The MEN1 Mosaic

#54 - Exhaustion in MEN1? Bloods Won't Flag THIS (Senior CBT Therapist & VHL Patient)

• Lizzie Dunn • Season 2 • Episode 4

Share episode

If you’ve ever spiralled after a scan, Googled symptoms until 2am, or felt like no one gets how exhausting it is to be so proactive all the time, this episode is for you. (Season 2, Episode 4)

Today I speak with Ed, a senior CBT therapist and VHL patient, about the subtle ways that chronic conditions like MEN1 can hijack our peace of mind. We talk about the pressure to do everything perfectly, how control becomes a coping mechanism, and why anxiety might be presenting as physical fatigue.

In this episode:
• When concern for your health becomes unhealthy obsession
• Why exhaustion might not be your disease but your need to control it
• How your disease can become your identity and limit your life
• Why purpose brings you back the power your diagnosis took away
• How to overcome perfectionism (a leading cause of stress)

About Our Guest:
Edward started his career in mental health first as a Psychiatric Nurse and then as a Cognitive Behavioural Psychotherapist, specialising in the treatment of severe psychological disorders. He has worked as a senior therapist in specialist National Services for Obsessive Compulsive Disorder, Health Anxiety, Body Dysmorphic Disorder and related conditions and has supervised many colleagues and trainee therapists. For the last five years, he has worked privately after setting up his own practice. Throughout this time, he has also been treated himself for a severe health condition called VHL, kept alive after various surgical procedures and medical treatments. This dual experience has led to a deep interest in how therapy principles can best apply to the challenge of living with chronic physical illness.

You can contact Edward here: ef_ed@outlook.com

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

If you feel overwhelmed by the unpredictability of MEN1 or your health, this podcast episode is perfect for you. Today I speak to senior CBT therapist, Ed, and we cover so many pertinent topics. Including how to accept your unacceptable circumstances in health. How to find certainty when no one can give it to you, not a single doctor and why a sense of purpose may be the missing piece in your healing journey right now. Let's dive back in.

  Ed, the first thing that I actually wanted to talk to you about was something that you wrote in your email, a lovely expression. You talked about healthy concern becoming unhealthy anxiety. Becoming so involved in my own healing journey, my healthcare, it has made me very interested in some things that other people might not even want to give any thought to. I sometimes sit there and wonder, would people think about these things as much as I do? Would I think about these things as much as I do if I didn't have MEN1. I zoom out and I look at myself and I think, when does being curious and interested and proactive, when does that border on potentially becoming obsessive, and what is the impact that has in clients that you've worked with or patients that you might know, particularly when it comes to disease? 

Well, that's a really great question. I've got most experience with obsessional and anxiety disorders, where by definition, life closes down. It narrows. We become over preoccupied, maybe give up the activities that used to give us meaning and direction. What I'd say about what you've just put there is that I think you're making something creative come of it. what you're doing is that you are broadening out your opportunities making sense of a condition. And that was a point I was gonna come to you actually, that I was how to make sense of living with a condition in the context of your life more broadly. And I think, you know, what I might say is a parallel to you is what I hope to have done with living with this condition is, and others can be the judge of this, but I hope I've become creative with it to the extent that I've tried to make something of it in terms of enhancing my practice as a therapist. That is something that I think keeps me on track, which is if this condition or all the challenges are inevitable, is there something creative and positive that can come out? So I think what you've described for yourself fits that bill. Actually, Lizzie, I, I think the hallmark it's not an unhealthy preoccupation is that it's a creative process for you that you are getting a lot out of and bringing that to other people. 

I'm thinking, phew, I've been given the all clear by the therapist. It's really lovely the way you described it as like a creative endeavor. That's exactly how I think of what I'm doing. There was a time in my MEN1 journey where my health, particularly when the disease lay low, when I wasn't flaring up and I didn't have symptoms. Honestly, I could go a day, two days, several days a week and not even realize I had the condition. Then fast forward to where I am now and people look at my work and they see MEN1 Mosaic podcast. They see my name and I wonder if people think, oh, you know, is she always thinking has she always got MEN1 on the brain? And I haven't always got MEN1 on the brain, but I have got my health and I have got my healing pretty much always on the brain. And I wanted to make it a project. I wanted to make it a project. And that must sound very strange to a lot of people because how can something very difficult and very challenging. Be compared to a project which should be fun and should be enjoyable. 

I think this is the key difference between what I'm used to with my work and the reality of, of living with a physical health condition, 'cause you can't always say that, the distress caused is always a product of the obsessional process, overthinking, et cetera, which can be said of a lot of psychological disorders, but in the context of having a real physical health condition, It would be unrealistic or even naive to say that it's not always gonna be there in your mind at some level. I think the question is what do we do with that reality, and as I say, I think if you're converting it into something healthy and creative, that's great. That was one of the points I was gonna come to later. But, but since we're on it, the idea of flexibility I think is very important to mental and emotional health. I think that we all might have a plan a of our lives and then something hits of serious physical health condition. And I think the important thing is that we don't say to ourselves that our to be creative and meaningful have then become ejected rather, we make the necessary adaptation get purpose out of what we inevitably have to live with. 

The key word for me in that was purpose. I don't think I've shared this with a single podcast guest yet. You might be the first, but my purpose, I believe in this lifetime is to heal my disease. And I say the word disease here, meaning two things. Disease. Okay. Yes. That's the diagnosis. That's MEN1. But I mean the dis-ease, the unease, which I believe is what sits underneath and as Thank you. I make a point to distinguish between the two, because often these words are used interchangeably and sometimes, it is difficult with conditions like the ones that you and I have, the word heal is a hard one to hear because sometimes it becomes conflated with the word cure or, and that's not necessarily what we're talking about. It's not a take a pill and everything goes away or undergo treatment and everything goes away. For me, it's a process of coming to know myself and coming to know how it is that I show up in my life and how that may be affecting what's going on internally. I honestly think it's about helping becomes about service and not only helping other people, but helping oneself as well. 

Yeah. Oh, that completely fits my philosophy too. This might sound a hard thing. For people possibly to hear it. So I try and make sense of it myself. So it's, so what I'm saying is authentic. You see, I would go so far as to say that really the details of the condition we have to live with is not so much the point, it's, it's can we refit our need for purpose from it? I'm lucky in that respect. I'll say that quite, quite happily. There's a relatively obvious bridge between living with my condition and being a therapist. So it's easy for me, or easier, I guess, to refit my need for purpose making sense of what I have to live with. But I do think that purpose is really, really important. There's a method that I quite like in my work, which is what I call the looking back technique. And when you imagine you are looking back on, say, the last five, 10 years of your life. What will really stay with you is what you've made of a situation that is something which gives you a more permanent sense of value and working towards something at almost a spiritual level. And so purpose, I think is the key thing here. I hope I can say that because my condition doesn't have a cure. So in a sense the healing of my dis-ease, if you like is to make sense of something which is just completely inevitable. I mean, I know what's coming my way, et cetera, in such a way that it still gives me the freedom to move with developing a sense of purpose. And if I can do that, then it means that the details of the condition are themselves not as relevant at the spiritual level.  

The more I sit with this word purpose, the more it's making me look back on what it was that allowed me to come to see my disease not as an inconvenience, I'm gonna say yes, as a challenge, but in a really good way, and you are, by the way, most welcome to share whatever you like on this podcast. Because it allows me then to do the same. I had to go through, a not easy journey actually to look at how it was that I was approaching my disease and where that might be contributing to my experience of the disease i.e. was the challenge I was going through necessitating the suffering that I was feeling and when I had all of these emotions going through me, and they could range from honestly complete denial to anger, to frustration, to sometimes a lot of positivity just to be able to get through it. It was about looking at how I was coming into that situation and what I was making MEN1 mean in my life. What meaning was I assigning to that condition?  There will be so many different listeners tuning into this podcast at very different points in their healing journey, and it may sound very odd for them to be hearing the two of us talk about purpose and finding benefit in something like disease. That's not what is necessarily true for them. This disease really is something that is an inconvenience. It is challenging. It is a struggle, and it can feel so helpless and disempowering because again, with conditions like you and I have, not only is the diagnosis itself quite difficult , to deal with, it's the idea that it's genetic and hereditary and somehow inevitable, and maybe that seals our fate. Maybe there's, there's no way around it. How do you work with the clients that you work with who are in that state where they just cannot see outside of the tunnel, which is, oh my goodness me, this is the way my life is gonna be for the rest of time. 

The clients I work with are almost by definition 95% psychological disorders. This sense of one's fate being sealed. I do think that shows up in my work with PTSD . Maybe the commonality between PTSD and living with a condition like this is perhaps that sense of rupture. There was your sort of previous self that was well, and now you've got this. And there's no one doing that. And what happens in PTSD obviously, is that people may get fixed on that sense of, well, there's no one doing what happened. And so we experience that sort of deep level rupture. There's an idea that is useful to borrow from something called acceptance and commitment therapy. So what works often, hopefully in PTSD is that even though the circumstances of your life might have taken a radical departure from where they were previously, underneath all of that, the sense of what's most valuable to a person, the values that we hold to, will remain constant. And I think if we can drop to that level of recognizing what's most important to us. So I'm gonna guess in your case, Lizzie, it's going to be, being creative. That doesn't have to leave you, even though the circumstances of your life have taken a radical departure. I think that's an important thing really. 'Cause in my work of PTSD sometimes people can see that even though at many levels they've experienced that rupture, when it comes to the most fundamental level of, what your values are and living in accordance of those, actually you realize that at the most fundamental level, perhaps there hasn't been rupture realizing that. Prior to my diagnosis back in 2003, I was training to be a therapist. That was my value. That hasn't been affected. Maybe recognizing that level that still persist in oneself protect us against the sense that all is lost or our directions have become incredibly limited. What do you think? 

I love what you said about creativity being the important thing to me, and that just because of this rupture, it didn't necessarily change that. That the circumstances in which myself and that value were operating might be different. But my identity hadn't changed, put it that way, and it made me think about conversations I've had with a lot of different people, particularly those who are maybe further down the line of a healing journey. Maybe they've put their condition into remission, if that's possible. And they've said that they look back on where they were at the lowest point and somehow their disease or their diagnosis have become an identity. So they were operating within certain parameters, and on one hand, feeling absolutely stuck because they didn't want this. You know, they didn't ask for it and it felt unfair. And they were stuck behind a glass screen looking at everyone else their their life and they were the such and such patient. And then on the other hand, they said, with a certain amount of self-awareness, they could see a sense of familiarity and comfort within those parameters. And it was almost like that label, if you like, the name of the diagnosis, the disease experience, what was that giving to them at the time that maybe they thought they wanted to let go of? But actually when it came down to it, it was so familiar, it was frightening to let go. 

Yeah. Yeah. I know exactly what you mean by that. I'd have to be honest that, that if, so as I say, my, my situation, my, my condition is incurable but if I were to imagine some magic pill that I would, that I took tomorrow, and suddenly the disease just vanished. I would probably wonder what on earth to do with myself. That's what I mean about trying to find your balance on the head of a pin because that fusion, that identification with your disease is probably inevitable. But as I say, it's whether your response becomes life limiting or life enhancing. I'm lucky 'cause I think I found a life enhancing response to it as a therapist and your creativity too. So it's a really interesting one that, how do you make sense of the absolutely inevitable? and I do think, and again, this is gonna sound very difficult potentially, but I speak for myself. I do think it's at the most fundamental level what we make of that inevitability might a choice. It's no choice to have the condition, but what to make of it. I think we can retain that sense of choice at a certain level. 

I couldn't agree more. No one has asked to have this diagnosis. No one has done anything to deserve this diagnosis, but for me, one of the most healing things that I come back to in my journey is personal responsibility. And people shiver when they hear that because they start to think oh, is it my fault and what did I do wrong? And it's not about that. It's for me, responsibility is quite literally the ability to respond in the moment. So in the situation in which I am, how do I choose to move forward? . 

I completely agree. I completely agree. The distinction between the two, and this also comes up in case your viewers are curious in compassion focused therapy as well, where you say it's not your fault that certain things have happened in your life, in your landed with various afflictions and what have you, but it is your responsibility to find your way through that and to make the best of it.

I think there's another thing which is important, which again just for the purpose of clarity, I'm speaking very personally with all of this at the moment, which is that you see, if I recognize that it's my responsibility and it's my choice to find my way of making the best of this, that I can in a way that I really like the term, by the way, toxic positivity in a way that doesn't go in that direction, but goes in an authentic direction, then that leaves me with work to do and I can value that, with the time I still have. There's work to be done in making more sense of this in a way that could possibly help others, et cetera. And if that's the case, then I can't ever wish away what I have because if I begin to do that, if you begin to get into a struggle with trying to control the uncontrollable, that's when your anxiety is going to soar. So I find that very important for me. I don't wish it away. I really don't. This is what I've been landed with and I don't need to get religious about it, but this is what I've been given and it is my responsibility to work out the best I can do with it. So, I think we're on the same page with that. 

I love what you just said. Control the uncontrollable. I sometimes look at the world around, and it's as though we are beings somehow that absolutely thrive when we believe we have control, and yet the world we live in. There is no such thing really as control.

We think we have control, but we don't, and I think this disjunct is compounded hugely by disease because any kind of healthcare is a pursuit of knowledge and in some ways I look at knowledge as a polished form of control. So sometimes what we don't know, we then fear because we want to know and we want to understand it. How in a world that is inherently so uncertain, can we hope to gain any certainty as patients of a disease, or is the answer just that we should be able to let go completely.  

In accepting what we can't control. It doesn't have to leave us adrift 'cause I think what it does actually is that it frees us up to focus on what we can control. You are doing your podcasts, et cetera. Me with my work, and also the day-to-day things, the things that we know are still valuable to us and the things that we know we can enjoy And get meaning from. In accepting what we can't control, that frees up energy to redouble our efforts to make the most outta what we can control. So that's one way of flipping it, that actually the radical acceptance of what's beyond our control clarifies, what we can still do. 

And what is within our control, in your opinion, and in your experience. 

It's learning, it's putting energy into our relationships, into our friendships. It's bringing value and meaning into our lives through our immediate environment. That's always available to us you see, that's within our control .  

The only thing really that's in within my control is myself, and I think it's very easy to want to control what's outside of me, whether that's my doctors, whether that's my family, whether that's other people, whether that's what's going on with my work. I don't know whether sometimes in this day and age with the rapid advances in technology that we have, whether we are being given the impression that we have more control externally than actually we do. We believe that in order to progress forward, we've got to have what looks successful on the outside. And we think that comes from being able to control what's gonna get us there. When actually all that's really in our control, or I believe anyway, the thoughts I decide to entertain in my head or keep there all day. The actions I take and the words I speak, my focus, my attention, and it's not really anything to do with anyone else. What do you think on that? 

I do agree with that. I think one of the things which is again, it's not toxic positivity. I think it's just sort of a bit like judo, how you can roll with the energy in a way that it doesn't overwhelm you or dominate you. For me, there's a certain freedom here because there is no blueprint of how I should be responding to this. My sister had it, but she passed away many years ago. I don't really know anybody else. The liberation of that is that I'm not have to worry about measuring up in terms of external expectations. free to forge my path through this so that the uncertainty and the unknown can be a positive in a way because you are free. To make sense of it as far as you can. there's something liberating in that. Not having to up to anyone's else's expectations in this regard. I'm gonna just explain what I'm saying here just a little more broadly outside of the context of my particular illness. You see, I think there's enormous amount to be gained from actually embracing uncertainty. So we all might have an evolved bias towards safety, certainty, security, et cetera. But I keep in mind that saying, be careful what you wish for because actually the things that can give our lives longer term value, surprise, joy, the unexpected, new learning, that comes from the uncertainty in our lives. So in a sense, if we did wish for certainty, which is very natural to us, and it were to come true, we might find that actually the ingredients of life that give its real value would become missing. So I think of OCD here, I sometimes say to my patients, okay, so, your need for absolute order and certainty, et cetera, what would your life look like if that came true? What would happen to those moments in life that are predicated on chance, discovery, unexpected meetings, new learning surprise and joy and what have you. If that were to be eradicated, 'cause we achieved our dream of control, we'd find we'd lost the purpose of living. 

I love the way you've put that and I will share personally that I have found it easier to embrace uncertainty the more I've realized that I am most relaxed when I let go of the need for control. 

Absolutely. Just to add on your point there, Lizzie, I think it's not so much the fact that we have uncertainty in our lives, that's the problem. It's the demand we make on ourselves around that. If we start saying that uncertainty is intolerable or unbearable, unfair, et cetera, then we only land ourselves in further trouble. One, one of the things I quite like to do with clients who do struggle with tolerating uncertainty is to really expand their routine so they're voluntarily moving into greater uncertainty. 'Cause if you move towards a thing, you can, in a sense befriend it, or at least reduce the threat. So in OCD for example, I find it very helpful to ask people to go beyond their normal routines and do novel things, do things they never would've really thought of doing. Go to new places, seek new experiences, new relationships, et cetera. 'cause then when you're moving towards a thing that produces physiological changes, it produces dopamine, et cetera. So again, it's not so much uncertainty is the problem, but whether we voluntarily move towards it or whether we avoid it and recoil from it. So it's there to be embraced.  

Yes. I love the way you phrased that. It's actually the demand that we make on ourselves, I think you said, which is what causes the suffering, in my experience anyway. I often feel like I catch myself striving for perfection because perfection feels safe, because it feels successful, because it feels known, because it feels. Like I'm good enough to be doing what I'm doing and it's exhausting. I speak often about symptoms in MEN1, one of the very common ones being fatigue or exhaustion, often from high calcium and. I haven't yet shared this with my community. This will be the first time they're hearing about this. But I had an appointment recently with a consultant and a few weeks prior I'd had the first bout of real fatigue I'd experienced in many years. And I said to myself, it must be 'cause my calcium's high, has to be 'cause my calcium's high. I've never felt this particular type of fatigue. And he came back, he said, your calcium's totally normal. All I know is that in those two weeks I had been putting so much pressure on myself for a particular thing that was happening in my life. And emotionally what we put ourselves through as human beings is possibly as exhausting as the exhaustion we receive from whatever disease we're going through. This is why I mentioned at the beginning, disease and dis-ease, where are these two crossing over? The diagnosis, which is meant to present symptoms in my body. Where actually is my body presenting just a load of discomfort with the way that I'm living my life? 

Oh, I completely agree. And since you mentioned perfectionism, I'll come back to that 'cause that's a big part of my work too. You are absolutely right that if we place demands on ourselves either to have an expectation that our lives work out just right or maybe it's more of an internal thing where our demand is to achieve excellence all the time, perfectionism puts an enormous amount of stress on the body and in the context of living with a physical health condition, perfectionism and the demands it creates will produce very high levels of stress hormones in the body, cortisol, et cetera, which can't be healthy really for any type of chronic physical health condition. So I would say that perfectionism is contraindicated for learning to live with a long term physical health condition. Just on that point actually, going back to our culture's, expectations of us, one, one thing that I find really helpful in my work is to bring up this term Wabi-Sabi, which is a Japanese term where imperfection is actually embraced. There's a philosophy around it that you find in pottery and calligraphy, where imperfection is embraced, it's seen as a beautiful thing. In my work with Body Dysmorphic Disorder, I found it's really hit home for a lot of people that actually embracing imperfection, letting go of the pursuit of perfection, but really fully embracing imperfection is really life enhancing. 

So if I were an MEN1 patient whose imperfection, let's say, I believe is my health, I believe is MEN1, it's the fact that I believe my body doesn't work in the same way as others. When I see that as the cause of my suffering, how do I learn to embrace that imperfection? 

Maybe it's the demands to have fully functioning health, that is the problem. And maybe the sense of conditionality that, in other words, we can only feel like fully viable human beings if our health is fully functional. I think it's probably important to challenge the conditions that we put on ourselves so I think radical self-acceptance is the way with that, where you see the whole and whilst you can't wish away a physical health condition, it doesn't have to define you. One of the things that I was preparing to speak of earlier was this sense of obsessional preoccupation that I see in my patients and if the thing that is really occupying our thoughts can't be wished away or it can't be cured, in the case of physical health context, what you can do is you can just expand your perspective. So it is a part of you. It's a segment of that pie chart rather than the whole thing. 

I am writing all this down 'cause honestly, you come up with some really brilliant analogies and very visual ways of seeing things, which I think will massively help a lot of people to maybe see and accept their experience of this condition in a way that they weren't able to before. And I'm very grateful for how open and welcoming and compassionate you are in this space towards I think what a lot of MEN1 patients particularly want to hide, which is their fear, which is their anxiety, which is their concern because it's all consuming, and yet they don't want anyone else to see it because they don't want to be a burden. They don't want to be a bother. One of the questions that I was going to ask you was, I have found it very difficult to accept help in any part of my journey, but especially when it comes to MEN1, and I think that's for so many different reasons. I think that's because I learned strength as not asking for help as being able to do it on my own, not showing emotion, being able to twist the tap on my tears or whatever it needed to be. I learned strength as having the knowledge before anyone else, and particularly having the right knowledge before anyone else. Of feeling very defensive and protective about the way that I go about my health. I still feel like that. I still don't enjoy being challenged or being asked questions that I don't want to answer about the way I do things and why I do them. Why is that? Why do we feel so protective of those parts of us that maybe other people want to see and want to reach out and help, but we want to hide? 

The first thing I might say, and I'm only saying this 'cause you volunteered the term perfectionism. One of the things I do find is that for certain psychological disorders work, perfectionism is a very, very major component. Like OCD, that you get this long span between the onset of the condition and asking for help. And why is that? I can't give you a scientific answer, but just anecdotally, I think it's what people say to themselves that if they're strong, they should be able to work it out for themselves. The demand is to be able to find the answers, to find our way through independently of anyone else. At least in the context of what I'm used to working with, that sort of sense of internal demand, to be completely autonomous and completely independent is part of the problem in a way. One of the things that I help people do is break down that belief and actually convert it into the acceptance that actually, there are times when reaching out for help is the strong thing to do. Again, I'm just going to speak a little bit about some of the beliefs I find in my work. A degree of black or white thinking that unless we are completely in control or we're completely autonomous, then we flip into dependency and weakness. Whereas actually I think, there are a lot of shades of gray in between those two ends of the spectrum. Other ways of looking at it may be that by seeking help from others, what we're doing is that we're giving ourselves a better chance of regaining autonomy over the longer term. So they're not mutually exclusive standpoints. 

You mentioned about that flipping between autonomy and complete dependency. Again, I don't know if this has something to do with my perfectionist disposition or any of the other behaviors or patterns that have ruled my life so far. But I am definitely a person of extremes. I tend to do things properly or I don't do them at all. I'm very black and white. I need it one way or the other. And it becomes very difficult because life is in the nuance. Health is in the nuance. Healing is in the nuance. Do you agree? 

I, wouldn't normally say 100%, but on this occasion, yes, absolutely. Completely, completely. You see if we do have that very black and white view of things, and in relation to health, if we're saying that we could only enjoy a fully viable life if our health is completely okay, then the problem with that is that when we do get a condition, which is gonna obviously remain with us, whatever we do, there may be a chance that we flick then into 100% negative reading of that and what you said there about that sense, your fate is sealed 'cause it's not the condition really taking us there, it's our prior black and white beliefs and demands. So actually, if you place the vagaries of our health in a particular broader context, you don't have to wish it away or eradicate it in order to connect to those other values that makes life meaningful.

 There's such gold in this conversation, I'm already getting excited to be putting it out there. I wanted to go back to something which we talked about right back at the beginning, which was this ball, not a balance, but the line, if there is such a thing, between healthy concern and unhealthy anxiety, I'm gonna say this is very prevalent with MEN1 patients and particularly the ones who come and find me in my community. So many of them are right on the front line of their healthcare. They're proactive, they're engaged, they're curious. They are asking the questions in the appointments, they're doing the research out of their own interest I guess. But they come to me and they say they don't really know when it is that they stepped over this line and suddenly what they don't know becomes frightening and scary and is starting to make them feel anxious to the point at which they can't sleep. They are losing their appetite or they have a funny tummy. Can you talk a little bit about that? 

I use term unhealthy just because I'm thinking in terms of when our focus begins to produce effects, like we're shutting down from those other avenues in our life, we are becoming avoidant. We're retreating into ourselves. We can't think of anything else. Obviously it's a continuum from healthy concern to unhealthy anxiety. So what are the signs of that? May be a good marker are we giving up activities that we used to enjoy? Are we beginning to live for the condition rather than with it? Are we finding that the things we used to enjoy, the social activities that gave us meaning and energy, are we closing down from those? I think there's a really important point that I hope has a practical application which is are we living as fully as we can within the actual medically diagnosed limits of our condition? Or are we beginning to create for ourselves limits? If a consultant says to me, look, Edward, you really shouldn't do X, Y, and Z, that's fine. I'll accept that, but I've gotta be very careful i.e. don't over time begin to invent my own X, Y, and Zs as a form of coping because there's a good chance that if that involves avoidance or retreat, that's going to lead to higher anxiety and depression and what have you. So I, I think being very clear with your consultants what the real limits really are and keeping that in mind. And up until that point, live fully. The other thing I'd say is, and again, I speak for myself, having the discipline to keep our curiosity in check so that it's helpful for us. I think asking your doctors more about the condition, that's all good. That's all good. But I think what we wanna do is probably limit our search for more knowledge and information to those interactions. One of the dangers that you find, and this happens in health anxiety, which is a psychological disorder compared to living with a Health condition. So in health anxiety, one of the things that makes it really awful and one of the ways that people begin to lose, control and slip into high anxiety is they begin to take it on themselves to do all of their own research, Googling symptoms, et cetera, and that just turns into a nightmare because suddenly you are filling your mind with all sorts of speculations and frightening prognoses in an unguided way. Maybe I slipped up a few times, but I never try and do my own research or Google symptoms. I remember I did it once on receiving a letter from a consultant, and that's a big mistake. I think disciplining ourselves in that way is really helpful. And then I think we can keep our curiosity and our healthy concern in check. 

You know, I'm so glad you just said that 'cause I did exactly the same thing. I received a follow up letter to a scan that had not gone through an MDT. I think it had just been commented upon by the radiographer there at the time. It was just full of medical jargon. And honestly, the way I interpreted it was as if it was the end of the world, honestly. And then because at that time, I didn't have an awareness of how my mind would do that to me and what was actually perceived reality versus, actual reality. I didn't have practices that helped me stay in the moment. That helped me not spiral things out of control. It became a a massive deal. And I remember my consultant ringing me up and saying, I in a very kind and compassionate way, he said, I don't know what you're getting so bothered about. What do you think is gonna happen? But isn't it absolutely fascinating how the mind can literally create its own reality that's completely false? 

Yeah, yeah, yeah. Absolutely. So one of the things I'd say defines healthy concern is the power of discernment. To know when a threat is real and to know when it's not. And the problem is if we begin to go too much in the direction of, excessive preoccupation, doing our own research, et cetera, our anxiety will increase and we begin to lose the ability to discern between what's really the case and what's the result of our worry and catastrophizing, et cetera. And then we really find that we are losing control and the anxiety goes up. So what I'd say about that is that healthy concern will involve focusing on our health condition when it's warranted by the external situation. As far as possible at other times, I think it's really healthy to try and keep our attention to be focused on those other things in our lives. So we need to be able to come to our health, but we need to be able to do so with a clear sense that it's indicated by the situation and not the product of our worry or uncertainty, et cetera. I know that's a hard thing to say. I try to do it for myself. Not always easy, but I think it's probably a good measure to keep in mind. 

You've given a couple of very tangible examples there of ways that we and I can stay aware of what's happening in the mind versus what's happening in reality right now, and I think so much of it for me has been about having compassion for the big drama, the big blow up, because I know that is my animalistic brain doing exactly what it needs to do to keep me safe, but long term, that is such an unhealthy state to be living in, that is a state of dis-ease in my opinion. And so to be able to have some control over that, that funny word, control, which I hate using, but in here it really fits, that is where my control is ultimately. 

Oh, absolutely. I completely agree. I'm going back more into the context of my work here, but I do think it's important that someone like me, a therapist, recognizes that all of those responses to a situation where there's threats and uncertainty our responses to it of catastrophizing worrying, all the rest of it, overthinking, rumination, et cetera, et cetera, et cetera. All of these are entirely natural survival responses that have been triggered. So it's really natural but, we want to be mindful . 

This has been a most fantastic conversation. I have enjoyed every little tangent that we've gone on. I think we've touched on some really interesting topics here. Things that I haven't been able necessarily to talk about with other guests, just because they haven't necessarily got the experience from a therapeutic point of view as you have, but also you have the patient experience, which I know with this audience anyway is like gold because there's nothing more validating than listening to someone who can offer trained expertise, but can also offer personal guidance on a topic. And for that reason, I really believe this episode will be a hit. I'm very grateful for the generosity and time that you've given over to us today. So thank you very much indeed.

If you are feeling curious to explore any of the topics Ed and I spoke about in this episode today, maybe health anxiety, perfectionism, or how to create a life that accepts MEN1, rather than fighting it, find Ed's details in the description box below wherever you are listening to this podcast. To find out exactly how I've stopped my symptoms in MEN1 without meds or surgery, join my email community and I'll send you a simple guide that walks you through my process.