 Welcome! Welcome to Brain Club! I'm Mel Hauser. I use she-they pronouns. I'm the executive director here at AllBrain's Belong. I'm really glad that you've joined us. Let me share our share screen and we'll get oriented. How are there still open tabs on my browser? I don't know. Here we go. So we're really excited to be revisiting our Everything is Connected to Everything, improving the healthcare of autistic and ADHD adults project today. And specifically, we're going to be looking at the real-life impact in small ways on the healthcare system outside of AllBrain's Belong. We are asynchronously joined by a panel of primary care physicians who practice in the mainstream healthcare system, who are sharing their experiences with learning about the Everything is Connected to Everything project, and some reflections on the healthcare system and the patterns facing their experience of the patterns that we talk about at Brain Club all the time. Of course, Brain Club is our weekly community education program about neurodiversity and related topics of inclusion. Though we are going to be talking about health-related topics, today is for education purposes only. This is an education space, bringing people together based on a shared vision of what's possible in attempting shifting change, systems change, by shifting social norms. And as I said, this is for education purposes only, not for medical or mental health advice. I know that when we talk about health topics, it gets a little nebulous sometimes, but though AllBrain's Belong has programs that engage with some of these other functions and features, this one is for education purposes only. All forms of participation are okay here at Brain Club. You can have your video on or off, and even if it's on, we do not expect anything of you. We certainly do not need you to sit still or look at the camera or like any of those other neuro-normative constructs. So please feel free to walk, move, fidget, stim, eat, whatever needs doing. And you're welcome to communicate however you are most comfortable. There will be a portion of tonight, 25 minutes of a pre-recorded set of interviews. During that time, you're welcome to use the chat box, which is completely optional since the main idea is up on the screen. But then we'll have plenty of time for discussion, and you can communicate however you are most comfortable at that time. You're also welcome to send private messages to me or to the ABB team. In addition to affirming all aspects of identity, you know, I think especially when topics like health care, these like heavy topics that really a lot of people carry a lot of, a lot of trauma, a lot of distress related to health care experience, just really just as part of chewing safety to all people, just ask that you discuss the impact of your experiences, not the events themselves, not the specifics when discussing something that's distressing to you. And of course, we're balancing individual versus group needs. Speaking of access needs, closed captioning is enabled. You just have to toggle it on if you'd like to use it. So depending on your version of Zoom, you might see the closed captioning live transcript link, but if not look for the more dot dot dot and choose show subtitles. And that's my visual support to actually open the chat box. I missed all kinds of messages already. Hello, everybody. Alright, now it's open. And speaking of the chat, as I said before, the chat is optional. And for many brains, the chat is an important way of being able to communicate without using mouth words. And you don't have to think about it or wait for your turn, you can kind of just you have a thought you get it out. And at the same time, there are many brains for whom the chat is really overstimulating. So we just just giving you permission to do what needs doing, including to completely ignore the chat. That's what you need. Alright, so we're kicking off a new theme today. Every month we have a new theme. So March 2024 is all about systems change systems change from the ground up the idea of, you know, top down systems change, you know, policies and like big, you know, that that's one way to change systems. But we have found here that bringing people together, and just doing it differently, parallel play with the systems, that's another way for systems change. And that's what we'll be talking about in different different applications of which throughout the month. Because what we know is that the status quo of so many systems does not work for all brains. And we know that neurodivergent people are more likely to struggle to access critical resources, like healthcare, like school, like employment, like social connection. We know that one size fits all does not work for all. And as we set out two years ago, as we said, to do anything for the neurodivergent community, we have to do everything. And that's why our programs are not just direct services in terms of providing medical care, social connection opportunities, teaching people to develop an understanding of their needs, training employers to understand how to work with people with all types of brains, directly supporting the employment of the people in our village, doing trying to do all of it, because all of it we think is part of health. And we have been so grateful these past two years to be co creating this, you know, all brains belong experience with with with you as the people in our village, and really bringing people together and, you know, reimagining what's possible. Which is why I'm so excited to announce that just a few hours ago, ABB released our first ever impact report. And if any of our teams can put that URL in the chat, that would be amazing all brains belong dot org forward slash impact if anybody wants to check it out. And there's the ideas is it's stories stories from including for many of you stories of your experiences with our programs. And we're really excited to share it with you. Alright, so what are we talking about everything's connected to everything. What we find here at all brains belong in our medical practice is that the overwhelming majority of our autistic and ADHD adult patients have a constellation or a grouping of intertwined medical conditions involving multiple systems of the body. And what we find is that because the healthcare system is so broken, and imposes a lot of barriers to clinicians being able to address multiple problems at a time. Often, there's this fragmentation and treating these intertwined problems separately, even though they're not separate. And in fact, sometimes the standard way we take care of some of these parts of this constellation actually meet the other parts worse. And so this summer, with support from the organization on autism research and HRSA's ERP grant, we released this free resource that we call the all the things project, which has resources for patients and resources for primary care clinicians to identify and work through these patterns together. It was an attempt to bridge what's called the double empathy problem. You know, I think doctors and patients, clinicians and patients don't often speak each other's language. And given again, how broken the healthcare system is, you throw in all of the systemic barriers to anyone getting their needs met, patients and clinicians. And I think everybody's thwarted and nobody wins. And often there's this mismatch of communication that really does interfere with patients getting what they need. So this was a set of tools to try to bridge those gaps. And so what tonight's program is about is that we interviewed three primary care physicians from the traditional healthcare system who practice in usual typical settings, who have been using this guy, and we learn what their experience has been. Often, we know that, as I said, clinicians and patients don't often speak each other's language. And one of the parts of the tool is to like directly bridge that gap. This is part of the tool that a patient can print out hand their primary care clinician. And it introduces the project in a way that clinicians are used to like language that that they're used to reading about and hearing about, and then they can access the resources and explore them. And that's what happened. And so now we have the true people now talking about what that's been like for them in their practice. So we're going to play a prerecorded conversation. Very excited and grateful to our panelists, Dr. Laura Bujold, Dr. Laura Black and Dr. Tim Leshna. Before David starts playing the recording, I wanted to just name a term that I kind of dropped a few slides ago, the double empathy problem that I think is really important. We talk a lot about it. We're in love. The idea that when there is a mismatch between worldview and communication style, this is where break downs, communication breakdowns take place. So the term double empathy problem was coined by Dr. Damian Milton, who is an autistic social scientist in the UK. And he found through multiple research studies, and it's been reproduced time after time after time, is that there's not one normal type of communication or social skill. It's about a mismatch where that communication breakdown happens. So I would like us to be listening for a different perspective. And maybe, maybe, and we'll have plenty of time to discuss if there's anything surprising or new other perspectives that that you're hearing. I would just mention a word about language, you know, here it all brings belong. We you tend to hear and I mean, not not everyone, because of course, we're, you know, we're not all the same. So we might use different language that describe our own identities from time to time. Some people might use identity first language, for example, I am autistic and ADHD that's part of my identity. So I use identity first language. You will hear some language that you don't typically hear at Brain Club. You will hear language reflective of the medical paradigm. So I want to just like prepare you for that. It is what it is. There we go. Alright, so David, take it away. Well, one second, I'm having just a little bit of a technical difficulty here. No worries, take your time. I think you know, one of the things that's going to be that that is so powerful about this project in both, you know, your role as a reviewer and your role now is it's it's I think it's about application in a traditional practice like I can go out there and be like, I have a practice with autistic and ADHD people and this is the medical problems they have, but it's like, alright, well, that's nice. I don't have that practice. I think it's important to learn from how is this resource actually, you know, like playing out in like the regular world like in the traditional healthcare system. Because because that's where the mass impact is that's where most of the patients are curious. Was this a pattern that you were already seeing in your patients? I think there was somewhat of a pattern, maybe, but I think I notice it more now. So when we first connected about this constellation of medical conditions, I kind of remembered you like be like, yeah, you know, I kind of sit anyway. So like, was that a pattern that you think you know, in hindsight, there's a there's some people that come to mind. There's some patients that come to mind. And I'm like, Oh, my God, could that be for them too? And I, I don't know if I could immediately connect it to, you know, all the things and is this person, this patient of mine, are they artistic to versus is, you know, does it explain why they're not getting better on certain treatments? And I think pain was a big thing. Pain is a is a big barrier to patients that I see, whether it's treatment of obesity, diabetes, or just making any change to their lifestyle, but I'm in too much pain to do that. Was was this pattern? Was this something you were already seeing? I'd have to say personally, yes. I think all of us in medicine and in primary care, we, we tend to attract a certain audience at times, and perhaps in how I go about things, my audience has a certain number of folks for which there are a lot of interconnected and intertwined challenges. And so I was already, you know, have been working with these patients for many years now, and learning from them, working with them and learning from them. And so this, the presentation certainly validated everything that I've, and my patients have been experiencing. There's just so many people who don't know about this. You know, we have, you know, we have patients who they've been struggling for decades. And the pattern wasn't matched. And, you know, I blame the healthcare system for that because of the, you know, thwarting, thwarting clinicians from being able to take in all this, you know, and anything taken anything new. Yeah. What do you think of that? I mean, I, you know, what I tell the residents, like, sometimes you will feel like you're kind of in a checkbox world. And we need to remember to look outside of the checkbox world and look at the person sitting in front of you and get them what they need. How do I get the care people need when it's so obvious? And it's like low hanging fruit, but insurance won't cover it. Or insurance covers it and it's not available. It's like, if you want to help somebody, how about we start with the chronic conditions or prevention of the chronic conditions or prevention of the exacerbators of the chronic conditions, but instead we're focused on the treatments. And you have to be this sick to get this treatment, but it makes no sense to wait until you get that sick system, right? The system warps everybody. The healthcare system is so complex, even the people in it have trouble understanding it. So, so like you're seeing this and you're recognizing that everything's connected. And yet a lot of these patients, they've seen lots of clinicians. What do you think gets in the way of professionals not making those connections? I think it's the dynamic between the provider and the patient. So the few patients that come to mind, I think there's something behavioral or mood related. And unfortunately, I think the patient is angry. What I've experienced as a barrier is a patient is angry and frustrated and fed up because they've been either objectively, obviously discriminated against, told off, told that they're not being taken seriously. Or and so they develop this defense layer. So and that I think in some cases can also be some of the pathology, like I think fibromyalgia is another good example as a comorbid condition here. And then there's this overlap of some psychiatric diagnoses to severe depression, bipolar disorder, trauma. So I think that's been really hard because then it's hard to get in and really connect with a person. So behavioral dynamic, interpersonal dynamic. I think sometimes they're perceived as moody or dramatic, unfortunately. And a lot of these patients are women, not all. And this is where I would love to learn from you because I don't think I fully understand. And maybe I don't see the same population fully represented as you do too. Some people are in hiding, some people do not come to the doctor. But usually they're angry, frustrated, discriminated against, fed up. The system is so broken. Why don't people get faxes? I have no idea. But you know, little things like that. Because to be honest, I feel like I think it goes back to what you're saying, just like all the things you have to keep track of. And then you're not feeling well. And then you have to go back and forth. And then you have to go through the phone tree. And I don't like the phone trees. It's just it doesn't work. And a lot of patients who have this constellation of intertwined conditions, they have a lot of, you know, negative health care experiences, they feel that they have been invalidated, dismissed that people didn't, you know, they didn't get it. They didn't hear them. You know, do you what do you think of that? I, you know, that's been a journey of discovery for myself in that. I think as a as a physician, we hold ourselves to I need to have the answer. And and if I don't have the answer, that's going to be unacceptable to the patient. And in working with these folks, they that's not their expectation. They just want someone that will listen to them and work with them. I think about neurodivergent nervous systems. And, you know, neurodivergent folks are very heterogeneous group, of course, but when I think about like even sensory processing, like the sensory systems that are either taking in more information other people or less information than other people, an energy system, I think the the neuroception system, the threat detection system, there are a lot of people who are extra sensitive to threat. And it's like acquired trauma physiology, that hypervigilance that like looking so so so if I'm someone who has hypersensitive neuroception, and I enter a healthcare encounter, there's going to be something that someone's going to say or do that is I'm more likely to experience a threat because of these cues from the environment, my lived experience, the the the the vibe that I think that underscores the importance of how we communicate. And you just look at the words on a page, and you could communicate those in so many different ways, whereas the content is the same, but but the way it's conveyed and the way it's received is so so different. And and we you know, I not only, you know, I'm seeing patients, but I get to work in a training environment and spend a lot of time talking to our doctors that are training in family medicine of the importance of how they communicate and and how they convey those messages. You're embedded in that individual's care, and they're going to partner with you. And and that yes, those tests were, you know, we use the term negative a lot, you know, the test came back negative. And but yet that doesn't mean that there's not a something going on. It's just that we haven't found it so or that the test won't show it. And you know, trying to kind of communicate that is is so so important, especially when dealing with questions to which we don't have answers just yet. I think that, you know, energetically and cognitively like that openness, like that constant, like that the metacognitive aspects of medical practice where you're like thinking about how you're thinking and learning and moving through the world and like, oh, yeah, there's just like, there's this thing that now I'm being presented with and it wasn't like part of my thing. But I'm open to new things coming into it. Not not everybody can do that, right? Metacognition and this like cognitive flexibility piece is a higher order brain function. And the system warps everybody like the health care system like it doesn't just it doesn't just for patients. It works to us like it works clinicians, we're just like treading water trying to survive a lot of the time we don't actually often have access to those higher level functions. And then there's the time barrier. The very patients I'm thinking about, I asked for extra time and it goes so fast. And it's not enough. And I even go over and it's still not enough. You know, you're you're bringing up the barriers that happen, like the barriers to access while they're there. So the, you know, the the but there's so many barriers that even prevent them from getting there. So you must pick up the phone to become a to become a new you know, make an appointment. You have the executive functioning of like all the all all those pieces too. And you know, you mentioned trauma, you know, all these people with health care trauma. It's like, well, I made the appointment but I'm going to cancel it last minute because like my limbic system tells me that it's not safe to come back to this place. The patients I do know who have a diagnosis of an autistic disorder of some sort or something else going on with a neurodivergent diagnosis, because I think that's relevant to what we're talking about here for people who aren't diagnosed or people who don't have the diagnosis. But I can think of a few people who probably either avoid care or even at our discharge because of no shows and things like that. And it's terrible. It shouldn't be. I think systemic ableism is like so embedded in medical training and in practice. All the people that when they don't come to appointments, it's like, oh, well, they know sure they don't care. They're not engaged in their health care. But it's like, OK, whoa, it's maybe because of their disability that they don't know they have. You don't know they have and they don't know they have. The system has created a certain way. If you don't like it, then you can look for another job. I do know I have friends at other places that I won't name that are, yeah, as you described, they don't you don't have time to think they. It almost seems they don't really want you to. You just need to do these things this many times a day and move on to the next thing. And you're calling. Yeah, and but those docs aren't you can see them not being happy. That's not what we went to school for. These patients describe that in all of their years of failed health care interactions. They felt that they were not believed. And so they come in and they have the stories of, you know, they were invalidated and dismissed and shut down. They were told, go lose weight. They were this. They were that like just all of that. But these patients, especially these late identified neurodivergent adults, they have been invalidated and dismissed and shamed by so many people in their lives. And so they come in and doctor says, you know, well, your tests are normal. And now it's this trauma response. Which I think is a unique barrier to health care access and engagement that I don't know. I don't I certainly didn't get to talk that in medical school. What do people say that when they, you know, after they've like seen that the map is like bigger than even the patterns, you can't unsee it. So are you has anything shifted at all about, you know, you'd seen it already. But now now that it's like, oh, this is a this is a thing. Has that has that impacted what, you know, anything? You know, interesting in some of the short answers. Yes. The long answer is is acknowledging, you know, how things are interwoven. It's it's taking a look at our interventions, you know, whether that's a prescription, a supplement, a modality that we're using and recognizing not only the potential for good, for benefit, but but also having to be cautious about, you know, can this be harmful? Like the relative contra indications, like I didn't realize in this particular subpopulation, these things that are evidence based practice, you know, like propranolol for POTS or something, I didn't realize that in this population, that is going to make this person worse. Yes. Well, that's like muscle relaxers. I remember reading about muscle relaxers. I was like, I mean, reading it, it makes so much sense, but I have to admit, I've reflected a lot on who I've prescribed muscle relaxers to and who should or should not get them. Yes. And it's really hard. Like, you know, we trained in an era where it's like, well, you know, don't don't prescribe opioids. And it's like, what do you do? You like muscle relax. And it's like what? But with and without like necessarily even recognizing like, what is pain really to actually think about, you know, for some people, pain is their joints going out of alignment. It's mechanical. For some people, it's like they're cutting off their blood flow or like, you know, people who, you know, on surface appear to, you know, be healthy, but they really have like really bad small fibro-neuropathy, you know, just like all these things that I don't know, they weren't on my radar. They weren't on my radar until I experienced them personally. And, you know, this is what's going on for a lot of people. So muscle relaxant, you know, you just made them worse. Yes. Yes, I yes, because I think, you know, I think, I think a lot of our treatments serve, you know, again, we have this huge spectrum of human, and it kind of serves this middle. And, you know, if you are in a system, which I am not, or you need to see someone every 15 minutes, you don't have time to think about all those other people on both sides. And that's, I think, where people don't get better or they don't trust their doctor because they're not listening, but I'm not giving excuses to doctors, but when you're in a system that sees someone every 15 minutes, you know, it's, it's just a challenge. It did go through the guide. I haven't gone through it recently, but I found a lot of the things in the guide were things that aren't complicated as what they're not complicated. And I think that's kind of what blew my mind. So I don't know if you've, you know, looked at the, you know, the clinician resource guide, if there's anything in there that, you know, if you've used it, it's totally fine if not, but if you used it, I'd love to hear about that. Yes, yes. So I guess yes to all of those questions have looked through it and, you know, using it as a reference when I'm meeting with a patient and that's in the back of my mind, going through things that we're discussing as far as symptoms they may be experiencing or signs they may exhibit. And in that sense of, okay, what, you know, what, what have we, what have we done? What have we tried? What else could we recommend? More recently, it was working with someone who is in, you know, experiences a lot of chronic pain as a result of hypermobility and exploring low-dose naltrex zone. Since talking to you, like, especially like things like hypermobility, EDS, how do we manage that? I've reached out to our children's hospital, physical therapy, our adult and luckily our physical therapy office right next to our office does, will take adolescents and help with joint stabilizing. And they gave me the name of the person who specializes in that. So it, it's been very helpful to get at some of the medications that we've been using or even supplements and, and trying to fine-tune those for minimizing the side effects and, you know, maximizing the beneficial effects. And that's been an ongoing navigation process. And love that you said that, you know, like back in the day when we first started working on this, the idea of turning this pattern and stuff we were seeing into like a usable resource, it was really first and foremost about the latter. It was the idea of, wow, there are some standard medical interventions, you know, medicines, supplements that actually make some of these other parts of the constellation worse. And holy cow, I don't, I don't know, I didn't know that. I don't know. People know this. Like, so it was really about identifying those relative harms to within the constellation. And I think, you know, relative's a very good choice of word. I, you know, I often have this discussion with folks that we're always looking at what are the risks and benefits of these interventions. And when there's the thought that the risk may be minimal, that doesn't mean zero, but that the potential benefit may be greater. You know, I push that into the reasonable status. And again, getting back to the trying things, it's working and saying, OK, you know, let's let's try this. We'll talk again next week. And then we'll find out if it was helpful or harmful or somewhere in between. And and then and then let's let's let's look on the other part. So it's very much a team effort. And and now it's becoming increasingly a community effort when there are, you know, additional resources for all of us to, you know, share share victories and and and and suggestions and again, kind of try things with that ultimate goal of of of improving the situation. You now that you have this framework, like your systems thinking pattern matcher, like that's how your brain works. So now you have this new, this it's not new, but, you know, like you have this thing that now you're snatching, like as you go through. Yes, like even I have, like this now, the hypermobility chart. Yeah. So I I'm still learning, but I feel like I've I've come a long way since we've talked and hopefully I'll keep going. Yeah, we certainly have to acknowledge that we don't have all the answers, but but we want to work collaboratively on on, you know, addressing things that we're able to address. Absolutely. Anything I didn't ask you about that you want to mention? Oh, I you know, we've covered a lot of I just, you know, again, kind of reiterate that that partnership that's so important with patients and the navigating the journey together. We learn from our patients, you know, a lot of the tools and techniques that I might be applying to folks, I'm getting them from others and and looking and listening and and saying, OK, yes, you were you were on a support group and and this was the topic of conversation. Well, let's let's look at this, you know, a little bit more scientifically and let's explore this treatment and find out if it might be a safe and effective modality that we can use. And you know, a lot of times the answer is yes, and we we decide to go forward and try something along those lines. But, you know, in the absence of those those groups and those forums, we may not be moving forward. I love that you said that because I didn't tell you this part, but so Brain Club, so this this this program, this this this interviews with with three or four primary care physicians talking about this project. This is part of where this is going to go. We have a weekly community education program called Brain Club. And every month has a big overarching theme and their subtopics each week. So the theme for March is systems change from the ground up. And what you just said is exactly why this topic is is in March Brain Club. It's next week's Brain Club because it's the idea that we we learned this from our patients. This really is this village here of learning and healing together. And it just so happens that there was evidence to support each piece of what the people brought us. But we wouldn't have been looking for it if they didn't bring it. And so really just co-creating you know, we had more than 100 people in focus groups sharing what worked and what didn't work. And that's how we learned about the relative. I don't want relative contradictions, relative harms or like things that side effects we didn't know about. You know, anything else you'd like to say or share? How do you talk to someone about all the things and how do you I guess how do you even say that? So foreign to me, how do you kind of open up that door with a person with a patient? It's like this self-selected group of people whose needs were not met by the traditional health care system. They are, you know, so it's certainly not a homogenous group of people by any means. But amongst that group whose needs were not met, they were more likely to be autistic and already ADHD and they were more likely to have this this constellation. So so a new patient comes in and like I've done on my like new patient intake forms. I screen for all the things for all my new patients and I'll send you what I use. It's very it's very much like a simplified version of of of of what we have up on our all the things project website. But so I'll say, you know, I noticed that you had X, Y, Z, A, B, C. Did you know that there's actually a grouping or cluster of intertwined medical conditions? And I usually, you know, whether they're, you know, if they're in person, I'm like, you know, turn on my laptop if they're virtual. I'm sure screen and I show them a visual support. I think visual supports to sort of like anchor what you're talking about. I think I think most brains benefit from visual supports, whether or not they are like dependent on visual supports or not. Oh, I agree. Totally. Yeah, so so the visual support and the visual support I use, which is the one that's in the all the things guide is that I don't know if you've seen like the rainbow braid. Yeah, that you showed that different systems. Yeah. So the majority of patients who who come to all brains belong, they struggle with a grouping of medical conditions that involves something in the connective tissue bucket, something in the GI bucket, something in the sleep bucket, something in the, you know, pain bucket. And like you see them, they're like the mouth drops and their eyes are wide, like, you know, and I'm like, Oh, do you think that applies to you? Like, I don't know. Like, they're like, that's me. Like, like a thousand percent of the time. That's what they say. And I say, well, you know, I think the health care system often interferes with clinicians having the opportunity to address multiple problems at the same time. But really what happens is that when we fragment out these different parts of this cluster, we miss the fact that there's like internal conflicting needs where some standard parts of this cluster make the other parts worse. And so like zooming way out, we turns out that if we approach this through a like a lens of a big picture, we find the things that make your thing better without making the other parts of your cluster worse. Like in my practice, we do a lot of group medical appointments. We do a lot of like group learning and a lot of like visual supports and education and stuff. But I think like in a in a in a traditional practice, you know, I might just like send them to the all the things site. You know, hey, you know, check this out. And next time we can talk more about it and let me know if any of this resonates with you because there's all those patient tools on that site. Thanks. Yeah, that's simple enough. I like it. One of the things I think we still struggle with is that patients, I think have often internalized the health care system narrative of like, well, what's this? You know, what's the what's my hyper mobility contributing versus like, what's my fibromyalgia or like, what's my mass cell dysfunction or what's my it's like, whoa, what would it look like to zoom out and say, like we don't have to fragment your body parts. We could support your neuro immune health in this way. Do you have any thoughts on that? Well, it's I think that that goes along the line of the specialization in many ways. And, OK, you've got this body part. So you see this person, you've got that body part and you see that person. And and those people aren't always talking to each other. Even though your body is anything that you and the patients that you work with would like to give to doctors like me, who don't. Who are probably needing to learn more about, you know, what? Is there anything universally helpful that we can do to break down a barrier and invite change? Well, that is there anything that you would like doctors to know about how we can break down barriers and invite change? Anyone have anything that you'd like to share? Do you ever have doctors come and shadow you, doctors from other practices? I feel like someone people should come and spend the day at all brains belong and just watch how you interact with your patients. Oh, thank you for saying that. We've had some folks. We've had some folks be involved in various ways and along those lines. I think I think some folks are interested in like. The logistics of like, you know, how do we do group appointments or like, how do we do this or that? Or how do we address this topic? Like those those kinds of things. Yeah, and we've, you know, we've had medical students, which has been really cool, really cool. The idea of like upstream upstream to really be introducing people to. To this stuff, it's so common that certainly wasn't part of my medical education at all. I love this comment. I love this comment in the chat about separating physical and mental health. You know, I completely agree. That's that's so harmful to make that distinction. Tracy says, I'd like doctors to know that neurodivergent people are processing 40 to 60 percent more sensory input. Yeah, Tracy, what else to folks? What would you like folks? In the traditional system to know? Go for it, Sarah. One of the things we've been a couple of us have been sort of involved in this some this this research project about sort of health care narratives and and a lot of what, you know, and so we we end up sort of looking at the stories that of people's experiences with the health care system and which is kind of so in so many ways so validating because it's like so parallels my own experience in oftentimes in parallel as my own experience. But but what that, yeah, what Jenny's just saying right now is that the not the not disbelieving you that that piece seems to come up again and again. And I think what what strikes me that I would like and what I think I'm reading other people and would also like is is is is that I have something going on. I don't know what it is. I want to understand. I want to understand what's going on with my with my body and I'd like us to not stop till we get to the bottom of it. And and a test might come back and say that I don't have I don't meet the criteria for X, Y for condition X. But but I'd like people to not stop the inquiry there. I'd sort of like my physician to be a partner at helping me to understand and get to the bottom of what's going on in my body and get me to the places that I could think that would help me to figure that out and that that would be our job that we would finally that we would find that the end of the the the thing would be like, you know, and it might be like that. It's like what I have is what I have is stress. And then they could understand how how my stress is creating this can this thing that's happening and then why I need to deal with my stress or it might be it might be that somehow that my mental health is is impacting what's going on. But but then they could help me connect how this thing is happening in my mental health is creating these physical things that I'm actually experiencing so that I could know why I need to address my mental health in order for my physical stuff to get better. But but to help me connect the dots because they have the experience of I have the like I'm the expert that I don't feel better. And you telling me that it doesn't register a test that doesn't help me. But I you know, so so I'm the expert on when I actually have enough information to feel like this makes sense to me and I can work with that theory. You're the expert on the that you have the background knowledge to help me connect the dots once we both have enough information for the dots to be connected. So I guess that's what I'd kind of like is is for you to listen to me as to whether whether I I'm feeling like this makes sense to me. I can work with that theory and until it until it makes sense to me and I can work with that theory we're not done and you're the expert on like the ways that how the dots could be connected to make sense. So anyway, stop there. Amen to all of that. And I think, Sarah, you know, I just really want to just reinforce how how on point this is like I am the expert not just in my in my body, but I'm the expert in whether I've had enough information. Like what a what a really poignant thing to say. Yeah, I would also say that while I think and I think we heard this from some of the panelists around like there's some things we don't know about or there's some things we don't have enough information about. Like actually, there's a lot of things that we do have information about. It's just that it's not coming from the sources that maybe we were expecting it to come from. It's like coming from the patients. Like like that's that's where the information is, right? So that I think is, you know, a paradigm shift, also including the idea that there are some medical conditions that have like tests that are pretty they're pretty sensitive. And when they turn up, you know, they show something and then we can feel pretty good about that that means something. When we're talking about neuroimmune conditions, we're also talking about things that don't have good tests. And and that's that's important, too. And so to Sarah's point about, you know, we don't we don't keep. We don't, you know, we don't give up. We keep keep searching. It may also be that we have a way of understanding this based based on the information that a patient is provided and what what helps them get better, as opposed to this paradigm of I will necessarily have a particular test to, you know, name something and sometimes that happens, sometimes it doesn't. I'm going to read a couple of comments from the chat. So Christina says, asking the patient what they think is going on before they share what the doctor thinks is going on. I mean, I remember as a I remember being taught to do that as a first year medical student. And I think the health care system, you know, for all the reasons you heard described and you've heard us talk about a brain club before about how the system thwarts clinicians and patients. Right. So, you know, some of these these these basics and perspective taking, it's none of us can perspective take when we're being, you know, tortured by the system and Shelly's comment. Being the captain of the ship, being a partner, partner in your care. My therapist always says, I love if medical providers didn't sigh when they see my little notebook of questions. I know this is a product of the larger issues in the system and lack of time. But trusting me as a patient to know how to prioritize and and still respect their time in or set me up for a second follow up if needed, if you're out of time. Right. It's it's transparency. So, yeah, unfortunately, the system has made it such that we only have whatever 15 minutes together and we've run out of time. And I still want that time to be used in the way that works for you. And so just as, you know, I think, you know, we've talked about this at past brain clubs, just the idea of, you know, when when when patients organize their thinking in writing and provide and make themselves a visual support, there is nothing wrong with that. And if there is the sigh, if you're picking that up, that vibe, it's so palpable sometimes. Conflicting access needs. Galeshares, it's almost like mainstream doctors are more invested in what's not wrong. I'm going to comment and read your quote. Then I'm going to comment what's not wrong instead of trying to figure out what is going on. Doctors need to go to a room with a blank slate, assuming they don't know who the person is they need to find out. Yeah. And and remembering that the structure of so many of medical tests in 2024 are very much there. That's that's how they work as opposed to like I forget what they called it in Star Trek, where you're like, you know, you just get the report on like, you know, this is what's going on with someone. It's it's it's more about this test is looking for this thing. And if this test is not turning it up, it's not that thing. So like the whole clinical reasoning based on testing is what you just said. So, yeah, Sierra sharing each person brings expertise to the conversation. Right. And I think Sarah said that too. Right. So I'm the expert of me. You're the expert in the medical conditions we're discussing. You come together and we are we're a team. Tracy says, it would be nice to have training about neurodiversity. Yeah, we think so too. Peter says, I can't imagine being a clinician that rolled their eyes when a patient wants to be involved in their care questions, medical notebooks. I love when my patients do that. Help me help you. I tell all my patients this this is a team sport. We're working together. Oh, amen to that. Patients are so lucky to have you. Right. I mean, why would we not want people to be able to communicate in the way that works best for them, that they are best able to share their truth? Why would we not want that? Ginger says, it's less about what I'd like doctors to know and more about what I would like them to do to get active in policy change, changing our current dysfunctional siloed medical system. Yeah. Yeah. And I think I think, Ginger, that's that that I'm glad you said that, right? Because that's that's what this conversation is about, right? So there's policy change top down. And if people are like treading water and they feel like they're drowning, the idea of like, well, when would I have free time to advocate for policy change? I'm just like, I didn't even get to I didn't pee all day. I didn't eat. I didn't drink water. I didn't pee all day. Like what now? What? Right? So so there's that. And so this is the idea of of system change from the ground up, of just like doing it differently because it can be different. And someone needs to advocate top down as well. Sierra says, reframing away from a diagnosis of exclusion to a positive diagnosis. Negative test is often what we expect in so many conditions, right? And it all brings belongs. So Sierra and I and Gabe, we're always like, we're naming that. We're like, we're going to order these tests, but we expect them to not show anything because they're not good tests. It doesn't mean that we're not dealing with all the things. Jenny says, what you get taught to do in medical school is a fantasy that was impossible to carry out. You were forced to cut corners constantly. Peter says, there's so much in the system that benefits from medical provider benefits for medical providers being rushed. Most of its run is a purely money generating enterprise. We're all begin to wanting to we all begin wanting to listen and hold hearts tenderly. Yeah, lover. Yeah. Yeah. And I think we I think we've heard that right. We heard that in in one of the panelists comments about like the the systems that where where clinicians feel like cogs such as we don't even really want you to think we just want you to do the thing systems perpetuate systems. That's what systems do. You might have time for one or two additional comments if anyone has anything to to share. David says, the most common complaint I see in support groups is when a provider doesn't know what's wrong, they feel like they have to give a diagnosis and they pathologize and say it's anxiety. Yeah, David, I want to connect that to something Sarah said. You know, this idea that we are making a distinct distinction between physical health and mental health is so bogus. It's the nervous system. It goes through the whole body. So it's not like, oh, well, you manage your mental health and, you know, then then then your symptoms will go better. It's like we have to manage the nervous system like the big picture. The, you know, your nervous system is reacting to the environment. Sarah, I like that. So Sarah says, so theoretically, good systems could perpetuate good systems. I like to think so. Dearest says, I think providers are often not comfortable giving a diagnosis that there's no cure for or treatment algorithms. Right, because in 2024, it's how a lot of a lot of the system trains you to evidence based medicine, and that means you follow this algorithm. And I think I think that that that was one of the reasons that we designed the All Things Guide as it was. I mean, not that not that there's an algorithm, but that like, yeah, it's a set of guidelines every single every single line in that guide. Has research to support it. There's things we do here that help a lot of people that we didn't put in the guide because it wasn't like clear enough. It wasn't clear enough to be relevant and appealing to the mainstream population. I mean, so every single thing in that guide. And so I think that's why I think that's why it's working. I think it's because it's it's really about it's like we started the beginning of the hour with the double empathy problem. It's about it's about how we communicate. And when the system is forwarding both sides, we're definitely not likely to be able to perspective date in either direction. Thanks, Sarah. Thanks, Lizzie. Awesome. Sarah, I just one last thing was just I think what the what one of the doctors said about that it wasn't nearly as important for the doctors to have an answer as it was for them to have an ally. I mean, I think that's that just seems to come up again and again, especially if you've seen 10 doctors who don't have answers, you don't expect your doctor to have an answer right away. That's not the important thing. You know that you're dealing with something really difficult. What you want is to have an ally who will help you get to the bottom of things. So so one of the things that would be really helpful for doctors to know is just that for especially for people who are who have have seen a lot of doctors or who are having a hard time getting to the bottom of things, they we don't care if you have an answer. We just care we care that you're with us trying to figure it out. Like at the end of the day, doesn't everyone just want to know that they are understood by another human being? So with that, thank you all so much for being part of this really important conversation and we'll look forward to seeing you next week. So next week, we're continuing our theme of systems change from the ground up. We are presented as Dr. Winnie Loody from our board of directors. It's a conversation between Winnie and I talking about authentic systems change. What does it really mean to what is system change from the ground up really mean in terms of involving and co-creating an experience with the people you serve? So we look forward to seeing you then. Have a good week, everybody. Bye.