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Autonomic Dysfunction: Diagnosis and Management. Managing the psychological impact of living with PoTS and findings from research - Dr Sam Waterman



Join renowned clinical psychologist Dr. Sam Waterman, a specialist in neurorehabilitation and a leading researcher in the field of POTS (Postural Orthostatic Tachycardia Syndrome) for a discussion on the psychological impact of chronic illness. Drawing from her personal experience and extensive work, she'll explore the obstacles patients face, including delays in diagnosis, medical trauma, significant strains on personal and family life, and the role of psychological adjustments in living with chronic illness. Dr. Waterman will also delve into the challenges of navigating the unpredictability of chronic illnesses and the tools that can be helpful in managing these changes. With her expertise in this area, she will explain the importance of recognizing and treating both the physical symptoms and the mental health struggles that patients experience. This vital and insightful session is not to be missed by any medical professionals looking to deepen their understanding and improve their approach towards chronic illness.
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Dr Sam Waterman is a clinical psychologist who currently works in neurological rehabilitation. She completed her doctorate in clinical psychology in 2020, during which time she developed PoTS and quickly realised that although this research area is growing there was not a huge amount published about peoples lived experience, so she decided to investigate the experiences living with this condition for her thesis research project.

As with all chronic health conditions, receiving a diagnosis of PoTS and adjusting to the associated symptoms can be an emotionally challenging process. People may often find themselves struggling to manage unpredictable flare ups and the impact this has on connecting with the things they most value in life. There can be significant losses that come with developing a chronic illness, and psychological support can be beneficial to help people navigate this and enable them to live a meaningful life alongside the condition. This session will be thinking about ways to best support people to manage to psychological impact of living with chronic illness and strategies that may be helpful to explore.

Learning objectives

1. Understand the psychological impact of living with a chronic illness like pots, including the emotional challenges and potential medical trauma involved in the journey to diagnosis. 2. Discuss the effects of chronic illness on individuals and families, considering the financial and social strains and shifts in personal roles that may occur. 3. Explore the process of adjustment to change when living with a chronic illness, recognizing the possible feelings of isolation or uncertainty that people face during this journey. 4. Consider the relationship between chronic physical illnesses like pots and mental health conditions such as anxiety and depression, questioning the overlap as well as the delineation between them. 5. Analyze how individuals may experience grief when diagnosed with a chronic illness, considering how this affects one's sense of identity and role in their lives.
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The following transcript was generated automatically from the content and has not been checked or corrected manually.

So we'll move on now to um Doctor Sam Waterman. Um Sam is a clinical psychologist, currently working in neurorehabilitation. She completed a doctorate in clinical psychology in 2020. Um at which time she developed pots herself. Um and also realized that this is um an area of growing research. Um and there was not a, a huge amount published about people's lived experience. And in fact, Sam, I will confirm that you had the first published qualitative research in pots, which is fantastic achievement. Um So as with all chronic health conditions, receiving the diagnosis of pots and adjusted to the symptoms can be an emotionally challenging process and people often find it hard um themselves struggling to predict the unpredictability of the flare ups and the impact this has on um lots of different aspects of life. Um And there can be a a hole coming to terms with significant losses and developing um a what you value in life and taking this forward. Um So you'll be talking about um in the session I'm thinking about and talking about ways to best support people to manage the psychological impact of living with a chronic illness. And strategies that are helpful? Thank you, Sam. Can I keep one if that's ok for the side? Oh, can you hear me? Yeah. Ok. Um Thank you for that introduction. So, yeah, II am gonna talk a little bit about the psychological impact of living with it sort of applies to chronic illness broadly, but it's probably a bit more specific to pots. Um So to start with, there's a huge psychological impact of chronic illness, which I doubt is news to anyone in the room. Um One of the main things with pots specifically is the very often long and arduous and quite difficult journey to diagnosis. So I know when I did my research, which is a few years ago now, I think it was three years ago, the average time to diagnosis was seven years, which is an incredibly long time when you're living with symptoms that can be extremely debilitating and take you out of your life and your role and things like that. So often people that we see have had quite a lot of medical trauma on that journey. Um People often describe it to me. I should have said. So II work in the NHS in your rehab and I do a bit of private work with patients with pots. As far as I'm aware, I don't think there's any NHS psychology services for patients with pots. Um which is the gap. Um But yeah, I think patients often have had quite a lot of medical trauma on that journey. And they will often describe it as feeling quite ghastly and very unheard in situations where they've been presenting to GPS or other parts of the medical system. Um I the parts is obviously significantly more common in women and I think almost all of the female patients I've ever worked with have at some point been told they're anxious or hysterical or bringing these symptoms on or making them worse. Interestingly, that happens significantly less with men. Pots is a lot less common in men. But the research shows that in the men that do get it, they are very rarely diagnosed with anxiety in the women that do get it. They are almost always diagnosed with anxiety. Um And there's lots of other medical traumas that come from all the different tests and things that people have to go through. Um, and we were talking about it this morning, I think one of the things that's difficult with pots as well or with any chronic illness is if there's a lot of medical trauma wrapped up in the diagnosis, it is often something people need to work through because they need to stay connected with the medical system. So as mel was saying earlier, a lot of the medications that people are on for these conditions need to be monitored, which involves blood tests, which involves regular contact with the medical system. And if there's a lot of trauma wrapped up in that for you, that can be a very difficult thing to be going through regularly. Um So that's something that often psychology gets involved with. Um there's also a significant strain on individuals and families and this can come from loads of different areas. So there's often quite a significant financial strain of chronic illness in general. Um that can come from people not being able to work or not being able to work enough to cover their financial needs. Um It can also come with the cost of living with chronic illness. People need aids. They need access to certain diets and things like that. But it can all be more expensive than other if you, if you didn't have a chronic illness. Um there's a huge social strain as well. So as we know with pots, it predominantly affects younger people and predominantly women and it can really isolate you from your social networks so often it's people who are going to university or just starting out in their careers and they can be hit with a chronic illness that pulls them out of those situations. So they're suddenly quite ostracized from their friendship group or they can feel I've had lots of people describe it to me as I feel like I'm suddenly behind and I'm racing to catch up with people that I can't quite catch up with. Um And both of those can impact families as well. So if you've got Children that develop pots and can't go to university or can't work. It can mean that they're living with their parents for longer and there's financial and social strains of that. Um, and there's also a role related side of it and I think people's roles can shift quite a lot when they get any kind of medical diagnosis, but particularly something chronic that they are immediately told that this is something you need to learn to live with, not something that we're gonna be able to get rid of. So people's roles as a partner, as a friend, as a parent, as someone in their career can all shift quite quickly and that can be quite a lot to adjust to and work to make sense of. Um, so adjustment to change is one of the biggest parts I think of psychology work and I think it's one of the parts of chronic illness in general that's thought about perhaps a lot less and it's something we touched on this morning. Um, when we were chatting with the nurses pots isn't something that's going to kill you or shorten your life really in any way. And that can unfortunately mean that in the medical system, it's kind of seen as less important. Um, and I think the huge amount of adjustment that people have to do to make sense of this condition and all the different adaptions they have to make to different parts of their life to live well alongside it gets missed and the impact of that gets missed. And so I think sometimes that's a part of this journey that people can feel quite alone with trying to make sense of it and trying to adjust around those changes. Um, and there's a huge amount of uncertainty with pots. Um, there's a huge amount of uncertainty even getting a diagnosis of pots. We were talking this morning how often times the symptoms aren't well known and people can present to clinics thinking it's one thing and then it's something else. Um, and then even once you're diagnosed with it, depending on where you're diagnosed. If it's a specialist service, they tend to be much better. But if it's not a specialist service, sometimes the advice can be quite patchy and people can come away from appointments feeling more confused than they went in. Um, and then the uncertainty around what that's gonna look like in the future for you, how your symptoms are going to affect the things you want to do can also be quite uncertain. Um, and you can see it in kind of patient forums because you have some people that make amazing recoveries and they go on to run. I was reading somewhere recently about someone who'd done an Iron Man triathlon with pots and then you have people that can't go for walks and that spectrum can be very difficult if you're a patient that's newly diagnosed, trying to understand what is this gonna mean for me and what's my life gonna look like? And kind of along that theme you've got symptom fluctuations. And I think with pots especially, or any condition actually where there's a lot of lifestyle advice that you can be given. It can feel like when your symptoms fluctuate as they probably will because these conditions do fluctuate. There can be quite a quick turn on yourself to, I must have done something wrong. I mustn't have used my compression enough. I mustn't have drunk enough water and sometimes that's the case and sometimes it isn't. Sometimes your condition would have flared up completely, irrespective of you being as perfect as you can be with everything you need to do to manage it. And I think the psychological impact of that can then be very difficult because I see a lot where people can blame themselves a lot when they have flare ups and can spend a lot of time in what we'd called sort of a rumination pattern thinking over what might have got wrong. What could I have done differently? Was it this was it that? And actually, we might never know and you can get really stuck in that and it stops you kind of managing the present moment and how you move forward from it. Um And then I've added anxiety and depression. I always feel like I have the caveat when I do any talk about pots. Cos I'm a psychologist in this space and I think I make people nervous. Um like pots is not a mental health condition. They are very different things. They can be comorbid. So you can have pots and you can have anxiety and depression and you can have pots and have anxiety and depression because you have pots. Um And that's the same with all chronic illnesses. They're a huge not able to engage in conversations. It's natural to feel a bit anxious. So I think it's a very tricky space in pots cos like I said, most women who have been diagnosed with it have at some point been told that they either have anxiety, it's not pots or they have anxiety and they're causing pots and that's really, really challenging. And I think as psychologists in this space, we kind of come in and feel like we're trying to undo all of that because they're very different things, but they're both equally important and you can need help with both of them in the same way. And then the last thing I just put on there is grief which I think is again very relevant to any kind of chronic illness. Any kind of medical event is the grief that comes from that and the losses that come from this. Can I think like I've said, the loss of role can be really challenging. The loss of social spaces can be very challenging. I know I've worked with lots of patients who were very physically active and are not able to do that and that was their way of managing. So there's a lot of grief and identity change that can come alongside these diagnoses. And I'll touch on grief a little bit more later because there's a model that I find really helpful with patients. But just thinking a little bit about I was gonna go through kind of risk factors and actually, oh, I haven't changed that slide, risk factors and also protective factors for people's wellbeing. Cos I think if you're working with these patients, it's really helpful to be aware of what might make it more likely that they're going to be suffering and struggling psychologically and then what can actually protect them from that. Um One of the biggest ones is a lack of social support. So people feeling that they don't have people to turn to and talk to you about things, but also that they don't have people that understand from people that immediately understand what you're going through and can make sense of that with you. Um Another thing though is personal beliefs about health and what it means for you. So I only really work with long term conditions in all of the different practices that I do. And we often say actually long term conditions don't fit with our cultural perception of health and wellbeing. So we understand that you get ill, you go to the doctor, they give you medication or treatment of some kind and then you get better. So then people that are living with chronic and long term conditions, they don't fit that mold. And so often people will say, oh, I was speaking with family and they're like, are you well now, are you better? Is it fixed? And it's quite difficult when you're living with a condition that changes over time? Because you could have periods where you are better and you are doing OK, and then you can have periods where you become quite unwell again. Um So it's family and personal beliefs around that. Um And similarly, pots is often comorbid with um things like EDS that can be genetic. So there's often family culture around health conditions anyway, and what people's perceptions of those are, so it can sort of be a risk factor, it can be a protective factor as well. But I think more often than not, it can be a challenge if you've got people that are challenging the idea of chronic illness and what that looks like and similarly kind of family interaction patterns. So whether this is someone in their closest system around them is being understood and believed and have people validating them versus if it's someone where that interaction pattern isn't there and they're not being met with that sense of understanding that can be extremely challenging, particularly if it's younger people still living at home with parents. Um So it's just checking in with that and seeing actually is this a social system that all have a belief about this condition that helps and makes sense for this person. And then poor doctor patient communication is a huge risk factor, I think. Um, and it's, again, this is similar across all chronic illnesses, but it's making sure when people are diagnosed with pots, they understand what that means. Um, and what's going to be helpful for them, what their future might look like and what that can mean. And I think from both the talks this morning, it's making sure that it's the right diagnosis and it's been made in the right way and it makes sense to that person. Um, because I think that can be very, very tricky otherwise and can make things a bit more complicated further down the line and then in terms of protective factors, um, there's quite a lot optimism is a huge protective factor which probably isn't very surprising. Um I think there's a significant difference between toxic positivity and optimism. I see them as very different things. I think optimism around chronic health can be a very realistic perception that certain areas of your life are gonna be more difficult or certain things are gonna be more challenging. But you can still have an optimism around that toxic positivity tends to tip into everything's absolutely fine and that's what we're gonna talk about and that can be quite challenging. Um But optimism in general has been shown time and time and again, in pots and in other chronic illnesses to be quite a protective factor. Um and similarly self esteem. So having a higher self esteem can be really protective if you're diagnosed with any kind of health condition. Um with pots in particular, it can be challenging because of the arduous process to diagnosis. Sometimes people have, have their self esteem kind of chipped away at a little bit if you're constantly feeling like you're not understood. And I've had lots of patients where they say actually I was presenting at hospital and people were saying that I was kind of making it up or I was anxious, you then start to question yourself. And so I've had lots of patients say, I don't know if I'm just being dramatic or if I am actually having a bad day. Um and that can really start to impact people's self esteem. So I think the importance of getting diagnosed quickly cannot be sort of, we can't underestimate that at all. And I think the longer it's taken someone to get diagnosed, it's important to check in with. Actually, how are they doing? How are they managing with that process? In terms of psychology support, these are kind of the areas that we work to try and build, particularly things like self esteem. So sometimes if you're working with someone and you notice that's something they're really struggling with, it might be worth a referral to psychology. Also locus of control So people feeling that they have control over their condition is a protective factor that helps them manage it better and it can be quite handy. Then if it's a condition where there's lots of lifestyle factors, people can put into place because it can give people that sense of control. I'm keeping an eye on my fluid intake or I'm keeping an eye on my salt intake. I'm wearing compression all the way up to here. Um So being aware of things that you can do to manage, it can be helpful. Um But it's just kind of as I mentioned on the previous side, making sure that doesn't tip into if I don't do this perfectly, I've failed or if I have a flare up, even though I've done this perfectly, I've done something wrong. So it's, yeah, it's a, it's a bit of a balance with locus of control, but generally research into chronic illness in general suggests that a higher locus of control. So thinking that you have control over managing your condition is helpful. Um Social support is helpful. It makes sense that a lack of social support is a risk factor. So social support is huge protective. Um And that can be anything from family to chosen family to strangers on the internet that understand what you're going through. Um I think there's been, I don't think there's been research specifically into pots in terms of forums and social support online, but I know there has been in other illnesses that suggest, but they can be strangers that you've never met and they can still give you incredible social support that really supports people through tough times. So that can be really helpful. Um And as I've said, probably multiple times already, a quick diagnosis helps if you're someone that's had years of feeling that nobody understands what you're going through or your symptoms have been minimized or you've had to minimize them because you're trying to get on with your life. It's, it just chips away at you and it's exhausting and it's very, very difficult to manage. So the quicker the diagnosis, the quicker you get treatment, the quicker you can start engaging back in the things that matter most to you, the better. Um and a good understanding of the illness in general. I think understanding the medication side of it is really important and how that can help but also understanding what your symptoms can mean. So we touched on it a bit earlier, but there's a huge crossover between anxiety and pot symptoms. That doesn't mean they're the same thing. It doesn't mean that you're just anxious, but they both affect your parasympathetic nervous system. So, a good understanding and I think you can get there. I know I've worked with patients on this of ok. Am I anxious at the moment or is this a symptom flare up? Do I need to do some counter maneuvers? Do I need to sit down or do I need to do some breathing exercises? Can I do both and see where we end up? So, having a good understanding of the physiology of the condition, how you can manage it and also how you can look after yourself through. It is really important. Um And this is just a diagram that I tend to go through with patients. So it's this idea that we all have our coping line and which is that line across the middle and life events can happen and they always do life is tricky and hard and it throws us around quite a lot. And as long as you're below your coping line, people generally say, you know what I can manage, I've got enough capacity to do this, I'm doing ok. But the more life events that happen and the closer you get to tipping above your coping line, the harder things become to manage. And once you add a chronic illness in people's trajectory of jumping above their coping line gets much sharper, it happens much quicker. So oftentimes in psychology, we get people when they're right at the end of there and they feel like they're miles above their coping line and everything is really tricky. And the example I often give is if you say if you're below your coping line and I'm walking around making my breakfast and I chuck over some milk by accident, I might be like, oh, ok. That's really annoying, but I can clean that up. I might be five minutes late to what I'm doing. If you're above it, you fall, the milk falls over and it can feel catastrophic. And you can see people have these big, big, big reactions and they'll come and to me in sessions and be like, I have no idea why that was the thing that tip me over the edge. And it can just sometimes mean that you've reached your threshold and you just don't have the capacity anymore. So a lot of time in psychology sessions, we're working on those arrows. So how we get you back down below your coping nine, how we bring your capacity back up so that you can manage all the stuff that life throws at you alongside a condition that requires quite a lot of effort. How am I doing the time? Ok. Um So this is just a quick model that I wanted to talk about. Um People may well be familiar with the stages of grief, the Claros model, which is very, very old now and there's lots of debate about how useful it is. Um But it's the five models of grief. This is one that's been specifically designed and modeled on people with chronic conditions and, and it's decided that so I drew this out and I realize it has arrows everywhere. So it looks a bit overwhelming. But the idea is that you have all these different stages that you go through when you receive a diagnosis of something chronic. And this is by no means linear. It's not something that people. So we previously used to thought, think you went like Nile pleading anger anxiety. It doesn't work like that. You jump around all over the place at different times. But I think sometimes I'll talk this through with patients. And people often say to me, actually, this makes sense. This is really helpful to understand why I'm feeling all these different ways. And sometimes you can be kind of moving towards the acceptance side of things and then something can happen and it throws you right back into feeling really, really angry. So it's just helpful to think about the different stages. And then on the side here, the left hand side, they're the ones that were kind of added and incorporated for chronic illness, particularly the loss of self and confusion. So that's a lot of what I've been talking about people's role changes and your ability to engage in your values and things that matter can be shifted. And I often see patients come to me and they're like, I don't know who I am anymore. I don't know who I am with this new version of me that I don't recognize. And so sometimes it's working on people to help them find their sense of self again and find what matters, even if it means you're having to engage in things that you love in a slightly different way. Um And similarly, there's this often reevaluation of life roles and goals. Um And that can often come without people wanting it to. I think when you go through any kind of medical crisis or medical situation, it feels like someone's kind of shaken up the little snow globe of your life and everything's settled in a different place. And people will say, actually, I used to think that my job and earning money and a career was the most important thing. And now I've had this, I don't think that matters at all and I want to focus on my family and building connection and things like that. So it's a lot of what we do in psychology and what can be really helpful with patients is helping them think about what matters to you the most. Where do your values sit, what feels important for you to be connecting with now and how can we do that even if it's in a different way? Um And then acceptance is always on there. So I um um don't tend to practice CBT very much which is a well known psychological thing. I practice something called acceptance and commitment therapy or it's commonly termed act and I get loads of patients being like acceptance is a horrible word. Um So I don't use it very much anymore. People say actually tolerance is better cos I don't want to accept this condition that I didn't want don't like, but I'll tolerate it being there so often when we are working in therapy, we're aiming for a tolerance of actually, can you live alongside this and kind of accept that it's there and make adjustments. So, yeah, I leave acceptance on there because it's part of the model. But I appreciate that lots of people find that quite an uncomfortable thing to think about. Um So sorry, this is quite a busy slide, but it's just thinking a little bit about some strategies to, to support, to support people's emotional wellbeing. Um Firstly, psychological therapy, I'm acutely aware and even more. So after chatting with the nurses this morning, that access to that is really difficult in arrhythmia services in general. And I think access across the board is quite hard. But if it's an option, it's a great one. I mean, I'm really biased but I think it's quite good. Um An act is probably the most common s something called compassion focused therapy can also be helpful, particularly if it's someone who is struggling with that sense of kind of blame and feeling that they need to be managing this better and they should be doing things better. Um Mindfulness is also something that's really, really helpful with, with pots in particular because of the symptom presentation. Um So it's this idea of being present in the moment and not going too far into the past, too far into the future. I often say to patients, anxiety, hates, hates keeping you in the present. It loves being in the past and kind of ruminating on everything you did and could have done differently. And then it loves throwing you into the future on what could happen and what you need to worry about now. But it hates being in the present. It can't thrive here so often when we're in therapy with patients, we use a lot of mindfulness strategies that just pull you back into the here and now. And it can be really helpful when patients are experiencing symptom flare ups and they're struggling with you right now. Um And it's something, yeah, I use a lot with patients and then also connecting with values. So values is something we use a lot in act and I always describe them as sort of your horizon. It's where you're kind of aiming for. Um they're not like a goal. It isn't something you can get to and be like, yeah, take that off. They're something you're constantly working towards and they give your life a sense of meaning. So when you're in line with your values, you often feel you're kind of being the type of person you want to be, your life is going the way you want it to go. You're proud of that. If you're really far away from your values, you can kind of feel the opposite. So it's often coming back and saying what, what matters to you the most. How can we help you connect with that? Whether that's nature or creativity, sometimes it's family, sometimes it's career, it's all those different things. How can we help you connect with that? Even if you might have to do it slightly differently now. Um And then the last thing I put on there is Ace. So when using this acronym to balance it out. So are you doing things that I don't know if you can read it, but basically it's achieve connect and enjoy. So when you're planning your activities of the week, have you got enough things that give you a sense of achievement? Have you got enough things that help you connect with others? Have you got enough things that you enjoy? Cos if you're doing all of one of them so often, if you've got someone who's just doing stuff that gives them a sense of achievement, actually, that's not often what they enjoy and they're coming out and being like, yeah, I feel really driven, but I'm not very happy. Um And similarly, if they're just doing stuff that they enjoy, sometimes they can feel that they're not connecting with that sense of drive. So balancing out between those three can be really helpful to plan it out. Oh Gosh, ok. Running out of time. Um I'm nearly done. Um So I just wanted to, oh put this up. This is the Serenity poem which people may know because Alcoholics Anonymous stole it. Um So it's more well known from that, but we use it an awful lot in acts. And it's this idea of grant me the serenity to accept the things I can't change, the courage to change the things I can and the wisdom to know the difference. And it's particularly important I think with chronic illness to know the difference between the two and understand which parts of this are related to the condition that I don't have control over. And I have to find a way of letting go of or accepting or tolerating on which parts of this can I change? Can I affect change? And how can I do that? Um Yeah, and I always say to people about half of therapy is just trying to know the difference. Um These are just, oh gosh, sorry, I'm really bad at this double thing. These are just some recent research stuff because I know I said I'd mention a bit about research. So there's not been tons of psychology kind of research into pots. I think it's hugely increasing though. So you can see these are all in the last few years. Um And I won't go through all of them, but they're really worth looking up. And I know that there's ongoing research. There's Helen's doing research, there's two other doctoral pieces that I know of that are both looking at pots and kind of living alongside it. So hopefully it's something that we're gaining a bit more understanding of actually what it's like to live with this condition and how we can help people. Um I'm nearly done. Sorry, there isn't time to go through these, but these are just some strategies. But the one thing I just wanted to quickly say is, oh dear me, um sources of support. So um NHS you can visit your GP and you can self refer to talking therapies everywhere privately. If you've got patients that want to access it privately, those three websites are probably the best and then I always finish talks with Samaritan Shout. And in case of emergency, if you've got patients who are really, really worried about, these are the best places that they can get. Support. Shout is a text service. So I know sometimes people don't want to actually speak to someone. So shouts, text. Thank you.