us. I love those visual illusions on the internet because they're such a vivid reminder of that.

SPENCER: I'm wondering if you could give an example to show us just how extreme this can be pushed. You mentioned that people can actually have seizures from psychosomatic illness. What's the most extreme example of a psychosomatic illness manifesting physically that you're aware of?

SUZANNE: Yeah, I see people with the most extreme of these. I'll give a sort of a typical case that I would see. A lot of people think about psychosomatic symptoms as being due to a very Freudian concept. You've been abused, particularly sexually abused, or something really traumatic has happened to you. It might not be anything like that. It might be something traumatic, a loss or an abuse, but it could be something simple. Let's start with a simple example. The London Underground, like the New York subway, is very packed at certain times of the day. Somebody gets on the London Underground, it's really hot, they can't get a seat, they're sandwiched in there, and they start feeling dizzy. What happens is they're probably overheated and about to faint. If you're on the London Underground, you can't fall on the ground because you are being held up by the crowd. When you faint, you're supposed to fall on the ground. Your blood pressure recovers, and you recover. But if you're held upright like that, fainting can be really bad, and you can start shaking like a convulsion. That's how an illness like this can start. Something physical happens to you that is explainable. Now, what happens next is that person is rushed onto the platform, and a junior doctor, a recently qualified doctor who's never actually seen a seizure in their life, sees you and says you definitely had an epileptic seizure. Now you're being rushed to the ER, and you have this massively frightening experience in which you believe you've had a seizure and you've woken up on a platform surrounded by people staring down at you. What happens next? You spend a week recuperating, and then you have to go to work again, and you have to get on the subway again. The minute you see that subway, you're thinking, "Oh my God, I hope I don't faint again." Now your body is being primed for this next thing to happen, and you get on the subway and feel the dizziness again. This is when expectations take over. You're not fainting now; you're behaving as your brain expects you to behave by having a seizure. I've seen a story that starts like that, which is quite a simple beginning. Something genuinely traumatic happened, but then the fear of that, the attention it caused to the body, meant that every time this person got on the subway, they had a seizure. Their brain starts saying to them, "Well, I hope it doesn't start happening at other times." Of course, you've thought yourself into it. Now you've created this expectation that every time you feel dizzy, you're going to have a seizure, even if you're not on the subway. I've seen people in that circumstance have a hundred seizures a day and sometimes fall into comas that last days at a time. It all began with this kind of simple thing that got out of control through anxious attention and expectations, and to a certain degree, because of medical intervention as well. When you go to the hospital, doctors don't want to miss a brain tumor or life-threatening epilepsy, so they're doing more and more tests. This is a kind of looping thing that gets worse and worse. I've seen cases like that extend to now you have a seizure at the top of the stairs at home, you fall down the stairs. Now you're worried that you've injured your back, and now your legs aren't moving. I see people at that level of severity, where they start out with something quite simple, and now they're having a hundred seizures a day. Their legs don't move, and they have a variety of other symptoms. Those kinds of extreme cases I see very regularly, but they're not common in the world. The common symptoms, like feeling dizzy, headaches, palpitations, and shortness of breath, represent about a third of medical consultations. The simpler cases are super common; the more severe cases are not super common.

SPENCER: The way you described that, it almost sounds like Pavlovian conditioning, where, because of this intense experience that happened in a particular setting, that setting kind of gets imprinted. Just the way Pavlov would ring a bell and then feed his dogs, and then they would learn to salivate at the bell. It's like your brain's learning to have a certain reaction in a certain situation.

SUZANNE: Exactly. I think that's a good way of conceptualizing it, because it is very much a case of, you feel the dizziness, and now you know what happens next. And then that happens because of that expectation, which is a very similar thing. It can be a very difficult thing to treat if you make the diagnosis very late, which is why I think this kind of conversation is important so that people can make an early diagnosis. If you see people at an early stage, they can actually get better fairly quickly. I saw a young woman who was having about 10 seizures a day. I've forgotten at this point what exactly triggered them, but she was having about 10 seizures a day. I met her in outpatients, and it was fairly obvious to me. I see a lot of seizures, I hear a lot of stories. I knew what the problem was at that first conversation. I immediately raised it, and I had a long and difficult conversation with her, explaining how mind, body, attention, and expectations interact to produce symptoms. She didn't believe it at all. She just looked at me like I was absolutely insane. She was open to the discussion, which was very mature of her, but she most certainly did not agree with anything I was saying. I arranged an urgent admission to the hospital. In New York, you might get that on the same day or something, but in England, it took two weeks to get her into the hospital. When she came into the NHS hospital, the seizures had stopped. The thing that had stopped the seizures was something in that conversation that broke the pattern. It's not that she even believed what I was saying. Even when she came in, I was shamelessly fishing for praise. I will blatantly admit, I just thought, "Oh my God, you're so much better. What made you better?" I was longing for her to say, "Oh, it was you, Doctor." She actually said, "Well, since I spoke to you, I cut out gluten." That was how she explained her recovery. But it doesn't matter how you recover; illness sometimes is a story you tell yourself, and you need to tell yourself a story that will make you better to get better. I think that's what happened with her. She told herself a story that she would have to have 10 seizures a day. Then she developed an equally strong belief that if she cut out gluten, it would make it better, and she got better.

SPENCER: That might reduce that anticipation that it's going to happen right now. What about someone who has a more severe case? They've been having it for years. How would you actually go about treating that?

SUZANNE: It is phenomenally difficult if it's been present for years. One of the things that's a really big mistake is that we've often had a really big kind of Freudian view of these that has really hung around. He wrote his studies in hysteria about 100 years ago and attributed much of this to things like sexual abuse. In fairness, some of the more serious cases are related to abuse, but not the majority. The consequence of that way of thinking is that for a very long time, we thought we would go to somebody who's lying in bed paralyzed and having seizures, and we would try to psychotherapize them out of it. But we now realize that the last thing you need when you're paralyzed is a psychologist talking to you about your upbringing. You need to be physically rehabilitated at the same time that you're psychologically supported. It's a little bit like if you imagine walking. If you can't walk for a psychological reason, it's almost because you've unlearned walking. You learned it as a child, and then something happened that made you pay undue attention to your walking, so walking stopped feeling natural. When walking stopped feeling natural, your legs felt funny, etc. What you need in that circumstance is a really great physiotherapist who can help you confidently rehabilitate your walking just the same way they would for a spinal injury or any cause for difficulty walking. It's important that we treat the physical symptoms, whatever they are, and figure out what is the best physical rehabilitation for the physical symptoms, but at the same time, work with a psychologist to help break down the pattern of fear and avoidance that develops. You fear that something will happen in a certain situation, so you avoid that situation, and then it gets harder and harder. You do need to work with a psychologist to break that fear-avoidance pattern. Some people will have deeper-rooted psychological issues, of course, and they may need deeper psychological support or psychoanalytic work. It's very individualized, but I have to say that the really depressing part of it is if you cannot diagnose quickly. If, say, the type of seizures that I was describing are diagnosed quickly, you can cure them quickly, but if you don't diagnose them quickly, they only have about a 30% chance of going into remission, and a lot of that is because the pattern is so reinforced. That's why I say these things are so serious. A 30% recovery rate is a pretty serious medical disorder.

SPENCER: How do we know that it's not just, "Okay, there's something physically wrong with their brain that we, as science, don't understand?" If you go back a hundred years, there were lots of diseases that were not understood. Fifty years ago, we understood some of those, but still didn't understand others. Inevitably, there will be some diseases we don't understand.

SUZANNE: Yeah. Of course, there are many aspects of this we don't understand. When I trained as a medical student and as a junior doctor, these things were barely researched other than perhaps from a psychological perspective. We're really in the infancy of understanding how these things work, and we can now apply techniques like functional MRI. MRI imaging, where you ask people to do different tasks in the MRI scanner, allows you to figure out what is going on in the brain of a person who appears to be paralyzed, but everything seems to be okay. For example, if you put people in an MRI scanner, some of whom are paralyzed because they had a disease, say, a spinal cord injury, and some of whom are paralyzed because you told them to deliberately pretend to be paralyzed, and some of whom have a psychosomatic illness, you can see that there's a different brain reaction pattern in each of those three groups. That tells you immediately that this psychosomatic group is not pretending, and you can see that there's increased connectivity between the emotional parts of the brain and the motor parts of the brain. Something in the connectivity has changed. That, of course, doesn't mean it's a disease. It just means that whatever's going on is not the same as pretending. I would say that the best evidence for these not being some inexplicable disease that we haven't found yet is in the experience of how easy it is to make a percentage of the people better in a moment. Almost like the girl that I described to you, who I had a conversation about these seizures, and they basically disappeared. I think that's very powerful evidence that there isn't some underlying brain disease that we can't explain. But that's not to say that we can very easily. I think it will be very useful when we understand what exactly is happening in the brain for each of these sets of symptoms because that's a stumbling block for patients. It's a stumbling block for us. We'd love to know how that symptom came about. It'll be great when we figure that out because it will help people to believe in the reality of the diagnosis more. I would say more than that. There really is, so one of the big ways that we have, again, we talk about something like paralysis as a manifestation of psychosomatic illness. When we're making that diagnosis, we're not making that diagnosis because the scan was normal or because we think they seem the type of person. We make that diagnosis on clinical signs. A big indicator in the clinical signs that something is psychosomatic is that there's a very big disparity between the findings and what one would expect given neuroanatomy. For example, if I have a brain disease on the right side of my brain, I'm expecting the left side of my brain to be affected. If I have a muscle disorder, you have particular patterns of muscle weakness. If I have a nerve disorder, I expect certain findings in my reflexes and a certain pattern of weakness. The nervous system is arranged in this really precise manner. Therefore, if you get a disease at different points in the nervous system, you see very specific patterns. When your neurologist is examining your leg, what's super important to them is whether it's your hip flexors when you lift your leg off the bed or your hip extensors when you push your leg down into the bed. Which one of those muscles is weak will pinpoint your disease in your nervous system. But when you look at somebody who has a psychosomatic illness, these signs are all over the place. They're not consistent with anatomy. They don't make anatomical sense, and that's a little bit like what we're talking about with long COVID. The anatomical findings don't make sense; there is a big disparity between what you're finding subjectively and what you can find that is objective, not necessarily on tests, but even on examination. It's very much a case of looking for positive findings that don't make anatomical or biological sense, and that helps you make the diagnosis.

SPENCER: Let's talk about chronic pain because my understanding is that there are quite a large number of people who have chronic pain, and when you try to diagnose it, no organic cause can be found. Back pain is sort of the classic example. For a long time, people would try to treat it; they'd give injections, they'd even go and get back surgery, but the outcomes were terrible. It was very often the case that they got no improvement from these interventions. Is that correct?

SUZANNE: I think pain is the most difficult thing to treat. It's the most difficult thing to treat, and it's the most difficult thing to diagnose. It's very challenging because it is a purely subjective experience. In many ways, I'm in a luxurious situation diagnostically because seizures are observable. I can see them.

SPENCER: It's a firing in the brain.

SUZANNE: Yeah, it's an electrical discharge in the brain, but also an anatomical pattern in the body that I'm watching. Even if I didn't know what was going on in the brain, I can see that what's happening fits with anatomy or doesn't. The difficulty with pain is that, because it's a purely subjective phenomenon, giving a really precise diagnosis is phenomenally difficult. It is also one of the most challenging symptoms to treat, especially psychosomatic symptoms. In terms of things like seizures, paralysis, and so forth. You have something to work with in trying to rehabilitate people. That is possible with people with chronic pain. It's not something I personally treat, but I do have a lot of patients who have chronic pain, and our ability to really help those patients is quite limited.

SPENCER: One approach you mentioned earlier is essentially a form of distraction: you get people not to pay attention to these signs in their body, which maybe they're hyper-vigilant about. But there's another approach, which I think has increased in popularity, which I would think of as almost like mindfulness of your body. You pay close attention, but you try to do it with equanimity. You say, "Okay, here's how my body feels. It just is how it is." You try to notice what it actually feels like without adding this whole interpretive layer of, "Oh, it means there's something wrong," or "It's bad." What do you think of that kind of approach?

SUZANNE: I'm always a smidgen conflicted on the concept of mindfulness. I don't mean mindfulness in general. I mean mindfulness in this situation. A little bit of the problem that develops with psychosomatic symptoms is too much mindfulness, in a sense, thinking about your body too much. I think one has to use mindfulness carefully. I haven't heard of the approach you're describing, but if the description is as I understood it — that you notice things and worry about them less — then that's very much aligned with what we try to do. I would say that you can't get rid of psychosomatic symptoms. If my issue is that sometimes, if I'm very anxious, I feel dizzy, I will always feel dizzy. It may be that I can just learn to accept that, and then it doesn't lead to anything. I think that's very much like what you're describing, which is being aware that this happens to your body and not worrying about it. Some of us express our symptoms more physically, and some people cry, and it's more emotional. You can't necessarily change the type of person you are, but you can change how you react to your symptoms. I think that's what you're describing.

SPENCER: Because, let's say you have weird feelings in your stomach, right? You could distract yourself when you notice them, saying, "I'm just going to pay attention to something else." Or you could say, "I'm going to notice the weird feelings, but I'm not concerned with them. There's nothing wrong with me. It's just a normal part of my body."

SUZANNE: I think that's fair enough. It's also the way people are perhaps better at dealing with their emotions now as well, because we have a tendency to pathologize our emotions. Many psychologists would say to just sit with them instead of worrying about them, accept them, and try to understand what they're trying to tell you. I think you can do that with your physical symptoms, too.

SPENCER: There's this idea of second-order emotions, emotions about your emotions. Sometimes someone's anxious, but then they're anxious that they're anxious. Or they're angry, but then they're sad that they're angry. They call it the second arrow. You get hit with one arrow, and then you shoot yourself with the second arrow. At least you don't have to have that second emotion. You can imagine the same for bodily sensations. Okay, you have a bodily sensation; you don't have to feel stressed about it. Maybe feeling stressed about it will increase the bodily sensations because now it's firing off all these hormones, or whatever.

SUZANNE: That's how you react to the thing that can make all the difference. So certainly, what you're saying makes a lot of sense.

SPENCER: Let's talk about chronic Lyme disease, and I'll just tell you a quick story about this. When I was about four years old, I was diagnosed with Lyme disease from playing in the fields, getting ticks, etc. I got treated with antibiotics. I was totally cured. Then again, in high school, I was diagnosed again with Lyme disease, but this time, I continued to have symptoms after I was treated, and they actually diagnosed me with chronic Lyme. I have very weird feelings about this now because I'm not sure that I did have chronic Lyme disease, but they did diagnose me with it. It took a few years for all the symptoms to go away; they eventually went away. I did undergo treatments. They put me on intravenous antibiotics, which my understanding is now considered very controversial. Many doctors think that it's not a good treatment, that not only does it not work, but maybe is even dangerous or not worth the risk. I don't know. I'm kind of neutral on whether I actually had chronic Lyme or not, but anyway, that was my experience. Thankfully, I got better regardless of whatever it was. But yeah, tell me. What is your interpretation of chronic Lyme disease?

SUZANNE: The official definition of chronic Lyme disease is that these are symptoms unrelated to Borrelia infection, so unrelated to Lyme disease. Let's divide Lyme disease into two groups to simplify it. We have acute Lyme. You've been bitten by a tick. Lyme disease is caused by a bacteria. Shortly after being bitten by the tick, you get a particular constellation of symptoms: a bull's eye rash, a flu-like illness, aching joints. That's acute Lyme. It's caused by a bacteria and treated with antibiotics. Most people, not every single person, but most people get better very quickly after receiving the antibiotic. Like any illness, if there's a delay in diagnosis or complications develop, some people might have more lasting symptoms. The typical trajectory of acute Lyme disease is a short illness, treated with antibiotics, followed by recovery. Chronic Lyme disease is understood to be quite distinct from that. It may or may not begin with a typical illness, but it has an array of nonspecific symptoms, the kind of symptoms that could be indicative of almost anything, such as feeling tired, feeling generally unwell, having aches and pains. These are fairly ubiquitous symptoms; everyone experiences them. If you have these symptoms for a long time and are looking for an explanation, one of the explanations given is chronic Lyme disease. The diagnosis of chronic Lyme disease is often made on very spurious results. The blood tests for Lyme disease are straightforward and clear. According to the guidelines for treatment, there are clear guidelines for how Lyme should be diagnosed based on these blood tests. However, like any diagnosis, there are many caveats. The test can be done a certain way in one lab, producing one set of results, and in a slightly different way in another lab, producing another set of results. You can get false positives for various reasons, such as being sick in another way or having had Lyme disease as a child. Now you're 40, and your test is positive not because you're sick now, but because you were sick when you were a child. There are all sorts of caveats to blood tests. If you have chronic unexplained fatigue and are looking for an explanation, Lyme disease is a readily available explanation, and it's easy to misdiagnose based on these caveats associated with the blood tests. The consequence is that many people who are suffering and have been failed by medicine, because they haven't received an answer that suited them or led to recovery, or they haven't felt understood, are drawn into this rabbit hole where chronic Lyme disease is presented as an explanation. It can be given in almost any situation, as something that causes every symptom you can imagine, and where the tests are.

SPENCER: Would they be testing positive for some of these tests in this case?

SUZANNE: What's very interesting about this is, yes, they can test positive if you test in the right lab. How you do the test matters. We don't test for the bacteria. When testing for Lyme disease, you're not looking to see if you can find the bacteria in the body. The reason you don't do that is that these bacteria are not like other infections. You don't get millions of them coursing through your blood; they're quite hard to find and scanty. Instead, you look for an immune reaction to the bacteria. A lab will decide to look for particular antibodies directed against the bacteria's surface antigens and will choose a selection of antibodies to test for. Some of those antibodies will be nonspecific. Yes, they react with the Borrelia bacteria, but they also react with some other bacteria.

SPENCER: We're constantly exposed to bacteria in our bodies, creating antibodies. It's normal to have lots of antibodies for a given type of bacteria.

SUZANNE: If a lab can configure a test to be very sensitive or very specific. If it's very specific, it will choose a small number of super specific antibodies just for this Borrelia, the bacteria of interest. But if it's super specific, you'll probably miss a few cases. Or it can set this test to be super sensitive, looking for loads of antibodies to loads of different antigens. The problem is that those antigens are in other bugs, and they can be positive for other reasons. So now you'll probably pick up way more cases, but a big bunch of them will be false positives. What happens in the chronic Lyme disease industry is that somebody with chronic, nonspecific symptoms goes to their board-certified Lyme disease doctor who works in a good university-affiliated hospital, and they're tested for Lyme and told that the test is negative, but they don't necessarily trust that doctor, that test, or that hospital, and they still feel they have Lyme disease. Then they go to a private institution that will send a blood test to a variety of different labs that do the test in a way that will produce an awful lot more positives. They may potentially get a positive test. If you're seeking a Lyme disease diagnosis because you have a strong conviction that you have Lyme disease, you can lab shop, in a sense, to find a lab that will give you a positive result. That makes the diagnosis of chronic Lyme disease quite unreliable in a lot of people. One reputable Lyme disease clinic in a university-affiliated hospital tested every patient coming through with an existing diagnosis of Lyme disease from elsewhere, and they found that 85% of those diagnoses were misdiagnoses. They would not consider these people to have Lyme disease, according to what we would consider a good standard of diagnosis. I have to emphasize, I'm not in any way dismissing the suffering of these people. It's also important to understand that people who go from doctor to doctor looking for a diagnosis and get a diagnosis of Lyme disease must feel very unwell and desperate to do that. I'm not dismissing the suffering, but at any point in time, there are a lot of people with chronic symptoms that are hard to explain, and mainstream health services don't deal with those people very well. We're quite specialized now, so it can be a process of me saying, "Well, I've tested you. You don't have a neurological problem; why don't you see the rheumatologist?" Then the rheumatologist says, "Well, you don't have a rheumatological problem; why don't you see the cardiologist?" There's not a great home for people who have multisystem symptoms that are hard to explain, and that can drive people to diagnoses that seem to provide the explanation, and the community. Chronic Lyme disease is one of those.

SPENCER: Yeah, I guess in many ways, it resembles long COVID, right? It could be that you got Lyme disease and you didn't get treated for a long time, you have some kind of post-viral symptoms. It could be misattribution; you just have a different thing, or you're attributing some other symptoms to Lyme. Or it could be psychosomatic, and it's probably a jumble of these things and really hard to separate.

SUZANNE: I think that we can only use explanations that are available at a point in time. I've talked to a lot of people with chronic Lyme disease, and they really suffer a lot. They also suffer through going to their doctor and feeling not believed. They suffer through having to go around seeing lots of doctors who just keep saying the tests are normal, but not really trying to address how sick they feel. It was interesting to talk to these people immediately after the pandemic because a lot of them also got long COVID. If you have a tendency to explain how you feel in the context of diseases, then you can be vulnerable to getting more than one of these diagnoses. I think the Australian story for chronic Lyme disease is a very interesting one. Australia's climate is inhospitable to the ticks that carry Borrelia. There are not believed to be any Lyme disease-carrying ticks in Australia purely because the climate's wrong for it. But there are still half a million people in Australia who believe that they contracted Lyme disease.

SPENCER: Half a million? That's a huge number.

SUZANNE: Who believes they've contracted Lyme disease in Australia, despite the fact that the government of Australia says, "You cannot possibly have contracted Lyme disease in Australia because we've never identified the bacteria here."

SPENCER: Presumably, they've looked for Lyme ticks and analyzed, and they haven't found them.

SUZANNE: Yes they have and they haven't found anything. It's really just a climate thing.

SPENCER: It's the opposite of Connecticut, where there are actually Lyme ticks everywhere. You can see why people become paranoid.

SUZANNE: Yeah, I visited Lyme, Connecticut. It's the most beautiful place. I just wanted to go to the home of where this all began. It is a very beautiful place, it has to be said.

SPENCER: Does the government have a program to try to work on this? I mean, it seems like it's such a ubiquitous thing there.

SUZANNE: Well, I don't think there is a program. Unfortunately, it is very hard to undo the force of social pressure when there's a large body of people who are suffering, and they all have a very strong belief in a particular kind of suffering that is a very difficult problem to address.

SPENCER: If you had to estimate what percentage of those people do you think are likely misattributing, they actually have something else physical, another virus or something like that, versus psychosomatic? What would your best guess be?

SUZANNE: I would say you are talking about a very high percentage of psychosomatic conditions. The reason I'm saying that is because you're seeing people who have, and I see many of these people. You see people who are quite profound; they've been bedbound for long periods of time. They've lost weight. They're not able to do things. They have quite severe disabilities, very life-limiting disabilities, and yet, when you do objective testing to look for evidence, there are lots of inexplicable diseases in the world, but you will see objective evidence of those. There are so many things in the brain that we don't understand, a million different kinds of dementia that we still haven't explained. We can't explain what's causing them, but we can see the objective evidence of them.

SPENCER: I see. So even if we don't understand them, there's a disease, we'll say, "Okay, this is disease XYZ. We don't understand it. It's really weird," but we'll see some sign of it that says, "Ah, okay. It's causing something we can measure."

SUZANNE: Exactly. Since I qualified, in the 1990s we used to regularly see very young people lapsing into these deep comatose states and having to go into intensive care and having seizures. They had lots of objective evidence of disease in the sense that we could see abnormalities on their brain scans. We could see abnormalities in the brain wave recordings, but we didn't have a clue what was wrong with them. We live with that all the time as doctors, these obvious serious diseases, and we know there must be something underlying them, and time will unwind and allow us to understand it. Now, 20 years later, we know that we found the antibody that causes those diseases, and now we know what caused it. The difference between them and people with psychosomatic conditions is you might not understand the disease, but by the time you're sick enough, perhaps not in the early stages. If you're just at the beginning of an illness, you might not see very much on tests, but by the time you've been sick for six months and you're disabled, you should be seeing objective evidence of disease at that point.

SPENCER: At least in some form, some tests, you should be seeing something. How does all of this relate to this idea of functional disorders? What is a functional disorder?

SUZANNE: Yeah, so a functional disorder is... What medicine does is it constantly tries to destigmatize by changing the names of things. So a hundred years ago, if you had the kind of problem that I deal with now, which are seizures and paralysis, that have a psychological reason, you would have been referred to as having hysteria. Now we can see why we don't use that term. Although a hundred years ago, it didn't mean what it means now; it wasn't associated with this sort of emotional overwroughtness. It was considered to be a disease, but it was called hysteria. Now that obviously became a very stigmatized condition. Then we changed the names of these disorders to a variety of things like non-epileptic attacks or psychogenic seizures or psychosomatic disorders. That was highly stigmatized because having the prefix "psycho" really gets you off to a terribly bad start with our understanding of this and our ability to explain it to patients. Those kinds of names emphasize too much the concept of potential psychological trauma. As I've said, these things can begin with a faint on an underground; they don't have to begin with psychological trauma. So we said, "Okay, we don't want any more names with "psycho." I didn't say this; I'm not a huge fan of the name-changing way of doing things. But the community of doctors said, well, let's stop calling them "psychosomatic." Let's start calling them "functional." So functional is supposed to imply that there is something functioning wrongly in the brain, but it kind of is trying to distance itself from words like psychological and psychogenic. My difficulty with that as a name is it's almost adding to the stigma because it's making anything that's psychological or psychosomatic feel shameful. It's obscuring the underlying potential mechanisms. I'll give you a story. There's this illness called grisi siknis, and that's in the Miskito language of the indigenous people of Mosquito Coast. They have seizures that are very much like the kind of seizures that I see. These are young people who have very frenetic seizures, and they refer to this as grisi siknis. The literal translation of grisi siknis into English is crazy sickness. This is not a stigmatized condition within the Miskito indigenous community because they understand this condition to be not about the inner self or the fault of the individual. They understand it to be caused by various spirit causes, and it's cured by rituals.

SPENCER: Would you describe it as psychosomatic?

SUZANNE: No, I wouldn't call it psychosomatic, but I would say that it has a very similar mechanism, and it looks exactly like the seizures I care for. The reason I kind of named this situation is twofold. One is because they call it crazy sickness. Can you imagine, in America or the U.K., diagnosing someone with crazy sickness? This would not be acceptable. It is perfectly acceptable within this community because they don't blame the individual for the problem. They consider it to be meted on the person through spiritual mechanisms. It doesn't matter what you call it if you can destigmatize the concept. The other interesting thing about grisi siknis is that it has a recovery narrative that goes with it. It happens to young women, usually in the context of being under sexual pressure from older men, and then they get these seizures. The seizures are cured by the whole community coming together to support the young women, and they cure it with ritual. It does the exact opposite of what our conditions do. It brings the community together, and they support the person, and they get better. It is completely solving a social problem. It's actually a beautifully elegant solution to a social problem. It's a way of saying, "I'm suffering, please can you support me?" The community comes together, and the people get better. What I feel we're doing is almost the opposite of that, which is, we're saying, "Well, we can solve the stigma of this problem by distancing ourselves from any words we don't like, like psychosomatic or psychogenic, and just giving this very hard to understand word called functional." If you heard that someone had a functional neurological disorder, you wouldn't have a clue what that is. For me, it's too obscure. It doesn't acknowledge the underlying cause of this problem. It's also so stigmatized that it doesn't drive you into the community; it drives you out of the community. Functional disorders emphasize that whatever is wrong with you is due to your brain connections or misfiring in some way, and that very inward-looking biological explanation, to my mind, makes the problem concrete and harder to get better from. Whereas I think if you conceptualize the problem as to do with your environment or your life choices or something you're doing that you should be doing differently, then you have a chance to get better. If you conceptualize your problem as what we now refer to as a functional neurological disorder, which is about brain connections, I think it's harder to get better. That was a very long answer, which was supposed to say that functional neurological disorder is a psychosomatic disorder and was hysteria.

SPENCER: Well, you say about something that you might do differently, but I think you mean that from the point of view of not blaming the patient, but saying there's something they can do that can make it better, which is different than saying they kind of made it happen to themselves.

SUZANNE: Oh yeah, I know it absolutely; they didn't make it happen to themselves. But that doesn't mean I often say to my patients, "We'll kind of equate this to the experience of having a very fast heart rate if you're frightened, just to help people get their heads around it. Imagine that you're frightened and your heart is going very quickly. You would understand that you're not doing that on purpose; that is utterly outside of your control. You would understand that you wouldn't expect me to say, stop it, snap out of it, because I also understand it's outside of your control. But we also both understand that it's not due to heart disease. It's a physical reaction to something that is external to you.

SPENCER: And then you could react differently once you notice.

SUZANNE: It's open to change, isn't it? Your behavior, your reaction is open to change. That's kind of how I conceptualize it. The idea of this mind-body connection is a difficult conversation. It has been replaced with neurological terms like functional neurological disorder. I fear that will backfire because someday people will wake up and say, "Oh, functional neurological disorder. That's the same as psychosomatic. It's the same as hysteria." Then we'll have to change the name again. What we should be doing is destigmatizing the whole concept, not just changing the name.

SPENCER: Right. If we understood what they really were and accepted them for what they are, we wouldn't stigmatize in the first place. If we're just changing the name, it's an ever-ending race to get to the next stigmatized word. But I'm curious, why do you say this sort of crazy disorder, as they call it? Why do you say it's not psychosomatic? Is there something different about it?

SUZANNE: You know what? I don't even know why I said that. I think the mechanisms are exactly the same, but I think it's quite a distinct disorder in itself. It's splitting hairs really because we often refer to these kinds of disorders, like grisi siknis, as culture-bound syndromes. They are particular collections of symptoms that happen for very specific reasons within small communities of people. They happen for very culturally specific reasons, have very culturally specific explanations, and culturally specific solutions. But at their heart, they have a very similar mechanism to a straightforward psychosomatic condition. Your point, which you made earlier, is probably what they really are. I think what you said earlier was very pertinent. What they really are is very elegant solutions to a cultural problem. There are many other examples around the world where physical symptoms — it's difficult sometimes to say the hard thing, and it's difficult sometimes to confront difficult problems head-on. Sometimes physical symptoms are like a dance that lets people know that you're not okay, so you can attract the help you want. The Miskito people do that very elegantly, and we do it slightly less elegantly, I would say.

SPENCER: The other thing about a term like functional disorder, I have to say it kind of annoys me, although maybe other people don't feel this way, is that it can come across as a doctor saying, "Oh, we know what's wrong with you. We figured it out. You have a functional disorder," when it's really saying, "We can't find any physical cause." I feel like it's weird to use that as a diagnosis in the same way you would use it to say, "Oh, you have a physical cause. You have this particular disease."

SUZANNE: I think it risks creating a wrong impression. I think the diagnosis is given when there's good, positive evidence for this being a functional disorder, based on the kind of anatomical findings I described before. But I fear, and I should say, many people don't agree with me on this. I think a lot of patients find this diagnosis comforting because it's a stigma-free explanation for what's going on for them, and it does lead to potential treatments like physiotherapy, etc. But my fear is that if you explain a medical disorder purely through the internal processes, while that gives relief, it can rob people of agency. So I prefer to conceptualize these disorders as a reaction to something outside, so that when you encounter the thing outside the next time, you understand how that reaction has come about, and you can react differently. Although it would be truer to say that my approach is right for some people, and thinking about these things as brain connections and functional problems is right for other people. So I think the truth is, I'm being a little bit unfair on the concept of functional neurological disorders because sometimes, when I use my approach, which is to really think about what externally has provoked this, that can be a difficult conversation for patients and can be alienating. Whereas sometimes the right approach is to use these more medicalized terms, and some people find that easier.

SPENCER: Yeah, it's really interesting because by giving it a medicalized term, on the one hand, maybe it can help people relate in a less stigmatizing way. Maybe it can give them some meaning to research. But on the other hand, it can give them the sense that this is completely outside of their control, or that this is the same as, "Oh, we figured out the exact virus that's affecting your body," which is a very different kind of explanation. So, yeah, it's complicated. One thing that really surprised me is, I imagine you've seen this, I've seen people react to your work almost as if you're saying something pseudoscientific, like, "Oh, you're a COVID denier" or something like this. How do you react to that when people say things like that about your work?

SUZANNE: My reaction is that that reaction only lives on Twitter, and I don't read that. That's my main reaction. I don't want to be the outlier doctor. I'm a clinical doctor. I work full time. I don't want to be the outlier. Since I started, I've written a lot about functional disorders, psychosomatic disorders, culture-bound syndromes, mass hysteria, and all of these related subjects. The reaction that matters to me is the reaction of other scientists and colleagues. I'm not saying you get 100% agreement, but the amount of agreement from doctors is really huge. I'm not saying anything that is unusual or anti-scientific. I am really voicing something, a conversation that we have within medical communities all the time that's quite difficult to have with the public. I'm always very encouraged when I write about these very difficult subjects, and I know that I have the support of my colleagues behind me. Obviously, there will be detractors, but that is very much the minority. I understand when people are upset by these conversations. I completely understand their point of view because these disorders are difficult to have, and it's a difficult conversation. I think the difficult conversation is one of the reasons that doctors sometimes hold back on giving these diagnoses when they feel that they are definitely correct. It's such a difficult conversation, but if we continue to shy away from difficult conversations, then this condition will remain as stigmatized as it is, and nothing will change. I appreciate that for some people, it's very hard to hear the things that I'm saying. I hope that they will appreciate that I, of all doctors, am more impressed by the severity of the disability and these symptoms than most. I don't mean to diminish the suffering. I think people still experience that way. I think we still have to have a difficult conversation, even if it is difficult.

SPENCER: Yeah, so from your perspective, you're expressing a rather mainstream scientific view, but most people are not willing to say that mainstream scientific view. At the same time, you have these doctors that come out, which I think you would say are a fringe view, that say, "No, there actually is an incredible epidemic of long COVID and chronic Lyme," and so on, who get a lot of attention and maybe people view that as the mainstream position.

SUZANNE: I think the conversation around long COVID is a particularly confusing one because when you're talking about long COVID with people, you never really know what you're talking about. Are you talking about the people who spent six months in intensive care, in a coma, or are you talking about the person who is a super fit athlete who didn't test positive and never went into hospital? First of all, when it comes to long COVID, you could be talking about two completely different things if you're disagreeing with each other. Also, when you have a group of doctors, I'm quite sure that my opinion is the mainstream view, but very often people with more niche views are extremely vocal. You can get the impression that large bodies of people believe a certain thing when you're actually really caught up in that echo chamber of the same small group of people saying the same thing over and over again.

SPENCER: I think that there are these doctors who genuinely believe; I don't think that they're frauds or something like that. I think they genuinely believe that a lot of patients are coming in with chronic fatigue or long COVID, etc. I've seen people go through this process where they feel like they're not getting good, mainstream medical treatment. They've gone to a lot of doctors. They don't feel better. Then they hit on one of these doctors that says, maybe you have chronic fatigue, maybe you have long COVID. They give them a test. The test feels convincing to them, and this doctor gives them a sense of hope, and the doctor says, "Look, I can get you better," and puts them on some kind of supplements or some kind of medical regime. I've seen this happen to people. What do you think of that phenomenon?

SUZANNE: What if people get better? I don't care what makes them better. I do care; there's a limit, obviously, to what I'm willing to accept as treatment to make people better. It's a little bit again, like the grisi siknis phenomenon. It may be that if you have an illness and you need a route to recovery, and you believe that route is a particular doctor who's giving some kind of odd, not mainstream treatment, and you want to have that treatment, and it's pretty safe, it's not something really extreme, then that's perfectly reasonable. Sometimes, to get better, I'm talking about the stories we tell ourselves about our body and the stories we tell ourselves to get better. If going to the alternative medical practitioner, for example, I have nothing against my patients going to alternative practitioners and getting treatment that I would consider completely placebo because placebo works and they get better. My difficulty, very often, with disorders like long COVID is that you go to this kind of outlier physician who says they know something that nobody else knows, and they can give you the six months of intravenous antibiotics that nobody else will give you. The high proportion of people who don't get better is concerning. If you get better, fantastic. That doctor has done you a good service. But if you are now trapped in a cycle of long-term alternative treatments, some of which are potentially dangerous, then I have a problem with it.

SPENCER: I think it also really undermines people's views on the efficacy of medicine. Sometimes the efficacy of medicine is overstated; there is a limit to our knowledge. There's a limit to how much we can treat disorders. But at the same time, Western medicine is figuring out a lot of helpful stuff. If you go down these rabbit holes, I think you can end up thinking that all of Western medicine is bullshit.

SUZANNE: There really is a very loud echo chamber out there when it comes to niche areas of medicine. It's very easy to believe that if you're absolutely desperate for treatment and you're encountering lots of people in this echo chamber who say, "Your mainstream doctor won't give you this, but I will give you this." Medicine is about recovery; making diagnosis and treatment is about making people's lives hopefully better. The problem with treatments that are not well grounded in science is they rarely make you better for long. It's a kind of sticking plaster.

SPENCER: You can bounce around from one alternative treatment to another for years. Imagine one day you wake up with mysterious pains. You go to the doctor, get checked out, get a bunch of tests, and rule out all the classic conditions. The pains are not going away. You're having them every single day. They're severely affecting you, greatly diminishing your quality of life. This goes on for months. What do you do? If this happens to you, what do you do next?

SUZANNE: I'd like to add that I'm awash with aches and pains, but I have a very deliberate approach of not paying too much attention and giving things time. Of course, I have the advantage of being a doctor, but what would I do if I were in that circumstance? The truth is I'm not 100% sure I'd know if I were in the circumstance of some of my patients because the mainstream health services don't deal with this very well. There isn't a very good home for these kinds of disorders. I'm thinking now of specific patients I've seen in this circumstance, and one of the things to do first is to try and figure out the point at which enough tests are enough. If you have a mystery illness and you feel absolutely terrible, extremely sick with it, and you've seen three doctors and had a number of tests, you have to find a doctor you trust who can help you figure out when enough tests are enough. It's very easy to find yourself in a situation where you're just being passed from pillar to post, having new tests with new doctors. What happens is when you have tests, they find irregularities that lead to new tests. It's perfectly reasonable to have things investigated, but try to find someone you trust who can tell you when to stop the tests.

SPENCER: There are going to be false positives at some point; if you get enough tests, you find a false positive, and you're going to get excited, thinking you found the solution, and then you go down some rabbit hole, and then you get retested in six months and realize you didn't even have that thing. Or is it worth an anomaly of the body?

SUZANNE: It's all making it worse. Every kind of anxious wait for the test results, every test result you get which turns out to be spurious. You do have to find a point at which you can stop having the tests. I think that's extremely important. I think it's also extremely important to start finding focus outside of your bodily symptoms and outside of your concern about your bodily symptoms, because a great deal of what is perpetuating them is the amount of anxious attention that is being paid to them. I guess finding something that is outside of yourself, that has purpose and is not at all related to your illness, might also be helpful, a little bit like your Burning Man experience. You need to have a purpose greater than yourself to recover from these. Unfortunately, I can't recommend specific doctors or specialists for these problems. That's why people end up going to fringe specialists, because mainstream health services don't deal with this in a fantastic way. It's important to find a doctor you trust who can say this many tests is enough.

SPENCER: Okay. Suppose you get to that point, you have a doctor you trust, you work with them. At some point, they're like, "Look realistically, more testing is not going to help you. You're not dying. We've ruled out all the serious stuff. Now what? What's the next step?"

SUZANNE: If I knew the next step, I think that's a phenomenally difficult question, because I don't think I know how to make these better. Perhaps there's a point at which you accept. If these disorders are encountered early, they can be made better. But let's say, as you're describing, you're six months to a year down the line, you're already pretty disabled, and nobody can fully explain it. You may have to accept that this is... I'm not sure. Sorry, I've got to rethink this answer. I don't know the answer to this question, which is, honestly, the problem, because there is no great medical home for these. I'd love to tell people where they should go for this when they get to that point, but I don't know where they should go. I think looking into physical rehabilitation with physiotherapists and occupational therapists can be helpful. Looking into psychological rehabilitation with psychologists, psychotherapists, or psychoanalysts can be helpful. But we also have to accept that not everything is curable and we can't recover from everything. You can certainly still live a life worth living if you don't allow it to be completely consumed by illness. I'm afraid I don't have a neat and nice solution to this, because it's a neglected area of medicine. I qualified as a doctor in 1991, and at that time, this was not even discussed during my neurological training. I must have encountered so many people with these kinds of disorders, but it wasn't really discussed. If you went to a neurology conference or read a neurology journal, even though about a third of neurologists' work is functional neurological disorders, it wasn't even mentioned in any of our academic meetings. The science of trying to address these problems is phenomenally new, and we're really only at the stage of still trying to understand the mechanisms using brain imaging and things like that. We're very much at the earliest stage of understanding these disorders. There are lots of brilliant people now working on it, and that's fantastic, because 20 years ago, I could not have said that. Now it is an area of interest for medicine. People are working on it. People are trying to figure out what the best approach is. But we are not at a point yet where we know what that approach is. There's no specific new treatment that I can recommend.

SPENCER: I think I would give guidance to someone in that situation, but I wouldn't say it's evidence-based guidance. I'm curious to hear your reaction to it. I think my guidance would be to go to a really good therapist, because at the very least they can help you live with this difficult thing in your life. The worst-case scenario is that a good therapist can help you deal better with this difficult thing you have to face. But it might be that you also have a mental health condition, like an anxiety disorder, that may not even be causing it but may be exacerbating it. Maybe symptoms work, or it could even turn out that this is deeply linked to the disorder. Would you agree with that piece of advice?

SUZANNE: I was going to say one of those lukewarm things where I wouldn't disagree, which I understand is almost the same as agreeing. Yeah, I would agree with that. I suppose the reason I hesitate is because we've got this really difficult conversation about how these problems develop. It used to be that, as I said, a hundred years ago, in Freudian times, every single one of these was blamed on some deep-rooted psychological problem, often some trauma, etc. That was a really difficult concept for a lot of patients because it was true for some but not for many, and that created a real difficulty in the conversation between doctor and patient. For a long time, doctors were saying to patients, "Something traumatic must have happened to you," and patients were saying, "No, nothing happened to me." It turned into this unproductive back and forth between doctors and patients, where we were trying to persuade people that they had a hidden trauma that they weren't admitting to, and they were swearing that they didn't have a hidden trauma. I think perhaps what I'm experiencing now as a doctor is a sort of hangover from that time in which I almost feel not allowed to say that it may be worth exploring deeper psychological traumas.

SPENCER: You might think you're seriously saying, "Hey, you're crazy," or something, right?

SUZANNE: Well, it's a very difficult conversation to have with the patient, especially if you're not a psychiatrist. If a patient goes to see a psychiatrist, they might very well expect them to ask questions about childhood traumas. If you go to see a neurologist because your legs aren't working, you certainly don't expect them to ask about childhood traumas. It's about the setting and the history of the disorder. I don't think it's a bad suggestion at all if you've exhausted multiple different avenues. I do say this to patients; I say to them, "You tried the MRI scan, you tried the blood test, you tried multiple different physical avenues. Why don't we, even if we're not completely sure what this is, try a completely different approach?" I would suggest what you are suggesting, which is more of a psychological or psychoanalytic approach. But I still, I guess, with you, I'm even kind of exhibiting how hard it is to have this conversation, in part because it can be quite alienating for patients, and in part because of the history of the condition.

SPENCER: That makes a lot of sense. I also want to clarify, when I say see a good therapist, I don't necessarily mean talking to a therapist is going to be, "Well, tell me about your relationship with your mother." There are so many good techniques they can teach you to manage anxiety in your life, understand what emotions you're feeling, and how those emotions can be affecting things. I tend to think that if I had to choose one therapy, I'd probably say cognitive behavioral therapy is a good start because there's a lot of evidence. It's not the only therapy with evidence.

SUZANNE: Oh yeah, don't get me wrong. I refer everybody to the neuropsychiatrist, but it's just about how we emphasize how that works in the scheme of things when you have predominantly physical symptoms. Everybody is referred to the neuropsychiatrist, and CBT is used to help people with these disorders with variable success. I think the success of that depends on how long the symptoms are there and how severe the symptoms are, but absolutely, it's horses for courses, as we say. It's different psychological approaches for different people. Some people may have a more deep-seated problem and need the traditional type of therapy we're thinking about, or some people might have a less deep-seated problem, and then a course of CBT may help those people.

SPENCER: I would emphasize this is kind of reacting to what you said, that this can be helpful even if it has nothing to do with their psychology. Just learning to live better with a difficult life circumstance, like if someone's going through a divorce, you might also say, "Hey, maybe a therapist will help." The therapist isn't going to solve your divorce, but you're going through a difficult life circumstance, right?

SUZANNE: Yeah, 100% I often think, because I also work with people who have brain diseases like epilepsy, which is not a psychosomatic condition; it's a brain disease. We often try different psychological approaches. Thankfully, tablets work for a lot of people, but for those for whom it doesn't work, we often involve the neuropsychiatrist, etc. Not because these people have a primarily psychological problem, but because when you are psychologically well, everything is better. Your diabetes is better, your asthma is better, your epilepsy is better. This brain-mind connection works whether you have a disease or you don't have a disease.

SPENCER: My understanding is that high levels of stress can exacerbate all kinds of symptoms. Even if it's not the originating issue, the other piece of advice I would give them, and I'm curious to hear your reaction to this, is trying to develop a different relationship with their symptoms insofar as possible, which is basically learning. You could have brought up one approach, which is distraction, which is learning to just pay less attention. I brought up earlier a different approach, which is mindfulness, learning to be less reactive to the symptoms and saying, "Okay, I'm feeling this, I can just live with this. It doesn't need to stress me out that I'm feeling it; it doesn't need to frustrate me that I'm feeling this. I can just notice what I'm feeling and kind of be mindful of it." I do think that those, even if they don't cure the disease at all, can actually be game-changing in the sense of your ability to function with the disease.

SUZANNE: I think this is one of the things that isn't a single kind of disorder or a single problem that has a single cause or a single solution. How people get into these kinds of traps, these looping symptoms, is different for everyone. An important part of figuring out how to help people is to figure out what triggered it, what's maintaining it, so that you can break that cycle differently for everyone. I think possibly one of the reasons that a lot of people don't get better if they get into the severe category is because we've only taken the same approach with everybody for a long time, which was to say, "This is a psychological problem," and not think about all of the other ways that these can happen.

SPENCER: Yeah, the last thing I think I would say, and again, I'm curious about your reaction, is you mentioned avoidance earlier, and I feel like that's actually really important. When we're dealing with symptoms, maybe something causes us to fade, or maybe it causes us to have pain. When we do something, we learn to stop doing those things, and it makes sense; it's a rational response. On the other hand, some of this avoidance can actually help perpetuate an issue or ruin our lives by causing all these other problems. That would be the other angle that I would suggest looking into: what are you avoiding? Can you start pushing the boundary of what you're avoiding and saying, "Well, maybe I can do this thing. Maybe I don't need to sit everything out?"

SUZANNE: I think these cycles of fear and avoidance, and how you respond to the symptom, are what's perpetuating the symptom, and you need to respond differently. If you can break that fear-avoidance pattern, I think that's really useful, but that's the kind of work that will often take place with a psychologist, to help recognize those patterns and break them.

SPENCER: Last question for you, before I let you go, suppose a friend or family member is suffering from one of these disorders. They're really suffering, but they've gone to a gazillion doctors and received a functional disorder diagnosis or no diagnosis. What can you do to be helpful, or what should you avoid to not be unhelpful?

SUZANNE: Yeah, I think first of all, it's super important that we're going back to the delicacy of this conversation. It's very easy to alienate people with theories about psychological mechanisms or your own personal theories about mechanisms for these illnesses. Very often, when people have a serious form of this, they have had to convince people that they are ill over and over again. How do you get better if you have to continually convince people that you're ill? That's very difficult, so I very much advocate for a non-confrontational approach. Don't try to convince people of your theories. Don't go headlong in with psychological mechanisms, because in that circumstance, someone who already hasn't felt believed and has felt belittled by a medical system might feel that they're being backed into a corner. I do think, to a certain degree, one needs to work with people's own formulations of how they understand their illness and what they think will make them better. But you need to find a balance with that, not joining them in the loop of fear avoidance that is perpetuating the symptoms, so encouraging them back to normality, but in a way that doesn't confront their own theories too much, because I think that can create a lot of antagonism, and then you lose the person you're trying to help.

SPENCER: That makes a lot of sense. It also seems like there's a real risk that they feel like you think their disorder is not real, or you're making it up.

SUZANNE: They're right to be worried about that, aren't they? Because a lot of people still think that way. Let's be fair. The reason that people worry that they will be accused of doing it on purpose is that this is a prevailing attitude that is not unusual. A lot of my patients go into the Casualty Department having seizures, and they meet medical staff who say things like, "She's putting it on. Snap out of it. Oh, it's that woman again." They hear people saying disparaging things about them. There is still a prevailing attitude, both within medical circles and outside medical circles, that these are heart-sink patients who could snap out of it if they wanted to. That's very much not the case, but I think I understand why people find this all so difficult.

SPENCER: Suzanne, thanks so much for coming out. It's a fascinating discussion.

SUZANNE: Thanks for having me.