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We've also got shorter takeaways from episodes over on the blog, plus a whole range of free downloadable resources on our website, including a guide for family and friends to understand neurodivergence and a content toolkit that helps you when going through all of our juicy content. So whether you're looking to go deeper or just want something practical, there's plenty to explore. You can find everything at andywomenpod.com. Alrighty, let's get back to the episode. The neurodivergent women podcast acknowledges the traditional owners of country throughout Australia and acknowledges their continuing connection to land, waters and community. We pay our respects to the people and to the elders past and present. Hello, this is the neurodivergent woman podcast. I'm your host, Monique Mitchellson and I'm a neurodivergent clinical psychologist. And I'm your sometimes host, Michelle Levo. I'm a neuro typical clinical neuropsychologist. Michelle and I met at work and bonded over a shared love of feminism and yoga. We saw the need to provide a free resource to adult neurodivergent women. And so the neurodivergent woman podcast was born. This is a podcast where we center and showcase neurodivergent women from all walks of life, bringing clinical expertise and lived experience to the topics we explore. Covering autism to ADHD and everything in between, we aim to educate and inspire women who think differently. On this week's episode, I'm really excited to have not one, but two amazing guests to chat with. Clinical psychologist Bianca Cumpfett and specialist GP Dr Megan Thomas. We're having them on board today to chat with us about Ella's Damloss Syndrome or EDS, Postural Orthostatic Tachocardiocindrome, POTS and MASS Cell Activation Disorder. MCAS and CAS. So I'll start by introducing Bianca. Bianca is a Melbourne-based neurodivergent clinical psychologist and is the director of Cumpfett Psychology, a telehealth practice focusing on chronic illness and neurodivergence. She's also the vice president of the Australian Psychological Society and Co-Chair of the Australian EDS and HSD Network, hypermobility spectrum disorder. Bianca's expertise lies in the intersection between neurodivergence and chronic illnesses, such as EDS, POTS and MASS. Drawing from both her professional and lived experience, Bianca is a passionate, advocate and educator. Welcome Bianca. Hello, thanks for having me. So welcome, very excited to deep dive into this. We'll also be chatting with Dr. Megan Thomas today. Megan is a queer, disabled neurodivergent doctor with lived experience of EDS, POTS, M-CAS and related conditions. She is a GP specialist and one of the founding directors of Connected Health Alliance, an EDS core network of excellence and health promotion charity working to improve the lives of hypermobile humans through the provision of interdisciplinary healthcare, clinician, education and research. Megan is a passionate advocate of holistic, trauma-informed, person-centered care that is affirming for people of all neurotypes, identities and experiences. It's so great to have you on, Megan. So great to be here. Thank you so much. We're very excited to talk about all of the things today. Yay! This is really, yeah, such an interesting topic and I'm so glad to have the both of you on to share your wisdom and expertise in this. And I think it's fantastic that we have guests on with lived experience of both being neurodivergent and living with chronic illnesses that we are going to deep dive further into. So let's start with you Bianca. What does neurodivergence mean to you? I love this question and I've been pondering about it every episode you've had, how it is. I think for me it's really hard to summarize because it really, I feel like it's everything to me. It's part of my identity. It's who I am as a person. It's how I interact and see the world. It's also about community and neurokin and finding amazing people to connect with. And I think through that process as well, helping me understand myself and accept myself for who I am and knowing that I'm not too much or I'm not lazy or weird and living a full and rich life. I love that answer. Thank you for sharing with us. And I think to the fact that you're in leadership positions and openly neurodivergent, it means so much to so many of us, particularly a lot of the neurodivergence psychologists within our community. Yeah, just want to emphasize that having that representation just means a lot. Thanks, Nick. Yeah, it's really important, I think, for us to be able to see others in the space with lived experience to know it's possible and to support each other as well. Definitely. So, over to you, Megan, what does neurodivergence mean to you? Very a lot of similarities with Bianca and I also think it is a really complex and really personal thing. I think for myself what neurodivergence has meant has changed and evolved quite dramatically over my lifetime. And we're going to talk a little bit more about being late identified in a moment. But I myself have only found out that I was neurodivergent in the last year. And my first introduction to neurodivergence was as a med student. And you know, when I went through medical school and to be honest, probably still now, it's quite, you know, it is taught to you from quite pathologizing framework. So I was introduced to neurodivergence from the medical model, which is so focused on deficit and dysfunction and disorder. And it wasn't until I guess I started working in clinical work and I got to connect with a lot of neurodivergent people, especially in the neuro queer community that I saw myself identifying with that. But it took a lot. It took me a long time. And actually it was Bianca that helped me a lot in the process of discovering my neurodivergence. So we met almost exactly a year ago. It's through our work with EDS and our networks of excellence. And we were just chatting about neurodivergence being something that's really common in, you know, our chronic illness community, which is obviously what we're here to chat about today. And I was like, oh, you know, I think I might be neurodivergent, but I don't really fit in any of these boxes. That's really part of the broader neurodivergent under sits down at that umbrella as well. So I'm like, oh, maybe I'm just a complex trauma. And Bianca very kindly said to me, would you like my advice or would you like my opinion? And I was like, yeah, sure. I'd love your opinion. You know, very much a specialist to this space. And she's like, well, I would be willing to bet money on the fact that you're autistic and ADHD and gifted and probably twice exceptional. And here's what that means. And, you know, the reason that you don't feel like you fit in a box is that already HD and, you know, how that looks in AFAB people and gifted people and all those things is, it's really quite different to what you're, especially what I'm taught in the medical model and what we've seen. So that changed that changed my life. I'm so, so grateful for that. A crown to the autism theory or to the very. And things have changed a lot for me. It's been overall a really amazing experience. And I guess long story short, the biggest kind of feeling that comes up for me now when I reflect on that question is freedom and authenticity and being able to be yourself. And like the community as well, like you can mention, neurocarn, finding a space where you are free just to be who you are and mask and to drop all of those kind of neuro typical and able body, like expectations that people have of you. So, yeah, I think I guess freedom is my, is my overall answer and authenticity. Yeah. I love that so much. Freedom is one of my top values. So really resonate with art. Yeah, that's awesome. Yes.
so glad that you're here with us on your late identification journey. Thank you. So I'd love to explore a bit more before we deep dive into the health topics that we're going to talk about today. But what has it been like for both of you being late diagnosed or autistic and ADHD and also living and working with multiple chronic conditions? Because I feel like there is just so much of a co-occurrence of chronic health conditions and particularly in women and those assigned female at birth who are autistic and ADHD. But it's something that I find isn't really talked about or acknowledged as much particularly from like the psychology point of view because we mainly do focus on mental health and don't sort of ask about or deep dive into, yeah like what's it like living with a different brain and also a different body, yeah. Well I think it's there's pros and cons to it. I might start with like a positive I guess which I think it's just in terms of being late diagnosed it's I'm just grateful that I am identified. Like Megan said it's so life-changing and there is that sense of freedom. I think that finally understanding myself is just wild. It's so it's so important and beautiful. I'm so grateful for that. I think you know of course there's a lot of grief around that. I'm not knowing sooner but at the same time I think having grown up in the 90s you know I think that there would have been a unique other set of issues and difficulties had I been identified as a child. A lot more stigma as Megan said you know we really learnt from a medical pathologizing model. So I think that also would be difficult to grow up in those times being identified. So I think for me personally I've sort of arrived at I'm grateful that it's happened when it's happened and I feel like that's happened at the right timing for me personally of course. I think though living in a world that's not designed for us is really difficult both from a neurodivergence point of view but also a physical disability point of view. Both Megan and I are ambulance wheelchair users and when you use a wheelchair you realize how inaccessible the world is and it's it's quite crazy actually and I think as well you then throwing the sensory inaccessibility as well being autistic and that's really really difficult. So I think though being a practitioner in this space has helped me really process a lot of those emotions you know being exposed other people in our community and it's helped me to feel not so alone actually having clients in this space and I've learnt so much my clients and they've really helped me in my own healing inadvertently as well. So I think as well now that whenever something new comes up for me medically like I have this really weird train of thought which is okay great like a new thing that I can apply to my work this is going to be so helpful for my clients. Bit of an adaptive coping strategy maybe but like really or becomes a new specialist or you know so it's kind of I guess I say it with a bit of a humorous lens now and that's the way of coping as well but I think that lived experience is so valuable to the work that we do and it massively helps understand our clients and also helps them to feel like we really get it. Yeah absolutely I think you know when you have the combination of lived experience of neurotype but then also lived experience of chronic illness you know I do think that brings a special lens that you really work with with people and when you've experienced chronic illness whether it's chronic pain fatigue or to immune disease issues you do have a deep empathy for other people who are also experiencing those things and I know as humans we can empathise with things we haven't personally experienced but it's really different when you've been through it yourself you really get it and when you're interacting with other people who get it you you can tell that they really get it and you obviously wish that neither of you were suffering you know but it is nice you know to know that you don't have to explain things or that you won't be dismissed or disbelieved because the other person knows what it's like to try to function you know whilst experiencing what's a different physical symptoms. Yeah I actually echo so much of that and being getting to be a lived experience clinician is such a privilege too and I know that I would have loved to have somebody that understood what I was going through you know when I was 14 and I mean obviously people with EDS and all of these conditions will often have symptoms their whole life it's quite common to for things to go downhill at different points and for me I've become significantly stable from probably the age of 14 and that what you've already highlighted kind of misdiagnosis and gaslighting and things that we experience is something that I had my whole life so I spent you know 20 years just thinking that basically that I was crazy I was told it was all in my head and it was all you know trauma and I just spent most of my life thinking I was a bit of a shit person essentially and comparing myself to those that were neurotypical and able-bodied and not knowing what was that I couldn't do what everybody else could do and that is really tough and I think that you know there's so much I could talk on around those things but when we do see our clients I mean most people are late identified that I'm working with late identified in their neurodivergence and their chronic illness so so much of my conversation when I'm sitting with people is actually unpacking that journey and how life changing and kind of you know everything is turned upside down and you have to reevaluate everything you thought about yourself as a person everything that you knew about who you were and your relationship with the world and how you've moved through the world and it's absolutely annihilating so being able to understand that on such a deep level is so beautiful and like you know you guys have both mentioned learning so much from our clients as well I find so much joy and so much meaning in what I do and I feel incredibly grateful that I get to go to work and do my special interest every day and just hang out with amazing people and have these such deep and meaningful connections it's really beautiful for me too and I guess I don't you know Bianca makes a really amazing point as well around if we were identified in the 90s that would have been a whole different set of challenges and I guess I've kind of found myself now in a position where I don't really know who I would be if I hadn't gone through what I did and I feel so privileged to be where I am now that I guess in terms of of what that was like too and what it is that you know I hear echoed so much with my clients all my patients is there's that healing and that joy and that freedom that I mentioned before as well in being like this is what neurodivergists is for me now but again which Bianca did mention to grief and anger and mostly for me a really big part was grieving that loss of relationship with myself where I did spend my whole life being so self-critical so self-critical of myself for being flat on the couch after working and not being able to do everything else I guess I saw everyone else so self-critical of my like executive function and my spiky profile and be like how can I be a doctor and not be able to feed myself like up and just being able to reflect now and you know as I get to reconnect with myself and find myself compassion and understand who I am which is deeply profound and beautiful I have so much grief for the fact that I lost the first 30 something years of my life to hating myself and who I was and again when you are without just on the chronic illness perspectives when you're going to medical professionals and you're saying you know this is what's happening in my body this is what I'm experiencing and you're being told no you're wrong there's nothing wrong or it's just anxiety or it's just in your head or it's your trauma you lose a sense of trust in your own internal wisdom and your intuition and your interception and your feeling of self-faculty so that's amazing to be able to start to trust again and to feel safe in your own body because that is absolutely taken away from you and then there's the anger of the people who did that and everything that you missed out and I guess the one other thing overall very positive but the one thing that I think I the one thing that I again have lost and I hear patients saying a lot so I thought it was kind of important to note was that while when you are unidentified in your new divergence and your chronic illness there's so much difficulty with that it's so much difficulty even once you're identified but you know I mentioned that self-critical self-hate that kind of framework of blaming yourself there is still this hope that you hold on to that one day it'll be better and if I just go to therapy I keep going to therapy every week that maybe eventually I'm just going to be quote unquote a normal person and I'm going to be able to be like everyone else and do everything that everyone else does and when you become identified in your neurodivergence or your chronic illness that disappears and you realize that fuck I'm actually not just going to be a normal person this is something I'm going to have to balance my whole life so while there's a lot of freedom I guess is also that loss of
that little bit of hope that one day will be normal. But again saying that we do learn, we do learn how to cope and manage these things and we do get to a better level of functioning when we understand ourselves. It's just, it's a lot, it's messy. - Yeah, absolutely. And I think there's so much richness there to unpack and so many layers of things to unpack for people. I think the fact that all three of us on this podcast are neurodivergent, like diagnosed and like diagnosed with a lot of our chronic illnesses. There's that intersection of medical sexism, which Michelle and I have rented about on this podcast many, many times. And it's something that unfortunately we see really echoed in the population that we work with. And I do wonder, I'd love to see some research and more focus on particularly autistic and ADHD women and those who were assigned female at birth, but are non-binary or trans. If we were earlier diagnosed and actually supported and accommodated rather than given therapies to try and fix and cure us and force us to be at school at a neurotypical pace of five days a week, which is impossible for a lot of us who are neurodivergent and chronically ill and then unifool time working as a neurotypical person, five days a week full time, that pace of life. I do wonder if there's a relationship between just those stresses and the development of chronic illnesses, chronic pain, chronic fatigue because a lot of the research that we have is links, being neurodivergent and particularly being female or a phab with these chronic illnesses and some of them are genetic, some of them are not. But yeah, we don't have a lot yet and I'd love to see what's that link because there has been a piece of research come out in the past couple of years looking at women and a phab autistic and ADHD people who were diagnosed had much higher levels of co-occurring mental health issues and diagnoses across their lifetime than men and a-map who were late diagnosed. And we don't have that information for the chronic health condition part of things. - Yeah, I think that's such a good point, Minic. And it makes sense if you think about it, whilst we don't have the research necessarily yet to back that up, we've got peripheral research. So things like we know stress, it impacts and is a predictive variable for developing conditions like ME/CFS and potentially as well long COVID and things like that. And we know that these chronic illnesses are more common in females and a phab focus. So there's definitely links there that we see in the research and I think anecdotally both the meaghan and I am meaghan's nodding. But you can't see, would agree that we see this in our population as well anecdotally. I think too, I would just like to point out something we haven't mentioned as practitioners, which is that whilst we're talking about the positives and more of the emotional journey, that from a physical health perspective, it is really difficult and that the rates of burnout as professionals with these conditions is extremely high. And I think all three of us have experienced that if not currently experiencing some level of that. So I just wanted to, I guess, point that out because I don't want listeners to think that we're sitting here and have this amazing life and we're fully functioning and working five days a week is absolutely not the case at all. We are struggling through life, fumbling through with each other's support and doing the absolute best we can. But what you don't see behind the scenes is as meaghan said, we don't feed ourselves, we can't do our activities of daily living like our work is our life and that's all we've got capacity for. So it is really genuinely a struggle but equally we love it and this is why we continue and choose to do it. - Yes, 100% agree with everything you've both just said and it is a struggle and I feel like I've been in some constant level of burnout since I was 14 when I hit that level when I just became, essentially I have been disabled since then and being not identified and understanding what I was dealing with like Manique just said, being forced to go to school full time, uni full time, work full time, especially in medicine. There is no option to do things part time. So I've had severe burnout multiple times in my life and that's another part of the anger that comes with being later identified is knowing that if things had been treated differently I wouldn't have been as sick as I was and I wouldn't have irreversibly lost function that I have and I wouldn't have developed a whole lot of the quote unquote related conditions that we just bucket with the EDS. People with EDS don't necessarily need to come with 20 other conditions but it's because of the stress that we go through and we'll unpack this a lot later how that unfolds but I needed extra years in school because of burnout, extra years in university because of burnout and as soon as I was able to not work full time I worked less and less and less until I completely crashed and had to leave clinical work for three years and now I work very part time and those of you know you that know me online or see me as patients will know that I have periods of time where I'm off sick and you know it is really tough and yeah all of those things and the medical sexism and the things that we experience definitely impact that and we do struggle through but again like you know Bianca mentioned we love it and that's why we're here and I guess that's why I think all of us are so open in our experiences and identities as well is because we want people to be seen and we want people not to go through what we went through and we want people to be identified earlier so that we can optimize them and support them in a neuro-affirming way in a disability and a queer and all the things a farming way so that people don't have to go through what we've gone through and so that people can have a better quality alive - My draw [laughter] - Okay so one last thing I want to bring up before we move on to diving into you know what is Ellis Danlos, POTS and MCAS I just want to acknowledge as well that actually being neurodivergent in a neuro-typical world and chronically ill is very expensive yeah like I've been very open on the podcast and speaking about my own journey you know like I hit chronic illness at the age of 23 while doing my masters of clinical psychology and burned out and had to take an extra year to do that but I've only worked full time about two years of my life you know and as I'm getting older and experiencing more chronic illness that capacity is dropping and yeah just so many doctor's appointments I think I've got like six specialists you know that I'm juggling medications, electrolytes, compression gear you know special chairs that you sit in, yeah trying to juggle that all those costs of being chronically ill and the cost of not being able to work full time does add up throughout your life so I just really want to acknowledge that for people sometimes whilst we love our work it can feel like you're going to work to try to pay for all your medical bills to be honest at times and yeah getting a lot of joy and meaning out of working with other people working this path but it's not easy it's not easy and one thing I love about being able to be in community you know we went to altogether to the Ella's down lost global congress that was in Brisbane earlier this year and I got to spend you know a few days with you and a bunch of other amazing people and you know being able to just you know check in and go hey how you going actually I feel like shit I've got all this pain in my back I feel like I need to lie down I've got brain fog like actually being able to be real and be authentic with other people you know everyone was at the table taking their electrolytes and their salt shots people were elevating their legs it was just really wonderful to be able to be with other people who are normalising what it's like to live with chronic illness so it's deep dive time officially let's talk about Ella's down loss or EBS pots, postural orthostatic tachycardia syndrome and MCAS mast cell activation syndrome what are these conditions okay so this is very hard to distill into a few simple lines they are themselves all very complex conditions but the three of them and why we're talking about the three of them together is that they occur very commonly and we often refer to them as the trifecta they occur commonly together and they also occur commonly with neurodivergence which is obviously why we're here and Bianco will expand on that aspect in a little moment but in terms of just starting with EBS, Ella's down loss syndrome, EBS itself is actually a group of conditions so there's 14 different types of EBS
and they are what we call heritable, connective tissue disorders. So, connective tissue is essentially the glue that holds our body together and that's present in all of our cells. And heritable means that it's passed down from our biological parents. And what it is that causes EDS is genetic changes in the way we make our connective tissue. So, genetic changes are defects in our DNA. DNA is responsible for making everything in our body. So, Bianca has a really good way of describing this as like a recipe. Just to still be an analogy is that making a cake, if we were to do that, our DNA and our genetics would be our recipe. And when we get to our part on making collagen and connective tissue, where we needed to use sugar for our cake, we use salt. So, we still in the end get a cake, but we get a cake that's not quite right. And maybe doesn't taste particularly good and doesn't rise as well as it should. So, as humans with EDS, we do have connective tissue. We do have collagen. It's not a deficit in collagen or connective tissue, but it's just that it's not made quite right. And in terms of the groups of EDS, for 13 of those, we have identified the genetic cause. But for the most common type, hypermobile EDS, so-called HDS or heads, for short, we actually don't know in full what the underlying genetic cause is for that. So, for hypermobile EDS, which is the vast majority of cases, 90 plus percent of all EDS, we use a clinical diagnostic criteria. And for that reason as well, it's often very underdiagnosed because we don't have that simple blood test marker that can pick it up. And for many reasons, which will unpack a bit later, it's not picked up in a lot of people. But we do have a clinical criteria for EDS that any doctor can diagnose with. And that looks at generalized hypermobility, also associated signs and symptoms, and exclusion of any other kind of genetic or autoimmune conditions that might account for those symptoms. And so, when people think about EDS or heads or high mobility, what most people think about is just the high mobility side of things, so being a bit bendy, having joints that move too much, having pain, having stretchy skin. But because connective tissue is actually everywhere in our body and all that organs and all our systems, what we experience, what we can experience with EDS is symptoms right across the board. So, if we call it multi-systemic, in multi-systems in our body, and it can look very different, which is another reason why it can be hard for clinicians to identify. So, there's a comment saying that people use that is if you can't connect the issues, think connective tissues. So, that's a really important one that I would like to highlight for people and clinicians. So, I guess if people are thinking along the lines of, you know, maybe I am hypermobile, what might that look like? I kind of expand on this a bit more with pots and MCAS as well, but looking at the hypermobile side of things specifically, there's something called a bite-and-score, which people can do if they Google quite easily to have a look at some of the joints. There are some limitations with that in that it really only looks at four, five joints in the body. So, some people are hypermobile but won't score highly on that. So, there's also a questionnaire called the Hakein Five that's been developed to try to identify people who might be hypermobile. Some of the questions there are if you now or could ever place your hands flat on the floor without bending your knees, that would be an indication of hypermobility. If you can now or ever could bend your thumb to touch your forearm, if you as a child would do the, you know, funny party tricks and amuse your friends or can taught your body, that's the third question. If you're as a child or a teenager, dislocated your kneecap or shoulder on more than one occasion, or if you consider yourself to be double-jointed, which is essentially another way of saying hypermobile, they're the kind of five areas that are used to identify people. So, if you have as a yes to two or more of those questions, it's quite likely you're hypermobile yourself. So, for those people who are symptomatically hypermobile and don't exactly meet the hypermobile EDS criteria, they may fall under something that we call hypermobility spectrum disorder. Clinically, we treat these as exactly the same thing. Research suggests that there's probably not really a distinction between them. So, as we talk through today on managing EDS and things, if you don't quite meet the criteria, but you still have symptomatic hypermobility, I would treat this the same. So, you can kind of consider everything we're talking about to really relate to you. So, you are still more likely to have pots and end casts and be neurodivergent. So, you can consider them the same essentially. I think it's important because some people, when they don't meet that criteria, especially because medical professionals don't understand, they can be then quite dismissed as well. But they are essentially the same thing. So, it's important to recognise that it's a broad spectrum. But, as I said, it can look really different because it can affect every system in our body. People with EDS often have symptoms. We have headaches and migraines and the pots and end cast side of things as well, which we'll talk to a lot more. There's a lot of gut issues. There's a lot of chronic pain. There's a lot of fatigue. And it can look like a lot of different things, which makes it tough to identify either in ourselves or as clinicians. What I will say is that, although I guess society and the medical practitioners often look really negatively upon social media and Instagram diagnoses and TikTok diagnoses, it's actually been incredibly helpful for people to help identify what's going on with them and to find community. Like we've already mentioned is such a big deal. And, honestly, for myself, this is something I share with people. And maybe a little bit embarrassing as a doctor. But, despite being a doctor, I myself was able to self-diagnose my pots on Instagram. During an EDS awareness month, they may however many years ago, people were talking about associated conditions like we are today. And I came across pots and I went holy crap. Maybe that's why I feel like I'm going to pass out when I walk up a flight of stairs. And I guess that also reflects a little bit of the medical gaslighting because I was a doctor walking up a flight of stairs with a heart rate of 150 feeling like I was going to pass out and thinking, "Oh, I'm just really shit at my life. And I just need to get fit out." That's ridiculous. But that was what I had internalized from the medical gaslighting and being told there was nothing wrong. Anyway, that was a bit of a side track there. But moving on to our next condition, which is pots, Posteroal of the study, Takikardia Syndrome. This is present in probably 89% of people with EDS. But again, likely we know it is very under-diagnosed. And with very big delays to diagnosis. And even more so for women to men which speaks to that medical sexism that you mentioned before many. So breaking down what pots is. Pots is a type of dis-autonomia. Dis-autonomia meaning dysfunction of the autonomic nervous system. So a lot of people these days, especially podcast listeners, will have heard of the autonomic nervous system. Being the part of our nervous system that controls automatic functions in our body. Things that we don't have to think about day to day. And that can be broken down, which most people again, pod-classicists, he would have heard of the sympathetic nervous system, which is often termed phytoplight system. And the parasympathetic nervous system, which is responsible for rest and digest, is also a third component of the autonomic nervous system called the interic nervous system, which controls our gut and our digestive processes. So when you're looking at dysfunction of the autonomic nervous system, any part of our body that happens outside of our conscious control can become dysfunctional. So things like heart rate, blood pressure, breathing, digestion, sweating, bladder control, sexual arousal, anything around our nervous system and what that controls in our body can be dysfunctional in pots. In dysautonomia and pots just being one type of dysautonomia. So this is again a condition that can look very different in different people because again, it's a condition that is multi-systemic. It affects all parts of us. So pots itself as one of the dysautonomias, it's characterized, which the name suggests, by a tachycardia, which is often triggered by posture, being upright, hence, postural orphistatic, meaning standing up, tachycardia syndrome. So tachycardia is essentially just a fast heart rate. So in kind of the general population, we usually consider that to be over 19, just when you're going about your day. And the diagnostic criteria around this is looking at those once you go from laying down, and this is something you can do at home. If you're listening and thinking you might identify with some of these symptoms, you can do something called a NASA Lean Test at home. So you basically lay down for 10 minutes and rest as much as you can, activate that parasympathetic rest and judges, and then stand up and see what happens. So for the diagnostic criteria,
diagnostic criteria for pots is that we get you to stand for 10 minutes after you have laid down and we measure your heart rate and blood pressure every 1 minute and If there is a sustained heart rate increase of 30 beats per minute or more in adults 40 beats per minute or more in kids and adolescents within that 10 minutes, which which is persistent or If you get a heart rate that exceeds 120 beats per minute when standing that's kind of indicates as a pots but another component of it is there being an absence of a huge drop in blood pressure in the first three minutes of standing if that were to occur That indicates more that you've got an orthostatic hypertension, which is one of these other types of disordinomia still quite similar And what we experience because all the disordinomias are dysfunction of the autonomic nervous system they can be quite similar It's just really a it's really a naming thing. So pot says that you get that tachycardia and you don't have the big drop in blood pressure in the first three minutes and present in at least 80% of it yeses So symptoms like what suggested in the name is that high heart rate is that tachycardia test pain and palpitations which Like that feeling of your heart beating in your chest you can feel quite light headed because you're not getting enough blood to your brain and just to kind of break down a bit more about why that is when you are postural upright We stand up and gravity pulls all our blood to the bottom of our legs. So we we get blood pulling in someone with a normal functioning nervous system and normal connective tissue Our body reacts to that quite readily quickly immediately to readjust our blood pressure to constrict our blood vessels and help us get enough blood to our brain When we're someone with pots that doesn't occur effectively. So we tend to have our blood sitting in our legs and we're not getting our brain perfused as we should. So you may get light headed some people faint though that's not common. Brain fog, a lot of cognitive dysfunction fatigue insomnia headaches migraine a lot of gut dysfunction as well because as I mentioned the Autonomic nervous system especially the interic nervous system is responsible for that gut function and we need our parasympathetic nervous system to be working appropriately to let us calm down and be able to digest a lot of blood Disfunction and anxiety as well anxiety is it can be a really dominant feature of pots and it feels like that when you you know you're in that sympathetic fight off light state and that's dominant for you that's an adaptive response that we've you know Evolved to get ourselves out of danger. So we feel like we're being chased by a tiger all of the time and so we are commonly labelled as just anxious and people miss what's actually going on for us. I think this is why it's so important as well for mental health professionals including psychologists to be aware of conditions like pots particularly if you are working with the autistic and ADHD population because people can go for years with symptoms of anxiety and be labeled with generalised anxiety but actually they could have an underlying medical condition going on and so you know the treatments for their anxiety alone are not going to work because it's an underlying medical condition. Yeah thanks, Manique. I will just second that and say I've working in this space and getting a lot of referrals with people with chronic illness. The number of referrals I've had and I always get on my soapbox about this but that have been pots and not anxiety make me really upset. It's a lot. Yeah especially you know panic attacks and panic attacks disorder and things like that yeah. And then when you're standing or in hot environments or when you're cooking dinner or having a shower. Yeah it's like oh really really anxiety provoking. Yeah absolutely and MCAS as well which I'll expand on too and we do talk a little bit in a moment about misdiagnosis a bit more as well but all the time I see this all the time people coming to me and this is why most of us are late identified because we're often told it's assumed to be psychosomatic. All of these conditions to be honest. So jumping into MCAS muscle activation syndrome this one I think is out of all of the conditions the most contentious and the most poorly understood in the medical profession. I think patients as well are less likely I think to know what MCAS is just because they haven't come across it and it's really not understood even by doctors. But MCAS again like I've said with EDS and pots is a condition that we consider to be multi systemic in that it affects potentially all of our body systems and it can look very very different. So MCAS is an immune condition and it is a condition of abnormal muscle activation. And so at way to better understand that is to understand what my cells are and what they are designed to do in our body. So my cells are part of our immune system there are white blood cells and they have a key role particularly in allergy and information. So they what we call our first line of defense they're often referred to as our threat receptors. So they are there to protect us against any perceived threat. So the neuro and immune system work really closely together. So it's why pots and MCAS often come together. We have our mass cells that are screening at us that something's wrong. We have our sympathetic nervous system that is kicking in to help protect us from that. So when we have our mass cells that's their normal function. But if you're somebody that has mass cell activation syndrome, your mass cells are overactive, they're hypersensitive and they're reacting way too much and way too excessively to things that they think may be a threat. So we have a very real or perceived threat and that can be anything that is a physical threat, a psychological threat, sensory threat, emotional cognitive, anything that potentially puts our body in danger or can impact the homeostasis in our body which means the balance of how our systems are working as a whole. That triggers those things can cause our mass cells to degranulate, especially if you're someone with MCAS. So that can be very difficult. It's essentially like potentially being allergic to anything in the world and it can look like a lot of different things. So unlike somebody that if you have a specific allergy like a peanut allergy and you know that when you eat a peanut, you will have an allergy. So if that's NFL access, you might know that eating a peanut causes your airway to close down and for you to get tacky cut, that high heart rate, low blood pressure to be really unwell. And you know that that happens when you eat a peanut, but for someone with MCAS, the potential triggers are so broad and they will vary day to day based on how many of those triggers you're exposed to, how much stress your nervous system is under and therefore your capacity to cope. So what happens again, so understanding what happens in the mast cell is helpful to understand the downstream effects is that when that mast cell is activated, it undergoes degranulation which means that it both open and releases a load of chemical mediators. And those chemical mediators, there's hundreds of different types, thousands released at a time from each cell, each of those chemical mediators then causes downstream inflammatory effects. And we have mast cells in every aspect of our body, they particularly lion blood vessels, nerve vessels and lymphatic vessels. So highly affect our vascular system and our nervous system. But they found everywhere, particularly in areas that are exposed to the outside world, which makes sense because there are protection, there are threat receptors. So around our eyes and our nose and our airways, our GI tract, our lungs, our bladder and our skin, we tend to get a lot of symptoms and reactions there, but they are everywhere in our connective tissue, in our brain. So again, it can look like psychiatric symptoms and it can be misdiagnosed as psychiatric symptoms really commonly. Just to guess in terms of breaking down a little more on what might cause those triggers, I have mentioned that it can be any kind of physical sensory cognitive emotional psychological trigger. Things like the sensory environment, bright lights, loud noises, intense smells, even temperature, vibration, which is if you're an autistic person, especially you're already someone with sensory sensitivities at end cast on top of that, and it can be really just tough existing in the world. A lot of environmental allergens, which people, most people would think of, they think of hay fever, things like pollen and pet dander and grass and things like that. Our diet is a big one as well. So with the gut being one of the areas where there's a lot of muscles, it's really common that we react to foods, especially those with histamine. And histamine is one of the chemical mediators that's released from our cells that causes a lot of our allergic analogy symptoms. Also different drugs being things like cigarettes and alcohol, caffeine, but also prescription medications as well. Inbalances.
in our gut microbiome. A lot of us will have micronutrient deficiencies and hormones as a big one as well. So for people, especially those in an e-strogen dominant state, they'll find that if you are ather and you're having menstrual cycles, when you're at the peak e-strogen parts of your cycle, so when you ovulate or just before menstruation, you'll find that symptoms of MCAS are a lot worse and people will often be diagnosed with PMDD or just think they've got really bad PMS, but it's that the e-strogen receptors on the marcells be activated and degradulating and releasing a whole of those inflammatory chemicals much more readily. And this can happen in other times when e-strogens fluctuating. So like those around the perimenopause stage, that's when you'll see a lot of people be diagnosed with MCAS as well because they may have compensated, but you get to a point where your e-strogen is out of control and you can't compensate for that any longer. And I guess just on another note, I think someone who's done a lot of work in gender affirming care and knowing that there's a larger overlap in the neurodivergent and queer communities and chronic illness communities, I do see a lot of neuroqueer people as well and I've seen those and so of my colleagues, so we have some anecdotal evidence that people who are receiving e-strogen for gender affirming care will often see it worsening in their marcell activation and their ports and their EDS symptoms as well. And conversely, those on testosterone can see an improvement in their marcell symptoms. This is a lot like the concepts around MCAS is a lot because essentially it's like you can have inflammation any part of your body, any, so basically any symptom you could imagine that could be MCAS and any trigger in the world that might cause you stress could could bring it on. But some common symptoms of inflammation if you go through the body systems might be things like fatigue, fever, change in weight, insomnia is a big one, temperature intolerance could be cold hot or a change in temperature, we often struggle in immunity, Euro psychiatric symptoms. So things like headaches and migraines, cognitive impairment from having inflammation in the brain, attention deficits which can make your ADHD symptoms even worse, being stuck in that fight or flight mode. Because as I mentioned earlier, when our marcells de-cranulate, that's our threat response. But then we have our nervous system sympathetic, like our sympathetic nervous system, which is also part of our threat and stress response that comes in there too. So we can get stuck in a sympathetic overdrive and just feeling really anxious and stressed because we feel like we're in danger and that is a physiological anxiety. It's warning us and it's telling us that there's something wrong in our body. So we can get endocrine dysfunction, there's a lot of thyroid problems, we can get issues with our blood sugar regulation, any other hormones, our immune system is very dysfunctionally and that it could be overactive or underactive. So some people find that they're getting sick a lot as well. You can have other autoimmune conditions that come alongside MCAS or pseudo-immunity which means that if you get blood tests, you might come up with markers of auto immunity for other conditions but you don't have the symptoms of those. That's really common as well. Symptoms of inflammation in the cardiovascular system can look a lot like pots or it can drive our pots symptoms too. So heart rate elevations, palpitations, chest pain, we get a lot of asthma-like symptoms as well. People with asthma, often there's an underlying MCAS condition there, breathlessness, constriction of our airways, air hunger, in the gut a lot of inflammation so you can have symptoms from top to toe, being reflux, gut pain, lots of different things there. Nausea vomiting, a lot of food intolerances and allergies, issues with motility, urigenital stuff is a big one and we'll see a lot of people with really heavy painful periods, a lot of people with endometriosis and that can be MCAS driven to urinary symptoms, like feeling like you need to wear a lot and conversely also having urinary retention. So not actually feeling like you're able to enter your bladder. Pelvic pain is a big one, painful sex as well is a really big one that we see with the lymphatics being involved a lot too. We can have lymphatic and optically so swollen lymph nodes anywhere, lymphedema so collection of lymphatic fluid in our, anywhere in our body and with our skin a lot of flushing, itching and I have urinary care or rashes or acne. It also affects our wound healing and we can get bruising. So one of the chemicals that's released is Hepron and there are lots of others which is a blood thinner so we get excessive bruising which is something that a lot of EDS as well associate with and it may be that that's the underlying MCAS that's driving that. And in terms of musculoskeletal stuff again because we can, it affects everybody's system, a lot of muscle pain, joint pain and what we call sensual sensitization. So if you're somebody who is in a chronic inflammatory state and your nervous system is chronically activated, your body becomes primed for pain. So people who are experiencing MCAS and people who have EDS and a lot of pain, often what I find when we address their MCAS their pain gets a lot better too. So it's really closely related to that. But I guess in terms of people listening and thinking is MCAS part of my picture very, very possibly because as I've said multiple times it can look like anything. And being something that is so multi-systemic as all these conditions are, it's again hard for clinicians to recognize themselves. People who have MCAS because there's so many different triggers and it changes over time. It's often or often there's no apparent trigger. They'll see many different doctors that will often have many different diagnoses. So I've mentioned a couple there like asthma, IVS and a metriosis and they will usually at least some of those diagnoses will be psychiatric. So they'll be told they have a lot of anxiety and people tend to stop reporting their symptoms. And most of us being late diagnosed with most of these conditions will end up with a lot of clinician association and end up with quite complex illness and disability. So in terms of diagnosis for MCAS that is really controversial. And I guess I will just kind of simplify that in saying that most people, most doctors who are really knowledgeable in this space will use a clinical criteria to diagnose this because the blood test and investigations that look at it are just very unreliable. So essentially what we do is if you're coming in and you've got a lot of these symptoms and what you can do at home is Google Marcel Mediator Release Questionnaire and that'll come up for you and it will go through a lot of these systemic questions and if you tick those once you get over a certain number it tends to suggest that yeah MCAS is probably part of the picture for you and it will be worth considering treating it and when you do a clinical diagnosis it is basically saying that someone has the typical signs and symptoms of MCAS in at least two body systems which that questionnaire can help you demonstrate and then if you don't have investigations that support that which most people don't, response to a Marcel treatment. So if you get a positive screen in that we will give you some Marcel directed treatment and if you respond that confirms our clinical diagnosis. You can also do this at home because some of the treatments it's complicated but one of the really just standard frontline treatments for MCAS any histamines and any histamines you can buy over the calmer. So you can actually experiment a little bit with this on yourself at home and try taking any histamines and see if it does influence your symptoms at all and that can be some really important data to take with you to your doctors too. I think yeah that's that's a lot but I think that's kind of hopefully I've given you a little bit more of a picture of what EDS plots in MCAS are. So thank you so much for taking us through all of that. You know I think again it's important that we really define what you know these conditions are so people who are listening can can learn more about that. You mentioned you know throughout the talk that these conditions do commonly co-occur. They're in that trifecta of LSDAM loss, MCAS and POTS. How is this trifecta related to autism and ADHD? You know how do they all interact and co-occur with each other? Yeah so we have some ideas essentially we're unsure exactly what exactly underpins all of these things but in terms of EDS we obviously do know that that's hereditary and that's genetic so it's present from birth. Plots and MCAS likely also do have some genetic underpinning for some people, not everybody but there's a genetic vulnerability that's there and then often these are conditions that you know we may not be symptomatic from SINCEBIR but can be triggered later in life as well. So a triggering event could be any kind of trauma so like a physical trauma like a viral illness or a car accident, significant stress like we kind of alluded to before
or those of us, you know, with neurodivergence and chronic illness like EDS who aren't identified and are then kind of pushed through neurotypical life, that chronic stress is actually something that then can trigger pots to come on, it can trigger MCAS to come on. So just cumulative life stress as well is something that might trigger pots and MCAS. So it could be that you are actually asymptomatic of those things and they don't come on until later in life. Bianca will expand a bit more on exactly how they relate to autism and ADHD. But in terms of why we may see EDS and pots and MCAS commonly occur together, there are kind of few reasons in the underlying physiology or just the underlying processes as to why we see them. And I did mention a couple of points as I was going. But as I mentioned, so that the pots side of things being a big component of that being the blood pooling and when we're standing up, getting the blood kind of collecting in our legs. In people with EDS and we have that, you know, faulty connective tissue and fragility there with the flexible and stretchy connective tissue, which is also in our vessels, our blood vessels. So the blood vessels in our legs, they are too stretchy. So it means that even more so than kind of a normal person when we stand more blood, more blood pooling will occur in our legs. So that can, you know, worse than our pot symptoms. And then, you know, as we have the blood pooling in our legs, our heart rate has to pick up to try to pump out blood around to our brain. And that causes that tachycardia and the pot symptoms on lack of blood flow to our brain. Also in EDS, if we have a lot of pain and deconditioning, our muscles tend to be, we have a reduced muscle mass or reduced action. And when we have our muscles working properly, they help us pump blood back to our heart, our brain. So if that's not effective, we're getting less blood flow to our brain as well, which makes those pot symptoms worse. And in terms of kind of all of the three of them together, again, that connective tissue being dysfunctional, it means that there's like a lack of support to our nervous system and our immune system. So our nervous tissue is not supported in our connective tissue as it should be. And also I mentioned before that muscles live in connective tissue. So they are not supported as they should be. And that can cause like a threat response from the nervous system and the immune system and activate that disorder, no mere an M cast as well. And when we see these things occur together, it just becomes like a vicious cycle. So it's really important to identify if you're having all of these. And I mentioned, if you're an EDSR, now you may, you know, 89% probably have pots and 81% probably have M cast, but again, these are underdiagnies. All of them cause GI issues. So having GI symptoms often means that we have a poor intake. So if we're getting a poor intake of food and fluid, that again, it's going to mean that we're not having enough salt, we're not having enough fluid, we've got a lower blood volume. So that contributes to not getting enough blood flow to our brain. So those pot symptoms can be worse. We are also likely not absorbing enough micronutrients because in, because we're just from dysononomia, because that controls our gut function and blood flow to the gut and the M cast side of things causes gut inflammation. So for both of those reasons, we're not getting enough micronutrients, which means it impacts our nervous and immune cell function just on the cellular level. It also means we don't have enough micronutrients to create collagen effectively. So it makes our EDS worse. And some more of the end-cast chemical mediators, like I mentioned before. So some of them are the inflammatory. So it causes a lot of the inflammatory symptoms. They cause some of them blood thinners. So it can cause a lot of the bruising. They're really important in the role of tissue healing. So often, you know, our EDS skin is quite weak and we have poor wound healing. And the other thing is that another one of the chemical mediators in M cast enzymes that break down our tissue. So they can make our hypermobility worse because it's causing more instability by breaking down our connected tissue in further. And it's a vicious cycle in that way. And there are so many ways. There's so many complex ways they interact. But yeah, we'll leave it at that and Bianca will jump in and tell us how that interacts with neurodivergence. - Thanks, Megan. I think that they are so interrelated and like you said, we don't really understand why. And I guess I also want to highlight that whilst we've got that trifecta, there's also thoughts around like a pentad and continues going on. So I kind of like to call these things all things to capture the fact that it's not just the three conditions that actually does go broader than that. So there are interrelationships with a lot of other conditions as well. So in terms of how it relates with autism and ADHD in particular, I might just start with some stats just to how common they are. I do like stats, so you always like to present these. And so if you've got EDS, you're around seven and a half times more likely to be autistic and five and a half times more likely to be ADHD. So if you've already got that EDS diagnosis, it's worth looking into. On the flip side, the research has shown that approximately 32 to 74% of ADHDers have EDS and 13 to 53% of autistic people have EDS. So those rates are really varied. I appreciate that. Some studies are even suggested seven less, some say it's more. I think the reason that that's reflected is that all of these conditions, their physical health conditions, but also autism and ADHD are grossly underdiagnosed. And we're only just starting to really get a good picture of this. So the research is really still emerging, but what I take from that is that the higher end of those numbers is probably more likely to be true. So we're talking like over 50% in all cases. So at least half, if not the majority of neurodivergent folk are going to have these conditions and vice versa. EDSs are going to be neurodivergent. So if you're working with this population group, critical to know, no excuse not to know about the other, if you're a psychologist, learn about the health conditions. It's within your scope for sure. One of my favorite researchers, who is Dr. Jessica Eccles from the UK, she's done a lot of work in this area. And her research over the last couple of years has demonstrated a really strong link between neurodivergence and hypermobility, as well as other conditions. So she's also got research on lung COVID and hypermobility, also neurodivergence. So she's a great person to check out her work, and she's got a lot of resources online as well. The other interesting thing that Jessica's research has shown is that of this population, people who have chronic pain and dysautonomia and all of the associated symptoms, are all these conditions, that how hypermobile they are tends to mediate that relationship. So the more hypermobile you are, the worse you're going to experience these symptoms a lot of the time. And again, we don't know why, but I think some of what Megan said earlier around some of the other factors like M-Cas, probably mediate that relationship as well. And I also want to point out that all of these things, unfortunately, as usual, were more common in female and afap folk, quite significantly so. So I think, like I said, the rates are really varied. What I take from that is that the majority of us are probably going to have all of these things. So yeah, if you've got one, look for the other. And I think as well, you know, not only are they under research, but they're often, and under diagnoses, they're often misdiagnosed as well. And we have talked about that a little bit today already. We've talked about the psych misdiagnosis, so things like parts being misdiagnosis anxiety and M-Cas being misdiagnosis, psychiatric presentations. But we haven't really talked that much about the physical health stuff being misdiagnosed. So personally, it's only been, I think, I don't know, I didn't think about it for five or six years since I've had my EDS diagnosis. And prior to that, I just had pages and pages of symptoms. It was told I was nuts, so I told I had fibromyalgia or functional neurological disorder or all the things that it wasn't. Not to say those aren't real conditions, they absolutely are, but that's not what was going on for me. And I hear this story so often from clients, from friends, from community members. And I think it's, M-Cas being misdiagnosed as IBS, all the things like that. So I think having an understanding of these conditions is really important. And being aware that there is a lot of misdiagnosis out there as well. - Yeah, that reminds me to be anchor of a study where they found that for people that have the LSDAM loss, their amygdala was actually larger and that was correlated with higher experiences of anxiety. And so I think it's important for people to know as well that if you do have LSDAM loss, the joint instability that your body experiences can also be seen as a threat by your brain. It doesn't know where you are in space, that freaks it out. Your proprioception is often affected and yeah, that has been cautiously linked to that larger amygdala for people and higher experiences of anxiety. And that's something that's physically based. It's not a mental health condition in that particular instance. - Yeah, thanks, M-E-G. I mean, you can't really see BT, your brain's way out of knowing where your body is in space. Like that's not going to work very well. Oh, excuse me, don't feel anxious. Like, I'm not going to walk into the wall bang. - You don't know. (laughing) - The bright side. - I told you sorry. (laughing)
- That's why I'm anxious. (laughing) - Exactly. - Like I think the medical side of things and often, you know, as we've rented about before, you know, on the podcast, off the podcast, but things are often quite siloed. So even within medicine, all the specialties are very siloed, mental health and physical health are siloed from each other, and that's why we really need to be, like learning as much as we can within our different fields and working together, like, cross-disciplinary, to get really good information and quality of care, you know, out there for people. And so I wouldn't mind just handing over to you, Megan, just to kind of speak to, yeah, a bit more about the medical side of things with all of these co-occurrences. - Yeah, so when we have a client with all of the things, which, as we've highlighted most of us do, so when I'm sitting with someone, and we need to look at management of what we're gonna do to control symptoms and to improve quality of life, all of those things need to be considered through a neuro-ferming lens, as all medical care should be, but specifically, there are several aspects of managing EDS and co-presentation that, you know, are impacted by our neurodivergence. And so things like medications, someone with ADHD might like to try medications to help manage that. If you're an MCASA, you're more likely to be reactive to medications. So that might be the drug itself, or the excipients, or the non-drug things that it's mixed with. So it may limit your access to management for ADHD. Also, the ADHD medications, if you're on stimulant medications, they can further trigger symptoms of bots by raising your heart rate or raising your blood pressure. So that can, you know, we need to consider all of the aspects of your care when we're managing any one area of this condition. We also find that, you know, people with bots and MCASA and EDS from the fatigue, from the lack of blood flow to the brain, or the neuro-inflammation. We can see a lot more executive function issues. So obviously, for a lot of people with neurodivergence, that's already something that we struggle with. And then you add in these chronic conditions that makes that worse. And what I often find is that the biggest barrier for people in successfully managing all of the stuff that's going on with these conditions is the executive function. So we really have to think about making things as straightforward as possible. Like, you know, all the things that you normally do as a neurodivergent person to reduce those barriers to be able to be able to do what you need to do. It's a huge factor in managing these conditions. We also see, like I've already mentioned, there's a lot of GI issues with EDS bots and MCAS. And we know, and with neurodivergence, a lot of us will have sensory issues. I've mentioned just my executive function and sensory issues around being able to feed myself. But if I'm not doing that appropriately, I can't manage my chronic illness as effectively either. And then if you're someone with neurodivergence and the sensory issues or our feed, you know, getting in the nutrients that you need or being able to limit your diet from things like low histamine, things might not be safe. So when I'm talking to someone about diet, I will ask them what their safe foods are and we're not going to limit those. We'll look at other ways to manage your MCAS without taking away safe foods because that's really important. Other things that often come up are sensory things with compression wear. So compression, like we've spoken about blood pooling, that can be a really effective way to provide physical support and reduce the level of blood pooling. So if you're neurodivergent, you might be a sensory seeker and like that compression, but if you're someone who doesn't like, you know, your sensory void or you don't like pressure, that's a no go. And I'm always saying to people, look, it's a cost-benefit analysis. If it doesn't work for you, it doesn't work for you. So if because you're neurodivergent, you can't do the compression, fine. We look at other ways to do it. But like all that took kind of say, there are many ways that, you know, our conditions impact what we can do from management as well. And we really need to make sure that we're considering all of our bones and being really neuroferming in our approach to how we manage these conditions. Because if you just get up and lecture someone as to all the things that we need to do, like the salt, the fluid, the compression, if you're not doing that, you're not effectively managing your pots. That's not neuroferming at all. And we're not going to, you know, be doing the best by our patients in terms of managing these things. - Yeah, it's very individualized. - Yeah, absolutely. - Yeah, I think that that speaks to where psychology comes into this as well is working through those barriers and helping people to identify them and come up with strategies as well. Because it is a team effort, like we've said today, but it's not that straightforward, Hayd's. It's, you know, you get this big long list of things you need to do, whether that's medical investigations or treatments. And it can be really challenging for people to change things and to have the executive functioning needed to do that. So that's a good support to have is, you know, like a social worker or a notee or a psychologist or just someone who can help with those things, especially as well, something that we haven't really talked much about today, but it is really relevant to this population too is interceptive awareness and things like Alexa Thymia. So it can be really difficult for some people to actually identify what's going on inside their body, both from an emotional point of view, but also from a physical point of view. And so if you've got these health conditions and you're also autistic or ADHD and maybe have Alexa Thymia, it's gonna be really hard potentially to communicate with the doctor about what's going on and that potentially can further perpetuate the gaslighting and misunderstanding. And unfortunately, we know that, and we've spoken today about this, but we know that that's more common in this population. So much so actually that there was a study done recently that showed that 85% of people with ADS had actually experienced clinician-associated traumatization, which is essentially just a negative experience or very negative experience with a medical professional. - Yeah, that is difficult. And I think something that Monique's spoken about when this podcast before is the idea of the double empathy theory, which I think is really relevant to this conversation. The double empathy theory and nutshell is the idea that autistic people don't have a deficit in communication. It's not that we can't communicate. It's that we actually communicate in a different way. And the research has shown that autistic to autistic communication is just as effective as in your typical to neurotypical communication, but where the communication breakdown occurs is between neurotypical and autistic person. I think also Monique has spoken about, you had a great episode on disability with Dr. Sarah Bernard and spoke about the triple empathy theory, I think, on that. - Yeah, so Dr. Sarah Bernard is the Australian lead for autistic doctors international, which is basically a support group for autistic medical students and doctors. And they do a lot of great research and advocacy. And they came up with adding to the concept of the double empathy theory through looking at something called the triple empathy theory. So the barriers, you know, that Bianca just spoke about in terms of autistic to neurotypical communication, having lots of breakdowns and miscommunications. When we actually are the patient to professional, the patient to Dr. Leia on top of that, that creates a third barrier. So for example, if you have a doctor or medical professional who's neurotypical and you're autistic and also the patient, there's a third barrier there that adds to miscommunications and barriers to getting good care in terms of the doctor and the medical professional will have neurotypical expectations of you, you know, that you can effectively communicate how you're feeling, your symptoms, whether you're in pain or not and describe your experience that you understand what they are telling you and that you don't need clarification of things or things written down. And so that can add to, unfortunately, a lot of negative interactions with the medical system for autistic people, particularly if you're chronically ill and have many co-occurring conditions. So the triple empathy theory. (upbeat music) So let's have a chat about the types of supports that people may need if they have one or more of these conditions because as you've both spoken about, you know, it is a lot. It's a lot of information to digest. Every new diagnosis that you get comes with a lot of information and change in how you need to do things. And if you are chronically ill and neurodivergent, your lifestyle has to change, basically. - Yes, it's a lot. It's very individual and we all do need a lot of supports and especially with executive functioning challenges. So what that actually looks like, though, will be different for everybody. The multidisciplinary team that I have at my clinic involves myself as a GP. We have physiotherapy, osteopathy, lymphatics and dihetics. And outside of that, I think psychology is really important. We've discussed a lot about how tough these conditions can be. But I think that's important for pretty much every human, not just someone with neurodivergence or chronic illness. You may need other therapies as well from an allied health perspective. So for dietary, occupational therapy, exercise physiologists, many others that could be supportive depending on you and your needs. Things like patient navigators and support workers can be really useful as well, especially if you've got that executive function.
those challenges and support needs. So from a medical perspective, it is important to get a really good GP, which we acknowledge can be tough to find, but GPs are actually able to diagnose hypermobile EDS, hypermobility spectrum disorder, and they can diagnose and manage pots and MCAS as well, but as we know, these conditions are not very well-known. So it is even harder to find a GP that works in this space, and what they're able to diagnose and manage will depend very much on the limit of their knowledge and their comfort and confidence working with these conditions too. So what most people will find is that they'll likely be referred to other external medical clinicians as well. So if, for example, you have those red flags we spoke about, that might indicate you have a genetic type, one of the 13 other types of EDS, you might see geneticists. If you have autoimmune conditions or rheumatological conditions, you might need to see rheumatologist, or often that's who people are referred to for a diagnosis as well, but again, just reiterating that we don't need a diagnosis from a rheumatologist or geneticist. A lot of people do end up seeing them though, because GPs don't all have extensive knowledge around these conditions. And depending on your other symptoms, you might also be referred to a cardiologist for pots, gastroenterologist for the GI issues, and neurologists, or lots of other clinicians too. So I can end up being quite a large care team, but even if you don't have a GP that knows a lot in this space, a good GP who manages you holistically and has that generalist knowledge, will be an excellent resource for you to help coordinate all of those different clinicians that you have involved. And that can help take off the burden of you needing to do that. Often, chronically, all patients end up kind of in that role of coordinating all of their care. So having a good GP that takes that on for you is really important. Yeah, and I think, as Megan said, in terms of supports, it's thinking about other supports that you can have within your life too, and types of scaffolding. So that could be things like bringing the support person to your medical appointments, asking your doctor or L.A. health person to write things down for you or send you a summary. Of course, that's going to depend on the professional and their executive functioning as well, but you can certainly have someone come in and help you with that. Just asking for help in general to do things, breaking tasks down, et cetera. And I think, as I touched on earlier, just having someone to support you to work through barriers and hurdles and figure out what scaffolds you do need in your life. And I think as well, as Megan said, it is hard to find people that specialize in this area, but if you can, it is really important, and we do really recommend that you do find someone that understands these conditions, because it does delay diagnosis. It does add to misdiagnosis, incorrect or inadequate treatment, and so on and so forth. And as both Megan and I have said several times, they both of us will work in this space, yet only have been diagnosed, late in life. And I was a psychologist before I knew I was autistic and ADHD. I was literally doing autism and ADHD assessments, embarrassingly, to admit and was going, "Oh, but everyone's like this, aren't they?" "Oh, okay, maybe actually, no, that's also me." And as Megan said, it wasn't aware of pots and their own presentation of that. So I think it's so critical to try and find people that work in this space if you can at least have one person in your team that can then help support the rest of your team understand as well. And I think finally, just take it on separate time. You know, this is a lot, it is a lot to go through. It's a never ending journey. We're all like the three of us on this podcast, we've all got our own health things that we're navigating through. It takes years, and I think it is a lifetime commitment to protecting and prioritizing and understanding our health. So take it on separate time and know that you're doing the best that you can. - Yeah, and you may only have the spoons to focus on one condition at a time, you know, and getting help and making changes and like adjusting to that one thing at a time, and that's okay. And sometimes there'll be conditions that you need to prioritize over others because keeping them all in mind and juggling all of them can be really tricky. Just for myself, as a personal reflection, this is not medical advice whatsoever, but as someone that was recently diagnosed with parts, which I had suspected, you know, for a couple of years, and I was diagnosed with hypermobile LSDAN loss a couple of years ago. Some of the things that I've been focusing on recently have been doing really, really gentle clinical Pilates, and I actually had to quit doing a regular reformer Pilates class because I realized it was flaring me up too much. So now I'm participating in like an online, really gentle 10 minutes, 20 minutes, sort of on the floor laying down flat to like exercise program. And with the pots, you know, I've started taking my electrolytes every day. I bought compression socks. I'm not sponsored to like say the name of the company, but like you want to sponsor me, hey, but I really like the ones from Dr. Wolf because they're bamboo and they're really colorful, you know, and again, like another like thing with being chronically ill and a younger person is a lot of the medical aids are ugly and like beige or black and just like, why are these reserved for elderly people? Like I know I've always been like the youngest person in the specialist waiting room. My whole life, but give me something. Like I'd be color. - Next sparkles. - Yeah, exactly. Exactly, color sparkles. You know, make it like get the little bits of joy from it that you can, right? And then finding ways to elevate my legs. So my cardiologist was like, well, you work mainly with other people with, you know, pots and chronic illnesses. So get a recliner, get an ottoman and put your legs up during therapy consults and just tell them, hey, this is something that I have to do, hope you don't mind. You know, it's not me being rude, putting my legs up and like looking like I'm having a rest, it's actually a medical condition that I'm managing. So I bought myself an easy boy and put it in my clinic room at work. And now I put my legs up for all of my sessions and that's really helped me be able to sustain working. The hours that I would like to be able to work at the moment across the day because I was finding it really hard to work with my legs down just sitting in a regular chair for, you know, four, five hours a day. So those are just some small examples of things that you can do within your unique constellation of conditions, you know, to just get a little bit more quality of life with each little thing that you bring in or each change that you bring in. You know, I'm juggling a lot of medications and one of the things that I suggest to people as well is even speaking with your local pharmacist about getting a webster pack, you know, especially if you have executive dysfunction and you can't remember what medications you've taken while you're actually taking them and that can be not so good. You can actually submit your prescription to a pharmacy that delivers your medication to you and delivers it in a webster pack on the month or when your prescription is due. So that's one less mental load. So for anyone who's not chronically ill hasn't worked in a care setting, a webster pack is basically where the pharmacist will put all of the medications and the dosages that you need for the different times of the day by the week. So we'll have, you know, breakfast med, morning team med, lunch med, dinner med, night med, and it will have it like in a pack and you just pop it out like a blister pack and take your medication for that prescribed time. And you can see if you've taken your medication or not because the blister pack is empty, you know, for your morning medications and they're all grouped together and that little blister for that day-time dose. That was a game changer for me, getting a webster pack and I recommend it to everybody and it's always such to resistors 'cause like, oh, that's for all the people, same as like the mobility I think, but the executive functioning and, you know, not having to remember, not having to pack it yourself 'cause a lot of people will just get the boxes but then having to do that's a pain. And the other really good benefit of webster packs is that you set it up through your GP and then the pharmacy can actually ask your doctor directly when your scripts are running out too. So you don't have to keep track of like what your scripts are up to as well. So like, that's a really, yeah, really pro tip for a lot of people that I recommend. (upbeat music) - So if listeners resonate with this information, you know, if they're listening to this and going, oh my gosh, I think, you know, that might be going on for me or, you know, I'm recognizing this in some of the people I work with or family members, et cetera. What would their first step be? You know, where can they kind of look for more information, help or support? - So my top tips for this are actually to get as much information as you can yourself together because as we've mentioned several times, not a lot of medical clinicians are really up to date and across all of the information for EDS Pots and Endcast. So there are a few,
things that I recommend people take to the GPs and as an aside I recommend making as long an appointment as you can with your GP and probably multiple as well so you have some time to go through these things but what you can do yourself jump on Google, Google the hyper mobile EDS clinical diagnostic criteria you can take that in you can fill out that for yourself and your GP can help you too you can do the NASA Lean Test at home for pots like I mentioned before you do need a blood pressure machine they're quite cheap to get online or from the chemist you may need to do that multiple times and in the morning is the best time what even a lot of clinicians don't know is that it won't be positive every time you stand up so you can collect that data at home you can get the Marsal mediator release questionnaire that I mentioned earlier as well and fill that out and I would recommend doing that gathering that information if you've got a smartwatch or a ring heart rate data and things as well and taking that all in with you to your GP in a long appointment and that I think gives you the best kind of starting jumping off point to go with your clinician and if you're lucky enough that your GP does understand some of this they may be able to diagnose all three of those for you but if they don't they can at least organize blood tests, organize referrals and then get you back in so I'd recommend you a long appointment and one another one at least two weeks later so you can go through blood test results and that'll give them a bit of a time if they're not familiar to look into the information you've taken as well and that's kind of my top tips for going to to any GP because like we said it's it really is a privilege to find someone who specialises in this space but that's going to set you up for the best experience in my opinion. And as well I think you know there's lots of online resources that Megan's touched on just now like the LSDANLOS criteria that you can google and find on the LSDANLOS Society website but there's also a great app by the EDS Society that helps you like go through the diagnostic criteria so you can use that yourself or use it with your GP, GP's can also use it, there's also something called the EDS GP toolkit which you can find if you google it and there's the Australian POTS Foundation website which has got some great resources on it as well and of course the EDS Society website just in general for resources too. They've also got a clinician directory as well which I would highly recommend people have a look at that's actually it's global they're a global charity so it's not just for Australia and the if you are in Australia you can look at the Australian POTS Foundation website and the Master's Sytosis Australia also has a list of practitioners that you can email them for an ask for as well so I think as we've touched on you can't always find someone that works in this space but Megan's given some good tips around that. I guess I also want to just point out though that as long as some of the other things the differentials that could be going on fear of being ruled out medically there's actually no reason why you can't start working with some of these conditions and supporting yourself especially with EDS I mean it's really about seem to management anyway and everyone is so different and things like what you said Meneek about Pilates or specifically clinical Pilates not just any random group we need to be really careful with our bodies but you know seeing an exercise physiologist or doing an online program that's for EDS you can do that already from the comfort of your own home you know you don't have to wait for a diagnosis so I really encourage people to start looking into some of the lifestyle modifications and treatments that you can do and supports even if you're waiting a diagnosis or confirmation of these things. Awesome well thank you so much for sharing you know your wisdom and your expertise in this space it's been a fabulous info dump session and just the topic that I thought was so important to you know bring up on the podcast so that we can get this information out there for neurodivergent people so where can our listeners find you both if they would like to check out your work and also the network of excellence as well well you can get in touch with my practice comfort psychology so we are a telehealth practice Australia why that works with this population and that's just comfort psychology.com as well as my network of excellence which is the Australian EDS and HSD network and you can find us via edsustralia.com and my clinic is connected health alliance so we our clinic ourselves are a EDS now a fifth excellence we're also a registered health permission charity we have an interdisciplinary clinic in Woolen Gong and you know yeah with many different clinicians there our wait list is a bit of an issue for medical care but our allied health I have a lot more availability and we are also running education for clinicians too so that is about six weekly sessions starting mid-May so any clinician medical allied health who has an interest or wants to know more can visit our website connect it health alliance to all good are you and sign up for education. Excellent well thank you both so much and you can follow Bianca and Megan as well on socials so Bianca has a handle on Instagram which is comfort psychology and then Megan you can follow as well on Instagram @dokdomegandtomus okay well thank you so much everyone been a fantastic episode and I'm sure that we're probably all going to crash and have a nap afterwards. Thanks so much for having us. Hello and thanks for tuning in if you enjoyed this episode and want to support us further you can do so by subscribing to our Patreon community Patreon subscribers get a bunch of bonus content and access to our monthly zoom hangouts a place to virtually meet up with the community explore topics and share experiences head over to patreon.com/ndwomenpod to get all the details we really appreciate your support as we aim to make quality healthcare information accessible to everyone. Thanks for listening to this episode of the neurodivergent woman podcast. 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