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#9 Staying connected (Part 1): Dealing with isolation and limitations in complex illness with Suzy Bolt

46m 15s

#9 Staying connected (Part 1): Dealing with isolation and limitations in complex illness with Suzy Bolt

In this episode of Make Visible, host Emily Kate Stevens interviews Susie Bolt, who developed Long COVID in 2020 and used her expertise in NLP, counseling, and yoga to build online communities and rehabilitation programs for those with post-viral illness and chronic fatigue. Susie explains that NLP helps people recognize and shift limiting thought patterns and beliefs about their illness, creating a paradigm shift that can lead to chemical changes in the body. She highlights the frequent overlap between neurodivergence (such as ADHD), joint hypermobility, and chronic conditions like Long COVID, often linked to nervous system disruption and stress starting in utero. Susie shares her own story of pushing through illness since childhood, including glandular fever, and how her undiagnosed ADHD contributed to a boom-and-bust cycle. When she got COVID, she initially ignored symptoms, leading to a severe crash with multiple symptoms. Her recovery began by creating a Facebook group focused on connection, normalization, and fun, rather than dwelling on illness. She stresses that isolation is devastating, but community can be accessed from bed, and small incremental changes in movement, socialization, and mindset can help people feel better without exacerbating symptoms. The conversation continues in episode 10.

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[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, POTS, Long COVID, and more. Welcome back. We have brought you some very in-depth science episodes, and this week we are balancing that with a more holistic conversation, focusing on some of the small changes that people could potentially make to improve health in complex conditions, and maybe begin to feel better. I have the pleasure of bringing you my conversation with Susie Bolt. Now, I'm conscious that many of our audience might have limited energy, so I've split this one continuous conversation across two parts, so it continues in episode 10. When Susie developed Long COVID in 2020, she had an inkling that it was rated to her autonomic nervous system, searching for answers, and finding many others suffering and isolation. She drew on her experience as an NLP practitioner, counselor, and yoga teacher, to bring people together and create an online community, which developed into rehabilitation programs for those suffering from post-viral illness and chronic fatigue. Her two programs have enabled over 5,000 people to make incremental gains in their health. One of the wonderful things about Susie's programs is that she understands the extent of debilitation in people suffering from these endilementing conditions and chooses to meet them where they are providing help from the comfort of their bedroom, creating an online community with the focus on supporting each other in a way that's encouraging and uplifting. In the first half of this conversation, we discussed the methods Susie uses to help people with their illness, the impact of isolation in these conditions, and the need for connection and community. We discuss exercise and hear Susie's journey and how our histories and genetic makeup contribute to these conditions. As ever, we are really keen to hear your thoughts on the ideas put forward in this conversation. [MUSIC PLAYING] Let's take it back to where you started. I won't go right back to Inutre. But-- [LAUGHTER] Where you started coming out of working in the performance art and taking a direction to train, was the first thing that you did train in neuro-linguistic programming? Was that your first route into therapy? So I trained as a yoga teacher first, and then went into the world of NLP. Yeah. Basically, because I, at the age of 25, I think my own nervous system regulation stuff was so apparently out of whack in comparison to my friends. I kind of went, how are you all just getting on with life and managing? And I'm over here slightly going a bit crazy, and was referred to a friend who was an NLP master practitioner, and it changed my life. 100% changed my life. And I went, I'm going to learn how to do that. So I then began a kind of slow-- I learned about about eight years, the different levels, and I went through very immersive practical hands-on learning experiences, and loved it. Loved, loved, loved it, and used it a lot in the work that I did alongside my yoga teaching. But with my yoga teaching as well, actually, in the language that you use around people every day, you know? So for those in our audience who don't know, or have not had the experience of NLP, can you give us a little framework of the way in which it is used? Because I believe it's focused around language in language and communication. But what I find particularly interesting in your work, and I don't know if it's across the whole NLP space, is it's not just external language and communication. It's also very much a self-reflective practice. So NLP, for those listening that you may have heard about it, but you're not quite sure what it is. NLP is neuro-linguistic programming. So it looks at the patterns that we have, and we formed over our life. The patterns of thought, the language that we will use to share those thoughts and process our experiences of the world, and hence the programming piece. So all of the thoughts that we have and the things that we say, they're all a result of a kind of programming that we learn. And actually, one of the things that I really love working with people on when they come into my space with me is just allowing people to understand that's a program that you can have some choice around. It's not just fixed. We're not fixed as people. There is some flex. And often, when I'm working with people now, people come in and they're very much stuck in a pattern of, this is how I'm thinking about my experience with my illness. This is the language I'm using to talk about my illness. This is the kind of thing that I'm identifying with. I may have a very, very fixed pattern around the beliefs I have around whether or not it will change or get better. And so what I do is listen to their language and listen to their responses to things and gently begin to tease the edges of it so that at some point, maybe after about three or four weeks, and this is particularly in the Furn program, not in the bigger program that we run because it's coaching based on we get to talk. There's a point where people go, "Wow, I've just totally had a paradigm shift on how I think or feel about this and it feels completely different in my body." And that moment, I go, "Ah, great. Now we've got a kind of chemical change going on inside you because your belief system has suddenly been nudged, perhaps, into a slightly more positive place, which I think is an incredibly powerful thing to help people find for themselves. We have all the resources within us, but sometimes we just have packed some of them away because they don't fit the place that we're in right now. Like, it's not okay for me to think or feel that because of where I am right now. And actually, we'd just, we'd like to explore what would it be like if we could find access to that feeling again?" And I think that in itself is interesting the way that you explain it because it's not about suppression of how you're feeling or telling yourself in a negative way. Yeah, no. There's no wrong thoughts. All of the thoughts that we have are based on the brain's response as a brilliant mechanism of keeping us safe. And we're always making the best choice that we feel that we have in any given moment. So everything is good. And sometimes we can get into a place with our thinking where we begin to limit change as being a possibility. And I think that, especially when we're living with chronic illness, if we limit our possibilities, that means nothing is possible. And I think that to really, at a really stuck and dangerous place for people to end up because, especially for their mental health, if we don't think anything is possible and it's never going to be possible. And that's it. It's a full stop. There's a brick wall that's built. And then someone's life becomes really, really small. And when it becomes really small, we're disconnected, we're isolated, and all of the other stuff that goes on in the chemical makeup of our body begins to go on that downward spiral towards really deep, dark, abyss, ill health, mind-body stuff. You have this experience as an LLP practitioner, a yoga teacher. You're also a trained counsellor. And in early 2020, you yourself got long-havened. And for those people that maybe haven't followed you over the last five years, would you share briefly the story of that? Yeah. So I'll just backtrack briefly to help people understand what I've learnt about why that happened to me. So I was doing a performing arts degree in London, moved there when I was 18, and I got into doing yoga then. Yeah. And actually, one of the things that I noticed very quickly was, oh, my goodness, this is the first thing in my life that's actually made me feel calm and focused. I've since had at the age of 49 a couple of years ago, an ADHD diagnosis. And it was like, oh, so that's why it was so profound for me. I'm profound enough to make me go on to learn how to be a teacher, quite quickly afterwards. There are so many things for us to cover. I think that ADHD diagnosis is also a very, very interesting point that we are going to talk about so many contentious things, aren't we? Hi. I don't know if they're contentious. I think we're all on board with it now. Anyone that needs to be. Do you think? Yeah, I do. If we were to kind of dig into that neuro-spiciness, one of the things things that I've really, really seen in the five years that I've been tinkering around in this world is the amount of people that have some degree of either ADHD, whether it's diagnosed or undiagnosed or autistic spectrum disorder, again, diagnosed or undiagnosed, but hugely relating to. And I think we then start to track into the, okay, well, do you have any slight joint hypermobility and it doesn't have to be everywhere? Could just be in a few joints. Okay, well, that's a part of the puzzle too. And have you had more than your fair share of illness in your life? Okay, well, you start to put a pattern together. I ran a workshop on this with a bunch of doctors who specialized in this whole kind of spectrum disorder and the propensity for pots and autoimmune conditions and pro-inflammatory responses to viruses. It all sits within that, or under that umbrella. And it was such a light bulb moment for me and for many others that were in that workshop at the time. It went, oh my gosh, these things are all connected. Yeah. Oh, great. This is now making sense. It's fascinating, isn't it? Yeah. And it really, really makes you consider the root of these various things. And where there is something different, if it's in your brain or if it is in your immune system, I have interviewed someone previously who has written numerous scientific papers on the crossover between muscle activation. And particularly muscle activation in pregnant mothers and autism in children. Oh, there are huge crossovers. And so many of the people that I speak to about, I've done recently two interviews about the impact of something like long COVID on the prefrontal cortex. And that is exactly the same area of the brain. That is different in some of these spectrum or neurodivergent conditions. Yeah. And if we go to the likes of Gabel Matte, one of his things around ADHD, because as a doctor, he himself has got ADHD. All of his stuff is linking it back to the stress, perhaps undagnosed, perhaps diagnosed in utero for many, the nervous system disruption. If you're the child of a parent who is really struggling with overwhelm, really struggling with perhaps a stressful period, when you're inside still and you're being slightly more bathed in cortisol than another child, the chances of you becoming more prone to having some kind of ADHD, some kind of nervous system disruption just elevates for you. Yeah. My own story is, yeah, my mother was very, very stressed when I was inside and growing. And it's kind of taken me a long time to go, "Oh, there's a connection there." And that's okay. I'm fine with it. And I like who I am. And it's great. But that makes sense. Yeah. And a lot of it is that acceptance of it, isn't it? And it's not apportioning blame on anyone, your mother or yourself for how you are, but just embracing the, if all embracing our weirdness. Right. That's the story. That's how it is. And actually chances are, the stress started generations ago. You can't find a starting point for stress for most people. It's a generational thing where there may be certain dynamics and this is how you're taught to respond to difficult situations because that's how your parents responded. And that's because that's how their parents responded and so you go forth. So for me, it was about identifying. I don't want to pass on those stresses to my children where possible. So I try to be, I work to be much more relaxed and calm around my children. And I think one of mine, I had a more stressful pregnancy with my second child. And I think I noticed that he's more like me than my first. It is what it is, but I bring awareness to it now, perhaps more than I would have done. Had I not had my own diagnosis? So. Yeah. So early 2020. So not only did I have an undiagnosed ADHD nervous system, which made me more like at more risk of getting ill a lot when I was a kid, which I did. I then got glandular fever at 18, which I think is quite a common piece of many people's puzzles. So the Epstein Bar virus and was was someone who was phenomenally determined to ignore it. I got very, very ill at the time. Bed bound eight weeks dark room. Don't even put music on kind of stuff. Lost loads of weight. All my hair fell out kind of thing. But then, and that was during my A levels, but I was in university in September doing my performing arts to be because I was on a mission to leave. So you did that pushing through? Pushed through. And that was basically how I lived my life. I've just gone. I know that I will boom and bust. That's what happens. So I've always been self-employed or always worked for myself. I've worked absolutely 150% at the projects that I get involved in and then fall apart for a bit. But I kind of almost was factoring that in. I was like, this is how I do my life. I'm okay with that. But when that's your reality, that's my reality. That feels normal. It's normal. Right. And you know, yes, I became a mother, got married, had kids, all of those things. And everyone was just like, yeah, you just get sick a lot. Don't you? And I'm like, yeah, that's just who I am. It's okay. 2020. This virus appears on the horizon. And I know straight away, if this virus meets me, I'm telling myself, I use the word so NLP here, right? I'm almost giving the command to my body. If you get this virus, you'll get ill. Like properly ill. And sure enough, a week after lockdown began, I sat on the bird and went, oh, God, I really don't feel very well. This got the weird feelings going on in my body. I feel like there's something I see monster is traveling around my my system. And I started to get kind of food poisoning symptoms. So my mom wasn't a cough. It wasn't shortness of breath. It went for the gut first. And I went, well, I'm breathing. And I'm not coughing. So I'm just going to keep working because actually all of my work's just been flipped on its head. I've set up an online community. I'm going to keep going because I've got no income stream. And I'm actually having quite a lot of fun. This is great. I've got people from around the world in my online classes. And this is lovely. I can't not show up now. So I ignored it. And every now and again, it would kind of really cripple me. And I'd have to get someone else to cover a class. And I kind of pushed through for about six or seven weeks. And then my body, wow. Right. I was probably on my hands and knees. Like as I headed towards the seventh week. And then I hit the walls so badly. Like with so unwell. Proper shutdown. Back in the dark room. Noise sensitivity, light sensitivity, astamma, bleeding joints, hair loss, lung pain, heart irregularities, gut issues, skin issues. It went everything. Everything that you could do. My body did it as a kind of you are not going to do this to us anymore, Susie Bolt. Yeah. And I'm really saying to you, please listen to me. I've been trying to tell you exactly. You can't have fun now because you're sick. Okay. So put your ADHD hyper focus, joy focusing, dopamine seeking stuff out of the way. And we're going to shut you down. And it's it. I probably listened to the point where my doctor at some point sent an ambulance to the house and went go to A&E because this whatever's going on for you, they didn't know anything then really. They were just kind of scratching around. Yeah. But it was that extreme. Yeah, it was extreme. It was extreme. There was hushed conversations in the living room in my house with with my husband at the time and and a doctor of his cousin is a doctor and they were kind of he knew, what am I going to do about? And in the meantime, what I'm doing is lying in my darkened room with my Facebook app open on my phone connecting with people going, there's other people like me creating a community. And I need to not be tapping into the grief of the world here because this is majorly upsetting. I need to focus on something nice. So I set up my own little Facebook group and kind of went, hey, if anyone wants to join me over here, I'm going to be looking at things that we can do to make ourselves feel better. And that was the beginning of the community. It was born out of my own absolute dire need to meet with other people in the space where I could normalize what I was going through. Anyone else got this? Okay, great. So this is normal. It's not just me. I like that. That makes me feel reassured. I've come out of the hospital. My tests for the big scary stuff were all fine as with many. Yeah. Which actually I was reassured by. I know I know many people are really scared by that because they'd come away going, well, what the heck does what is going on? I think I had a sense of understanding this is probably my autonomic nervous system going absolutely haywire. So I need to have fun. I need to take my focus off my symptoms and how terrifying they are and go, hey, why don't we meet online and have a chat? And who's taking anti-histamines? And should we do a relaxation together? And let's just hang out. How about we do a fancy dress gathering? Well, but it doesn't matter how well you are. Just put a funny hat on and let's just show up and have a chat. And literally that was how it grew because I didn't want us to get together and focus on how ill we were. I wanted to acknowledge it, I wanted to normalise it, I wanted to talk about it. And then I wanted to say, do you know what? What we need, what we need is to love. What we need is to feel understood, listen to, acknowledge, validated. We need love, empathy, support and joy. And I think that's a really interesting point that you make there because I think so many people with this and with other chronic illnesses. The big word that came out then from you was fun. And I think so many people lost all fun, all joy from their lives during that period. They were in a hole by themselves, not knowing what was normal. Yeah. And I think one of the big things, not just with COVID, but with these kind of chronic illnesses, is the isolation. Oh, it's devastating. Yeah. And it's incredibly difficult for people to see outside of that or get outside of that. Yeah. Now I will get pushed back on this conversation because people will say to me, you don't understand what I mean, I've had long COVID for five years, but people will say to me, you don't understand what it's like when you are bed bound, when you can't get out of the room. And that that is definitely a challenge. But I think one of the things that you have tried to do with your programmes is bring back in that sense of community. And whilst we are not suggesting that you push forward through post-exertional malaise and make yourself worse, you're talking about taking small increments of things, be that movement, be that socialisation, be that changing your mindset slightly to find some positivity, some gratitude, something to remove that real black hole. Yes. I think the worst thing for anyone is to believe that staying in that room isolated by themselves is the only choice that they have. Now, I'm not saying you need to get out of bed. I'm not saying you need to do anything different, but I think if you can, access community from your bed and we get many, many, many people who join us from their dark room bed, okay? And that's a really, really important piece for anyone who's listening. If you're a health care practitioner, there is something out there for everyone. And we get a lot of people who join us. And I say, listen, I want you to know, first of all, that you're part of something now. We are your community. We're here for you. You can reach out to us at any time, ask questions. You can just log in and listen to us like radio. I want you to know that we're here to keep you company. And everyone in this community understands what you're going through and has been in that dark room bed for some time, whether it was a short period of time or whether it was a year and a half. I've got people who are still with us in our community who started when we first began the program. And I see this incredible incremental, slow, snail's pace progression. So it might be for the first year. There was someone that I just kind of acknowledged at the end of last year, actually, as a kind of student of the year. She spent the first year in bed. And she would only have a log in from bed, and it was always quite dark and she was struggling to speak. And then the next year, she was a little bit more vocal. And then the year after that, she was sitting up and managed to potter around and actually get into her living room. The progress for some people is so slow. But because we were there seeing it, and she would log in two, three times a week. Well, that was into classes that I run, probably other classes as well. She had a daily contact with her community. And we kind of kept her company. And so she would come in with difficulties. We have these kind of after class chats where we rely on the hive mind of the community. And she would come in and talk about various things that were troubling her. There's always some incredible wisdom in the community. And she'd go off and try things. But even if it was just about having difficulty getting a wheelchair that has got the leg up bit so that I can keep my feet raised because my pot is so bad. All of those things, you've got an incredible group of people who can kind of go, "Hey, well, actually this is what I tried or have a look for this or do some research on." That's a remarkable thing in itself, isn't it? People love sharing. People learn knowledge, their experience, and helping other people with it. Yes. And it's only by bringing people into the communities where you are dealing with other people with the lived experience. Live experience is king. Yeah. 100%. She's one of many, many students that I can see. Chris has been with us for such a long time. I see the progress and it's been very, very slow and lots of people, the progress isn't that slow, but for her, yes. And seeing her now, she managed actually towards the end of last year to get out of her flat for the first time and go for a coffee on her high street, which was so moving. It made me cry. We had a whole kind of community cheer. Well, so she's trying to make me cry just describing it. It's so powerful. And then other people see that and they're sharing that joy and people are going, "Well, maybe I don't need to believe that leaving my house again is impossible because if she can do it, and I has taken her a long time, but if she can do it, then maybe I can too." And I think the power of community, the power of doing some of the most difficult things in your life with other people cannot be underestimated, because we're social creatures and we need that support, guidance, encouragement, inspiration. We need it. We literally chemically need it in our biology to help us through these things. And you actually started creating this, the program that has become the rest repair and cover program in September 2020, am I right in thinking? Which is actually comparatively early on, if we look at any other provisions that were even put into, I did not even get a GP appointment until 11 or 12 months into my illness. And even then they didn't believe that it was something that was left over from COVID. It took me until I was 13 months in to actually get someone saying, yeah, this is a consequence of COVID. So to have that facility for people, some of whom must have been joining you, almost at the beginning of the illness, the people who had it right at the beginning. Well, there was a lot of us who had been February, March, April, infections in 2020, January, February, March, April. And I'd done the kind of first round of getting more and more and well, very unsupported. Gone in, had the test, hospital, go away now. Thank you very much. There's nothing we can do. It's probably some kind of post viral. You'll probably get through it. And I went, autonomic nervous system and they were like, yeah, and for me, that was enough. But also intuitively, we were all still doing lockdown and stuff then. I just went, I need to do this with other people. I need to talk about this. I need to relax with other people because my nervous system is so wired. I'm not going to relax on my own. I can't. My brain wants to do anxiety. I'm going to arrest that thought by connecting me with other people. So I created the groups for me as much as for the other people that I was beginning to have contact with. And I just went, you know what, why don't we just gather and have a bit of fun two times a week. And there was about 20 of us at the very beginning, like 20 people. And I'm still in touch with nearly all of them. Many of them have gone on to get fantastically better. But people still check in. And yeah, we kind of grew it from there. And as I went through my own journey and my experience, so we added to what was being offered. And I realized we need, we need everything because there is just nothing out there for people who can't leave their homes. And that was the key. But it's all well and good saying, well, we've got this really great support group at the hospital for people with long COVID. I'm like, no, no, no, you don't. I can't get them. Get them. Because even if they've got the energy to get dressed by the time they've got dressed and put their shoes on, they're done. And you're going to make them ill. So let's not ask them. Let's not even think about asking them to come in and see you. It's madness. You don't understand this illness. So I went, I'm just going to see if I can provide as much as possible for people who are in their beds. Because that's actually where we need to be finding people at that point when they're really stuck. Now, obviously, people are in their beds and people that they may live with may be going out to work every day or school. They're on their own and they're stuck in the house and going out makes them feel really poorly. And so we need to meet them there. Now, the community that you have ended up creating in your restripet or a cover program is broader than, than simply long-covid. You've encompassed other post viral conditions. You're dealing with people who have MECFS. You're looking at fibromyalgia. You have said that you are wanting to address the autonomic nervous system. Now, by that, you are not suggesting that these people in any way do not have a post-viral consequence. You are not suggesting this is something that they have manufactured in their minds and that is a big clarification that needs making because I think a lot of people when someone like you says we need to address autonomic dysfunction they say this is not my fault. I didn't do this to myself so why are you telling me that by doing some breathing, doing some yoga and people saying stop telling me to just go and do yoga? I totally get it. Absolutely right. Totally get it. So one of the things that actually my community really value is that I have a lived experience of this and my own health is a constant battle to me too especially because I'm now 52 years old. I'm throwing the men of poor's peace into the mix so who knows how I'm going to feel when I wake up day-to-day? Some days I'm like I can't get out of bed today, some days I can. I've had a succession of colds and horrible virus of reactivation of E.B.V. before Christmas. I'm constantly dealing with my health. It's not in my head I'm not making this happen to me but this is what I know. I know that I can help myself come out of the pit if I don't do anxiety around it if I'm not afraid of my symptoms and that takes work. Obviously that's a piece that has to be worked on and that I come into work with my own nervous system that gets into that sympathetic overdrive, that heightened state where everything is beginning to fire off and the brain is going a little bit and I can help myself come out of the pit quicker by activating my parasympathetic. So the part of my body that does the healing work, it won't switch on if we just talk about it as a switch, it won't switch on if I'm really stressed I'm feeling very very in the pit of despair and very activated. It won't switch on and so I stay stuck there and if I stay stuck there I'll generate more symptoms. I'll feel more and more and well. Yeah because there is that spiral or the feedback loop. Exactly. Because we can't underestimate how much that nervous system impacts our physiology. Absolutely and this I'm hoping that people really understand if we just look at that piece. There's a part of my biology which is activated and controlled by the vagus nerve and I'm hoping that everyone understands the importance of looking after your vagus nerve, getting it toned, bringing it back to. It's so interesting because I don't think it was even part of the public or medical conversation broadly prior to long-covid. No, exactly. No and actually I had quite a lot of doctor friends who I said I think this is dysautonomia and they said what's that? I went oh wow okay we've got work to do and it wasn't until I met Boon Lim who I know you talked to. Yeah. I do. Adelaide he found out about me and he went oh my goodness you're doing the work that people need to do and he's a specialist in guess what? Disautonomia. So if you get to consultant cardiology level they'll hopefully know about dysautonomia but it doesn't cascade down into your general practice level. So I would like to think that that language was bandied around a bit more now and your GP practice but it might not be. It's the same with MCAS but understanding that we do have a little bit of sway over activating or assisting or even just thinking about creating an environment in the body where the body can begin to help itself a bit. I'm not saying you're going to recover but I'm saying you're going to help yourself. It's creating optimum conditions within the body to start healing. That's it. And that's not saying that you don't have whatever is driving this or there are still people who say oh but maybe you just got used to being in bed and not taking your kids to school that you just. No. No. I think because of obviously many decades of mistreatment of people with chronic illness there is a massive pushback on this kind of suggestion and I think there's a lot of people who will have suggested some of the things that I talk about and offer but in a way that is almost insulting. I never say to someone oh you should just start doing yoga and it will make a difference despite being a yoga teacher and despite offering it on my platform because actually the average yoga class will make someone incredibly unwell. So I think there's lots of bits of yoga that I talk about and one of the most important bits is the concept of community actually. The concept of creating a sangha that's the practice of yoga. You have a group of people who are working together to share their lived experience and inspire and uplift each other. That's yoga. I do not think you can underestimate the power of the community of being in class or you see it as well with people who have joined choirs. Yes, exactly. The breathing as a group has immense power and I don't know technically whether that is to do with our nervous systems feeding off each other just the way that you feel when you're with other people but there's something rhythmic about it. Now you use multiple of these practices in the rest of the programme. The programme if we can just go into the detail of it a little it's sort of focus is recovery and regulation of the nervous system and you do that via breathwork, meditation, mindfulness, yoga, needle which I think literally saved my life. Yes, 100 percent. Chanting but there's one really interesting one in there. That I think would would be something worth you explaining and that is you offer a cardio hit and weights class to people who there are two things that they have been generally told. They've been told avoid exercise. It's going to push you into post-exercise from the legs. Don't do it. Don't raise your heart rate. Don't do cardio. Or if like me you were sent to an NHS exercise specialist you are told in a room by someone who has no knowledge of chronic illness. But you just need to start lifting weights and incrementally increase the amount of weight you're lifting then you'd stop being deconditioned. Which is utterly devastating. We've had so many people who've come through introducing people back into the gym and going really slowly and all of that. For some people I've absolutely 100 percent seen that that's helped them. For others they've been like oh my goodness this is way too much. It caused me to crash. This is ridiculous way too far. And I think it will really depend on the leader of the programme in your particular area and we encourage people to listen to their gut if they've got a place and they want to try. It's like if you find the you're being asked to do more than you want to do that is a red flag and you really need to pay attention to it. We offer a spectrum of classes and this is really really important. We ask people to come in at level zero and level one. So level zero is you just come in and watch. Okay now any of the classes that involve anything that look remotely like rebuilding strength they're for like level three level four plus. So we have levels which allow people like me can I just say so you know I started the new year beginning to have a little bit more energy again after all of the illness that I had October and November December and I went okay I want to do a little bit more now. I want to do a little bit of weights. I don't want to add in cardio. So we have a class that is just a little bit of weights and a little bit of stretchy and so it allows people to find a class for those who are ready finally to do a little bit with all of the right verbal queuing of listen to your body put it down maybe you're just going to do one of these today maybe you're not going to lift any way to tall. We're really good at doing what's called trauma informed language teaching. So never asking people to push through do more reps feel the burn. It's only for people who are way down the line of recovery that want to find that safe space to begin to do a little bit without having to go back to general exercise or a gym. But one of the very interesting things about your program both of your programs I believe is that the majority of people that are involved have extensive experience of chronic illness and multiple of them have their own personal lived experience of that is really important. But themselves are looking after someone with it. And I guess that informs if you've either lived it yourself or seen the next day of someone who has been pushed too far into the EM because if you go to a normal gym maybe you see a trainer or you do a class there's no follow up the next day so that person doesn't know how that class is landed with you. And also it's almost impossible I think. to comprehend the delicacy and the kind of minimal amount of effort that one needs to teach in a class for a body that has been and lives with chronic conditions. So if you didn't have a teacher that fully understood that, there's just no way that they're going to be able to comprehend. What you mean just lifting the hips once? Is that it? Is that going to be enough for someone? Like, yep, 100%. One lift, that's plenty. And then maybe two, three minutes rest. It's like no teacher that hasn't lived the experience will understand that. And the necessity of that being something that is constantly reminded about, constantly encouraged to rest, constantly, you know, do less. In my program, all of it is less is more. And I constantly remind people in the classes that I teach. If there's a part of your brain that is going, oh, I might just do a little bit more because the exercise will be good for me. I say, I want you to get that piece of your brain and kick it out because that's part of the problem actually. I want you to come in and celebrate languishing here with me and just having a bit of fun. Okay, because for some of you just logging in is going to be stimulation enough. You don't need to add movement here. But that's interesting in itself, going back to the language element of it that you're also not just saying to people, change your belief system and make yourself do more. No, because no, it's far more nuanced than that. It's not saying, come on, you can get, you can do it, you can get on with it. You can, you can lift it one stage higher. Yeah, no, and actually I really, really focus on there's a part of your brain that will have been so conditioned by society to push through to do more to try your best to move until you're tired. And I say, that is the piece that we need to unpick because this for some of us certainly for me is part of the problem. Do you see that quite regularly through in terms of the demographic of the people that come to your program? Is it people who have always pushed? Yes. And you know, on one hand, you've got those for whom there are main drivers. So I do a lot of work in the firm program on personality drivers that transactional analysis piece, what pushes you. So I have a very, very big hurry up driver that wants me to just get everything done really quickly. And I'm just going to go here and I'll do that. And I'll take on 50 tasks and today, which doesn't serve me in any way, shape or form. It's a very ADHD thing. And then you've got those for whom putting others needs before themselves. All I've just got to help them with that. And I can't sit down and rest before I've done that. And I can't possibly do this because that person needs me to take care of. So there's that that we're dealing with. And then we've got the be strong driver, which is, oh, I don't want to be weak. So I'm just going to keep going. And I'm going to appear to be strong because I don't want to be that person that can't do something or that is seem to be lazy, which is a terrible kind of internal self-shaming mechanism that pushes people through. So, you know, and that's just three. There's more. I think I've got all three of those. And I think we do. I mean, that's the thing. There'll be a couple that we can't even have it a lot. You know, obviously I haven't even mentioned perfectionism. There's all of them at any given point in our day. Having a little bit of a kind of leading moment. And we do need to first of all be conscious of, oh my gosh, look at the programming that I've grown up with. And this programming gets instilled when we're very, very young. You've got a perfectionist parent who's saying to you, oh, well done. That's perfect. Oh, your room is perfect. Oh, your home, like it's perfect. You're looking for those kind of rewards. My poor children. I want to be perfect. And I think mine was, you know, let's do it quickly and let's be really efficient and let's do lots of different tasks. And, you know, so I I grow up with the, okay, I'm really capable at doing a lot of things. Even if I'm ill. Yeah. Even if I've got a broken limb, I will go into London, central London on the underground. And I will teach my classes and do X, Y and Z because nothing's impossible. The drivers, their drivers, you know, and they push us off the cliff. At some point, they can take us on brilliant adventures. So actually I love my drivers. But they can also, when you get to a certain point is where in life where your body's just like, I'm just kind of fed up with the creating really like this. It then becomes something that you need to be more conscious of and go, yeah, I, I need to let go of some of the behavior that comes with that driver. And I laugh my driver. But it's also it can be too much. And I'm just continuing listening to our conversation in episode 10 where we discuss the need for kindness, creativity, distraction from symptoms. And we delve into nutrition as well as the small wins and talk about how Susie Bolts programs encourages to listen and enrich our mind body and souls. 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 a hundred thousand 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.

Podcast Summary

Key Points:

  1. Susie Bolt developed Long COVID in 2020 and drew on her background as an NLP practitioner, counselor, and yoga teacher to create online rehabilitation programs that have helped over 5,000 people make incremental health gains.
  2. NLP (neuro-linguistic programming) focuses on identifying and shifting patterns of thought, language, and beliefs to create positive change, helping people move from fixed, limiting mindsets about their illness.
  3. Susie emphasizes the connection between neurodivergence (like ADHD), joint hypermobility, and increased susceptibility to chronic illness, noting these conditions often share underlying nervous system and immune system factors.
  4. Isolation is a devastating aspect of chronic illness, but Susie’s programs prioritize community, joy, and fun—even from bed—to counteract the downward spiral of disconnection and hopelessness.
  5. Small, incremental changes in movement, socialization, and mindset can help people begin to feel better without pushing through post-exertional malaise.

Summary:

In this episode of Make Visible, host Emily Kate Stevens interviews Susie Bolt, who developed Long COVID in 2020 and used her expertise in NLP, counseling, and yoga to build online communities and rehabilitation programs for those with post-viral illness and chronic fatigue. Susie explains that NLP helps people recognize and shift limiting thought patterns and beliefs about their illness, creating a paradigm shift that can lead to chemical changes in the body. She highlights the frequent overlap between neurodivergence (such as ADHD), joint hypermobility, and chronic conditions like Long COVID, often linked to nervous system disruption and stress starting in utero.

Susie shares her own story of pushing through illness since childhood, including glandular fever, and how her undiagnosed ADHD contributed to a boom-and-bust cycle. When she got COVID, she initially ignored symptoms, leading to a severe crash with multiple symptoms. Her recovery began by creating a Facebook group focused on connection, normalization, and fun, rather than dwelling on illness.

She stresses that isolation is devastating, but community can be accessed from bed, and small incremental changes in movement, socialization, and mindset can help people feel better without exacerbating symptoms. The conversation continues in episode 10.

FAQs

NLP, or neuro-linguistic programming, examines patterns of thought and language formed over life. It helps people recognize these patterns as programs they can choose to change, often leading to paradigm shifts in how they think about their illness.

Susie developed Long COVID in 2020 and created an online community from her bed to connect with others. This evolved into rehabilitation programs that have helped over 5,000 people make incremental health gains.

Susie notes a pattern linking ADHD, autism, joint hypermobility, and conditions like POTS and autoimmune issues. These factors often coexist, increasing susceptibility to post-viral illnesses.

Susie's programs allow people to join from bed, even in dark rooms, via online community gatherings. The focus is on connection, validation, and joy rather than pushing through symptoms.

Susie emphasizes that fun and joy are vital for mental health, helping counter isolation and despair. Activities like online chats or fancy dress gatherings shift focus from illness to positive engagement.

Her programs focus on small, incremental changes in movement, socialization, and mindset, without pushing through symptoms. The goal is to meet people where they are and avoid boom-bust cycles.

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