A (2:52)

So we have just wrapped up both Megan and my biopsychosocial episodes, which were quite vulnerable for those of you who watched and maybe and listened and saw the YouTube and the videos, and today, I think we wanted to zoom out even more and talk a little bit more about all of these experiences. And I'm going to pass it to Megan because my thoughts are not formulating.

B (3:16)

Your thoughts are not thoughting. Yeah. So just to. Because, Mel, I know, like, Patrick's just came out. Mine hasn't been released yet. So first I'll just give you a summary of what we talked about with Patrick's. We did the biopsychosocial around a very specific goal, which was sleep. We identified things like restless leg syndrome, how, like, thoughts about sleep. Um, there were some interesting psychological components that came up for you, Patrick. Also around how relaxation is not associated with safety.

C (3:49)

The.

B (3:49)

I think there's the tendency to wake up after one sleep cycle, which I also. I've been experiencing that lately. Patrick has had some nice relief since we recorded that episode thanks to some medication changes for the restless leg syndrome. And then last week, I talked about kind of my long Covid fatigue, social isolation picture, and then how depression gets pulled into that. But also my big aha moment was realizing a lot of my workaholism, which I've talked about pretty openly on this podcast, I think is functioning as a manic defense of, like, I am the grief I have around getting long Covid back in 2020. I don't even know how to start to process that. That I think this manic defense of, like, well, I'm just gonna pour everything into the one place in my life where I feel competent or actually, like, I don't even feel that competent half the time, but I get reinforcement that it's competent enough. So that was kind of my big aha moment. And then we both made goals around little things we're gonna start doing to try and get this cycle going in a more positive direction. So that's kind of the context for where you're joining us in this conversation.

C (5:07)

Thank you for sharing that. And I think that, like, there's so many people, right, who. They struggle. They struggle in ways that affect literally every aspect of life. And still that. You know that all the unlearning, the internalized ableism, all of it. And when it comes to chronic health conditions, we've got that healthcare system, the neuronormative healthcare system that's, like, still telling all the people that it's their fault, when really this is like, a constellation of intertwined medical conditions that are more common for neurodivergent people that that are. It's not part of medical education. It's not well understood. And, you know, the narrative of, you know, you've got 40 things wrong and it's your fault, and why don't you just go to bed earlier? Like, and why don't you lose weight and like, why don't you, why don't you move more without really an understanding of the neuroimmune system and how it is impacting literally every system in the body.

B (6:02)

Yeah, absolutely.

C (6:04)

That's.

B (6:04)

That's so well said. Yeah, yeah. And how complex these is. And, and that's, I think, why even before I knew I was autistic, like, why I was so drawn to the biopsychosocial model, because it's like, ooh, let's map out all of the factors and like, all the ways that these are connecting. I mean, it's also a great, like, pattern recognition tool, but honors that complexity of like, yes, these things are all connected. And we. So we can't start talking about, like, how do we improve sleep as if it's lives in a vacuum because it's, it's so interconnected to all, all of the things and all of, all of our, like, our social context, our, like, what we're telling ourselves, like, our psychology. That's the part I tend to, you know, lean into. But yeah, absolutely.

A (6:49)

I want to, like, I was going to unmute and say almost the exact same thing verbatim to what you just said. I want to take our listeners on a little journey to. Since my episode, which was basically advocate to pcp. PCP makes sleep medicine referral. Sleep medicine referral doesn't know what to do. Requires referral to neurologist. Wait list for a neurologist is four months. Get to neurologist only to stump neurologist with said symptom. I had symptoms I'm experiencing for them to refer back to sleep specialist. And that is kind of the rinse.

C (7:24)

And repeat cycle healthcare. Right.

B (7:29)

Patrick, do you want to mention. And we, we can cut this if you don't, but do you want to mention the thousand doll pivot to a functional medicine provider?

A (7:38)

I'm so glad you said that. Yeah, I'm happy to, you know, you know me, I'm not often gonna ask to cut things. So, like, okay, all of that happens. And again, we've said this before on this podcast. Thank God that we are mental health clinicians and professionals who know how to advocate for ourselves. Because it can get so frustrating in that, like, that system where you're bouncing from Provider to provider, and they're just kind of like passing the buck or they're just confused. And I love that expression when I'm like talking about all my symptoms and I can see in their face, they're just like, I don't know what to do. And that's usually what happens. So post all of that experience, I went and saw a functional medicine doctor because a lot of people were like, you should go see someone in functional medicine. They'll change your life. This is going to be much more holistic. Maybe so for a lot of people listening, and I don't want to like, disparage anyone or anything, but I did not have that experience. I had the experience where I literally sat down and the first question was, so you're a high functioning autistic? And I said, well, that's not what I would call myself. And he said, oh, on the spectrum. And I said, no, I also wouldn't say that. And he said, well, what would you say? And I said, well, I would call myself Patrick. And then afterwards I'd probably say that I am autistic. And he was just like. And then the, the $500 appointment just progressively got worse from there. And it was just like, in my mind, as I'm experiencing this, like, I know I'm about to have to pay this, this $500 and I've already mentally, like, checked out dissociated. I'm no longer here in this room and I'm not coming back. And it was so much more than just the introduction to the session. There was a lot more to it, but it just felt like such complete.

B (9:29)

What I remember about. Oh, go ahead. Oh, I'm just gonna add, like, what was interesting about that text thread because we were texting your day of the appointment was like. His response was like, oh, no problem, we'll fix that right away. We'll fix that, we'll fix that, we'll fix that. So, like, you going from a neurologist to be like, I don't understand what's happening to someone who. It's almost like too. It sounds too easy. Like, oh, no problem, we've got a vitamin for that.

A (9:51)

Yep. And there was this statement he kept saying that was like, you're a challenge, but I'm up for the challenge. And then he kept, like, offering different supplements, which was typically like nitrous oxide supplements over and over again, and like showing me studies about why mouthwash kills people. And it was just like, how is this $500 like, y', all, if anyone can charge $500 for stuff like that. Y' all can too. It's just crazy.

C (10:19)

Can we zoom out? I know we're supposed to zoom in, but I just want to zoom out and like make a social commentary. So please. Here we have the experience of a vulnerable person who is suffering, who has in who has incurred like a lifetime of negative health care encounters that are downright traumatic. The invalidation, the dismissal, the gaslading and now you come, you stack, stack those all up and then you come in and you're in this environment and your limbic system immediately is like, ooh, this is not gonna go well. Ooh, I don't know what it is yet, but there's some vibe I'm like reading vibe where this is not really the one for me. But like I can't walk out because like I've kind of learned these rules that I can't walk out of encounters because I've only been here for two seconds. But like, you know, you knew your wise limbic system knows and sounds the alarm and that happens to so many people, but they don't. Like, it takes so much like work, create so much work. And I think for the people that I take care of, like part of community with other people doing this because you almost like insulate yourself against the gaslighting when your reality has shifted through connection with other people because you know your experience is real, you trust your own experience and someone else's appraisal of your experience no longer matters because like it's clear that they're wrong. So anyway, I just wanted to comment on how that process is so like so much a part of interacting with the healthcare system.

A (11:46)

Unfortunately, there were definitely some moments in that post appointment experience where I thought to myself, I really want to reach out to Dr. Hauser and ask their opinion on how to move forward because you just get so defeated. I obviously wanted to respect your time and energy and the fact that you're in Vermont. But like I do think so many people get to that place where it's just like I really don't know what to do anymore. Like I've tried everything.

C (12:16)

Because why we. You know when you mentioned the tool that all brains belong created, the long name is the everything's connected to everything. Improving the healthcare of autistic and ADHD adults. The shorthand is all the things. Because in our practice mostly all the people have all the things. And by all the things, I'm talking about this constellation of intertwined medical problems that go together and that the standard management of Some parts of this cluster make the other parts worse. And so you really have to look at this big cluster. And unfortunately we have a mainstream healthcare system that is fragmenting all the body parts as though they are not like one human. This tool that's freely available, we really just wanted to put the power back in the hands of the people because you can go through that and learn quite a bit. Um, there's tools that can help you, like, have a conversation with a doctor who may, who. Who like, doesn't know anything about this. It's still. It's really trying to bridge the double empathy problem by like, here, it's written for doctors. Print out this one page. Not the 40 pages that go along with it, but this one page. Hand it over. Conversation is bridged, hopefully. And there's tools that people can access on their own. Things that you don't need. You know, you can, that you can access on your own. There are. Oh, oh, oh, oh. Having a lens to understand what's happening, to understand how like a swallowing thing is connected to a sleep thing, which is connected to long Covid, which is connected to a restless legs. And like having a lens to be like, oh, this is a thing that people know about. It's a thing that's known.

B (13:47)

I think, first of all, I don't think I realized how in depth your resources were. And I'm so excited to now go like, figure that out and, and add those links everywhere because that, that sort of resource people ask me for all the time of like, I want a page that helps me advocate, that I can give to my doctor. Train of thought. Come back. It swam away. Oh, nope. It swam away.

A (14:09)

Is there any chance that your chain of thought was that we were mind melding and nodding at the same exact time with the same exact experiences that Mel was naming? I don't know. That's what my thought was.

B (14:19)

I was not having that thought. It was. It was more content based, but I feel like that's like par for the course. Last time we had Mel on too, we were both like nodding ferociously.

C (14:31)

Yeah. Whenever I'm like, you know, with, with Neuropin and like, you know, doing the mind melding thing, I like find that I get like my, my. My cervical spine, like gets all out of whack because I'm nodding so much. I love that.

B (14:46)

So I used to be like a, like perpetual nodder as a masker. Like, I would just like, even if it didn't make sense, I was just like nodding constantly with the conversation more organically When I'm like engaged and excited and try not to interrupt with my excitement so I just channel it into nodding. Okay. So not to make it about me, but I'm gonna make about me. So long Covid. Like long Covid fatigue. And for me like I had chronic fatigue basically. Well probably my whole life and. But especially after having kids. And I went, I've kind of done the same thing as Patrick where like I hop between western doctors who are fragmenting in the naturopaths but I'm like, I'm not sure I fully trust you. But I went to a naturopath and he tested my cortisol levels, showed me a graph. He's like you in the. I was 33. He's like, you have the cortisol of an 85 year old woman. Like you just are making like very little cortisol. So I actually even went on some hormone support at that time. Ended up not loving how it made me feel. But I do think it was probably helpful anyways. Chronic fatigue. Right now I'm at the point where I'm like I'm. I want to focus on gut issues because actually I did the oats test. I don't know if you're familiar with that or not, but I recently did, did that which was really helpful for me. And it gave me a like okay, I can. This all is so overwhelming. I'm going to zoom in on like one little thing. And the oats test was helpful cuz it gave me like concrete feedback and, and the psychiatrist I met with who kind of went through my results for saying how like you know, even if you're doing a lot of supplementation, it's, it's not really helping because you've got candidia and like gut overgrowth so it's not absorbing it. So right now I'm in middle of like a, a protocol to help with Candida, if I'm pronouncing that right and gut overgrowth. And I know leaky gut is an issue for a lot of us. So that's my starting point. Partly because I have interest in it and it feels concrete enough. But is that, I guess I'm curious when there is all the things, how do you help people like zoom in on like where do we start?

C (16:57)

Yeah. And it's interesting, there's as part of the All Things project in the clinician management guide which is freely available to all clinicians and non clinicians. There's a part in that that like really begins where do you start? And I think it really for many people, you know, there's not like, it's not like one size fits all. For many people, you can't zoom in until you zoom out. So, for example, learning about a part of the immune system, for example, called the mast cells. Mast cells. M A S T is a type of immune cell that is your first line of defense. And you have mast cells in every body system. And when the mast cells recognize something that they detect as a threat, they sound the alarm. And. And about one in five people have something that is off about their mast cells. And that could look like the mast cells reacting to something that's not a threat, that like, shouldn't be a threat. Or they react to something that is a threat but has like a really, a big response. And like, not to like, you know, like, like if I get stung by a bee, I definitely want my mast cells to react. I do not need to be in anaphylaxis. I do not need that mast cells. It was not necessary. So too big a response or reacting to something that, like, I don't know, the vibrations while I'm driving my car, the physical movement of that, like for some people, that really triggers their mast cells or some light changes in intensity, Not a threat. Not sure why they're reacting, but they're reacting anyway. So that is really common. And so, you know, if you sometimes without zooming out and saying, all right, I got to figure out what are my mast cells reacting to? Because I could take all the medicines and supplements and fancy tests that are not covered by insurance, and I can do all the things, but if I'm reacting to the temperature of the room, well, that would have been a lot easier to change the environment rather than change me. So I think that can be an approach, a starting place, really understanding the immune system. Because when your immune system is off, that puts you at greater chance of having imbalances of things. Like you're mentioning Candida, which is a type of yeast and bacterial overgrowth in the intestines. So these things are all connected. And so it's like you zoom out, you find a big picture. You kind of like a detective and figuring out what are the things that, that, that cause your immune system to sound the alarm. So I would say, like, at the highest level were like immune system and nervous system and they cross talk. And so if you are in a situation where your autonomic nervous system is sounding the alarm all the time because of, you know, any number of reasons, like the, like the folks you support, you know, so not any Number of reasons. But the autonomic nervous system sounding the alarm communicates to the mast cells to flip their lid. And so now we have like. Like they're setting off each other. And so you, again, you can, like, you know, be dealing with your cortisol and you're this and you're that. But, like, like, the fundamental basis for many people is to consider, like, what is my nervous system reacting to? What is my immune system reacting to? And then I can zoom in. That was like, a really long rant. I'm sorry.

B (20:29)

Yeah, no, I love that. That's so. That's such a helpful framework. So. So, like, one of my children has pretty significant pots, and so that. That seems like that would be a classic example of. With pots, the alarm system is always going off because the autonomic nervous system is just. Okay, okay. What? Oh, I know what I was gonna ask. So I, I have, like, tried to wrap my. My brain around mass cells. And I, like, I've. I've gone to, like, I've bought like, workshops and I've, like, listened to a lot of podcasts, and like, my brain is just, like, struggling to fully get it is there. So in. In thinking about becoming a detective of our own lives, which I love that framework, by the way. Like, I would imagine the activated mast cells probably have, like, every person's going to experience it pretty differently. But, like, are there certain things people can look for of, like, that might be a mast cell that's flipped its lid? Because I know for me, I feel like I would struggle to know, like, what's fatigue, what's hyper arousal from stress, what's mast cell? Like, I don't think I, Even with the training I have for understanding my inner world pretty well, I don't know, know that I'd be able to, like, tease that out.

C (21:47)

Yeah.

B (21:48)

And I think, like, some of the.

C (21:49)

Work that, that, that we do is around. Do I need to make that distinction? Is that important? Or has the healthcare system brainwashed me to think that I have to know what's my mast cells and what's my nervous system and what's this or that we are an integrated system. And when I have a flare of my all the things, I have found that it's helpful because I have all the things, I have found that it's helpful to be like, yep, my all the things is flaring, and then my toolkit of all the things management is addressing all the things. And so it may look like a combination for adapting the environment. You know, for example, if you Know, it's a. It's a hot summer day. You know, I am completely intolerant of heat, so I have to change the temperature, but I can't. It can't be cold and it can't have changes between hot and cold. So, like, my biggest life upgrade this summer was I got a remote control for the air conditioner in my office. And when it's getting like a little bit too cold, I shut it off. And then I have this like, nice. Like, this is perfect host air conditioner. Temperature is the thing for me. And then. Oh, God, it's not again. So it's all day long of that. So that. But medicines and supplements and figuring out, you know, are there some dietary triggers? You know, many people, for example, being mast cells, being really sensitive to gluten, dairy. Not that you want to, like, be on the rabbit train of like, cutting out all your food because then you don't get enough nutrition, which also pisses off your mast cells. There's that. But then also, you know, it may feel like I have digestive symptoms, but I'm also like, breathing. I'm like swallowing the air. So what's in the air? Is it the pollen? Is it the mold? Is it. You know, so maybe I don't have the. You know, many people don't have the privilege to like, change their living environment or like, remove the mold or whatever. And it's playing a role. So maybe I need to figure out how to access an air purifier. And like, that intervention alone might make a significant difference in. In my management. But it's like this toolkit of all the things that I can, you know, like, like rib up or, or. Or rip down. But it also is. It's like, it's a. It's a long game because the life cycle of a mast cell is six months. So you might make a change. And you. You're like, but. But this doesn't do anything. Well, it's. It's really. I really might have to give it some time.

B (24:27)

The life cycle of a mass cell is six months. Can you unpack that a little bit more? Like, what that means for us as bodies?

C (24:35)

Yeah. So I think what that looks. Let me think about. Patrick, you're laughing, and I find I'm interested in your. In your, in your layer, in your laughter.

B (24:42)

I was curious about that too.

A (24:44)

I'm just always tracking Megan and how Megan's saying whatever they're saying. And I. They started giggling when they said in our bodies. And I thought, that's funny. And I should start laughing now. And I think I'm also potentially ordering on delirium of not sleeping for days post Italy trip. And I think I don't have a good answer.

B (25:05)

Can I make a comment about that?

A (25:07)

Sure.

C (25:08)

So, you know, you're, you're changing time zones, you've got a sleep disorder, you've got all the things. You know, there's a part. So if you go to the all things project, there's a part that has like, it's not an exhaustive list, but a list that shows examples of many of the conditions that are part of all the things and the different systems. And one of the things that is really common in our people is melatonin deficiency. We don't make enough melatonin. And what's really interesting about melatonin is it does other stuff besides regulate your circadian rhythms. So, you know, some people end up, you know, taking melatonin to help with their jet lag or their insomnia or whatever, and, or they end up taking too much and their brain's like, what even is that? I've never seen that before because I don't really make any of that stuff. So it's like, low doses are actually more effective than high doses for a lot of people. But I say this because melatonin has some other really cool properties. It is, it's a free radical scavenger. So like your waste products in your body, they're supposed to get, like, cleared. When you have all the things, you often don't clear them. Melatonin helps you do that. Melatonin also, you know, so, so, so anyway, fast forward. There are people, for example, who have like, really bad small fiber neuropathy. Their nerves are like, shredded and frayed at the, at the ends, and that might impact fingers and toes and, you know, the far end part of you. That wasn't really a good way of explaining that. But like, you know, I think about this as like, fridge shoelaces that are going to be most, most likely to happen in your. In things that are furthest away from the center of you, like your toes. Melatonin is an awesome intervention for small fiber neuropathy for, for, for many people. And you'd be like, but, but I, you know, it doesn't help my sleep. Well, it might not help with your sleep, but it might help with your pain. And it may help with, like, you know, your balance. It may help with, you know, your ability to feel comfortable leaving your home. So anyway, I just wanted to. The jet lag thing made Me think about melatonin and I don't even remember the question you asked me. Megan, you try again.

B (27:14)

Yeah, I was asking. I'm interested in this idea of, like, the life span of a mast cell is six months. And then I just. I was asking you to unpack what that meant for. For us as bodies.

C (27:26)

Yeah. It might be that I made this great discovery of the things that are pissing off my mast cells. Like, you know, like, the temperature, like the, you know, the changes in fluctuation of light, the gluten, the dairy. I might make those changes, but, like, I might still feel terrible for a long time. That doesn't mean that I wasn't on the right track. I might be, like, a little bit better. Yeah. But go ahead.

B (27:48)

That is so interesting because I feel like a lot. I've done a lot with tweaking my diet, and for me, taking out gluten has made a big impact on my fatigue. But a lot of these kind of like elimination diets are like 28 days, 30 days. But what I'm hearing, what I'm deducing from that is like, you'd actually have to change your diet for like, six months to figure out if it's working or not.

C (28:14)

Yeah. And it's really interesting because I think what. What I also, you know, hear from a lot of people is they might change their diet and think that it's like, been a helpful change. But, like, oh, well, I'm just going to like, you know, if I take a whole bunch of medicine, I feel okay eating gluten. It's like, well, if gluten is pissing off your mast cells, why are we eating gluten? Like, so it's. It's. Those kinds of negotiations are really. It's really hard. And then you layer on, like, the challenges of executive functioning, of feeding yourself, feeding oneself is like the hardest thing in the universe for me, too.

B (28:51)

So hard.

C (28:52)

It's so hard. And so.

B (28:53)

And then throw in like, arfid, like, yes. Yeah. Yeah. So, like, I actually, I feel called out right now in a good way because I'll be like, sometimes I will eat gluten actually, and I'll be like, well, I'll be tired tomorrow. Which is true. I usually am like, extra brain foggy and tired the day after, but sometimes I will. And it's weird. I used to be so good about it, but I've been. I've been like, doing this more where I will eat gluten and just tell myself I'll be tired tomorrow. But perhaps Having the long view of like, my mast cells are gonna be exposed to this for six months.

C (29:26)

Yes. The other thing I would say is like, that kind of like, you know, those like. So I relate to that so much. The idea of like the negotiations you do, like, yeah, I'll do this and I'll feel like crap tomorrow, but like, then I'll just go back to baseline. It's not when I do it when.

B (29:42)

I'm like, sick because I'm like, I already feel like crap. I might as well have some comfort food. Which is such terrible logic. Yes, I get it.

C (29:48)

I totally get that. Right. So I think a lot of people in our community, we struggle with post exertional malaise, which is the idea that any, any activity, and it can be physical activity, emotional activity, cognitive activity can induce, you know, like a worsening of symptoms. And it could feel like fatigue. It could feel like, you know, flu like symptoms or swollen lymph nodes or short throat or headache or just like that feeling of crash. And it's because. And we don't exactly know, like, there's not like one cause of post exertional malaise. But this is really common in myalic encephalomyelitis, chronic fatigue, fatigue syndrome, long Covid. It's thought to be related to, in part, the autonomic nervous system being dysregulated and not responding appropriately to stress. Stressors. I hate that, like that there's that healthcare system narrative. When you say the word stress, people think that you're just like telling them that something's in their head. It's like, no, actually your nervous system is responding to something from your environment. That's what I mean when I say that word. So there's that, but then there's also this idea of the mitochondria in your cells that are supposed to make energy. They just don't work when you have all the things for a lot of people. And so post exertional malaise is among other factors thought to be involving somehow the autonomic nervous system and the mitochondria not working. And the mast cells communicate with the mitochondria and the mitochondria communicate with the mast cells and they all communicate with each other. And it's like, really unfair. Point is, what a lot of, a lot of my patients do is they'll say, oh, yeah, I'm going to get so, so, so post exertional malaise, pem. Yeah, I'm going to do the thing because, like, I want to do the thing and I'LL pay for it later with pem. Don't do that. Don't do that. Because it's not like, yeah, I feel terrible tomorrow. And then I'll be back at baseline the next day. Like, you might be crashed for, like, weeks. This might be like a huge setback for you to just don't do it. Yeah, guilty, Patrick.

B (31:47)

Yeah, I. I used to use that. Oh, go ahead, Patrick.

A (31:50)

Just agreeing.

B (31:53)

I used to use that chart back when I worked in behavioral health. So when I was working in a medical system, the boomer bust, where it's like every time you do that, every time you, like, overexert yourself and go down, like, you go down further and it takes you longer to recover, which is. I noticed you talk about pacing systems too, on your, on your website, which is where that idea of pacing our energy. And I do think that because of our all or nothing thinking, we're even more vulnerable to that boomer bust because it feels so good when we have focus, when we have energy, that it's like. And also the like, I talk a lot about it's hard when we don't trust our minds. And I think that's part of adhd. Like, I don't trust that I'm going to have motivation to come back to this. So while I have this wave of energy and motivation, I want to keep pushing, even if it's like to 1 or 2am and it's. And so I think it's getting out of that boomer bust cycle is so much harder for us. And then there's that the pem. I haven't heard that acronym before, but I really like it. So I think we probably fall into these cycles quite a bit. That.

C (32:54)

That is so well said. I have not thought about it that way. So it's. I don't trust my mind. I also don't trust my body, and my body doesn't give me reliable signals. If my interoception is such that, like, I don't even feel fatigue when it's setting in. I don't feel pain until I'm like, in extreme pain or fatigue. Until I'm extreme fatigue, I may not feel it for two days because pen, for many people can be delayed. So if I'm trying to quote pace, it's not like, you know, definitely. It's the, you know, I'm guilty of, like, I am, you know, I feel the brain fog and I feel that I can't hold my head up, but I keep doing the thing and I know it and I recognize I Know that pattern, but it's more like I don't feel it. But I should know that this type of activity is going to crush me two days from now, and I have to keep track of those things, but I don't really have the executive functioning to be able to do that. And so I end up in these patterns. What I also hear is, you know, people who are physically doing something, like, you know, they're walking or something, they feel fine. They feel fine. So the idea that, like, I'm going to stop what I'm doing when I feel fine, why would I do that? Plus, when will I ever feel fine again? I don't know. So it's. It's. It's like all of that, but it's really about to get out of the pen. Chasing your tail cycle. You have to, like, acknowledge this boomer bust life is, like, not good for you.

B (34:21)

Yeah. Yeah, absolutely. And one thing that you named, I loved.

C (34:24)

So we.

B (34:26)

It hasn't come out yet.

C (34:27)

We've.

B (34:28)

But we have recorded it.

C (34:29)

We're.

B (34:29)

We're also recording our OCD series, and we had a guest on who talked about the suds skill, Subjective units of distress, skill often used in mental health and how for autistic ADHD people, we. We often have to. It's like, off, like a 1 to 10. How much distress are you in? We. We often need anchors other than our emotions because of alexithymia and interoceptive awareness issues. So things like, what are you thinking? What are your behaviors? What are you doing? And I'm hearing you say the same thing here of, like, you know, is the way you're holding your head like that. We often need to find these other markers outside of interoceptive, like, signals that are telling us, like, you're overdoing it. There's just so many ways that we. When we become a detective of our own experience, we often have to find different markers than the way these are classically taught. So I love that you brought that in here as well.

C (35:23)

I love your brain so much. Like, I love that you just, like, connect all the things. Everything is connected, of course. And, like, that is so awesome.

B (35:33)

Well, I love your brain so much. So we're having quite the mind meld here.

C (35:41)

Okay.

B (35:42)

I'm looking at faces, and I think we're trying to figure out where to pivot to from here.

C (35:45)

Yeah.

B (35:45)

So let's just talk about it. Where do we want to pivot to?

C (35:55)

Sometimes people, when they're so stuck and they don't know how to become unstuck and they have no roadmap for the unsticking of their, of their stuckness. They keep, they let you know, they, they keep in the same loop. They stay in the same loop.

B (36:18)

That's me. That's what I was. That's what I was. I think articulating in the episode that we just recorded is like, I've been stuck in this loop of fatigue and then social isolation, but then like workaholism. Cause it's the one area I feel any kind of competence and I'm, I'm stuck in that loop as much as I try to, like I'm gonna walk a few times a week or I'm just, I feel so stuck in these loops.

C (36:42)

So.

B (36:42)

Yeah, you've just, you've just described me.

C (36:44)

Well, I mean it too, right? So. But one thing that has really helped me like significant amount is learning about cognitive pen. So, you know, I, I've actually pretty. So I, I've, I've had long Covid. For almost two years. Um, I'm, I'm pretty okay about physical pacing. It took a, it took a while. But the, you know, the, the, the pacing protocols that begin with like really understanding what is your baseline. The baseline is half of what you think you can sustain. So if, for example, I feel terrible after a 45 minute Zoom call, well, I'm going to try a 20 minute Zoom call and I'm going to stop regardless of how I feel. That is finding baseline. And you commit to baseline. You commit to baseline. And I was kind of shocked that like following the protocols actually work. It's hard to follow the protocols, but if you do them, and again, you need like a certain amount of agency, autonomy, privilege to actually have control over the circumstances of your life. So, you know, you're caring for young children. You are, you know, you have, you work for someone else and they tell you what to do and you don't have the kind of safety of relationship to be like, I'm sick and this is what I need to do. Right. So, so, but committing to that baseline, even for short periods of time, can really help people increase their baseline. So that now I can tolerate a 45 minute zoom without getting brain fog. But it's like, you know, following those kinds of patterns. Helpful. But when I learned, and I just gave you an example of cognitive fatigue, but I should have given you an example of physical fatigue. Like if I'm fatiguing after two blocks of walking, that means that I can only walk half a block because, because I have to walk half a Block home. And now that's one block which is half. That's like as complex math that I can do in my head. But anyway, like, that is committing to baseline and then pacing is. I stop after a certain amount of time or a certain activity. I'm not relying on interoception. It's just objective. It's like what you were describing, Megan. But, but the cognitive part is hard because if it's not something concrete, like a zoom call that I kind of know when it started and I kind of know what's on my calendar when it ends, kind of not. But I don't feel time. So I can't pace myself based on time unless I have, you know, really an intention to set up, you know, an external thing like a timer. And I hate that stuff. But like, when I'm working by myself, like, I'm not interacting with a person. I'm just like, doing my work. That is when I drag myself into cognitive pen because I really don't notice and I really don't feel it. And two days from now, I feel really terrible. And now I can't work at all. And the I, I, I wish I, if I can pause so I could source a tribute.

B (39:46)

Yeah, yeah. And as you pause, I'm just gonna associate. Like, I love this idea of finding baseline and committing to baseline. First of all, I just love that language. That's a really helpful, concrete thing. I'm actually going to experiment with that. And then after you find your reference, I want to talk. I'm going to throw a hard question at you, but did you, it looks like you found it.

C (40:05)

I did. I did. So I heard a presentation by Dr. Lucinda Bateman from the Bateman Horn center, who described that when someone has, gets pem, it's kind of like a sunburn where the only thing to do is like, you know, symptomatic treatment of your sunburn and then like, don't go get another sunburn. Stop it. Right. So. And again, takes a lot of privilege to be able to actually not exert yourself physically or cognitively or emotionally. Like, that's, there's like most people in the universe can't actually moderate that. They, their life circumstances dictate how they expend energy.

B (40:45)

Right. I appreciate you naming that aspect of privilege. I think that's so important to this conversation because, yeah, it's like I'm, I'm forced to go back out in the sun and work because that's how I make my livelihood. And then it's sunburn on top of Sunburn on top of sunburn. Yeah. Yeah. So here's my question I was gonna throw at you. The other idea I've been playing with a lot is this idea of, like, I've been thinking about monotropism a lot. So that kind of deep, singular focus. It's a place of joy and pleasure for a lot of us to be able to, like, deeply, singularly focus on things. In my newsletter recently, I've been playing around, though, with this idea I'm calling defensive monotropic mode. I realized that I was defensively going into monotropic mode to escape my life because my life felt so overwhelming. And so I want to know. There are times where, like, I'm working on revisions to a workbook right now. And like, yesterday, I think I did six hours, and it was like, time. Where did time go? And I, for the most part, I did stop when I was starting to kind of fatigue out, but for the most part, I experienced that as restorative. So, like, how do you hold the tension, or do you hold the tension of, like, cognitive PEM and monotropic, like, restorative, monotropic experiences?

C (42:00)

Oh, I don't think that's a hard question for me because that's how I spend my whole day is, like, talking about that, right? So it's. It is a. It's a dynamic tension, and just, like, transparency around that is like naming the thing and being around other people who name the thing. And so same same way that, like, I might actually enjoy, like, I love talking with you both. And then I'm going to crash hard because I get, like, you know, dope, a sparkle and glee, and then, like, boom. Right? So. So that. That is true. It is. It is both. And, like, you know, I feel like I've spent the majority of my adult life, like, learning to name the both of, like, most things, right? So I think this is just part of that. There are things that feel really good that will still induce Pam, and that sucks. And so the idea of, like, moderating the thing that I love or moderating the thing that has some kind of, like, you know, benefit to me, whether I'm escaping my life or I am trying to change the world or I'm helping a patient or I'm whatever ing, it's still gonna make me crash. And I need to own that and decide how I'm gonna manage that moment by moment.

B (43:18)

I like that. This reminds me of something. A clinician and one of. She's in the learning nook, and she comes to our clinical Calls she talked about capacity is real because we were talking about, like, kind of neurodivergent therapy, burnout and all the things.

C (43:33)

And.

B (43:33)

And she had this amazing mantra of, like, capacity is the real thing. And it reminds me of kind of like, baseline is real, and that we have to start with that as truth. Like, capacity is real. And then we can talk about these other tensions and these other things. But so often I think we. And maybe it's part of, you know, again, going back to my, like, manic defense idea. Maybe that's part of the defense is like, I don't want my capacity, what it is, to be real, so I'm going to override it and pretend like I don't have limits 1,000%, right?

C (44:06)

So, like, I don't think it was even before I got sick. I truly did not know that I had a finite capacity. Like, it wasn't on my radar. Like, it's just like, yeah, people have a finite capacity. I don't. Like, there's no limitation to my energy, to my time, to, like, whatever, you know, I'll just make more of it. So in many ways, it really sucks that my mast cells and my mitochondria are, like, colluding for me to understand the reality of life, that every human has a finite capacity. But if that's what it's going to take, that's where I am right now. And I think that if your colleague wants to put their capacity is real on a T shirt, I will buy that and wear it every day.

B (44:53)

Yeah, I'll. I didn't say her name because I wasn't sure, but I'm sure I'm. Her name's Miranda. She's a brilliant clinician. And I think she'd. She'd be. I think she'd be okay with a shout out, but, yes, I will. I will relay that to her that she should put that on a T shirt. I do think it would be a great T shirt. Patrick, I can't locate you. Where are you?

A (45:15)

I'm just. I'm thinking about what both of you just said. So. So not trusting our brains to come back to this thought, not trusting our bodies to give us these signals, recognizing that two nights ago, I've been, like, dressing to make pages for the agent that I signed with for the book that I'm writing. And my wife is out of town, so I naturally feel like I should just be able to write and write and write and write. And then I started to notice my head, like, nodding like this as I was writing. And I was like, no. And then like, shake it off because when am I going to have the energy to really focus all my energy on the thing that I'm doing? And now fast forward two days later. Maybe that's where I am at. In addition to the pouring rain and 60 degree weather is kind of what I'm realizing and thinking about as we're sitting here.

B (46:05)

Like you're literally in PEM as we're all talking. Yeah.

A (46:09)

And also like post Italy summit, like post all of my retreats and summits coming to an end as of a week ago for the year. Like I think way beyond pem. But yes, definitely in that state for sure.

B (46:23)

Well, that's interesting. I've always thought about that collapse. Like, you know, at the end in college, like at the end of a term there'd be a collapse. And I always thought it was kind of psychological. Like my body knows I can now collapse, but like now I have a framework of pem and. Yeah, I see, I see you. You're nodding med mel.

C (46:40)

Yes, right. And so it's that I think that the neuroimmune systems are really good at protecting us and they work really hard to sound the alarm and get our attention. And I think that on my journey of spending my whole day in life thinking and talking about this, I have started noticing their communication earlier, which allows me to rebound out of chem sooner as opposed to like I don't even notice, I don't even notice that I am dropping my head or like I don't notice it until I'm finally collapsed. I can't function. So that is for many people that is part of this journey. So you know, you and like, you know whether it is the, you know, I don't, it's the I don't have capacity. When am I going to have energy to manage my energy. I love that expression, Patrick. I love it so much. Or like even the, you know, like, like the pda, like, you know, how dare you. Mitochondria, you know, like, like that kind of stuff is real. And I'll show you. Like, like actually accepting reality is really hard because I really want it to not be this way. And it really is this way. Although that's also an ancient.

B (48:05)

And this is where we get into the wheelhouse I'm most comfortable within, which is there is psychological work to this, which is, I think a lot of it is processing grief work of coming to acceptance of limits to be able to actually build a life that works for us. And then also of course Privilege ties into that as well. Yeah, I, so I'm remembering when I, when I did work with that natural pass and he was like, you've got cortisol of an 80 year old. I really enjoyed hit training back then. And one of the things he said, cause I was confused, I was like, how can my cortisol be this low and how can I do this? He's like, the reason I think you like it is cuz it's like you're squeezing the very last drops of cortisol out of your adrenal glands. And so it feels good because you, you actually have that. But it, but then it's really hard on your body. And I, and I've thought about that several times in the last year or two. I was like, I think that's also my relationship to work is I, I go into things that are stressful because they activate my sympathetic nervous system, which gives me like a sense of energy. But it's in, but it's in this way, in this kind of unsustainable, unhealthy way of getting that energy right?

C (49:11)

And like just, just living on that, like living, living on that and like having another one before you crash. And that, that is not sustainable. But I think what we see here, because our, our, our medical practice at Albert belongs is really, it's really about like community driven healthcare. You know, really, really just trying in many ways to operate in ways that are good for all humans and really that focus on community, people connecting with other people, navigating similar challenges. Not only do they shift their understanding of their health and their health care and their bodies and their brains and all of it being one integrated system, but they shift their narrative of themselves. So shifting out of that, I'm broken. All the things that we support people with, doing it in community makes so much sense. Giving people a place to belong, to become whatever their, their, their future now, now, now looks like connected with other people in the context of their reality. And they do get better, they do feel better and they also still are having to be aware of their neuroimmune systems in ways that they weren't before.

B (50:27)

This makes me think of social baseline theory. Have you heard of. Okay, no.

C (50:32)

Tell me everything about that or tell me like whatever you want to fit in the next four.

B (50:35)

Yes. So it's really interesting. Well, okay, it's really interesting research but I also like, I feel like there's this thing that happens when white researchers research something that like indigenous communities have known for thousands of years. And like look, we have an MRI to show it. It's fact. So I did. I love the research. But also I'm like, okay, yeah, indigenous cultures and knowledge have been telling us this for thousands and thousands of years. But it's the idea. So they did a bunch of. Of studies. So for you might have heard, like the pain study, where someone is in an experience and they're given like a small kind of zap, essentially, and if they're holding the hand of a supportive other, they actually perceive less pain. Or also where they're like looking at a hill that they have to climb up and they're perceiving how tall do you think that hill is? And if they're standing next to someone, and I believe it wasn't even necessarily someone they knew, but if they're standing next to someone, they actually perceive it as less tall than if they're standing alone. What's really interesting about this research is the researchers kept trying to figure out what is turning on when you're with another person. That's. That's being supportive. They realized that nothing's turning on, that our brains are default set to be social, to socialize, to draw resources from other people's systems. And so it's more like in Western life, we are not accessing something that our brains are assuming is there versus turning something on.

C (52:06)

The.

B (52:06)

The power of that turning on versus turning off was much better articulated by the researcher. But yeah, social baseline theory, I think, is a really compelling kind of research and theory for understanding how we heal together. And we, like we are created to be systems in relation.

C (52:29)

That is beautiful. And I think such a way of wrapping all of this up in that, you know, like as humans, we are, you know, our body systems are integrated, everything being connected to one another. We are one whole person where, you know, everything is connected. And we have this interwoven. We, We. We are intended to be in an interwoven network of other people. And I think, you know, absolutely, that's the path to health.

B (52:59)

Feel like that is a wonderful sentiment to. To end on. I love that. I love that. That's the pathway to health. Yeah. Collective healing. Yeah, absolutely. Well, Mel, where can people find your work? Or is there anything else that you'd like to share with our listeners?

C (53:19)

Absolutely. Yeah. So Operators Belong has a number of free resources and free virtual community programs. So I'll share links to the Everything's Connected to Everything Improving the Health Care of Autistic and ADHD Adults Project. I will also send you a link to a free community education program called Brain Club that meets every Tuesday night at 6 Eastern, 6pm and where it's like everyday brain life with applications to health and employment and relationships. And all the archives dating back the past three years are freely available on the website. I think those are, those. Those are two resources that I think, like, you'll find a lot of content about this topic that we talked about.

B (54:02)

Today that's such an incredible and generous gift that you give to our community. I just. Yeah, thank you for the work you do.

C (54:11)

Thank you for the work you both do.

A (54:14)

I want to be perceived right now.

C (54:17)

By the way, like, on every, on every episode that I listen to of this podcast. When, like, that comes up, like, it's just like, like that was, like, it makes me feel like an insider that I like. I like, expect something that somebody that one of you say. And so anyway, thanks for doing that.

A (54:32)

Yeah, thanks for eliciting that response. Great conversation. This has been fantastic for everyone listening. I think this is a great way to wrap up our Chronic Health collection. And we will link everything in the show notes so you have access to all of Mel's information. Thank you so much for coming on and making the time.

C (54:53)

Thank you so much.

A (54:55)

And to everyone listening to Divergent Conversations, new episodes are out on Fridays on all major podcast platforms and YouTube, like download, subscribe and share. And goodbye.

B (55:14)

Hey, it's Dr. Neff here. This season, we are clearly talking about autistic burnout, a topic that neurodivergent Insights has covered extensively. So if you would like more resources to supplement your learning, we've put together a page where we've curated all of our autistic burnout resources, freed and paid resources. We have lots of articles on autistic burnout. We have a upcoming free email course. It's going to be released soon. We have workbooks on autistic burnout. So if you'd like to check out our resources again, both free and paid, you can go to neurodivergentinsights.com burnout-resources. It's linked below and in the show notes. I hope you don't need these resources, but if you do, they are there for you.