121 - Pamela Rose - Difficult Conversations in Chronic Illness

Episode 121 of the Long Covid Podcast is a chat with Fatigue Coach Pamela Rose about those difficult conversations that can come up time and time again. We chat through some of her experiences and how they have led her to be able to work with & help people.

And we also dive into those difficult conversations - which ones tend to come up most often, and how can we best handle them?

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter
Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to welcome my guest today, Pamela Rose, who is a fatigue coach. And we're going to talk a little bit about what that actually means in a moment. And all sorts of other things we're going to dive into today as well. So a very warm welcome to the podcast today.

Pamela Rose
Thank you so much. It's lovely to be here. I've been looking forward to this.

Jackie Baxter  
Yeah, me too. So, before we kind of dive deep, perhaps you would just say a little bit about yourself? And maybe what brought you to here, if that's not too wide a question?

Pamela Rose  
No, no, no, it's a good place to start. Well, the quick answer is that I've been there myself. I was diagnosed with MECFS. Back in 2010. So 14 years. It'd been going on a little bit longer than that, but formally diagnosed in 2010. So yeah, I've been there myself, I had a fairly lengthy journey. It was seven years really to get back to a true some semblance of the life I had before. 

And I find myself, as I got more and more well, I found myself thinking, I'm not sure I want to spend this lovely newly regained energy going and working at a bank, you know, for very much longer. And that's what I did. I worked at a bank, I was back there, I'd successfully got back to working full time. Indeed, I'd got a promotion during my journey. But I decided actually, I wanted to use my lovely regained health for, you know, more worthwhile things. 

And that's when I started to think about the fact that I wanted to basically become what I'd needed back in my, you know, in the days of my own journey, I suppose. So yeah, so I've been there. I was pretty, you know, pretty bad at the beginning, like, like many people do. There were stages of my journey, of course, but I spent, you know, the first several months largely housebound, not able to work, not sure what on earth was going on for a long time? And what was going to help? 

You know, if we, if we think there's a little clarity around that now, believe me, back in 2010, there was even less. So yeah, it was a tough time, a difficult time. But I'm back. I have been for a good few years now. And life's good again.

Jackie Baxter  
Amazing. And you know, what I think is just such a beautiful thing is that there are so many people like yourself, who have been through this horrendous experience, and have come out the other side. And all they want to do is help other people who are still there. And it's I just think it's amazing. And I suppose that's to some extent, what I'm doing myself as well. 

Pamela Rose  
Yeah, you're one of them too!

Jackie Baxter  
It changes you, doesn't it, an experience like that? I think, 

Pamela Rose  
For sure, for sure. 

Jackie Baxter  
So, what does a fatigue coach do?

Pamela Rose  
Good question. And the interesting thing is, I believe, I may have been the first fatigue coach, or certainly there weren't people really overtly promoting themselves as such. I didn't even know that that's what I was going to call myself at the beginning, it was I wanted to help people who had MECFS, you know, that was the sort of primary goal. 

But it became clear that there was, you know, a wider community, I suppose, of people who were struggling with similar challenges, people, those with fibromyalgia. A year or two into my professional journey, the pandemic hit. And of course, we then saw lots of people experiencing post viral fatigue from the COVID virus so. So when I started off, I wasn't exactly sure what a fatigue... I didn't even know that I wanted to be a team coach. But I can certainly answer it much more clearly. 

Now, my definition of being a fatigue coach is that I'm somebody who really gets into somebody's life with them, you know, people come to me for help. No two journeys are the same. No two people are the same. No two experiences are the same. So I don't offer a one size fits all approaches. That just wouldn't work. 

I'm here to catch people, wherever they are, when we first meet. And quite often at the beginning, it literally is just helping them perhaps get into a slightly more accepting place about what's going on. Finding ways to cope emotionally, not only physically, with what's going on, get them into a steady and more stable place. And then together we figure out what's going to help them get into a stable position where they can there's the whole system is is happy to start achieving improvements, and ultimately get their levels of wellness increasing. 

Interestingly, I'm not the kind of practitioner that tends to stay with people very long. My thoughts about this are that my job is to give people enough help and guidance, so that they can then go off and continue to do the things without me. Because these journeys, they can be long, yeah, fairly long for most people, and it's just not feasible, either energetically, financially, what have you for people to kind of commit to multiple, multiple, multiple sessions. 

So my job is to get people into a better place, feeling confident that they're figuring out the blend of things that are going to help them. And that can cover a variety of things; certainly there's a lot of practical things like pacing, energy management, like I say, emotional, how to deal with the what's a very difficult emotional health challenge to find yourself tackling. Mindset techniques, nervous system calming. 

But also helping them just sort of problem solve their way through every day. Because life doesn't stop happening. Just because you've got fatigue, you know, you, your boiler might still pack in, you know, all sorts of things will still happen, that you have to deal with while you're on a fatigue recovery journey. 

So I also help people get into a place where they're starting to figure out that it is possible to figure out how to get through every day, and introduce them to some sort of help with a variety of different tools and techniques in order to do that. 

I love what I do, I love being a fatigue coach, I wish they weren't needed. I wish my help wasn't needed. But unfortunately, it is, and I'm very blessed and privileged to have helped lots and lots of people now. And most of them are in a much, much, much, much better place than they were, and the other ones are on their way.

Jackie Baxter  
Yeah, I love this. Because when this first happens to you, I think you know, most people have some sort of bug, virus, whatever it is, and they just don't get better. And you don't expect that most of the time. Because up until that point, it had probably never happened before. You get sick, you get better, and then suddenly you get sick, you don't get better. 

And that is really, really scary. You know, you don't know what to do. Most people will possibly try the wrong things. Because that's what society tells us. You know, you keep going, you carry on, you keep calm, carry on, keep living your life keep doing those things, which as it turns out, is usually the worst thing you can be doing. So we're all flailing. 

And there's, as you say, you know, not a lot out there in terms of guidance. And if there is, certainly I was in denial, I didn't want to believe that that was me even once I started hearing about other people. So having some sort of guidance, just to kind of, I don't know, like, even hold your hand and just be like, Okay, this is scary, I get this, where can we start. I think could just be such an amazing thing. 

Pamela Rose  
And of course, the thing that I didn't really realize would become my biggest asset is, as time goes on, and I help more and more and more people, that breadth of knowledge that I'm gaining about the different sorts of journeys people have. I mean, like I say, no two are the same. I've helped over 1000 people yet, and no two have been the same. 

However, you start to spot patterns, and I'm learning, you know, in those early conversations I have with people, often in the very first session that we have, I'm starting to think Yep, I know that this is going to be an important part of their blend, I know that we'll need to talk about this. I'll spot if they're in you know, the opposite of acceptance is as you just said, denial, resistance. Those are not ways of being that are conducive with finding what's going to help them moving forwards, so until somebody's in that, that place where they're at least accepting to some extent that this is real, and they need to take it seriously it's very difficult to really start to get into the helpful stuff. 

But then some people have already tackled that by the time they come to me so you know again, this is why I can't do, and I don't do, a one size fits all approaches. But I really - this is why I love what you're doing with this podcast because you're spot on, there are so many helpful pointers and markers that could be communicated a little bit more clearly out there. You know, here's some things to look out for. And if you're starting to spot these, it might mean that you need to take this seriously and doing these things might help. 

I'm getting people coming to me who are you know coming into four years of having long COVID. And bless them, for some reason, they just haven't been signposted at all to anything helpful in all of that time, which just should not be the case. So I love that you're doing these things, and it's lovely to be a part of it.

Jackie Baxter  
Thank you. Yeah, no, you're right. You know, there is information there. So how can we get the right information to the right people. And, you know, you can put it out there, but it sort of, it also does require other people to do some signposting, as you say, but the more we do, the better, I guess. 

So. I mean, you know, we could spend the next three or four hours talking and still not cover anywhere near everything that would be useful for people. But I think what we were thinking about discussing this afternoon was going to be around kind of difficult conversations, because there are so many that are so difficult. And like, why can they be so difficult?

Pamela Rose  
Gosh, I mean, I think there are there are various reasons. But I think the key one to start with is the fact that people just don't understand. People who, you know, that are around us, our loved ones, our colleagues, whoever they may be, just don't understand. 

And I still, you know, in five years of doing this, and you know, 14 plus years of personally being involved in this fatigue world, I still don't truly understand why people find it so difficult to really sometimes even want to understand, let alone truly be able to. I guess unless you've been through it, of course, it's difficult, but still, there does seem to be something unique about a fatigue related challenge that is puzzling for people. 

I do wonder whether in some instances, people don't just sort of a bit blinkered, they don't really want to acknowledge that it's real, because it's scary, you know, hearing what people are going through. Yeah, it's a bit of a scary prospect that this could potentially happen to them at some point. Anyway, I think that the lack of understanding is at the heart, probably of a lot of the difficult conversations we end up having to deal with.

Jackie Baxter  
Yeah, I think you're right, you know, in order to truly understand. I mean, it's very difficult to truly understand anything that you haven't experienced on a personal level. But you don't want to understand something too much. Because then you have to acknowledge that it could happen to you. And who would want to do that?

Pamela Rose  
I don't think there can be any or many more health challenges thar are this impactful to quality of life that is so misunderstood. And I think that's the other thing - we're talking about not understanding, but I think there's the misunderstanding as well. 

You know, we've all probably heard, when we say to people, that we've got a fatigue challenge, and they come back with something along the lines of Oh, yes, I feel tired all the time too you know. So it is misunderstood as well. 

And then there are other elements, a lot of us tend to look okay, you know, we don't look as bad as we feel perhaps. So I think it can just genuinely be easy for people to forget that we're ill. But then of course, that leads to the difficult situation where we have to keep reminding them. And you don't really want to be that person who has to keep talking about and reminding people about the fact that we don't feel very well, because it's not nice to necessarily be that, to feel that you're being that person. But also it's really emphasizing it to yourself constantly too. Tricky, tricky, tricky. 

So yes, difficult conversations, is something that I certainly help people find ways to tackle quite a bit. And I think it was a great suggestion that we focus in on that today. 

Jackie Baxter  
Yeah, absolutely. And I suppose as well, like, sometimes you don't want to. You know, there's definitely been times with friends. And I think this is probably common. When you come down with something like long COVID, MECFS, your life is so drastically different to what it was before, that you don't feel like you have anything in common with people that you did things with before, because you can't do those activities. 

So some people might keep in touch, or they like try to. And like I definitely found that either they asked me how I was - and I either would not want to get into it. So I would not reply. Or if I did get into it, they didn't always want to hear how bad things actually were. So then I would kind of temper my responses, and then you lose touch with people and then you don't have any friends. And that's so isolating. 

And then maybe the only people you speak to are people who have a similar condition. And it's nice to have that connection and that validation from them. But you start to lose sight of what other people lives are. And I think sometimes that cannot be the most healthy thing, either. You know, it's, you need to have both, don't you? And that's really hard.

Pamela Rose  
Absolutely. I often suggest to people that they pick maybe, you know, two or three friends who they invest a certain amount of time and energy into kind of explaining what it's like and what they're going through or what have you. And use them as their sort of inner circle, I suppose, who really understand what's going on. Choose those people wisely. 

And then think about everybody else in your life and what you want to get from them. You know, I think that we can sometimes feel let down as well by friends and loved ones around us, if they're not, I don't know, giving us enough attention, support, you know, whatever it might be. But I think think about what you want from the people in your life. 

And maybe actually, other than this small group of trusted friends that you invest with, maybe the other ones, you do just one laughs and the occasional kind of funny meme. You know, whatsapped to you? Or something like that? Rather than expecting them to also be your support structure and a shoulder to cry on? And what have you, you know, maybe decide to get that from, as you say, the people that you you may meet on your journey, who are going through something similar. So that can be helpful. You know, we're moving into kind of some suggestions here, I realize, but, you know, thinking about what do you want to get from the people in your lives can actually then help with the conversations.

Jackie Baxter  
Yeah, that's a really great idea. Actually. Maybe before we dive too deep into suggestions, you know, what tend to be some of the hardest conversations that people have, there must be kind of themes that you notice? 

Pamela Rose  
Yeah, yeah, there are for sure. I mean, again, like I say, everybody's life is different. So it will differ from person to person. But I think we've talked about the frustrations that people often have about getting those around them to understand what they're going through. 

I think having to say no, well having to say no to people who are asking you to do things, or are just used to you always doing things. I often say, I mean, it sounds a bit tongue in cheek, but I genuinely think there's a big element of truth in this - fatigue only happens to nice people. Because we are sort of naturally the people that give ourselves too much, you know, and perhaps are just a bit too prone to, whether it was in our job, with our loved ones or children. You know, whatever it might be, that we give so much of ourselves. 

And a big part of that can then be that we're so used to being the one that people turn to, or the one that people come to for help with things. And so having to then start saying no, or sort of just maneuver yourself out of those situations, that can be a difficult conversation to have. 

Sort of linked to that. But another kind of example of saying no, which is declining social invites, which kind of touches on what you just said about, you start to have less in common with people, and that kind of your friendships become a little bit more distant over time. 

Dealing with people constantly asking how you are, that's another difficult conversational situation, how to respond to those situations, but also perhaps how to have a meaningful conversation with them to explain that you'd rather they didn't do that all the time. 

How to reply to people who keep suggesting really helpful things that they've heard about. That's something that often, you know, people - and how lovely to have people in your life that are trying to be helpful. But again, that's another conversation. 

And I think finally, the final thing that I hear, or that I help people a lot with is, is this concern about, certainly when you're a little bit further along your journey, and you're able to leave the house and do a bit more. Is this kind of unexpectedly, finding yourself in a situation where you need to have a conversation, you know, you've psyched yourself up, you're ready to go for your kind of five minute walk that day around the block or what have you. And then you bump into a neighbor from a few doors down who wants to stop and ask what's going on and what have you. 

And not only do people worry about what will they say, but they also just worry about how to deal with saying to this person, I'm sorry, I can't stop and talk because I really want to get my five minute walk done. And if I don't get back at that point, I'll feel it. You know. So I'd say those are the sorts of the key things. I don't know whether you you've got any others or if there's anything that I haven't covered.

Jackie Baxter  
I think one of the big ones for me was knowing what to ask for and then how to ask for it. I think initially I didn't know what to ask for. So I was trying to do things myself and then getting annoyed with people for not doing things. And then over time, kind of once I did start to understand some of what I needed, then being able to ask for it. 

And be able to ask for it from my partner, for example, was, was not too difficult, you know, we live together, we known each other, you know, that that one's not too bad. But from other people who haven't seen it day in day out - parents, friends, other people, that was much more difficult for me. So that was maybe one that I would add. I'm sure there's a load more as well.

Pamela Rose  
There are, of course there are. But I agree absolutely. And again, it's like I say, it happens to nice people, because you're so used to doing things yourself and not wanting to perhaps bother somebody to do something for you, and what have you, and it just feels different. You know, even if logically we know it's the right thing to do, it doesn't mean that it's easy to do. So. Yeah, I agree. I think that's a big situation for a lot of people too.

Jackie Baxter  
Yeah, definitely. And I think it's almost like, we know now about things like stress on the nervous system and the different types of exertion. So the physical exertion, which for me was much more obvious, because you either did it or you didn't. But things like cognitive and mental and emotional, all of these things, it was much harder A. to quantify and B. to actually do or not do, I couldn't switch my brain off. Like, that was part of the problem was like, couldn't switch my brain off. 

But when we kind of we sense one of these difficult conversations might be kind of approaching or that we needed to have it. And certainly, I could feel it in my body that this, you know, this conversation, it was either coming towards me like a train and it was going to happen whether I wanted it to or not. Or it was something that I had to make happen myself, for whatever reason. 

And it's so difficult when you have to pace your activity and then something like that comes on top. And it's difficult, isn't it? You know, when it's adding all that extra stress and extra Stuff, for want of a better word

Pamela Rose  
Yeah, it is. It's really is challenging. And I think that when I help people figure out their energy management approach, which is also called pacing, it's about recognizing and spotting days where maybe things like that have actually been a bit of a feature. 

Again, those around us though, wouldn't realize how impactful that kind of thing is on our energy levels. When we're blessed with a full quota of energy, we really have no idea quite how much these things take from us. But gosh, we realize when we haven't got as much as we used to have. 

Jackie Baxter  
Yeah, definitely. I mean, one of my strategies, if you could actually call it such, would be to avoid these difficult conversations because I couldn't handle them. I didn't have the energy. I didn't have the brain space. I can't do this today. So I'll put it off. 

You know, maybe in the short term, that might be a sensible thing. You know, if I'm going to have a slightly better day tomorrow, let's have the difficult conversation tomorrow, when it's not going to put me in bed for a week. But at the same time, if we put them off for too long, then that's not a good strategy either is it?

Pamela Rose  
No, no. And I have to say that wouldn't be necessarily what I would be guiding you towards doing. I mean, of course, there are some days when Absolutely. It's about recognizing that today is not a day to try and you know, even remotely try and have a difficult conversation. As we'll come on to talk about in a second, I think that preparing, managing, figuring out how to feel confident about things is what's really, really important.

Jackie Baxter  
Yeah, definitely yeah, I think I've come to realize that a lot of my so called strategies from before, as well as sort of during the first half of my illness, were not healthy. And some of the journey has been trying to develop some slightly healthier ones.

Pamela Rose  
And it is an ongoing learning process. And gosh, you know, it's I've talked about this in other things I've done, but it's difficult to spot and talk about there being positives that come out of these health challenges. It's difficult to talk about that. 

But there are some helpful things that get from them, you know, and that wisdom about learning and picking up approaches, techniques, tools to just deal with every day. You know that serves us for the rest of our lives. I mean, difficult conversations will kind of continue to happen. They're not just linked with chronic health journey, of course, but so some of the things that we learn that help us now will also then serve as well going forward as well.

Jackie Baxter  
Yeah, yeah, exactly. I say exactly the same about breathing, resilience to stress all of these things, you know, stress doesn't go away just because you're better. Actually, in some ways stress increases, because then you're more engaging in things that can give you stress. It's a different sort of stress, isn't it? I think, you know, it's a very different thing. But you know, all of my kind of stress busting strategies have been very much used during the month of January, that I will definitely say, 

Pamela Rose  
Well there we go, well, that's something that's coming from your journey, then. 

Jackie Baxter  
Well, yeah, that's true. Yeah. Yeah. Cuz the me of four years ago, would have attacked, you know, this January with like, ah, let's do more, let's push through, let's do all the things. Rather than, okay, this is a really stressful month. Let's try and manage this.

Pamela Rose  
Oh, well done. Well done for recognizing that and doing it.

Jackie Baxter  
It's a learning curve, I think, isn't it? Isn't it interesting? I think, you know, we were talking just a little before we hit record about, you know, recovery not necessarily being the end of the journey, but being the start or being the start with a new one. And yeah, it's it really is, I think, certainly, that was my experience. 

So let's dive into some sort of strategies. How would you kind of approach some of these different difficult conversations?

Pamela Rose  
Again, I mean, I'll talk through some some ideas. But if there are any others that you think would be helpful, please do throw in some questions. 

And I think, starting with the biggie, again, about this, this whole business about people not understanding. I think that in some instances, it's about accepting and finding peace with the fact that they won't, and, and almost putting that to one side. It's not ideal. But I think that some people in some situations, unless they do that, it's taking up so much energy, fretting, feeling frustrated, what have you, that that can be really, really helpful. 

I promise, this is not an opportunity to try to upsell, but I run every now and then a webinar for the loved ones of those with fatigue. And I have to confess to being a little bit selfish, in my reasons for that, because with the people that I'm helping, if their loved ones understand a bit more about what they're going through, and what they can do to help, it helps me, and it helps me help the person with the fatigue. So, you know, I do try to do what I can to kind of let people outsource that to me, to some extent. 

But on the whole, I think that there are some situations where you've done all you can and it's about accepting that perhaps the right thing to do is to find peace with the fact that they're not going to get it. And think about what that means is going to be missing from your life, your support structures. And where else can you get that from, you know, 

I think, linked to that, this whole piece about being told, "but you look fine." I think it's interesting, isn't it? Because I think that it's certainly - I'm sure your podcast has got a global audience, but certainly in Britain, that whole sort of, oh, you're looking well is a very sort of British thing to sort of chivvy people along, isn't it and make them feel better. 

And it's lovely that people want to say that and, and quite often, it's probably true, too. But we can interpret that as them perhaps doubting that we're actually as bad as we say. Because if we're on alert, if our nervous system is already scanning for sort of threats, a well intentioned sort of comment like that, we can actually interpret and define it as being quite the opposite. 

One helpful little suggestion I give to people in that situation, is if somebody says to you, well, you know, "you're looking well" is to just have something ready to reply along the lines of, "that's lovely of you to say, I wish the inside match the outside in that case." Or something like that, which just really you're accepting the compliment, but you're also getting across the fact that actually, no, you're not feeling quite as well as they are telling you, you look. 

So, you know, that leads on to probably my next point, which is prepare. Think about situations, think about what are the conversations or the, you know, the communication challenges that tend to be prone to tripping you up or that you worry about in advance. And sit down and give some thought to, well, what can I do about that? You know, in that particular situation next time somebody says, "Or you're looking well," you know, if somebody remembers my suggestion, just now, then it's ready to go, you know, and that's one thing they don't need to worry about so much anymore. 

So I think thinking about and spotting certainly the most frequently occurring challenges and giving it some careful thought is really, really helpful. 

While we're still talking about loved ones around us, and people in our environment, the sort of unpredictability of these conversations can be difficult. Yeah. Especially if you're sharing, say, a house with somebody who doesn't understand, doesn't want to understand, doesn't believe, whatever, you know. And for whatever reason, every time you do communicate with that person, it's difficult, not knowing when that's going to happen, can just compound things further, because, of course, your systems constantly aware waiting for that possibility. 

And it's actually it's not just, far from it just being with those that you share a house with. It could be anybody in your life. But I think trying to create some predictability can help with that. 

So, you know, maybe, if it's, I don't know, say a sibling, who can be a little clumsy with what they say, you know, agreeing with them that you're going to have a nice chat every evening at five o'clock, where they'll tell you about their day. And you'll tell them a couple of nice things that have happened to you that day or something. 

And you are sort of creating a bit more predictability. So you know, you're going to talk to this person at that time. And you almost set a bit of a structure and agenda around how those conversations go. And it will remove that uncertainty from your life. 

And you can use that in all sorts of different ways. But certainly, I encourage anybody listening to this to think about if they've got people in their life that they do find themselves worrying about, are going to have a need to have a random conversation with them? How can you make that a little bit more planned? 

I've got people who, maybe they've got a parent who's unwell. And with their brothers and sisters, they're sharing the kind of  care of them or what have you, or at least the discussions about what to do. And because this person is, you know, a nice person, and their brothers and sisters are used to leaning on them, they may be getting a lot of that constantly. 

And we've quite successfully, you know, with many people, we've quite successfully got to a place where they've perhaps communicated, right, I'm around early afternoons on Tuesdays and Thursdays if you want to run anything by me. Define, say to people, look, I want to help. I am here. But it's really helpful for me to have some predictability in my days. So I'm here for you these days, or every morning at, you know, 10 o'clock, or what have you. And again, give some predictability back into that, some more certainty. 

Dealing with people who are constantly asking how you are, that's another big one, isn't it? And I would, especially if it's people close to you, I think have one conversation. One sort of difficult conversation where you say, look, it's lovely, that you want to know how I am. And you're doing that, I guess, because you care. And there's not much else you can do necessarily. So you're asking me how I am. 

But actually, you know, one day to the next doesn't really change for me, and it doesn't help for me, there's only so many different ways I can say, I don't feel great. And it's reinforcing it for me. So can we just agree, I'm not feeling great, most of the time, but I'm starting to figure out some helpful things. And actually, it would be lovely not to ask me all the time, you know. 

Let's agree that I will tell you, if I have a particularly good day. I'll let you know, so we can celebrate it. And conversely, if I have a day where I need something, or I'm feeling particularly symptomatic, I'll let you know. But unless I mention it, can we just sort of agree that I'm not feeling great, but I don't particularly want to be asked. You know, it's having those sorts of conversations upfront, and just agreeing some kind of ground rules.

Jackie Baxter  
Yeah, definitely. I think. Again, this is probably, you know, I'm a recovering people pleaser, and this, you know, it's not everybody, but it does seem to be quite common among people with these sorts of illnesses. And the thing that I struggled with was, I knew that the vast majority of people that I spoke to or communicated with, they meant well. 

So, you know, parents who are constantly wanting to know how you were or, you know, friends who "Do want to do this thing," or, you know, whatever it was, you know, that they all meant well. Even the "have you tried this" people, you know, they'd thought of something or they'd heard about something that they thought might help you. So they had the best of intentions. 

But you know, having the best of intentions doesn't mean that they're doing the right thing. But I found it very, very difficult to turn around to those people and say, Can you not? Because it felt like I was throwing their good intentions back in their faces. And I struggled with that. I think that's probably quite difficult to do in itself isn't? 

Pamela Rose  
It is and that is one of those situations where I think giving some thought to how you will manage any future situations like that can be helpful. You know, if it's somebody suggesting something that they'd read about or heard about, or a friend's friend told me, you know, tried it, and it was miraculous, which I'm always a little bit skeptical about, but never mind. 

Then it's saying, oh, you know, thank you for that. I'm actually working on some things that I really feel are helping at the moment. And I don't really want to mess with that. But I really appreciate you thinking of me. And I will make a note of it. And sort of just being prepared to just say something like that. 

You're not sort of rejecting it as such. But you're also being quite nicely positive for yourself and demonstrating this kind of resourcefulness that actually, I'm good. I've got some things I'm helping with. And I've learned that messing with the formula too much and too often isn't helpful. So at the moment, I'm going to stick to what I'm doing. But thanks for thinking of me. Having that ready to go. 

And when I say, plan and manage in advance. I mean, literally rehearse it. Rehearse it to yourself, whether it's talking in the mirror, or just saying it in your head, but rehearse having that conversation. Because then it will come much more naturally, you're more likely to remember it as well, when it happens. 

But I think there's something we haven't talked about, which kind of links with that. And what you were just saying is, I think it's important that people listening to this, remember that - I think we often think that people are going to join the dots a lot more than they actually do. 

Because everything feels so real to us. Because every waking minute we have reminders of the fact that we're on a really horrible chronic health journey, we assume it's extremely obvious to everybody around us. And that the things we can't do a really obvious to them, the things that we need are really obvious to them. 

You know, I do think that that's part of this problem that many people have, you know, in communicating with others, I think that we can just assume that people are going to join the dots. And unfortunately, they probably won't. 

And that's where investing some energy in every now and then doing the dot-joining and reminding them or doing some helpful things is ultimately going to be helpful. Yeah. I think that is an important message. We shouldn't have to do the dot joining on their behalf. But I think most of us have to at various points. 

Jackie Baxter  
Yeah, you're right. And we feel like we shouldn't have to, and we don't want to. And often we don't have the energy really to do it. But I suppose if you look slightly longer term, beyond the next couple of hours, where I feel terrible. Actually, if people did get it a little bit more, then it would probably make my life a bit easier. 

And actually some of the help that they are offering and clearly want to help. Maybe they would be offering slightly more helpful help. Because if they understood more about what was going on with me, then they would kind of, you know, some of them won't. But some of them will then kind of be able to, as you say, join some of those dots together and know what will and won't help, I suppose. 

Pamela Rose  
Yeah, it is, it is. But there is still some quite neat ways you can you can have those conversations, you know. I think that this whole topic about helpful people. Another thing that I touched on earlier was, I think they can feel very frustrated or very passive, you know. These people love you, they want you to be better, and they really wish there was something they could do. 

Linked with, then they hear somebody talking about something and they pounce on it. And they think that's brilliant and I must mention this, because that's something that they've been able to do. I think you're spot on in what you just said that, If you say to people Well look, I'm particularly interested at the moment in learning things that will help my nervous system, or I'm particularly keen to learn the benefits of a certain dietary approach or whatever it might be. 

And actually give them something to go off and be helpful with - that can be really helpful. You know, that solves a few issues because it gets them used to being directed as to where they'll go off and do this. You won't get as many of these helpful suggestions that you don't need, but they're also doing some of the heavy lifting for you, because they genuinely often are some topics and things that we want to learn about. But we have to be careful about how much time and energy we use on that. So yeah, I think that's another helpful suggestion. 

I think the final thing I touched on that we haven't covered as far as how to deal with it, is this sort of bumping into people out in the street or, you know, that kind of situation. Or shall I say, when you're well enough, because one thing I haven't said is that the conversation challenges change as your journey changes. 

You know, you said earlier that as you're able to do more things, you know, that brings lovely, but it brings new challenges and new situations, and that includes conversations. So once you're back at work, or once you're able to go to, say, a family wedding, or what have you, or like I say, I going for a walk, you could bump into people, well, you will bump into people if you're at a wedding, or what have you. And give thought as to how you're going to deal with that. 

And my advice is, you can usually chunk them into three different types of people, types of situation. One is people who know exactly what's going on. One are people who know a little bit, they know that you've got a chronic health situation, but they don't know much more than that. And then other people who haven't a clue, but they've never met you before, they don't know you at all. 

And think about how you can and want to deal with those different sorts of people. Bumping into somebody who gets it is an easy one, because you can, you will probably feel a lot more comfortable just going Lovely to see you but I'm on my walk and I need to keep going. Or a wedding, you know, to be honest, I don't want to talk about it today. I want to just enjoy, you know, don't worry, I've got a plan as to how I'm pacing things carefully. Let's just enjoy, you know, and what have you. 

It's the middle category that tend to be the more challenging. The ones that know a little bit. They're the clumsy ones that feel it's okay to ask probing questions, you know, Oh, I hear you've got this Long COVID thing, you know, what's, what's it like? And are you really don't want to, and I wouldn't recommend getting into detailed conversations with people like that. 

And I think in that situation, just be ready, again, with some kind of rehearsed response, you know. Maybe something along the lines of, you know, "yeah, I won't lie, it's been one of the toughest things I've ever had to do, or I've ever had to deal with. But to be honest with you, I don't particularly want to talk about it just now. Anyway, how are you?" And turn it back to them. Because people usually like to talk about themselves. 

So sort of acknowledging that it's been tough, kinda gives them a little bit of what they're sort of hoping to hear, I guess, which is a horrible, horrible situation to be in. But quickly, then diverting it off. And just making it clear to say, I don't particularly want to talk about it just now, thank you. It's absolutely your right to do that. But rehearsing that beforehand, will make it a much, much more comfortable thing to say.

Jackie Baxter  
Yeah, and I think you know, there's a balance isn't there with those sorts of people, the people who don't get it a bit or who don't get it a lot. You don't want them to think that life isn't terrible. You know, because I think we have this kind of way sometimes - I certainly did of gaslighting ourselves. 

How are you doing? Oh, yeah, you know, alright. Because you don't want to get into it. And then you do - you gaslight yourself. And actually, you think well, actually, no, I think people need to know that it is absolutely horrendous. But also that I don't want to go there right now. So yeah, that's a much better response.

Pamela Rose  
And then, of course, we should finish that by saying the third group of people who don't know you, never met you before, haven't a clue what's going on. Have a think about whether you want to tell them or not. Again, it's absolutely your right as to whether you want to mention it. 

If there's a practical reason, you know, a new colleague at work or something like that, then you know, of course, having a bit of a think about how you'll deal with that is probably helpful. But if it's somebody who you're not likely to see, again, you know, you're a wedding or a party or something like that. It can be quite nice to not talk about it, and have a few moments, at least, just being you. 

Because I feel very strongly about this. We are still us. We don't lose our identity. We may not be able to do the things that used to fulfill that identity, sort of thing, but we we're still us, you know. And sometimes it's really lovely just to get a little glimmer of that back again. 

The only sort of watch point there is, if not telling somebody could lead to you being put into a situation where you're put on the spot. Think about how you're going to deal with that. You know, if you're at a wedding, and you're sitting next to, you know, Uncle Albert, and you haven't told him that you're got a health challenge on your hands. And then later that evening, he's trying to whisk you onto the dance floor. 

You know, you want to be ready to just say something like, oh, you know, my feet are killing me. I've got new shoes on or something, I'd rather sit this one out, but thank you anyway, you know. So do realize that sometimes if you don't tell people, they may assume that you can do things that you can't, and be ready to deal with that. But on the whole, I think it can be lovely to choose not to talk about it.

Jackie Baxter  
Yeah, no, I completely agree. You know, sometimes not having that conversation and speaking to somebody, and they just going to speak to you like a normal person. And that can feel incredibly refreshing sometimes, I think. Even if it's just for a moment or two. 

I think as well, you know, again, as a recovering perfectionist, this idea that we have to get it right all the time. And you know, I've had plenty of these difficult conversations and handled them appallingly. And, you know, each time we do that, then I suppose it's a learning experience, isn't it? 

Okay, I didn't do that well, it made me feel really terrible, it made the other person feel really terrible and put me in bed for a week or you know, whatever it is.  And then I suppose it's learning from that, isn't it? And going, Okay, right, How could I do that slightly better next time?

Pamela Rose  
Spot on. I mean, to be honest, that applies to every element of your health journey. You know, don't beat yourself up over things. And it can be really easy to do that with conversations, to find ourselves ruminating about them afterwards. Worrying about what we did or didn't say, could we have done it better? There's something particularly about, you know, interactions with people that can make us prone to that. 

I call those botherings. Anybody who's worked with me will know that I kind of give, you know, my own sort of terms and names to things and what have you. And I call that botherings. They're things that play in your head. And, you know, they're using up energy. 

And if it's worrying about what somebody might or might not have thought as a result of your conversation, either ask them or decide to put it out of your mind. Because you know, otherwise, it's just going to kick about in there, hungrily eating energy that you don't really want to waste on that. 

So learn from it. And then next time, hopefully, there's a similar situation, it will just go that bit better. But like I said, you know, that's just part of a rescue journey, really, I think, is celebrating the things that go well, and learning from the things that could have gone better. 

Jackie Baxter  
Yeah, absolutely. Yeah. It's the sort of chronic illness version of having that comeback in your mind two days after you had the argument. 

Pamela Rose  
Yes. 

Jackie Baxter  
And it's been mulling on you all that time. And, you know, what's the point of having a really good comeback in your brain when the conversation has probably left the other person's mind two days previously?

Pamela Rose  
We should coin a term for that. It's like, post conversational concern or something? I don't know. 

Jackie Baxter  
Yeah, it is. I love that, that's brilliant 

Pamela Rose  
There you go, we've invented it here. Post conversational concerns, kicks in about 24 to 48 hours later. *laughs* But you know, in all seriousness, it happens. Again, not just for the health challenge, you know, this is stuff that happens throughout life. It really does.

Jackie Baxter  
Yeah, definitely. I mean, yeah, it's not just about being ill. It's about what happens afterwards, and taking forward some of these strategies into your life, once you're able to live it in the way you want to. And there's definitely a few things that you've said today that I'm thinking, yeah, I could use some of them

Pamela Rose  
Sure, and I think we're always fine tuning and learning, aren't we? And I think that that's important. And I think, you know, you talked earlier, and like you say we had a chat before we started recording about, you know, you're recovered, and then it's sort of Oh, now what? 

And it's part of sifting through and thinking, What have I learned and what do I value now and what's important? I even think, I don't actually tend to use the word recovery that much. You know, I have a couple of times today, but I've also talked, I talk about achieving your fatigue rescue. 

Because I talk to people at the beginning of their journeys, who are, you know, they have this view of what recovery is, and they just want their life back. But as they go along the journey, they realize that actually, they don't want that life back. They want a better version of that back, or what have you, you know. 

And actually, how do you you know? What does recovery even mean? You know, the markers for recovery. That's an interesting conversation in itself, you know. So I think, I talk about achieving your fatigue rescue, or just getting back to where you want to be, you know. But like I said, that's a big topic in itself and perhaps for another podcast. 

Jackie Baxter  
Maybe we do that one next time?! But you're right. You know, I see myself as Jaxter 2.0. You know, I've had an upgrade and it wasn't fun. But actually, the life I'm living now is better than what it was before, you know, and I yeah, I'm exceedingly grateful for that. I think 

Pamela Rose  
I would absolutely say the same, 100% - doesn't mean that it was great, doesn't mean I'm pleased it happened. And I missed things that I'll never be able to do or get back or what have you. But gosh, I love my life now. And that's going to be a good thing, isn't it? 

Jackie Baxter  
Yeah, absolutely. Yeah. Well, thank you so much for joining me today. This has been such a fun conversation and really useful as well. So I will drop all of your links in the show notes. So if anybody is interested in checking you out in any way, whether working with you or anything else, do check them out. And yeah, it sounds like we've got another podcast on the cards.

Pamela Rose  
I look forward to it.

Jackie Baxter  
 Yeah, thank you so much.

Pamela Rose  
Thank you for talking to me. It's been lovely to chat this through

Transcribed by https://otter.ai