#10 Staying connected (Part 2): Dealing with isolation and limitations in complex illness with Suzy Bolt

[MUSIC PLAYING] Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Elness. I am your host, Emily Kate Stevens, and I've been living with an energy limiting condition since 2020. Here, I will speak to the world's leading experts to bring you the latest science, research, and insights into invisible illnesses, including MCFS, EDS, fibromyalgia, parts, long COVID, and more. Welcome back to the second part of my conversation with Susie Bolt. If you didn't hear the first part, go back and listen to episode 9. This conversation is split across two episodes in a bid to be more accessible to those with energy limiting conditions. In this episode, we continue to discuss Susie's online programs talking about the need for kindness, particularly to oneself, creativity, distraction from symptoms. And we discuss the nutritional challenges in complex chronic illness and how important it is to celebrate the small wins as we try to nurture mind, body, and soul. [MUSIC PLAYING] There are a couple of other things that on the program that I do want to go back on and touch on. But one of the things that you talk about with these complex illnesses is seeing what you are being given as offers rather than blocks. And so just like you've spoken about the drivers, that they potentially those personality traits could be detrimental in these situations. But I think one of those offers that comes from these complex illnesses is the self awareness that one is being shown in the exploration of it, in the exploration of yourself. Yeah. And I have to say that I never had the space to be reflective about the wise and the house and those sort of personality things that had obviously been in me since as long as I could remember. It's only with this sort of complete tangent that you're throwing in life, that you're able to sit and look at some of these things. And not view them negatively, as you've just said, but just take an understanding and an awareness of why you are the way you are. Exactly. Exactly. It's like, let me just take stock for a minute. Is everything that I do and the way that I do it actually kind to me? How much do I actually treat myself with loving kindness? Let's just ask the bigger question, how much do I love myself? And you know, for a lot of people, when we get into that conversation, then you've got some of the biggest stuff that comes up and out and they're kind of going, oh my god, I just realized my relationship with myself is non-existent. My relationship with everyone else feels more important, trying my best at work, trying to be the best partner, trying to be the best parent. Never letting anyone down. Never letting anyone down, trying to be perfect, trying to do everything for everyone. And actually, have I given myself time to look after the body that carries my soul? No, I treat this body like an abusive parent. And I'm punishing it when I ask it to do too much. And actually, one of the things that I get really sort of upset as well is when I see people, and this is just in my yoga classes before illness came onto the scene, people come to even something that's supposed to be kind like a yoga class and they're pushing themselves really, really hard and then there's something bits of their body that aren't working the way they want them to and they can't do that. You know, my stupid hip when it's like the language, the behavior, the thinking, all of that, I just want to take people and go, okay, just come with me for a minute, let's just sit. Let's just take a breath. And I'm going to remind you why you're here. You're here to foster a relationship of loving kindness with your body. Would you say that the behavior that you were just showing your own body there was loving and kind? Would you do that to anyone else? Right, exactly. I think it's a moment of if someone is willing to acknowledge that and not everyone is and that's fine as well. But if you can begin to understand that you need to treat yourself with kindness, you need to think kinds thoughts about yourself because your thoughts are creating a biological reaction as well, you need to treat yourself in all of the things you expect your body to be able to do with kindness. I mean, you know, I can't say it enough. We're not kind, we're not taught as a society to be kind to ourselves, we're taught to be productive and to be relentlessly productive. And hey, if you're sick, take some medication, just get straight back into work because we don't want to miss a day, do we? Convalescence has been eradicated. And I think we suffer hugely now as a society with the fact that we're not allowed to be ill. We're not allowed to look after ourselves. We're not allowed to say, do you know what? I don't feel well enough to be super productive today. I need to just go into my kind of little dark space and let my body heal from an emotion, from a difficulty, a challenge, an illness, whatever it is. Yeah, that space. In terms of the, I do want to talk about the Furn program as well because I think the structure of that is very interesting, but I just wanted to touch on two more things from the West Repetor of Cover Program. How many people have you now had go through? Come through the program, I would say, probably up to about 5,000 people. Wow. Maybe more. It's difficult to know because we changed over the platform a couple of years ago that hosted and we kind of obviously didn't write the numbers down because that's not what I do. But now I just want to say about the program because we've kind of only talked about the physical pieces. Actually, we have art classes. That's what I want to get to. How great. Right. Yeah. So one of the amazing things that I have not really spoken to anyone about and interviewed over 100 experts so far, creativity. Yeah. You have this strand in your program for bringing creativity back into people's lives. Yeah. And I think through maybe the first two or three years, I am an incredibly creative person in terms of all aspects. If you're cooking or painting or all of these things, I lost it completely. Yes. I lost my creativity. And with that, I think I lost part of my soul. Yes. Tell me about the elements of creativity that you've introduced, the writing, the art and what that brings to people with these sort of conditions. So one of the things that I really began to tap into, obviously, I have a lot of connection with the state of our community and the kind of mental health. And I started to see people writing poems that help them process the difficulty that they faced. And I went, we need to do that more. We need to get someone in. We need to do poetry workshops. People need to learn how to do this because creativity, you know, I've been very lucky. I've been comfortable with my own creativity since childhood. I was dancing, singing, acting, drawing all of those things, but not everyone. And I think it's important to also say that that isn't just creativity. Creativity can be having a little business idea, having a reinvention moment, changing the way your furniture is in your room. It doesn't have to be an art-based creative output. But creativity is an incredible source of the release of blockage in the nervous system. If you're holding a big emotion, a creative outlet will channel that out of your nervous system in a way that just talking about it won't. And so I suddenly, it was like a sudden light bulb moment. Of course we need creativity. We need to have as much of it as we can. Opportunities to stimulate that in people, to get people, to channel some of the darker bits of this journey. So we started with poetry. And that was hugely successful. We had a complete beginner's intro to poetry coming and right about what comes up for you. And that was beautiful. And then we started to get doodling. You don't have to be an artist, but look, we're going to teach you how to draw some squiggles on a piece of paper and then color in the bits. And it's going to be a very relaxing, cathartic process. Great. So we got a bunch of sessions in on that. Then we got art therapy in. And then we've got now gardening. So one of our community runs a little kind of weekly gardening thing where she's sowing seeds on her balcony. She hasn't left the house, but she's got a balcony. And she can sew seeds and people can bring bit to her. And so she's kind of sharing that. Someone's just set up a film club. We've got a book club in the kind of making with, we've had singing and just anything that gets people together to feel like their life is fuller. then the empty life that they may have when they're sat, disconnected and isolated. It's like, I want this to feel like you're in some kind of school, where you can log in every single day, Monday to Friday and go, "What can I do today with a group of people who are just like me?" And we can all kind of talk about it and have a bit of fun. Yeah, you're not talking about being experts, you're not talking about having to go and. Not at all. Do some kind of qualification or course, which actually is what so many outside courses offer. Yes. You need to be good at it or you need to have some foundation in it already. So the opportunity for people to do that without a basis already is hugely freeing, I think. Yeah, and we could say, like with every single class, if you just want to log in for the company treat us like radio, and you can just watch, just lie in your bed and watch this happening, because there'll be something funny that someone says or there'll be an interesting comment that makes your brain go, "Ooh, that's nice." And then for that time, whether that's half an hour, 45 minutes, you're not thinking about your illness, you're not thinking about your symptoms, which is incredibly good for your health, to allow yourself to still enrich your kind of mind body and soul, so to speak, because you're still engaging, you're still existing as a human being in the world of joy and creativity and stimulation, but it's absolutely gentle. You can do it from the comfort and safety of your own bedroom. That's what I talk about when I talk to people. I get asked to talk to the NHS quite often about different things, and I say, the most important thing that you need to do is understand that the starting point for nearly all of your patients will be their bedroom. That's their safe place, and asking them to do anything outside of that for many will make them on well. So how can you craft your offer to meet them there? Because if we can get people before they've done five years of just lying on their own in the dark, there's much more opportunity for there to be changed. A body that hasn't had any stimulation for five years because it's just felt completely isolated. It's a difficult, more difficult journey to go on. It's hardest, not impossible. I just think it's harder for people. And I think what you're offering there is for people to take back a small piece of life. Yes. Even if it is lying in their bed. Yeah. Just a little piece, find a little piece of joy, community. I still got a lot to discuss. The final part of that programme that I just wanted to touch on is that you do have an element of nutrition. How important do you consider that to be in terms of people's recovery? Or I don't necessarily always want to use the term recovery in terms of people's progression? The progression just working on health. And I think it is our duty, we have a duty of care to our bodies. If we want them to get better, we want them to improve, we want to engage with life a bit more. We absolutely should be thinking about, well, how can I optimise conditions? And I think I would be surprised if anyone these days doesn't know about the importance of gut health and understanding that our immune system relies on and existing the gut on that biome and the kind of the gut brain access. Yeah, particularly when you're dealing with vagal things. Exactly. Our vagus nerve sits there and travels up around the organs and up into the brain. It is an essential piece of it. And we do talk about it. We talk about it more in depth in the firm programmes. So people do two sessions with our nutritionist now. And actually one of the things we talk about is stop giving yourself a hard time. If you are struggling with the energy to get food and we try to help people or to get the right food in you, we try to help people find really, really simple, easy recipes to get, just to get at least one balanced meal in a day that's going to be good for gut health. Because that's a really interesting point. And one of the things that I really struggled with in the first couple of years and my nutrition definitely suffered and I think you're then looking at a downward spiral. But as I mentioned, my complete block on terms of creativity, I go to the supermarket and not be able to work out what ingredients, this is a brain fog thing. What ingredients I needed to buy even to make a simple meal for my children, let alone to try and create something that was nutritionally complete and possibly tasted good. Right, right. Exactly. So what you're dealing with is people for whom it is complex, for whom it is not just straightforward, just go out and buy fresh vegetables. And then chop them, are you kidding? I'm exhausted by the time I've got them. I'm just going to look at them in the fridge, go moldy. Go moldy. Right. Exactly. Exactly. So we definitely try to support people there and the fun community are incredibly good at offering up ideas and tips for each other, which I love seeing happen. Because I think food is a really difficult thing. We get a lot of people come through our community who are living on their own as well. And if you're living on your own and managing this kind of incredibly debilitating condition, the whole idea of getting a really healthy nutritionally balanced diet is just almost impossible and left someone helping you do it. And some people are lucky enough to have those that will come in and help. And some people are really making this up as they go. And they're going to be buying because they need to supermarket ready meals. And just hoping that there's going to be something good there. And it's a bit like, do you know what? It's better to eat than not eat. 100%. And if you can just get some kefir in you on top of that, great. That doesn't require cooking. You don't have to make your own kefir. So the next step up from that is, well, if you were going to cook a meal that would be simple, simple, simple to cook, but you could, it could last for a day or two, when you could have it three times today and three times tomorrow, if needs be, what would that be? And so we try to help people really start from the basics and understand actually one of the big questions people come in with, do I have histamine intolerance? And Holly who works with us is really great with helping people pick through the evidence of what is MCAS and how does it show up in the gut and how does it show up on your diet and your poo and all of that. And do you really need to put yourself on these extreme diets because they're so miserable and so limiting only a few people should really be going on them. I didn't low histamine diet. After I'd done that, I'd lost around 12 kilos. So I basically became nutritionally deficient because of this. Right. So that's not to say that people shouldn't do it, but again, it's that kind of extreme that can potentially be more detrimental than the positive benefits. And I can always remember talking about this with Boon Lim and he said, you know what, if someone has that level of sensitivity to histamine, you're going to know within a week to 10 days of going on an extreme histamine cut out diet like that, if it's going to make a difference. And if you're not feeling a great difference, then you really need to stop doing it because the downside of cutting out all of that stuff that you're eating, that variety of foods, whatever it is in a way, is actually detrimental. Nutritionally, but it also, it really reads your life of joy. Yes. Because all you've got is the joy of eating some delicious snack. And that's your joy of the day. Don't take that away on the off chance that it might be going to help you get better because the misery will make you worse. It's all this gentle balance. Right. This balancing act that you need to listen to your own body. Yeah. And that is a challenge in a medical system where you're told, no, take this, do this, don't do this. Yeah. But you haven't listened to me or my bodies. So how can you tell me, I think one of the most joyful things of what you've been describing is this sense of people listening to each other and people having their voices, having the opportunity to voice their experience, their concerns and their wins. I mean, that's the art thing. It's not boasting. I got out of bed. I'm not boasting, but to have other people sharing in that joy and that water, what a marker that is for people is incredible. Oh, it's great. There's two classes a week that I co-teach with with Ross who is your co-founder was he? Yeah. He was there at the beginning. He was my personal trainer. He also got Long-Govid and I just went and come in and do this with me. This, I think there's a calling for it. I know we've got a class after this where we often get into our restripeer classes, maybe 120, 130 people live. And I know that there'll be a whole lot of things today that we will stop because people just use the chat box as we go through the class. If they're not participating necessarily, they're just kind of chatting with us or with the community. And there'll be a whole lot of moments where we go, "Woohoo, yeah, she did this." Oh wow, show us your gluten-free bread rolls. Put a photo. Oh, yeah. Good. The other recipe. When the background we're doing a bit of relaxation, a bit of Vegas toning work and you know, there's just this kind of chat going on. And there's always about five or six moments where as a community, we've gone, "Oh, well done. This is a great decision. Well done." Oh, this is amazing. And I can't wait. I love it. We have so much fun together. And people always say every class, there's always someone that says, "Oh, I was feeling terrible this morning and I've joined today and now I'm just laughing and I've got tears coming down my face. It's like, "Good. That's the medicine that you needed today." Yeah, there's that word again fun bringing the fun back into people's lives. - Totally. - Could you tell me about what you developed a little after the Rest Repair Recovery Program, which has now become the Furn program, which is structured around mind, body and soul? Could you explain those three elements, which we have touched on already, but in terms of the structured program, because I think particularly that initial one of mind is something that we should delve into in terms of what you are trying to help people with. - Well, I think this is where I get to really bring people into conversation about the thought processes that go on and the dark places that we can end up with chronic illness mentally. It led by group coaching sessions with me, so we have about 16 people in per group, and the group become, I cut them off from all other social media, and I say, right, you are now going to be a self-supporting group. I don't want you to seek support from anywhere else, 'cause I want us to be really focused, so blinkers on, and we're gonna work with me, and then we're gonna be using all of the different skills and tools and trainings that I've had over the years, but primarily around the NLP, and we look at drivers, and we look at language, and we look at future story, like what do I think? When do I begin to be anxious and worry about things? And what could I do slightly differently around that? And we get to kind of gently, gently shift people. I say it's about changing the focus of the brain from keeping you safe all the time and being afraid to remembering that there's just loads of brilliant things that are great in life, even if you're just sitting in your bed and looking out the window and going, "Oh, I've just seen this beautiful bird." Okay, let's remember that that stuff is still there, and I help them shift the focus, which create an upward spiral of life is good again. I might not necessarily have changed dramatically in my physical ability, but I'm laughing more, and I suddenly feel like I've got 15 new friends, and I'm having fun, and we're sharing music with each other, and we're generally noticing that life is good. There's more good again than I had previously been aware of, and it has been profoundly changing for some people. And then obviously we've got the body bit that Ross leads, which is around, just getting people to remember that there is a level of movement which is safe, and it might just be doing that with your hand. I'm doing a small kind of revolving of my hand movement. That might be it, but to not be afraid of doing movement with the body. And one of the important things that you do there is you establish their baseline. Yeah, 100%. And I think that is one thing that the majority of people maybe can't access in terms of the NHS in terms of gyms. Is that she trying to understand what your starting point is? Yes, and we take everyone down to the same starting point. Actually, we go, look, even if you have more capability than this person, we're all going to come right the way down to the beginning, and we're going to work just on remembering that our bodies can feel nice when we do tiny bits of movement. And even if that's just beginning to do gentle self-massage or just kind of flushing the lymph a little bit around the body, we do need a bit of movement. Our bodies are always in a state of flow and to help that a little bit, tiny bit, it's nice. It feels good. I think there's something to be said very much for as well for that self-massage if people are isolated and not necessarily coming into contact with other people. You're not just meeting someone for a hug. Just that very, very basic touch is hugely important for your nervous system. And when the nervous system feels taken care of, so our mental health improves when our mental health improves, so our immune response becomes a little bit more effective. And all of those things, they all tied in together. We're incredibly complex and phenomenal. I think we're extraordinary as creatures. And I love, I love, love, love how it all ties up. And you can change how your body feels to live in by changing the things that you think and say and do to yourself. And so we really encourage that really soft, subtle work of self-love. I think it all comes down to love. It just comes down to going, do you know what? You are currently living in a body that you're afraid of because it has taken you somewhere so scary. And a lot of the time you hate. Right. Yeah. And your body's changed. You might have put on weight. You might have lost weight. You might have, you know, and you're just going, I don't recognise this body on machine. If this body knows, I don't want to take this body out. And that's so, so limiting and damaging for us to stay in that place for long. And that's one of the key components in the final section of the programme, which is the soul which is developing the acceptance of the current, your current situation, your current mind and body. Yeah. Exactly. And really learning how to just change that, that the state of you by changing your breath. How am I breathing? If I could do one tiny, accessible thing today, I could just do 60 seconds of changing how I breathe so that I feel more relaxed. And when I'm more relaxed, oh, I just feel like a nice person and I feel less cross with everything and I feel less upset and afraid. And I think those are practices that we really try to encourage people to do regularly. Not just something to grasp, but like you're clutching at straws when you're in the worst chaotic moment ever. I think sometimes you need to lean into your worst chaotic moments and just be with them for a bit and then allow yourself to go, if I was going to try and help myself here, what would I do? And if you've done our programme or even the fun, you've got a toolkit. So you'll be like, oh, I know. So you always does this thing where you put your finger in a ear and pulls down and breath slowly. I'll just do that. Maybe that's going to help. Or that didn't help. Okay, so maybe I'm going to try the shaking of the hands or I'm going to try some tapping. We have a tapping and EFT class on our programme. There's always something for someone that they go, ooh, gosh, that was powerful for me. And we will have our own thing. And that's the thing. It's so individual, isn't it? Yeah, find your thing. Wow. I am so excited about your approach and your programmes. If I could just challenge you, there will be people that say, NLP is pseudo-science. Of course. There's no scientific basis for this. You don't have a scientific study to prove what you've been doing has been effective for people. What do you say to that? What do you have in terms of metrics and results that you have observed that might be able to refute that kind of point? I've had lots of different universities actually get in touch with me and say, can we run research through your programme? Can we do this? Can we do that? And my brain, my ADHD goes, ooh, that sounds complicated. And like I'd need to invest a lot of time and energy, thanks. And maybe we can figure something out at some point. I've had consultants come through my programme as patients themselves who want to run their own studies. And I go, yeah, we'll do it. We'll do it. It's simply the hit. It's not that there isn't a request for people to study the work. It's that I need to be involved in it somehow. And right now I'm so proud to be delivering the programmes. I don't want to get sidetracked by it. And every now and again, we do put out a survey. So the last one, I think, 413 people filled in. And we asked them questions like, we asked them really useful questions like, does being part of our programme mean that you go to the GP or seek doctor's appointments less? And I would say something like 80% of people said, yes. We get a massive amount of reassurance and normalisation of this from your programme. Great. Does our programme give you hope and make you feel more joy in life? About 90% of people gave a seven out of 10, up to 9, 10 out of 10 score response to that, yes. That's a hundred percent happiness. So we do have that data. I don't do enough with it because that's just not who I am. Well, I think maybe you just allow the work to speak for itself. The work to speak for itself. Yeah. Reliance on. Throughout the talking about what we do with their clinicians, their doctors, their caregivers. And that's how people find us. I don't talk about it in the way that I probably should as a business woman, but it's because I'm essentially not a business woman at heart. I run a programme that's about love. And that's where I want to stay that keeps me happy. And if I started to go into the world of metrics, my head would explode. And would you say that you have seen people coming through your programme and leaving feeling incrementally better than they were when they started? A hundred percent. We get emails every day saying, "Your programme changed my life. Your programme helped me get better." I've even had fantastic moments here in Brighton. I took my daughter to get her nose pierced a while ago and the guy that did the piercing on the shop, he said at some point when we were looking and all of that, he went, "Are you seriously bald?" I said, "Yeah." And he said, "I did your programme on demand." So he said, "I never came live, but I lost the use of my arms." As a result of COVID, he said, "I had loads of neurological damage and I didn't think I'd ever work again. I'm a peer-seer. This is what I do." And he said, "I was recommended your programme by the NHS Long COVID clinic." And he said, "And you brought me back to life and you had a little cry, and I did too. I'm just telling the story now. It makes me emotional." And he said, "You're going to have anything you want in the shop for free. Oh, my daughter was going, oh my god, come on." Let's get more piercing. I was just like, "Okay, well steady." But you know, moments like that, I go, "Wow, I've never even met you. You don't even come in live." And you're saying that the work that you did with me brought you back to your career. And things like that, keep me doing what I do. I don't need to go out and get a scientific study that says, "I meet people. I actually meet my students." And it changes their lives and it changes mine because I'm reminded, wow, this touch is way more people than I'll ever really be aware of. That's so amazing. I have really, really appreciated this conversation and hearing in more detail. Obviously I have watched numerous of your YouTube's, your conversations and I just really, really appreciate the energy and enthusiasm that you bring to people and the encouragement that your energy gives them to feel better. Thank you. Well, I think you know what? It's this really, really beautiful Infinity Loop because when I give it out, it comes back to me and so I feel good and they feel good and I feel good and it's just, I need it as much as the community because I have my own health stuff that always needs that joy, that laughter, that support. And I'm so grateful now that this is where I've landed in my career. It's just the most incredible and beautiful thing I could ever have imagines to end up doing with all of the things that I do. I'm utterly grateful for my infection that took me on this journey. Thank you so much. You're so welcome. I found this a powerful and emotional conversation. I don't think that you can ever underestimate the power of the lived experience and the connection that comes from feeling that the people with whom you're talking or working actually understand what you're living through in these conditions. It seems that the programs and communities that Susan and her team are creating are able to shift people towards feeling better in their bodies in themselves. For me, the biggest overall takeaway from this conversation is trying to find those little glimmers, the elements that make life worth living, that make you feel like yourself again, that are so easily lost when you are in pain, suffering, isolated and stagnant, that idea of finding community, understanding, finding joy, creativity, kindness, small, small elements, small increments, which can encourage healing. I was loved to hear what do you think of this conversation? If you've experienced benefits from this type of approach or indeed, if you find this conversation offensive, we're really keen to gauge our audience's reaction to enable us to balance the content that we bring to best help you. So please, feedback, wishing you all a gentle week. Thank you for listening to Make Visible. Please do like, follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com. (gentle music)