222 - Jake Hollis - What If Validation Is A Treatment Too

I talk with clinical psychologist Dr Jake Hollis about recovering from ME/CFS and Long Covid, and why the nervous system offers a more useful frame than the tired “mind versus body” argument. We explore how validation, language, and recovery stories can shift the brain’s predictions and open up real possibilities for change. 

• Jake’s lived experience of long-term illness and a slow recovery path 
• How neuroplastic recovery therapies fit alongside biology rather than replacing it 
• Why recovery stories can create a visceral nervous system shift 
• The harm caused when recovered people are disbelieved or silenced 
• How the mind body divide shows up in healthcare systems and culture 
• Biomarkers, legitimacy, and why absence of a test is not absence of illness 
• Mental health stigma as a hidden driver of conflict and miscommunication 
• Emotional suppression, shame, and “keep calm and carry on” conditioning 
• Blame versus responsibility as a more compassionate recovery framework 

Links:

More about Jake: www.fatiguepsychologist.com
Unlearn Your Pain in the US and in the UK
Howard Schubiner chats to Rangan Chatterjee

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter 0:45

I am delighted to be joined today by Dr. Jake Hollis. And Jake is a psychologist but also has lived experience. And I am so excited to get into wherever we end up today. So, Jake, welcome to the podcast. It is so nice to have you with us.

Jake Hollis 1:07

Thanks, Jackie. Yeah, it's a real pleasure to be here. Happy to be here.

Jackie Baxter 1:11

A It's gonna be awesome. So, do you want to start out by just saying a little bit more about yourself and I suppose what you do and what brought you to this point?

Jake Hollis 1:23

Yeah, so I'm a clinical psychologist. I live in Brighton in the south of England. And I started out in this area of working with people with long COVID and chronic fatigue syndrome, MECFS. Um, on the back of my own experience,

Welcome And Guest Introduction

Jake Hollis 1:41

as you just mentioned, yeah, I got ill uh at the very beginning of the pandemic, early 2020, and ended up ill for about five years uh with MECFS, and that was my diagnosis, and I sort of had on long COVID myself because that was in the mix, I think. Um, and as I know is true for many people that you've interviewed, went on a long and winding journey, um, initially very kind of credulous and looking for mainstream medicine to give me the answers, and

Jake’s Five-Year Illness Journey

Jake Hollis 2:19

very gradually learning that that was not happening, and that mainstream medicine really didn't understand my illness, um, and gradually kind of arriving at this understanding that my symptoms were real, but um very much at the confluence of brain and body and mind and body. And with that, I kind of learned about certain therapies um that are today described as neuroplastic recovery therapies, things like pain reprocessing therapy and emotional awareness and expression therapy. And I did an online course with a coach who you've interviewed, I know, uh called Rebecca Tolin, and that was a big game changer for me. All that being said, it still was a slow burn. Um, I was ill for five years, and I probably was actively doing that kind of work for a half of that period. So it took over two years to really fully recover. Um, and I was so moved and inspired, and my ch my life was really changed quite radically by that experience that it would have been, you know, odd to me to not do something related to it, especially given that I was uh a clinical psychologist by training. So I've come to specialise in this kind of area of of chronic fatigue syndromes and long COVID using these kind of mind-body interventions, but I'm very keen on trying to evidence things using science and drawing on the emerging research base for those kind of therapies that I mentioned, which um certainly meant a lot to me when I was recovering to know that there was a coherent and scientific explanation, um, which I think is what most of us are longing for, or certainly many of us. Um yeah, and that's that's what I do nowadays. I did work for the NHS for about eight years, including a stint in the long COVID service. Um, but I didn't really feel that I was able to fully uh use this work freely in that setting. I guess understandably perhaps because the evidence base was seen to be too nascent and and emergent. But now I'm free to kind of practice in in the way that makes sense to me. And I enjoy my work very much. I get to work with all sorts of fascinating people, and I see people do recover and and make r uh really significant progress over time, not to say that it's like miraculous or instantaneous or too good to be true, because usually it's painstaking and hard won. But yeah, I've become sort of obsessed and fascinated by this work.

Jackie Baxter 5:19

Yeah, it's amazing, isn't it? I mean, it sounds like um you and I are quite similar in the kind of gone down the rabbit hole, um, maybe a slightly different rabbit hole in a slightly different way, but a rabbit hole nonetheless. And it feels um it's like the more you learn, the more you learn there is to learn, and the more you want to learn, which very much appeals to me and my kind of um sense of curiosity about the world. And um what I love so much as well is that you're bringing here, you know, obviously your lived experience which cannot be bought. You know, it's it's well, you know, to use your word painstakingly one, um, but but also your your sort of clinical background as well. Um so it's the kind of two sides of the coin that that make up this sort of very powerful, I think, kind of, you know, approach and and conversation. Yeah, it's it's brilliant to to have the

Lived Experience As Clinical Strength

Jackie Baxter 6:15

the two side by side. I think, you know, it's a it's a what am I trying to say? It it gives a side to you as a practitioner that you wouldn't have other ways, I think.

Jake Hollis 6:28

Yeah, well, thank you. I appreciate that. And I without sounding, I don't know, grandiose, I feel the same way, but not because there's anything uniquely special about me, but because as we were talking about just earlier, so many people um have been transformed by these recovery journeys and have found themselves directing their their work in this direction, and it's for good reason because given the current climate in which um the evidence base is is getting there, but it's not what it might be, and hopefully that will change over time, you know, it does make sense that you want to work with someone who can point to more than just uh research study but their own personal life, you know. I mean, what what's more powerful than that? I know that was true for me when I when I did that course with Rebecca Tolin, hearing her story that she'd recovered after, I believe, 13 years of MECFS. Like I just really felt I was sort of standing on her shoulders, if that's not a clumsy metaphor to be using. Sorry, Rebecca. Um, but I uh I often feel like uh there's that deep connection with my clients too. That uh one of my clients, um I don't think she'd mind me saying this. Obviously, I'm not sharing anything confidential, but she was very kind to say that when she was struggling, you know, in her recovery, she would sometimes think that, well, the thoughts I'm having now that I'm really struggling with, the experiences I'm struggling with now are probably you know all things that Jake's been through. And just having that connection is pretty deep, and it's not something that I'd always always um experienced as a psychologist before. Sometimes, you know, you you're working with people whose life experiences uh diverge erratically, and that can be a good thing in some ways, but I can't help but feel that I'm serving my tribe, so to speak, and it's a diverse tribe at that.

Jackie Baxter 8:31

Yeah, I think that's a really beautiful way of putting it. And you know, you're so right about the stories as well. I mean, I I remember Rebecca saying when I spoke to her that uh that she'd had a similar, you know, one of the main turning points in her own recovery was when she spoke to somebody else who had been there and got it. Um, and I remember personally as well, you know, the first person that I heard that had recovered and the first recovery story that I had here on the podcast, you know, it was so powerful because it's that, okay, someone, someone has done it. And then you start to hear more and you hear more. And some of those stories you relate to, and you can see a lot of yourself in that person. And some of them you're like, no, that that doesn't mean anything to me at all. And that's totally fine, isn't it? You know, it's having lots of different stories out there because you will relate more to some of them or or find them more useful in some way, and that doesn't mean that the others aren't useful, but maybe not personally to you. Um, you know, I I think it is it's the power of well, storytelling, I suppose, and and hope and inspiration that that are incredibly important.

Jake Hollis 9:39

I agree, and I would add to that, um, Jackie, that it's certainly those things, but it's also, and this is me getting a little nerdy, but since um, you know, I've learned more and more about the science of persistent symptoms, it makes even more sense to me that hearing those stories firsthand from someone who's lived it can have actually a visceral impact. Like I know that when I watched uh Rebecca Tolin's recovery story on Raylan Eagle, I think it was, um, I felt something shift. You know, not not to say that was it, I was suddenly better, but you know, it was a long, long, long haul. But um something happened inside. There was almost like a uh visceral shift inside of me, and that may sound woo-woo on the surface, but when I try and make sense of it with neuroscience, it starts to make quite a lot of sense because

Why Recovery Stories Land Viscerally

Jake Hollis 10:35

of what we now know about the brain effectively being this predictive machine. How its job is, well, its main job arguably is keeping us in balance, you know, biologically, and the way that it tries to keep things in balance is making predictions based on um all this information traveling towards it from the world outside, from the world inside, from our history, and some of that information includes hearing uh other people have recovered from this illness that hitherto you've been told scary things about, you know, shockingly small uh percentages of people who are supposed to be able to recover, etc., which can be kind of self-fulfilling, can breathe this despair and uh this spiral, right? Whereas, you know, that that cycle can be reversed and go from a vicious cycle to a virtuous one, like a hopeful one. And yeah, so it is storytelling, but it's also storytelling that can register with your nervous system, your biology, which is just amazing, right?

Jackie Baxter 11:43

Absolutely. And I'm so glad that you have opened the gateway to nerdery, because I am so down for that. Um but uh yeah, you're you're so right. You know, you you do feel something, don't you? I think, you know, and you know, for me, this is one of the frustrations of um of certain spaces on the internet where things like recovery stories and hopeful stories, not necessarily full recovery stories, but you know, stories of where people are seeing improvement and they found something that has helped them and they want to share that. And some of those stories are not allowed in certain spaces. And I find that such such a frustration, again, as someone who has recovered and who has been the power of sharing those stories and how they make you feel and the belief that they can instill in you and the hope that that they give you. Um, just it feels it feels wrong to me. And I find myself incredibly frustrated by it. When and especially as you were saying, you know, it's it's not just woo-woo, you know, it's not just that it puts a smile on my face today, but tomorrow I'm gonna be sad again. You know, it's it's actually that that that can create uh an actual physical shift.

Jake Hollis 12:59

Yeah, yeah. No, I feel I feel you, and I think you mentioned in your email um that you may have had some experiences where on the back of your recovery people then came to doubt that you actually had long COVID, is that right? Um I had something similar myself.

Speaker 2 13:20

Thank you.

Jake Hollis 13:20

And it it's really, yeah, it's bruising, isn't it? It's really quite painful. Um because there's there's certainly an irony there that obviously there's a population of people who have been gaslit and really poorly treated in many cases um by you know healthcare professionals sometimes, by people in general, even by their family. Um it's it's awful and it is traumatic. Um but then to feel that you're then being told that you actually

When Improvement Gets Disbelieved

Jake Hollis 13:56

weren't part of this tribe, you didn't have it after all because you've recovered, and if you recovered, you never had it. It's this kind of tautology. It it's um it feels a bit like gaslighting, to be honest. And I I know we have to be really sensitive to the realities of those who are living with this illness, and and many of whom have been living with MECFS for like years and years, certainly a lot longer than I have, and I have to respect their experience. But um Yeah, it's tragic really, and I think it speaks to something larger. I'm not about you know attacking individuals, but there's something cultural, I guess, that sets us all up to fail, and I think that goes to the heart of limits of mainstream medicine, of the mind-body divide, etc. Uh sorry, I'm opening all sorts of tangents, aren't I?

Jackie Baxter 14:52

I I love a tangent. Um, but you know, I I I think you're right, and yeah, you know, it's I I certainly have had that experience, and I know other people who have recovered who have had their experiences doubted, and it is incredibly hurtful. And to me, it sort of feels like um making out that the worst experience of your life wasn't real. You know, it's it's that lack of validation that often we feel in the early stages of illness, and that validation is incredibly important. Um, but I just think, yeah, that there's maybe a way of holding both of those spaces where people who are ill can have the respect and the validation that that they are unwell. And what can we do to help you in this space where you currently find yourself, but also this person who has recovered has made it through this terrible, awful experience. And, you know, we need to honor that space and their story. And also maybe we could learn something from them, you know, maybe not me, but maybe someone else who's recovered if someone doesn't resonate with my story, but you know, there's someone else out there who who will. So I I think there's there's space for both.

Jake Hollis 16:07

I I'm with you on that, Jackie. I really like what you just said because you are speaking with a lot of sensitivity and respect there on both sides. Um, and I think, you know, those of us who are enthusiastic about neuroplastic therapies and the mind-body connection being a way to make sense of these symptoms. Um, sometimes in our enthusiasm, we might fall into traps of invalidating other people and assuming that what worked for us will work for everyone. Um, which to be fair is is not scientific, is it? You know, we have to be humble and have humility. And yeah, no, I think we're on the same page clearly, but there's there's so many many missed opportunities, aren't there? There's there's a lot of um sadness around that, I think, for me, and I know for lots of people that yeah, as I say, I feel like this is a tribe. These are a this is a group of people who have a common experience that you described quite rightly as for most people, you know, the worst thing that's ever happened to them, perhaps, or certainly up there. I know it was for me. Um and I wonder without getting too I don't know, trying to psychoanalyse all of us, um you know, there's something there, isn't there, that that something very, very traumatic and overwhelming can can cause us to become very entrenched in our views. And and I'm not saying it's more one side or the other. And the fact that I'm even talking about sides is itself problematic, isn't it? Yeah.

Jackie Baxter 18:31

Yeah, and I think you brought up a really interesting point there about the kind of the the two sides as well. And um, I think we're still on the same wavelength here because that was exactly where I was thinking about going next. Um, because you know, you started out very early in this conversation by saying my symptoms were real. Um and, you know, I I I think you know, it's like, well, well, obviously. Um, but um, but at the same time, you know, there are people who have felt like they have been told that they are making it up or that, you know, quote unquote, it's all in your head. Um, you know, and and it's possible that the person wasn't actually trying to say that, but they said something very clumsily, um, which it can definitely be the case. Or it may be that they did say that. Um, but I think you know, there's there's a lot of issues around miscommunication, and sometimes that's through being clumsy, and sometimes it's through the problems of different language, um, whether that's you know, as in sort of different, you know, French and English, or the kind of you know, medical and non-medical, or even just you know, two words for the same thing that that sort of, you know, the the two that spring to mind are sort of nervous system and mind-body that can be used kind of interchangeably. And I think some words are more easily accepted than others. And I think a lot of people don't like mind-body because the way I see it, it's that can feel like it's all in your head. Um, but I I don't know if if that's actually true. That's just kind of the way I see it. Um, but what I would love to kind of throw at you is you know, you're you're a psychologist,

Why Two Camps Form

Jackie Baxter 20:19

you have had the lived experience, um, you know, you're you're working in this space, you're um what where where is the kind of join between the two factions? You know, why are there two factions? And can can we kind of look at the kind of overall picture here in a way that that says can can we not just meet in the middle and and talk about this? And because the the the kind of the the the fight is not helping anybody, is it?

Jake Hollis 20:56

No, that's a good question and a big question. And I'm feeling the weight of it. But let me let me see uh some initial thoughts without assuming that I'm gonna suddenly solve the mind-body divide. But um I I would say from where I'm sitting um and the way I'm thinking about things, I think a lot of the problems are not due to individuals but systems and culture more general, yeah, uh more generally, and we could probably go back in history and look at um the what you mentioned, English and French, French philosopher René Descartes, who famously or notoriously, uh, depending on your perspective, suggested that the minor body were completely separate entities. Um and to some degree, Western culture, as I understand it, and certainly medicine, Western medicine anyway, has very much subscribed to that implicitly. Now I'm not saying that your average doctor will completely agree to that idea, like religiously, but you only have to look at the way that our health services are laid out. You know, literally you go to one hospital for mental health and another for physical to see that there is a glaring divide there. And even within medicine itself, within sorry, physical health itself, there's this kind of compartmentalization, this siloing off of different systems in the body as if they're discrete entities that don't necessarily communicate with each other. And I think all of those things contribute to um

Descartes And The Mind Body Split

Jake Hollis 22:45

setting all of us up to fail, uh those of us who have these illnesses, because these illnesses transcend these divides, you know, the mind and the body being separate. Well, long COVID, MECFS, and any number of persistent symptom uh conditions can't be understood in one or the other as as I see it. And um, you're quite right, you know, whether the language of mind body might sometimes alienate some people. Talking about the nervous system, I think you're you may be right, maybe a more um neutral and and maybe more helpful language because we are talking about biology, of course. But if we think about the function of the n the nervous system, the brain, um it is the intermediary really between mind and body. And besides that, it kind of speaks to the irreducibility um of mind and body and brain and body that they're they are one and the same. You can't have biology uh at a human level without psychology being involved, and you can't have psychology at the human level without biology being involved. So um it's very easy, isn't it, to find ourselves getting a bit tangled up in language. I think language, as you say, has so much to answer for, and unfortunately, um it emanates that kind of um paradigm, that framework for understanding health and illness being one or the other, um uh has led to this kind of strange hierarchy where some sorts of health issues are seen as quote, more legitimate, more real, more valid than others. Um you know, in mainstream medicine, typically, if there is a biomarker, if there's a small pathogen that can be found in the body and studied through scanning or microscopic imaging or something like that, usually that's taken as a sign of legitimacy, validity. Okay, we know your symptoms are quite real because we can see the pathogenic cause in the body. Unfortunately, for those of us with conditions like long COVID and MECFS, um, as yet, there there aren't consistent diagnostic biomarkers. There's not a single pathophysiological cause that we can look at and declare this is the cause of these illnesses. There are those who hold out hope that that may change. And you know, it would be unscientific of me to say that that um that I that that's not true because it may turn out to be true, but if I was betting on it, I'd imagine that it might never be true because it's more more multifactorial, more complex. Rather than there being a single cause, uh, there's very likely multiple causes interacting. And some of those might be psychological, uh, mainly, and some might be more biological. So obviously,

Biomarkers And The Legitimacy Trap

Jake Hollis 25:54

many people who get ill have a viral um trigger, some have a bacterial trigger, some have another kind of biological insult to their body, maybe it's a surgery or something like that, or some other kind of illness. Um, not everyone, of course, but very often that trigger is, you know, operating like a kind of straw that broke the camel's back, on you know, in terms of an organism that has already been carrying the stresses and strains and traumas uh of a lifetime, some of which are psychological. Um, so clearly it's not um what's the expression? It's not one or the other, right? It's both and as I see it. And for some people it may be more one than the other. So there might be some saying, you're trying to psychologize me, I don't have trauma, I don't find it particularly helpful, you assuming that I'm just repressing it all. Thank you very much. Um, I think we have to respect that and say, Well, you might be right, you know, your particular um pathway to illness may not have had as much psychological kind of influence, but I think we can destigmatize all of us if we accept that human beings are psychobiological organisms living in a social context. So, you know, ultimately it's going to be a degree of one or the other or both interacting rather than trying to split into two camps. Um that was a little rambling. I hope that made some sort of sense.

Jackie Baxter 27:30

I think it was such a rambling question that that you didn't really have a very good start point to to jump off from. But you know, I I think you know you you've kind of unpicked that in a way that that makes a lot of sense. And you know, and I think also gives space for everyone to, you know, stand with whichever particular bit they they feel like they can. And you know, again, it's not a one person's right, the other person's wrong thing either. You know, I I think everyone, I've not I've not done a single recovery story with anybody or heard of anyone's experience who did just one thing, you know, and and for some people it is a case of doing a little bit of this and a little bit of that, and then you become open to other things, and that gives you a little bit of that. And it's not the case of told you it was mind body, you should have just started out with that. You know, maybe maybe they needed to do the other things first, or or maybe maybe they just needed to get to a space where they were open to that, or or you know, it's kind of allowing people the space for their own journey, isn't it? And I think um one of the things that you touched on, you said about um, you know, biomarkers equaling legitimacy, um, you know, I think is hugely powerful as well. And I I wonder if this is why long COVID MECFS can sometimes get lumped in with, you know, quote unquote, just mental health, because in my understanding, things like anxiety, depression don't have biomarkers either. So, oh, okay, well, you had a heart attack, we can see that. There's a thing that proves that that's a real illness. Long COVID, no, there's nothing really there. We don't have a biomarker for that. Well, we'll stick it in the mental illness camp. And, you know, I don't think I need to tell you about the kind of stigma around mental health. And, you know, I think, you know, that there's there's a lot in there that's that's problematic, isn't it? You know, and and as you've just said, you know, that that none of these things are just one or the other. But I also think that mental health shouldn't be stigmatized in the first place. I mean, if if that was more um I was gonna say the word acceptable, acceptable to have mental health problems. I don't know if that's quite the right word, but you know, if it was treated with the same respect or um oh, I can't quite find the right word, but you know, if it was treated with the same respect, let's say, as a physical illness, then I sort of feel like this discussion might be less of an issue as well.

Jake Hollis 30:04

Yeah, I'm so grateful that you raised that, Jackie. I think that really does go to the heart of things and it gives me the opportunity to kind of echo what you say. I think um the first thing I did want to say, excuse me, is that um on the biomarker question, you know, you're quite right that there aren't diagnostic biomarkers for most, probably all mental illnesses, you know, mental health diagnoses. But at the same time, there are um genetic um markers, there are rather you know genetic predispositions, so that some people might have greater expression of uh anxiety, for example, than others th through nothing else but their biology, although I say that, and then our biology is itself shaped by epigenetics, so the experience of our parents and how that influences the way our genes are expressed. I'm only saying that just because currently there's um some excitement from some quarters around a genetic study around MECFS, um which some people are uh taking to be a sign that it's quote purely biomedical. Um but I think it's good to acknowledge that, you know, everything, you know, any human trait or characteristic, including anxiety or uh prone to depression or neuroticism or whatever, has some kind of genetic component or predisposition that we're all everything. Like I kind of was saying earlier, in a way, language is slightly impoverished because we can't quite do justice to our holistic selves, that we're not one or the other. We're we are biology and psychology and environment rolled into one. But coming back to the the really very, very important thing you say about mental health, I'm very passionate about that too, because obviously that's my training. Like I'm a psychologist for the most part. I trained and worked in mental health. Uh, occasionally before I got into this area, we talk about physical health, but it was in the framework of helping people cope with physical health. But mental health um has obviously undergone some sort of change in its in public discourse in the way we talk about it, in a mainly positive way that people are more willing to talk about it. I wonder whether maybe that acceptability word, you know, the word you might be looking for would be something like destigmatizing, perhaps something like that. Um, but I think you're quite right. There's there's just this awful historic hangover from um a time not so long ago, and still really here to some degree, and certainly in many parts of the world, where people who experience mental distress in inverted commas, because again, we could just call it problems with living, part of being a human being, are vilified and shamed and stigmatized and sometimes uh you know very horrendously oppressed and discriminated against, and sometimes sequestered away, sometimes tortured, like you know, this is like a real shame on humanity, the way that we've responded to our own suffering, you know, by shaming ourselves in that way, sometimes institutionally, sometimes medicalizing distress. Um and it it's really, really important for us to to name that, and I don't actually hear it talked about explicitly very often. So I'm really glad that you mentioned it because you know, even in conversations with people I work with who are open and curious

Mental Health Stigma Hurts Everyone

Jake Hollis 33:50

to the quote, mind body field, there's still uh, but I don't have mental health problems, thanks very much. And at the same time as wanting to respect how they would prefer to understand their difficulties. I wonder about those people who do have, quote, mental health difficulties. How are we positioning that population of people if we're arguing vehemently like I have a physical health problem, I don't have mental health problems? Like implicitly, we're saying there's something basically wrong with a a large swath of the population who do have mental health problems. And uh it's not for me to nudge other people as to how they should describe themselves, but I think that when I got ill with long COVID and MECFS, there were mental health components to that, and there were physical health components, and it's very hard to separate the two, and I could go on and on, and like there's another tangent here I'm just gonna throw out there we can avoid it or not, but there's a lot of research about uh how we understand emotions and physical symptoms, and how they're actually potentially almost the same things, anyway. They're very, very similar. Um, we've historically put one in the mental health category and one in physical health. Um, and this science of neuroscience, the brain, and its role in keeping the body in balance has a lot to offer us in understanding how just how kind of fallacious and old school and antiquated a lot of those ideas were. And touch words, you know, over time, the very conversations that we're having to have now will seem really embarrassingly old school, just for those reasons you say that you know, mental health, physical health, it's all about some sort of suffering, pain, distress uh that we might experience in terms of physical or quote mental health symptoms. You know, it's they're not that radically different, in my opinion.

Jackie Baxter 36:22

Yeah, and I I guess it comes back to kind of like you were just saying, whatever it is that's causing you pain, it is important and valid. And let's see what we can do to help you. And you know, there's there's crossover between those things. I mean, certainly in my own experience, I um, you know, someone someone told me, oh, you should see a therapist. And I was like, oh, I don't need to do that. Um, and uh I think part of it was the kind of I'm not mentally ill. Um, but I think it was also um, you know, embarrassingly so I kind of thought, well, I've got partner to talk to, you know, or them. Um, but um, you know, I I sort of thought, okay, fine, I'll I'll do it. It's it's something that sounds like it might be useful, you know, and and like you were saying, it will help me to deal with the other stuff that's going on with me. It's not going to do anything more than make me feel better about what's happening. Um, and to be fair, even if that was all it had done, it still would have been worth doing. But actually what it gave me was was far more than that. And um I think what was it was really interesting as you were talking about um the the new the new additional tangent now of emotions, um, you know, emotions are another kind of, I don't know, stigmatized is the right word, but kind of, you know, one of these kind of things that you know, we literally print details in the UK that say keep calm and carry on. You know, if that's not trying to tell you to repress your emotions, I don't know what is. You know, we we get told that, you know, boys aren't allowed to cry or you're not allowed to show weakness, you know, and and as a woman, you know, if you show emotions, then you're hysterical, you know, and you're not taken seriously. And I'm sure people have all sorts of other examples of where they've been felt, you know, where they've felt like they weren't able to express themselves and be themselves. And again, from my understanding of neurodivergence, you know, people who who are neurodivergent probably feel that possibly even more because they they are quote unquote different. Um so it's it's this kind of um yeah, you know, need for legitimacy. But in our need for legitimacy and validation and being allowed to be who we are, you know, we're we're so judged or stigmatized or whatever by by other people that that we, you know, we we it's almost like I wonder if we're looking for validation in the wrong place.

Jake Hollis 38:53

I like that. This is getting deep, isn't it? This is, yeah, we're getting deep. We're getting philosophical, but it's it's good. Um yes, I think you're you put your finger on something really important, which is that we live in um an emotionally phobic culture that is well exemplified by those T Tals that you alluded to, keep calm and carry on, is really the emotional suppressors motto, isn't it? Really? Um, and you know, there are different iterations. Certainly in the UK we have a you know unique kind of stiff upper lip ism, but I know that other cultures have their own iterations. Um, but for sure, uh, and I think it's healthy to extend it to that level of you know society and culture, um, in addition to the fact that many people that I work with, you know, there's definitely something going on in families as well, uh, at a family level. And obviously, families live in societies and cultures, so they're influenced by by the bigger picture, but there's a common kind of trajectory that I see of people that I work with, and I'm not gonna just talk about them in the abstract, I should talk about myself too, because I identify as someone who's learned to suppress emotions, and in many cases, there may be the influence of society, um, but there's also the influence of our childhood upbringing, and again, it's a delicate one because I have a good relationship with my parents and I love them deeply, and they're good people, uh, they really are, and I I care a lot about them, and I don't want them to feel upset, you know, when they hear this stuff, but I also want to honour all those people that I work with and honour myself that there were things that happened in my childhood and things that happened in other people's childhoods that do teach that that that message that some emotions are not okay to be expressed, and it's very often not explicit, it's not that we have terrible parents who are abusive and mean and cruel and vindictive, and you know, we could caricature them as uh villains. It it's it's usually way more complex, uh, and that would probably be a good summary of this whole thing, right? It's always more complicated than we like to think. So,

Emotional Suppression As A Learned Pattern

Jake Hollis 41:17

so often it might be that you you gave the good examples of gender roles, you know, as a boy, maybe I expressed um sadness and may have been shamed in some places, you know, it's not manly, you need to toughen up that sort of thing. Girls, very often the reverse, it's almost like you can be sad and quote vulnerable, but you better not be aggressive because that's um unladylike, apparently, right? So these are all kind of laying down emotional learnings, you know. We might give them some psychobabble label like uh schema or something like that, but essentially they're things that we learn and that are laid down, you know, in our brain, they're wired in that to some degree we might learn that it's not completely okay or safe for us to be expressing particular emotions or sometimes emotions in general, and that could extend to quote positive emotions like pride, you know. If you're you've expressed pride in something you've done as a child, and your parent has told you, oh, you know, don't get too big for your boots, you know, be careful, you don't want a big head. That's also implicitly sending you messages to the effect that, oh, there's something that's not quite okay here with me expressing something, something real emotionally. And then, you know, along the way, we might learn to then automatically and unconsciously experience some sort of emotional response to those core emotions. So if I experience anger or sadness, but I learned it's not okay, I may automatically find myself living in anxiety and shame and guilt. These would be called kind of blocking emotions. We could we could describe them as because they're serving to push down the core emotion. And then because living in anxiety, shame, and guilt isn't a very fun way of living our lives, we're gonna then block those emotions by um using what we might describe as sort of protective strategies, anything we can do to distract and disconnect from those feelings, whether they're the core emotions or the other, you know, blocking emotions, you know. So, so through no fault of our own, really through no fault of our parents, you know, if we're being really honest, like if we were to blame someone, we'd probably have to go back to the dawn of time through generations. Not you it's a fine balance. So obviously, we want to apportion responsibility and we need to take responsibility for ourselves as parents as well. All that being said, um yeah, um, our brains can get very confused and get wired to block and suppress and disconnect very, very healthy emotions. And emotions are ultimately survival programs, they're wired by evolution to keep us safe, to keep the body in balance, to maintain homeostasis. So, really, ironically, if we've learned to suppress the emotions, we're kind of disrupting a neurobiological process that's designed to keep us healthy. And you know, you only have to think if we do that long enough and habitually enough, it's going to do a number on our health. And yeah, just in case it wasn't obvious, what we've described is really important that it's all mediated by the nervous system. So that same process of suppressing emotions can easily lead to a quote, a physical health problem like long COVID or MEP, uh MECFS, sorry, or it could also lead to any number of psychological difficulties like depression or anxiety, or um, you know, all sorts of offshoots of anxiety disorders like OCD, generalized anxiety, etc. Um, and even more severe, you know, um complex trauma presentations, etc. Yeah, so uh another tangent, I I think, but anyway, that's that's where I went with it.

Jackie Baxter 45:08

Yeah, I I think you brought it back beautifully as well, because there was something you said just towards the end of that um about sort of blame and responsibility. And I think we can get those two words confused as well. You know, I think you know, we want someone or something to blame, and you know, often we'll blame it on a virus if that was the start of the story, which will have it was never the start of the story, but you know, the start of the story as you knew it. Um or you know, it might be trying to find a parent to blame, um, or it might be feeling like someone is trying to make you feel like it's your fault. Um, you know, and I think that's what a lot of people. People often feel they're being told, you know, that if it's down to emotions and um, you know, life choices, then it's your fault. And, you know, I think there's a big difference, the way I see it anyway, between blame and responsibility. It's not your fault. You didn't ask for it, you didn't bring it upon yourself because, you know, you would you you didn't make those choices knowing this was where you were going to end up. And some of them weren't choices, some of them were things that maybe happened to you without your consent. Um, so it's not your fault, but that doesn't also mean that we can't take responsibility for how we work through it. And that might be overwriting old patterns and making new life choices, or it may involve all sorts of other things. But it's that kind of for me, it's taking ownership or empowerment, you might call it, of saying, okay, this is where I am. What am I gonna, you know, what do I need in this moment? What's the best thing that I can do for me right now? And uh sometimes that can be quite hard to see, but it's also probably quite easy to see some of the things that aren't gonna help you in this moment. Um, so it's yeah, I don't know, maybe I've taken us off on another tangent now.

Jake Hollis 47:10

No, I'm happy. I I'm with you. I think we're we're quite in sync, actually. Like, yeah, what you just reminded me of is um something I quote back to to many clients I work with, which I read in a book by a neuroscientist called Lisa Feldman-Barrett, who happens to be a leading, world-leading neuroscientist, but she's also written some very accessible

Blame Versus Responsibility

Jake Hollis 47:32

books that I think are pretty relevant to this area. And somewhere in a book, I think it was uh her book called Seven and a Half Lessons About the Brain, she writes something like um some things are here. We go. Some things we have to take responsibility for, even if they're not our fault. And the reason might simply be because no one else is there to take responsibility for us. And I like that because it kind of felt like it spoke to where I was at in recovery. There are some times where you just feel like you're done with it, of course, and that's really legit and understandable. Um we're not about you know shaming people into snapping out of it. Like sometimes we just want to be with that. I mean, I would say always we want to be with it, we want to honour it as best as we can. Um, but at the same time, yeah, it's not your fault. If you're living with these conditions, isn't it's very obviously not your fault. And if you were to get the message when I talk about the role of emotions and psychological distress in um making you more vulnerable to getting ill, if you hear that and feel like I'm blaming you, then let me try and make it really, really, really, really clear. It actually couldn't be further from the truth. Like if I'm saying that emotional distress and having learned to disconnect from your emotions may well have led you to develop survival strategies, personality traits like perfectionism and people pleasing, and being hyper-responsible and very driven, etc. None of that's your fault. In fact, it's miraculous, it's brilliant that you developed those ways to survive and and to honour your environment. That's what you needed to do to get by and to be okay, and very often to stay connected to caregivers. Um, so that's clearly not your fault. It's also a really cool thing that you did for yourself. Uh, but the fact that that may in turn, you know, what served to function really protectively and helpfully and adaptively when you were young and vulnerable and dependent on caregivers, uh, ironically, of course, can then do a number on us when we're adults if we're still living by those same patterns later on. And, you know, it's it's it's a delicate one because I came across a comment online recently, I think someone said something like to claim that emotions and trauma have something to do with my physical health problem is an awful thing to do to someone. And that breaks my heart to hear because I hear someone who's really been wounded by the insinuation. Uh and yet um we still need to collectively find ways to be able to communicate that possibility, even if it's not true for that individual, which I'm happy to hear. If that's not their experience, then it would not be helpful for me to decide knowing nothing about them that actually I think it is. But for some people, it is a big piece of the puzzle. Certainly most people that I work with, and naturally there's uh bias there because they seek me out, because they resonate with what I say, and I don't want to work with people who don't want to work with me, right? Um, respectfully, you know, I don't want to try and help you if you don't want me to to try and help you, right? I get that. Um, but uh there's a fine line where we need to clear-sightedly think about the role that some of these things may have played for some people in a way that honors their suffering, that legitimizes the reality of their symptoms, um, but it also usually can be very, very empowering and help people um not only know that there's some things that they can do to actually recover, but just understand themselves better. There's so many people I work with when we do this work that there's like a collective uh sigh of recognition, understanding, okay, things are starting to make sense, okay? And maybe there is a part of them always always suspected that this stuff may have had a role, but because it hadn't been presented in a way that that felt palatable or that was not blaming, you know, it wasn't easy to hear. And going back to what you said earlier, some people have just done damaging things and said awful things. And you know, I've worked with medics, psychologists who have themselves become ill and have been kind of victim of their own professional culture because all their medical colleagues have said it's not a real thing. So they've ended up gaslighting themselves and saying, deciding that their own symptoms aren't real. Um yeah. Anyway, another tangent.

Jackie Baxter 52:38

Yeah. And I think again, it's it's that I don't know if you want to call it holding space or validation of, you know why why is it anyone's role to believe or to unbelieve? Um, you know, who who is it that's kind of sitting in judgment on that? You know, surely if someone says, I am struggling with this thing, then we should believe them. And, you know, it's somebody's role to to try to help that person. And I guess that person needs to be involved in whose role it is, um, you know, whether they want to work with a doctor or a psychologist or a coach or you know, any of the theologists that we have out there. And um, you know, some of them, some of them may be appropriate for what that person is struggling with and some of them may not be. And sometimes you've got to rule things out before you rule things in, you know, and that's the whole thing of the long COVID diagnosis, isn't it? That, you know, it is that kind of diagnosis of exclusion. Um, but um, I think, and I don't know, I mean maybe I'm naive and simplistic, but um I I just think the whole idea that we should disbelieve someone's experience seems completely um completely wrong to me. And I just I don't I don't understand it. And I and I think often it is a case of miscommunication, um, you know, or or you know, on yeah, on on multiple sides possibly. But um I just I I think yeah, I I wish we could sort of listen and respect people for who they are and their experiences rather than trying to decide what we think they should be and try to put them in our box, you know, or you know, um put our labels on them. Can can we not let people work that out for themselves with the help that they want?

Jake Hollis 54:34

Right. I know it's it doesn't sound like too much to ask, and in in many ways it sounds basic, like a kind of like how do we communicate with each other in a human way, right? And it sounds obvious, and yet in answer to that rhetorical question, like who actually gets to be the disbeliever, etc., or the arbiter or the judge, unfortunately, the way that we set society up, there are people who who are paid

Systems That Force People To Prove Illness

Jake Hollis 55:02

to play that role, including sadly people who, you know, make decisions over whether someone should receive uh benefits or not, right? And very often what I hear is that one of the tests uh for some people at least, I I know it was true for some people I've spoken to in in the US, that that there is a very clear threshold that must be met in terms of that um medical understanding of symptoms. So there needs to be some kind of uh respected biomedical label and diagnosis, and that would be like someone's gateway to being able to live their lives in a somehow okay way with some modicum of dignity and being able to get their basic needs met with a real debilitating illness. So so it is it's a great question, but the irony is no, there are people who are playing that role, and it also includes medical professionals and other healthcare professionals, and again, without wanting to attack individuals, because I really don't think it's individual an individual problem, it's it's a systemic problem. Because I personally know many medics who are very, very interested and on board with mind-body work and who practice it. Um, probably a lot more than psychologists, I ironically, perhaps. Um having said um all of that, like that, yeah, there's there's an issue, like we are setting ourselves up to fail. It should be straightforward, you know. Someone's suffering, we default to believing them and and the legitimate legitimacy of their symptoms. But I think the upshot of it all is that there is emerging science that helps explain what's going on in a robust scientific way. It's just likely that most medical and other healthcare professionals aren't that familiar with it. And that's not their fault. They haven't been trained in it. I wasn't trained in it when I was training to be a psychologist, and it's only, I'm sure it's true for you, so for so many people, it's only through the crazy experience of being ill ourselves that we find ourselves becoming nerds and experts in this emerging science and ending up educating uh health professionals about things like how the concept of predictive processing can offer really useful explanations for how the brain produces physical symptoms even in the absence of identifiable structural damage in the body. Who knew and who would know unless unless you read the research? And that's what we all need to be doing. We need to be disseminating and sharing. And thankfully, there are people and organizations that are doing that, but as you know, and this is kind of a neat full circle, perhaps, coming back to that divide. There are many people who are very resistant to that and and view attempts to share that science as somehow invalidating their experience. So that brings us back to communication and language. Um so we're getting quite circular here, aren't we?

Jackie Baxter 58:20

Yes. Ah, and you you've done my job for me as well, which is wonderful. Um, you know, I I yeah, I I think I think you're right. And um yes, it is uh it's a challenge. But um yes, I I definitely have to say I never would have seen myself reading books on neuroscience as bedtime reading a few years ago. So um if if I can if I can change. Um so uh yeah, I I think um the circular nature of our discussion probably means that's quite a quite a beautiful place to leave it. Um before we do, maybe we can ask a final question of I'm gonna put you on the spot here. If there's one thing, and again, this could come from personal experience, professional experience, or probably a mixture of both. If there's one thing that you could recommend that people do or look into or approach, can you think of one thing that that would be a really good starting point for anybody in this space?

Jake Hollis 59:31

Yeah, I'm not gonna overthink it and I'm gonna go in my gut and also the book that happens to be on my desk right now. It's um a brand new book by Howard Schubiner. It's called Unlearn Your Pain. Not to be confused with his earlier book of the same name, that's now being retitled, I believe. Unlearn Your Pain 2026 edition is um, I would say it's like a real um milestone in the field. Um, it's a really accessible, well-written, compassionate, funny, and scientifically grounded exploration of the neuroscience of persistent symptoms. Despite the title, the subtitle is actually The Science of Recovering from Chronic Pain, Fatigue, Anxiety, and Depression. So, in a way, that's circling back on everything we've said, how mind and body aren't so different, and how fatigue is absolutely amenable to these kind of approaches as well. You know, I appreciate that for some um reading might not be possible right now. Uh, there is an audiobook, and if nothing else, I would encourage you to listen to a podcast in which Thubener talks about the book. I think he did one recently with Dr. Rongen Chatterjee. Uh, there's also a dedicated chapter to long COVID. So, if nothing else, I would actually say don't worry about reading the whole thing. Start with that chapter. And the second half or third, the latter part of the book is dedicated to these therapies like what can I actually do? So pain reprocessing therapy, emotionally, emotional awareness and expression therapy. It's actually, I just think it's an amazing book, and I'm glad that we

A Practical Starting Point Book

Jake Hollis 1:01:23

have it. And he's um, you know, a bit of an OG in the field, and we owe a lot to him, and I'm grateful. So I wanted to share that.

Jackie Baxter 1:01:32

Absolutely. And I will make sure that I link in the show notes both the book and the episode um that you just mentioned, because um I haven't actually got around to seeing the whole thing yet, but I've seen some of it and it's really eye-opening. Um, so uh so yes. Jake, thank you so much. I feel like this has been such a fun conversation for me. Um, it's been fascinating. I hope that everyone listening has been able to take something from it that is able to help them in some way, even if it was just the need to be validated, you know, which is which is huge. Um, so uh yeah, thank you so much. It's been my pleasure.

Jake Hollis 1:02:15

Thank you, Jackie. And getting even more full circle, I just want to thank you for creating the platform for people to share these ideas. And, you know, I talked about how we need to communicate better. So hopefully we're trying to do that at least together.

Jackie Baxter 1:02:29

Oh, thank you.