Let's talk about…how CBT can help manage living with long term health conditions and trauma

Let's Talk About CBT

In this episode, Helen talks with Lizzie, a beauty content creator and disability advocate, and Bex, a CBT therapist, about Lizzie’s journey navigating living with long term health conditions, trauma and the transformative impact of Cognitive Behavioural Therapy (CBT).

Lizzie shares her experiences living with Crohn's disease, POTS (Postural Orthostatic Tachycardia Syndrome), and hypermobility spectrum disorder, alongside the emotional challenges of managing these conditions. She discusses her initial scepticism about therapy and how CBT helped her address anxiety, PTSD, and prioritising her own well-being.

Bex offers insights into the therapeutic process, addressing common misconceptions about CBT, and highlights the importance of building trust and tailoring therapy to individual needs. Together, they discuss the interaction between physical and mental health and strategies for balancing driven lifestyles with well-being.

Useful links:

Explore Lizzie’s content on Instagram and TikTok (@slaywithsparkle).

Listen to our sister podcasts: Let’s Talk About CBT - Practice Matters and Let’s Talk About CBT - Research Matters: https://babcp.com/Podcasts

Find us on Instagram: https://www.instagram.com/babcppodcasts/

Learn more about CBT www.babcp.com

Credits:

Music is Autmn Coffee by Bosnow from Uppbeat

Music from #Uppbeat (free for Creators!): https://uppbeat.io/t/bosnow/autumn-coffee

License code: 3F32NRBYH67P5MIF

This episode was edited by Steph Curnow

Transcript:

Helen: Hello, and welcome to Let's Talk About CBT, the podcast where we talk about cognitive and behavioural psychotherapies, what they are, what they can do, and what they can't. I'm Helen Macdonald, your host. I'm the Senior Clinical Advisor for the British Association for Behavioural and Cognitive Psychotherapies  

What we've got for you today is a conversation with Lizzie and Bex. Lizzie's going to talk about her experiences of having CBT and living with a number of conditions that she'll tell us more about in the episode. We're going to talk to Bex, who is a CBT therapist, and she's going to talk with us about working with Lizzie as well.

Welcome to you both. Lizzie, would you like to introduce yourself?

Lizzie: Hello! Thank you so much for having me. So as Helen's just said, my name is Lizzie. I am also a beauty content creator known as @slaywithsparkle on Instagram and TikTok and a little bit of YouTube and I'm also a speaker that talks about disability awareness. And I try and raise awareness about the health conditions I've got and general sort of disability awareness and activism about that.

Helen: Thank you Lizzie, and welcome. Thank you for coming to talk to us today. And Bex, would you like to tell our listeners about you?

Bex: Hi. Yes, I'm Bex. I'm a CBT therapist and worked with Lizzie a little time ago, when I worked in a physical health service for IAPT at the time. And I currently work more with trauma in Sheffield both in the NHS and privately.

Helen Thank you, Bex. And maybe I should just say, when you said IAPT, we're now talking about NHS Talking Therapies.

Bex: That's right. Yes. Thank you for providing the update.

Helen: So Lizzie, can I ask you a bit about what was happening for you? What was going on that meant you ended up having CBT?

Lizzie: So for me, I really had quite a negative opinion about any sort of talking therapy and had very much been brought up with the idea that if you have some sort of mental health problem, you should be able to solve it yourself. And if you just think positively and carry on, then everything should be fine.

Because of my health conditions, so I will just mention just briefly so people are aware what my health conditions are just for context. So I have, Crohn's disease, which I was diagnosed with when I was 21 and then later about 9- 10 years later, I was diagnosed with hypermobile spectrum disorder and also POTS, which is a condition that affects my blood pressure and heart rate. And when I had a first flare of Crohn's disease. I'd obviously had it a long time without realising, but when I first flared with Crohn's disease, I really struggled with the concept of having a physical health condition that I couldn't push through. So with my Crohn's, I ended up ignoring a lot of the doctor's advice because I had this idea that I should be able to cure myself. I really pushed myself to look at alternative therapies. And then, because of that, I ended up ignoring what the doctor said and becoming a lot more ill. Unfortunately, because of a combination of the Crohn's having been misdiagnosed for a long time as IBS, and then because of all of those sorts of ideas about that I should be able to cure myself, my Crohn's did get so bad that I ended up having to go to hospital and have emergency surgery on my bowel. Years later, so about two or three years later, I started having real panic attacks, which I'd never had before. I was anxious all the time and I couldn't sleep. I would sometimes wake up in the middle of the night at like 4am and get the urge to clean the entire house and was sometimes just up in the middle of the night pacing up and down. And my partner at the time said to me, you know, this is not normal. Something's going on. You really need to think about getting some help for this. And I was devastated at that concept because I obviously had this idea that I should be able to fix myself. And so that was the sort of wakeup call that I had to go and get some help and I applied to IAPT at the time and had my first round of CBT. Since then I've had three rounds of CBT and a course of EMDR as well but yeah, that was the first thing that sort of led me to CBT.

Helen: Thank you, Lizzie. And it just strikes me what a difficult combination of things you experienced that not only were you having a number of quite complicated and long-lasting physical symptoms, also the experiences you'd had when you were younger meant that it was really difficult to seek help for the panic attacks and the anxiety and so on. Can I ask you just to say, in case anybody's not familiar with the terms, can you just say a little bit about what the symptoms of Crohn's disease are?

Lizzie: Yes, absolutely. So Crohn's disease is different for everybody. For me, I really struggled with pain and one of the biggest symptoms that I had was pain. I also struggle with diarrhoea. It's not the most glamorous disease. It's quite embarrassing sometimes. Some people have a lot of nausea and vomiting. For me, that's not been as much of a problem. To me, the biggest problem has been pain. And it got so bad that when I was actually in my final year of university, I'd been told by the doctors repeatedly that it was IBS, and it was just stress related IBS and I just needed to make sure I watch what I eat, tried to up my fibre, which made me a lot more ill. And eventually it got to the point where I literally couldn't even drink water because my oesophagus was closing up. I was in absolute agony and I finally went back to the doctor and I was like, really, honestly, there's something seriously wrong here and then they finally sent me for the right tests and they found the Crohn's disease. The other big symptom with Crohn's disease as well is fatigue. So, most people actually say that fatigue is the most debilitating symptom of Crohn's disease. And for me, I mean, at the moment I am in a flare and I am sleeping 14 hours. And if I don't get that 14 hours, I cannot function and I need a full day in bed to recover.

Helen: And again, you've said about some of the symptoms being a little bit similar to IBS or Irritable Bowel Syndrome but having a really far reaching impact on every area of your life, really. You also mentioned that you had POTS, which can affect your blood pressure. And if I have this right, it's Postural Orthostatic Tachycardia Syndrome?

Lizzie: Yeah, so it affects your, for me, it affects my blood pressure. Not everybody has problems with their blood pressure all the time. But what happens is your heart isn't getting the right signals. And so you end up having a really high heart rate when you stood up and then that can lead to you passing out. It also leads to symptoms again, like nausea, fatigue and for me, it just feels horrible. Like, it's just that feeling of like sometimes the world's sort of closing in on you and when you're about to go you just feel really sick, really like something's pulling you to the floor. It's a very frustrating condition. I think out of all of them, Crohn's is the most dangerous and that one is the one that when that's flaring, I'm always a little bit nervous because mine is quite severe, but POTS is definitely the one that is the most infuriating. I've had to lie down in the middle of shops. I once had to lie on the floor in the middle of Poundland because I was passing out and honestly, it's just mortifying. It's really embarrassing.

Helen: And I'm noticing there as well, Lizzie, that you've just said that the Crohn's disease because of the symptoms of diarrhoea and you know that can be embarrassing. We all know that the impact of eating a lot of fibre, which you were advised to do can be, can lead to embarrassing symptoms and then the POTS as well, that having to lie down somewhere public, more embarrassment. And in addition to that, you also said that you have hypermobility syndrome. And again, can you just say a little bit about what that's like?

Lizzie: Yes, so for me, I have a late diagnosis of hypermobile spectrum disorder. There are a couple of things that are related, so similar, sorry. So there's hypermobile EDS and then there's also hypermobile spectrum disorder and they're very similar conditions. But the one that I have is hypermobile spectrum disorder and with that, it just basically means that my joints are too floppy. They extend past the natural point where they should extend because my collagen is built in a way that means it can stretch further than it should. So it was okay when I was younger. I used to be able to just do amazing, you know, bend my back really far back and look very bendy. And then as I got older, as the rest of my connective tissue ended up getting looser, as it naturally does when you get older, my joint started to get worse. I got more and more joint pain. I'd had joint pain my whole life, but it became a lot more severe. And it's now got to the point where I am not able to walk any distance with, any significant distance without a walking stick. And in order to go around, say, for example, like a supermarket, I need a wheelchair.

Helen: Thank you for explaining all that, Lizzie. Again, I'm listening to you and I'm hearing lots of things that could make it also really hard to manage your mental health. And I want to come back to you and talk to you a bit more about what it was like having the CBT.

Before we do that, can I just ask Bex what it was like for her when she first met you? Because we've heard a bit about your background and maybe what you were thinking before you first went to see her. So, Bex, what was it like meeting Lizzie for the first time?

Bex: So, you can't see Lizzie but Lizzie is a lovely, warm person. So that was obvious from the start and I guess I was, with any physical health problem, the thing we're trying to do at the start is to understand what someone's experiencing and making space for someone to kind of tell their story a little bit about what they've experienced and what they're finding difficult so that we can kind of map that out and work out how we could potentially help too by working on this together. I think when I first met Lizzie, we fumbled a little bit at that process. I don't know if you want to say a little bit more about that, Lizzie, and I think, you know, I was trying to explain how pain and mental health might interact, and I might've done that a bit clumsily.

Lizzie: I think, to be honest, I went in with this real prejudice, I guess, against mental health. So when I came to you, I had actually already had one round of CBT to start with, but I was really still coming from this place of prejudice against talking therapies and fear about whether I was going to be believed about my health conditions. The first round of CBT that I'd had, it was in a place I used to live down south, and it was very much focusing on the anxiety. And we talked about it being to do with the fact that I've been diagnosed with Crohn's disease and the fact that I'd had a lot of hospitalisations and the fact that I had emergency surgery, and also the fact that I'd been told that I might have a shorter life expectancy as well. And so it very much focused on the anxiety of dealing with those concepts. But underlying it all, I still had this fear of not being believed about my health conditions. I also, I will just share now, because it is relevant as well, that while I was in hospital for the emergency surgery, the night of that emergency surgery, I was physically abused by a doctor. He was a locum doctor that the hospital had employed just for, you know, a couple of nights. And he insisted on doing a physical investigation on me despite me asking him not to and then he purposefully inflicted pain on me and he enjoyed it, it was a really unpleasant, horrible experience and thankfully a nurse walked in as he was doing this and she got him to stop and he got reported and he no longer works in hospitals and that has all been dealt with.

But when I first went into CBT, I hadn't even thought about that as something to talk about because I felt like that was my fault. And I felt like that was my fault because I was in pain because I hadn't done a good enough job at curing my conditions. And so that narrative was in my head when I came to see Bex. And I already had this idea of like, I'm not good enough at curing myself, but I'm now getting to the point where I do need to believe that I've got these health conditions because I'm seeing physical evidence of it more and more. So I was sort of in this halfway point between trying to accept it, but also thinking, nobody else is going to believe this because I don't really believe it. And that's what I came to Bex with, which must not have been the easiest patient. And then at first we did have, I think there was a very slight miscommunication about the fact that CBT can help people with physical health conditions with pain. And I saw that as, oh she's saying it's all in my head and that if I just talk about this, then my pain is going to be completely cured, and they don't believe me that I'm in real pain. But then Bex was brilliant and stopped me and said, no, I really do believe you and you explained it. So, Bex, I'll go back to you because I think you explained it really well and it really helped me.

Bex: Well, I think I just said, I believe you and your pain is real. Can we just have that as a starting point and think about how what you've experienced has contributed to living with it and how some of those beliefs you have about yourself might make it harder and maybe they're the bits that therapy can support you with.

Helen: Thank you for that, Bex. We've just heard Lizzie talk about, not only having those health conditions and those beliefs, but also about being assaulted when she was supposed to be in a safe place. And you started to talk there about the interaction between the physical conditions and perhaps the emotional beliefs thinking. How did that then help you decide with Lizzie what to do next?

Bex: So we talked about it together to decide what to do next. And I guess part of that process was understanding kind of the emotional impacts of both the physical health conditions, you know sometimes there's understandable uncertainty, anxiety, maybe grief associated with those things and the adjustments that are necessary, but also the huge emotional impact of her trauma experience and how that contributed to the stress she was experiencing day by day.

And really it, originally, it's mapping that out and understanding it as much as we can to inform Lizzie making a choice about what she wants to prioritise. And, if I remember, we started with some work on physical health and understanding that, partly because of you already alluded to that kind of disbelief you had about your own kind of symptoms and in your own body and listening to that. So I think we did some work to start with on that before doing a kind of CBT for trauma approach that Lizzie was very much leading that decision.

Lizzie: Yes, I think the other thing that I remember as well is that I didn't, I don't think I opened up to you about the thing that happened with the doctor straight away. I feel like I went knowing that I had still got anxiety because of things that had happened in hospital and the Crohn's and everything generally and the fact that I was being diagnosed with POTS, I think that was what was going on as well. I was just about to be diagnosed with POTS, so this new diagnosis had sort of triggered a lot of anxiety because of what happened when I was diagnosed with Crohn's disease. It was sort of like coming back. But I don't think I actually mentioned the doctor to you straight away. I think that came out naturally when you sort of asked me to talk about what had happened and what were the things that I sort of was getting in terms of flashbacks because I was having PTSD flashbacks as well. Sorry, I forgot to mention that, and I think we pulled it out by having those conversations. So it was really important that you worked with me on it because that enabled you to be able to pull out this major thing that I probably didn't even see as a priority because I blamed myself for it. So I thought that was really useful.

Helen: And I'm hearing from what you're saying that combination between very difficult to manage physical symptoms and how those interacted with what you believed and how strong that was. And I think it's really interesting that sometimes people talk about long term health conditions, as if they were all in the mind and that being completely wrong. And coming to someone like Bex, who's got psychologist or psychotherapist or something like that in her title, being particularly difficult at the same time as for you, believing that it really was something that you had control over by the power of your mind or something like that, that somehow, if you only tried harder, you could change what was happening.

Lizzie: Yeah, absolutely. It was, I was terrified. Honestly, I was so confused about what was going on in my own brain. I felt like I needed to do something because I was getting flashbacks at that point. In any sort of moment where I wasn't actively doing something, I was getting flashbacks every 15 seconds, I think. Honestly, it was it was awful. I was getting certain colours were triggering things, and it was constant. It was exhausting and I knew there was something that I needed to do about it. I had my first round of CBT which was successful at helping me bring my anxiety down, so I had that sort of stepping stone, but I was still coming from this place of fear and doubt. And I think part of that is because I was told by the doctors when I was first diagnosed with Crohn's that I should have CBT. And I thought that was them saying that it was all in my head, but it was actually that they were prescribing it as a way of helping me cope with the pain, but the way it was communicated to me made it sound like they just thought, Oh, well, if you have CBT, then you'll be cured of Crohn's disease, which is not what they meant. And I now know that having spoken to people who work in the sector more, I now understand that.

But I think that a lot of people, when they are first told, oh, I think you should have CBT. They think, oh, this is just the doctor trying to fob me off, but it's not, it's them using their toolkit of things they've got available to them to try and help. It's just not necessarily communicated that well. And I think if it was communicated to me differently, back when I was first diagnosed with Crohn's, maybe I would have had CBT back then, and maybe I might have had a bit more support as I was going through the diagnosis. And some of that fear might have been mitigated a little bit back then.

Helen: I think that's really important for you to have explained that actually, that sense of, for people like myself and Bex, perhaps, to understand how to explain why what we've got to offer might be useful and not to make assumptions that someone that we're recommending for CBT will automatically know what we meant. So that's an important message. I think.

Once you did go to CBT, can you tell us a bit about what was actually helpful? What did you actually do or talk about? What was it that seemed to make a helpful difference?

Lizzie: So the first round of CBT that I had was very much focused on mindfulness and being able to be in the moment. I did have PTSD and my PTSD score was very high, my anxiety score was very high. I think my depression score was lower at that point, I'm not sure if I scored for depression at that point, but the main thing that I found helpful was being able to stay in the moment because I was constantly worrying about the future, worrying about death, worrying about what was going to happen if my Crohn's flared again, worried about what was going to happen if I had to stay in hospital again, and I was constantly writing all these stories for myself that weren't happening, and living in fear that I didn't need to be thinking about. So that really helped me just to be mindful and to focus on the moment. And when I first heard the term mindfulness, I was like, right, okay. Are we just going to be like sit in a circle and go “ohm” or something? And it wasn't that at all. It was very much using strategies that are very simple to just help my body and my mind realise that I am safe in this moment. And that for me was really helpful. And as somebody coming from a place of doubt, I think again, if that had been communicated to me before I'd gone into it, I think I probably would have been a lot more open, because I think even back then, my first therapist probably had a lot of resistance from me as well.

And then when I came to Bex, the main thing that I was struggling with then, I think was the PTSD flashbacks, but I think I also scored for anxiety and depression at that point. I was, again for context, I was a teacher still then, so I now have had to medically retire, unfortunately. But when I first saw Bex, I was still a teacher, and I was really pushing myself past the point that I should have been. I was exhausted. I was in pain all the time. I was determined to have a successful career, which I did have. Despite all of this, I did have a very successful career as a teacher, but the reason I had that successful career was because I pushed myself despite all this pain. And it was also a way for me to take my mind off the PTSD, because if I was busy, if I was constantly go, go, go, it meant I didn't have to think about it. So that was where I was at when I first came to Bex. And I think one of the things that she did was, like I said, pulled out the key things that were kind of coming up in flashbacks. And then we did a sort of narrative about the trauma, which was horrible. I'm not going to say it was really horrible, but it helped. So I think that's another thing to say, like, if you're having CBT and the therapist suggests something that is horrible, it's probably going to be good for you because yeah, so we had to basically go through the story of the most traumatic time of my life ever. Over and over again, and I was given homework of going home, reading it through this narrative of like everything that happened over and over again. And it was one of the hardest things I've ever done. Honestly, it was horrible. But by the end of it, I got to the point where I can now, you know, come on a podcast and tell you I was assaulted by a doctor. When I first saw Bex, I couldn't even say the words about anything that had happened. And the fact that I can now come on publicly and talk about this is, you know, that just shows how helpful CBT was for me, because I honestly, I would have never imagined talking to anybody about it. I didn't even tell my partner who I'd been with for, I think over 10 years at that point, I didn't even tell him until I'd gone through that process of CBT. Most of my friends and family had no idea.

Helen: Thank you, Lizzie. It strikes me from everything that you've just been telling me that between working on the post-traumatic stress disorder, the PTSD symptoms and working with Bex to do something that you really didn't want to do and actually deliberately, repeatedly going over it until you could talk about it until, like you say, you can come and talk publicly about it with us, which we're extremely grateful for, but also hearing how hard that is. And in a moment, I'm going to be asking Bex about what she does both to persuade you and other people to go through something that's that difficult, and how you make it manageable when clearly it's a horrible thing to go through. What I might also want to come back to you about as well is you really conveyed how driven you were about that wanting the career, keeping busy, pushing it. And I want to come back about the impact of that as well, if I may. But first, can I go to Bex and just talk about, Lizzie just told us that you've essentially asked her to do the worst thing and do it repeatedly.

Bex: Yes, we did. So yeah, it's intuitively the last thing you want to do when you've experienced, you know, something so, so awful and life threatening, that the last thing you want to do is talk about that. So, we do prepare for it, we do some sort of exercises to make sure that we have the tools to calm down if it's distressing, and we explain the theory for why we're doing that because these are kind of stuck, emotional responses and perspectives from being in a situation that was too much for your brain to process at that time. So we're making the space for it subsequently to understand what happened, connect to the feelings that were overwhelming at the time and sort of safely release them through this process. And as well as doing that, we also understand, you know, look at the beliefs that became stuck at that time. And we challenge those together to see if we can get some kind of perspective. So, for example, you were talking about the self-blame, that is so, so usual with trauma. And we looked at that from a different perspective now we had all the information, and I guess the way we encourage people to do that is very much making sure it's their choice, you know, nobody has to do this, but explaining what the benefits might be if we were to try doing this together and try doing it at the pace that you feel like you're able to tolerate and that you're in control of the process. And it's also important to have that story heard and understood by both of us in that process.

Helen: And can I just talk to you both about that experience of being really driven. And there was something about the way you described that, Lizzie, that part of that was trying not to be triggered or think about all the bad things that had been happening for you. But also that general style of pushing for a career, being really busy, being highly motivated and I just wondered how the two of you managed that aspect, you know, during your sessions or between them, perhaps more importantly.

Lizzie: I think one of the things I can remember was in the first session. So I explained that I was, you know, determined to still be a teacher and how I loved my job, which I did, and I still wish I could be a teacher, I'm not going to lie, I really did genuinely love being a teacher which is part of why I was so driven, because I actually did really enjoy it. But there was definitely that element of me trying to kind ignore everything. But one of the things that Bex did very early on, I think it was the first session, she just said, your homework is to do something fun. And honestly, the concept of doing something fun for myself at that point was unimaginable. And I found it really hard. I found it really hard to think about something to do just for fun for myself. And I think that was just a sign of how much I needed that help because I couldn't even think about what to do. And that really helped me to start to come out of this really, like, blinkered existence where I was thinking, go, go, go, go, go. And it just gradually, bit by bit, helped to pull me out of it. And I think you kept suggesting things like that. And then we talked about what was nice in my week and things like that. And it just helped bring me out of this sort of bubble that I was in.

Helen: And Bex, will you tell us a bit about how you were thinking about that as a CBT therapist? What's going through your mind when you're working with somebody like Lizzie, who's working really hard, but is almost stuck for finding something fun or rewarding to do? What's going through your mind as a therapist?

Bex: I didn't remember that actually, Lizzie, but I think, well, I guess I'm just noticing how driven and how exhausting it sounds to be kind of pushing so hard, despite feeling so ill. And I'm encouraging a new pattern of behaviour, I guess. I'm encouraging a different way of responding just to try it out. You know, with CBT, we're always just testing stuff, see what works, what doesn't, and so I guess I'm encouraging that early doors to get a bit of a buy into the concept, you know, are you're okay with this approach? And I do remember that we did throughout, we did do bits and pieces around understanding the consequences of working that hard or noticing, cause sometimes you might want to and it might be the right thing for you, but sometimes it might have more impact in ways that are less helpful and you might want to try out a different pattern. And I think we might've looked at working pattern and problem solving that or negotiating with work about trying different approaches and different working weeks to see what was more manageable and more sustainable.

Lizzie: Yeah, I remember doing that. And also remembering you helping me a lot with being able to actually have time off work before I was forced to by my body. So, I used to get to the point where I was completely exhausted or in such agony that I couldn't move. And that would be the point when I'd phone in sick, but I think we did a lot of work looking at what my body was doing, thinking about, actually would it be helpful to have some time off before I get to that point rather than waiting until, you know, I need to end up in hospital or something, and giving myself permission to relax every now and then and prioritise my body and that really helped me.

Helen: There's something there about finding a balance, whether it's a work life balance or a fun and effort balance, or a, I don't know, resting and doing things balance, but there's something about finding a way of managing your activity and energy levels and ending up actually being able to do more rather than pushing it beyond what your body could manage and then having to take enforced rest at a time, which was already kind of too late in terms of the symptoms. So I'm hearing what you were working on together was about managing day to day life as well as other pieces of work that was specifically to do with resolving incidents or traumas that had happened in the past. So you were fitting a lot into therapy sessions. It sounds quite busy.

Lizzie: Yeah, it was, it was useful.

Helen: And I wonder, looking back on it, you've already told us that doing that repeatedly going over the traumatic event was one of the hardest things that you've had to do. Was there anything else that you found really challenging that you and Bex agreed on, but you found it really challenging?

Lizzie: I think probably what I've just been talking about, about having time off work, I think I was quite resistant to that. I think I was scared to have time off work and to prioritise my health. At that point I'd just been diagnosed with POTS, I'd had a long-term absence from work and was feeling really guilty about that. Obviously as a teacher there's an added level because you've got your students who don't necessarily understand why you're not there. I was a secondary school teacher, so I did actually talk to some of them about my health conditions a little bit just to give them context, but some of particularly the younger ones, the year seven students really struggled with where I'd gone and were worried about me. So I think I had a priority in my mind to be at work and Bex's priority was my wellbeing overall, as well as making sure I had this fulfilled career. And I think I was willing to sacrifice my physical health for my career, but didn't see the big picture of that actually if I do that constantly I'm not going to be able to do this job anymore anyway, which did end up being the case naturally because of the way my health progressed. But that wasn't because of me pushing it. That was just because it got to that point. And when I did have to come to that point where I needed to medically retire, the work we had done ended up setting me up for that. And, I'm not saying as well that my, you know, the work we did in CBT was it. I've had more CBT, I had another round of CBT in the pandemic. Afterwards, I needed to have some more support because obviously all of this stuff to do with the pandemic and I was shielded. So I was actually picked as one of the most vulnerable people in society. And that was scary and brought up all this confusion about, Oh, I'm really ill. Like they, they actually believe me, the government messaged me, they told me I'm ill, you know, it scared me. And then I've also had a round of EMDR as well, which was focused on childhood trauma as well, which actually did weave its way into the physical health and also why I am so driven in terms of what I want to achieve as well and in terms of accepting my health conditions. But I would say that CBT helped me get to the point where I'm at now, where I'm medically retired in one way. I still do my content creation work. I still work as a speaker, so I will work a couple of times a month doing talks, and I am able to do that in a way where I'm still driven to help people, and I'm still driven to get that out that message out to people, but I spend most of my time in bed and that's okay and I can do a bit of both and if something needs to go because my health needs to take priority, then it does.

Helen: I'm really curious to hear about that, the things that you still put into practice now from what you've learned from the CBT and giving yourself permission to rest so that you can do things that you care about, things that you value. Can you tell us more about the key things from what you've learned from CBT that you still use the most?

Lizzie: It's a combination of things really, I use things from all of the rounds of CBT I think I've had, from the first round I still use some of the mindfulness techniques, I struggled to use those when I was really depressed. I think I was most depressed during the pandemic. I think that really, you know, everybody struggled, I think, during the pandemic but my depression got really bad and those techniques didn't work so well. But, for example, if I'm in a hospital waiting room, I will use those mindfulness techniques to try and just remind myself I'm safe. It's not that I'm going to be admitted to hospital immediately. Sometimes that's like a genuine fear that I think they're going to kidnap me. But I use those mindfulness techniques still there.

I think with the second round of CBT, when we did the narrative therapy, I think that just genuinely changed me internally in terms of the way I think about those memories, and I've also learned to give myself permission to be kind to myself. And I think that is just something that it was like a switch that, that turned on when we did the sessions. I don't know when it happened, but that switch is still on most of the time. Sometimes it turns back off again, and sometimes I have to stop. And actually either talk to a friend and they have to talk to me about some things and I'll then parrot back to them the things that I learned in CBT or sometimes it's just me quietly thinking to myself and thinking, no, it is okay for me to have time off. It's important to prioritise my body. And I'm not saying I do that all the time. I definitely don't. I still struggle with, you know, anxiety. I still have suicidal thoughts sometimes it's horrible, but I'm able to cope with those in a way that allows me to function a lot, lot better.

Helen: Thank you, Lizzie. And, if it's okay, I do want to just pick up on that. You said that you still get suicidal thoughts sometimes. Can you tell us a little bit about how you make sure that you stay safe when that happens?

Lizzie: For me, I very much don't actually want to kill myself and I never have. It's never been that I have suicidal thoughts in that way. It's that I think it's more to do with the fact that I'm exhausted with the battle going on in my mind. I'm exhausted with having to fight the negative side of my thoughts that's telling me, you know, you're useless, you're ill, you might as well give up. Those sorts of thoughts come into my mind. And my friends actually nicknamed that voice, Karen. So I apologise to anybody called Karen. it's one of those things that's picked up on the internet, but we've just called her Karen and so it's just helps me sometimes to think, Oh no, that's Karen speaking. It's not me. And so I'll sometimes have those thoughts, but now I'm at the point where I can just disregard them and they'll come in and I'll go, that's horrible. And then I'll carry on and it'll go away. And sometimes I have darker moments, but it would never get to the point where I'd actually hurt myself because I've got people I can talk to, I've got the techniques I learned in CBT to draw back on. I also have things in my life that I care about and I want to live for, and I can remind myself of those. It is difficult having physical health conditions. When you're living in pain, you're in bed for days on end, months on end. I, you know, I've had periods where I have been in bed for months on end and people listening will have had the same and it's horrible but it's just about looking at those little tiny things in a day that make the day worth living still, even if it's just having a nice cup of tea. And I think for me, those are the things that keep me going, but it's not easy and I think that's the thing with CBT and any sort of talking therapy is I don't think it's about completely eliminating any, you know, any trace of you having mental health problems. It's not that. It's about training you to live with them in a different way. And for me, I feel much more safe in my life. I feel like I can cope with those thoughts, and I've accepted that is not a nice part of me but it's something that is natural for me because of the pain I live in and because of the difficult things I've gone through and I'm not going to act on them, but they just, it's just there.

Helen: Thank you, Lizzie. And I just want to come back to Bex about that as well. And just hear what Bex is thinking about what you've just said about carrying on living with difficult days, difficult weeks, difficult months and really difficult thoughts.

Bex: Yeah, I think you've shared the kind of toll it takes to live with the extreme pain and tiredness that come with your conditions and the uncertainty and the sort of natural kind of phenomena really of living with those experiences and how you kind of navigate those really well now in terms of accepting, in terms of acknowledging what you're experiencing, but also putting them in perspective and focusing on stuff that's really important to you. And you know, that might be small things if you're really unwell, but I know from working with you from both that time and more recently that you do so well at sharing how you're feeling, at reaching out to people that you have a really positive relationship with, that you're actively managing those things so well when it is difficult and that's really fantastic to see. And it's really helpful how open you are about those things for other people who feel like that it's really valuable, thank you, Lizzie.

I guess the other thing I would say that maybe we haven't mentioned is that I've observed over time as well is the way you interact with medical professionals now. I don't know if you want to say something about that, but there's been a real difference in terms of, I guess, assertiveness or handling those relationships really well. So I don't know if that's something you wanted to reflect on.

Lizzie: Yeah, definitely, I feel like it's important to mention that actually, but I also did want to just say that you mentioned that I've been really good at reaching out and opening up to friends. And I think that is another thing that I got from CBT actually, because like I said, I didn't tell a lot of people that I was close to about what happened in the hospital and I did used to be a lot more closed off when it came to talking about my health conditions and I think I just thought I was annoying people when I talked about it, and one of the things I learned with CBT was that the people who choose to be in my life care about me, and that's why they choose to be in my life. And so they want to help me. And I was reminded that obviously I want to do that for them. So obviously why wouldn't they do that for me? And so that helped me to reach out to people. And it's not necessarily that I can always reach out. I think that's an important thing to say as well. A lot of the time, my friends are the ones that reach out to me when I'm in a difficult position. I think that's really important because sometimes when you're in the darkest sort of places, you're really not able to even see that you need that help. But I think the important thing is that if somebody in your life reaches out to you and asks you how you are, you're honest with them. And I think that's the thing that changed for me is that I used to just be like, yeah, yeah, fine, carrying on, you know, stiff upper lip type attitude. And I think it's really important to be honest and be authentic with the people in your life.

The other thing that you mentioned as well was about the health professionals. So not my proudest moment, but I did actually once punch a nurse. Not like, you know, like a proper thump, but it was a reflex reaction because I was so anxious in hospital. So she was, I think she was taking my blood or giving me an injection. And I was so anxious that my reflex was to just thump her on the arm. I felt so guilty because I've never, I'm not like that at all. I mean, hopefully you both, you've both interacted with me and you know, I'm not the sort of person to go around beating people up. So she was very professional and she just carried on completely like unfazed and I was like, I'm so sorry, I can't believe I just did that. She was like, don't worry, it happens all the time. I was like, wow, she really shouldn't have to deal with that. But I used to be so anxious around medical professionals. I didn't trust them. With that nurse it was slightly different, but I genuinely didn't trust medical professionals. I still don't to a certain degree because I've been misdiagnosed a lot. I've had lots of conversations with doctors who don't know as much about the condition as I do. I've had conversations with doctors who haven't read my notes. You know, recently I went into an investigation, it was important that they knew that I was immunocompromised, and he was like, Oh, you're not immune. You're not on any immunosuppressants are you? And I was like, Oh, only the three that I'm on. Yeah. And you know, that happens a lot. But I have learned to be more assertive in those sorts of situations. And now I'm able to communicate in a way where I can get across what I need to get across without having a huge panic attack. Because what used to happen is I used to just get completely overwhelmed and then I had to leave the room, or I just bursts into tears. And it does still happen. Even recently I've had a couple of things that happen where I get really overwhelmed, but it's nowhere near the level that it used to be. And now I've got again, another toolkit where I know what to do before an appointment. At the start of the appointment, I explain to the medical professional, you know, these are the mental health conditions I've got, I'm making you aware because this might happen. If this does happen, this is what I would like you to do and it's usually just a case of I just want them to be quiet and let me just process for a couple of minutes and then I'm usually fine. And then after the appointment as well, I've also got some things that I do afterwards to make sure that I'm as okay as I can be, but it's again, still difficult. It's not like it's taken it away and it's still something that I will always find hard and I need support with. So a lot of the time I'll have somebody come with me to appointments because I've recognised that is a need for me. And it's something that I can't do by myself, but that is part of me dealing with it. That's part of me managing it. And I think that's something that I've learned because of doing CBT and doing therapy in general. And it's changed my life. And it's helped me to get the diagnosis and also the treatments that I need. So it's been really important for my physical health as well.

Helen: Thank you very much, Lizzie. I’m thinking one of the things I would like is for people listening to hear what are the most important things that you would like them to know. And I'm going to go to Bex first. If there are people out there who are having similar experiences, whether it's long-term health conditions, whether it's having panic attacks, whether they've experienced trauma, struggling to manage what's happening to them? What are the key things that you would want people to know from what we've been talking about today, Bex?

Bex: I guess the key thing I'd want someone to know that if you're really struggling with those things, that matters and that there is support available where we can work out, you know, maybe some things can't be changed, maybe some things have to be adjusted or two, but the things that are possible to make different, maybe some ways of responding that can support you with what you're experiencing.

With trauma, I guess I'd want people to know that there are treatments that work for trauma that can make a vast difference in terms of re-experiencing and levels of anxiety associated with that past event. And I'd want people to know that they're entitled to that support and it's available for them if they want it and if they're ready for it because it might not be the right time. And that's entirely their decision. And often, you know with physical health we see quite a lot of physical health problems with people who've had chronic stress for a very long time as well and that there's an interaction there, and that we're interested to understand more.

Helen: Thank you. And Lizzie, what would your kind of key messages be, would you say?

Lizzie: I think the biggest message I want to get across is that it's not a replacement for the treatment that you'd get for your physical health conditions. It's something that can complement it and help to make life easier for you, but it's not about being something that you do instead of another treatment. And I think if you ever are in a conversation with a doctor where they suggesting that, so they're suggesting they're going to stop investigating and just send you to talking therapy, I would say it's important to advocate for yourself and say, you know, that's fine, but what's the differential diagnosis here and what else can we do to investigate what else might be going on? Or, you know, I'm happy to try that, but I would also like a plan for if this doesn't help me, what can I do after that? I think that's really important. The other thing that I would say as well is, I would say to somebody, if you are thinking about the possibility that doing CBT or some sort of talking therapy might help you, the likelihood is it probably will, because I don't think people would be considering it unless they're in the position where they probably would benefit from it.

And the other thing I would say as well is I got very lucky with having Bex as my therapist, and I think if you have started some sort of therapy or you're going to start and you don't feel like you gel or mesh with the person that you are speaking with, I think it's important to try and see if you can maybe change to somebody else, or be open with that therapist. You know, with Bex, if I hadn't have been open with the fact that I was anxious about her saying, you know, about the connection between physical and mental health, we might never have gelled, you know, that might have really stopped the relationship from progressing. I could have just never turned up to the next session if I hadn't been open about it. So I think that's the other thing is if you're feeling like something's not right, be open, and I think the vast majority of therapists go into the profession because they are genuinely caring people. I think it naturally attracts those kind of people. So the likelihood is they probably will want to try and help you and if it doesn't feel right after that, then try and find somebody else and see if it can find something that fits.

Helen: Thank you so much. I'd just like to say how much I appreciate you both coming to speak with me today. Bex and Lizzie, I'm really grateful for your input. Thank you very much indeed.

Bex: And thank you so much for having us. It's been really lovely to reflect on that, the experience together, and it was a joy to work with Lizzie.

Lizzie: Thank you so much. And yeah, I'm so grateful for honestly, having been able to have the experience and the experiences that I've had. I'm very lucky to have had the support that I've had. So thank you Bex for that. And it's great to be able to talk about it and hopefully this might help some of the people as well. So I really hope that if anybody's listening, who needs some support out there that this helps a little bit.

Helen: Thank you. So, our listeners will find more information on our show page and, I'm just going to say one more thank you to you both. Thank you both.

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