Episode 73: Chronic Health (Part 4): All Brains Belong [featuring Dr. Mel Houser]
Sep 26, 2024
Show Notes
Neuroimmune systems often intertwine with chronic health and neurodivergence, leaving neurodivergent individuals grappling with things like energy management, chronic fatigue, or other long-term health conditions.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Mel Houser, an Autistic family physician, about the intricate dynamics of chronic health, energy management, and the often-overlooked connection between neuroimmune systems and neurodivergence.
Top 3 reasons to listen to the entire episode:
- Gain a deeper understanding of post-exertional malaise (PEM) and how recognizing one's limits can help in avoiding the debilitating crash that often follows overexertion.
- Using real-life experiences, understand the systemic challenges faced by neurodivergent individuals within a traditional healthcare model, highlighting the importance of self-advocacy and community support.
- Discover practical strategies and tools from Dr. Houser on identifying environmental triggers and making manageable adjustments to improve health, particularly for autistic and ADHD adults.
As you navigate your own healthcare journey, remember to honor your limits, seek out community, and advocate for the care you deserve.
DISCLAIMER: This episode is not intended as medical advice.
More about Dr. Mel Houser:
Dr. Mel Houser (she/they) is an Autistic family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She is the Founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) organization in Montpelier, Vermont that uses universal design principles to provide neurodiversity-affirming medical care, social connection opportunities for all ages, and neurodiversity-related educational training. At age 37, Dr. Houser was diagnosed as autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She is also the parent of an autistic 6-year-old, who is her guru of so many keys to the universe.
- Website: allbrainsbelong.org
- Get Connected: allbrainsbelong.org/get-connected
- Clinician Resources: allbrainsbelong.org/clinician-resources
- Instagram: @allbrainsbelongvt
- Bateman Horne Center Website: batemanhornecenter.org
Check out All Brains Belong’s project: Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults provides health education resources to support people with this constellation of intertwined conditions, as well as strategies for discussing the project with medical providers. There is also a Clinician Guide with a combination of evidence-based practice and the lived experiences of more than 100 Autistic and ADHD community members.
Here's the link to the project: allbrainsbelong.org/all-the-things
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A Thanks to Our Sponsors: Resilient Mind Counseling & Learning Nook
Resilient Mind Counseling is a neurodivergent-affirming therapy and medication management practice operated in North Carolina. We specialize in supporting neurodivergent individuals, especially Autistic ADHDers, the LGBTQ community, and the BIPOC community. For mental health therapy, we accept Blue Cross Blue Shield, UnitedHealthcare, MedCost, Aetna, and self-pay. For medication management, we accept Blue Cross Blue Shield and self-pay. We can see clients all throughout North Carolina. If you are looking for medication management services, you need to be within a 60-mile driving distance to the office in case you need to come in. All of our clinicians identify as either Autistic, ADHD, or Autistic-ADHD, or have some form of neurodivergence or are neurodivergent-affirming. We strive to create a neuro-inclusive healthcare community. You can text or call our main line to get started at 828-515-1246 or visit our website at resilientmindcounseling.com. We look forward to helping you along your healing journey.
Explore the power of the neurodivergent community with the Neurodivergent Insights Learning Nook—a neurodiverse space that welcomes all neurotypes. Our community fosters personal growth with access to workbooks, eBooks, workshops, and more. We also host body double sessions, parent gatherings, and monthly live events. Clinicians can join our special tier for exclusive resources and networking. Limited to 20 new members monthly. Enroll at neurodivergentinsights.com/membership. Scholarships available.
✨✨ Hurricane Relief for WNC communities:
This money will go to nonprofits who are boots on the ground. It will go to struggling individuals who do not have enough money for gas to get out, or who do not have enough money to provide their basic needs right now. Donate to Patrick's GoFundMe to help provide urgent aid for WNC communities affected by Hurricane Helene. Visit: atppod.com/wnc
Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
MEGAN NEFF: So, in this miniseries, we're exploring some of the health challenges that Patrick and I both live with. We're also talking about behavioral health more generally. And just as an overarching disclaimer, this is not medical advice, and if anything resonates, please consult with your personalized medical team.
PATRICK CASALE: Hey, everyone. Welcome back to Divergent Conversations. We are continuing our chronic health collection today. And I cannot really think of a better person to have on here to wrap everything up, Dr. Mel Houser, who has been a guest before. Megan and I both agree would probably be the episode that we share the most with our audience, and with our friends, and our colleagues, and honestly, anyone. The founder and medical director at All Brains Belong in Vermont, which I lived in Vermont. I can't think of how many times I thought, "I wish Dr. Houser could be my doctor." And also, the creator of the resource called All of the Things or All of… I don't know what the resource is called, I'm so sorry.
MEL HOUSER: All the Things.
PATRICK CASALE: All the Things, that thing, which I also share a lot because it's just talking about neuroimmune systems, all the interconnectedness of chronic health, and the neurodivergent experience. And, yeah, I really am so grateful that you made the time to come back on because I'm a huge fan.
MEL HOUSER: Well, I'm a huge fan right back. I'm very honored to be here. Thanks for having me.
PATRICK CASALE: So, we have just wrapped up, both Megan and I, biopsychosocial episodes, which were quite vulnerable for those of you who watched, 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.
MEGAN NEFF: 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. Like thoughts about sleep. There were some interesting psychological components that came up for you, Patrick, also around how relaxation is not associated with safety. I think there's the tendency to wake up after one sleep cycle, which 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 it's functioning as a manic defense of, like, 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 going to 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 going to start doing to try and get the cycle going in a more positive direction. So, that's kind of the context for where you're joining us in this conversation.
MEL HOUSER: Thank you for sharing that. And I think that, like, there's so many people, right, who they struggle in ways that affect literally every aspect of life, and still, you know, all the unlearning, the internalized ableism, all of it. And when it comes to chronic health conditions, we've got that health care 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. 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 more?" Without really an understanding of the neuro-immune system and how it is impacting, literally, every system in the body.
MEGAN NEFF: Yeah, absolutely, that's so well said, yeah, yeah. And how complex this is. 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, oh, 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 it honors that complexity of like, yes, these things are all connected. And so, we can't start talking about, like, how do we improve sleep as if it's lives in a vacuum because it's so interconnected to all of the things. And all of, like, our social context, like what we're telling ourselves, like our psychology, that's the part I tend to, you know, lean into, but, yeah, absolutely.
PATRICK CASALE: One, 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 neurologist is four months. Get to neurologist only to stump neurologists with said symptoms I'm experiencing for them to refer back to sleep specialist. And that is kind of the rinse and repeat cycle.
MEL HOUSER: #healthcare, right?
MEGAN NEFF: Patrick, do you want to mention, and we can cut this if you don't. But do you want to mention the $1,000 pivot to a functional medicine provider?
PATRICK CASALE: I'm so glad you said that. Yeah, I'm happy to, you know, you know me, I'm not often going to 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, 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, "Ahh"
And then, the $500 appointment just progressively got worse from there. And it was just like in my mind, as I'm experiencing this I'm like, "I know I'm about to have to pay 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 bullshit.
MEGAN NEFF: [CROSSTALK 00:10:21]-
MEL HOUSER: Would I remember about, oh, go ahead.
MEGAN NEFF: Oh, I was just going to 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, "It sounds too easy. Like, oh, no problem, we've got a vitamin for that."
PATRICK CASALE: Yep, yep. Yes, exactly-
MEGAN NEFF: So, it's like-
PATRICK CASALE: I forgot that part.
MEGAN NEFF: …that disconnect.
PATRICK CASALE: 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, you all, if anyone can charge $500 for stuff like that, you all can too. It's just crazy.
MEL HOUSER: 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, here-
MEGAN NEFF: Please.
MEL HOUSER: …have the experience of a vulnerable person who is suffering, who has incurred like a lifetime of negative health care encounters that are downright traumatic, the invalidation, the dismissal, the gaslighting. And now you 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 going to go well. Ooh, I don't know what it is yet, but there's some vibe. I'm like, reading vibe." Or, "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 like it takes so much like work, creates 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, and 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, like, that process is, like, so much a part of interacting with the healthcare system, unfortunately.
PATRICK CASALE: There were definitely some moments in that post-appointment experience where I thought to myself, "I really want to reach out to Dr. Houser 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.
MEL HOUSER: Because, you know, when you mentioned the tool that All Brains Belong created, belong 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, right?
So, 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 fight a bit. There's tools that can help you, like, have a conversation with a doctor who, like, doesn't know anything about this, and 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 where they put this one page." Hand it over, conversation is bridged, hopefully.
And there's tools that people can access on their own, things, you know, that you can access on your own. 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 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."
MEGAN NEFF: 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 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.
PATRICK CASALE: Is there any chance that train 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 if that's what my thought was.
MEGAN NEFF: Oh, it was not. It was more content-based, but I feel like that's like [PH 00:15:15] part for the course. Last time we had Mel on, too, we were both like nodding ferociously.
MEL HOUSER: Yeah, whenever I'm like, you know, with [PH 00:15:16] Neuropin and, like, you know, doing the mind-melding thing, I like find that, like, my cervical spine, like, gets all out of whack because I'm nodding so much.
MEGAN NEFF: I love that. So, I used to be a, like, perpetual nodder as a masker. Like, even if it didn't make sense I was just, like, nodding constantly during the conversation. But now it does happen 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 want to make it about me. So, long COVID. Like, long COVID, fatigue, and for me, like, I had chronic fatigue, basically, well, probably my whole life, but especially, after having kids.
And 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 S33." 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 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?
MEL HOUSER: Yeah, yeah.
MEGAN NEFF: But I recently did that, which was really helpful for me, and it gave me a like, okay, this all is so overwhelming. I'm going to zoom in on, like, one little thing. And the OATS test was helpful because it gave me, like, concrete feedback.
And the psychiatrist I met with who kind of went through my results was saying, how, like, you know, even if you're doing a lot of supplementation, it's not really helping because you've got candida and, like, gut overgrowth, so it's not absorbing it. So, right now, I'm in middle of like 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 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?
MEL HOUSER: Yeah, and then it's interesting, as part of the All the Things project in the Clinician Management guide, which is freely available to all full clinicians and non-clinicians, there's a part in that that, like, really begins Where Do You Start? And I think it really, you know, 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 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 you know, 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, 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 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 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 like imbalances of things, like you're mentioning candida, which is a type of yeast and bacterial overgrowth in the intestines. So, like, these things are all connected. And so, it's like you zoom out, you find a big picture, you kind of be a detective and figuring out what are the things that cause your immune system to sound the alarm?
So, I would say, like, at the highest level, we're like immune system and nervous system, and they crosstalk. 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 folks you support, you know? This is 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, they're setting off each other. And so, 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.
MEGAN NEFF: Yeah, no, I love that. That's such a helpful framework. So, like, one of my children has pretty significant POTS. And so, 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.
Oh, I know what I was going to ask. So, I have, like, tried to wrap my brain around mast cells. And 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. So, 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 hyperarousal from stress? What's mast cell? Like, I don't think even with the training I have for understanding my inner world pretty well, I don't know that I'd be able to, like, tease that out.
MEL HOUSER: Yeah. And I think, like, some of the work 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 hot summer day, you know, I am completely intolerant of heat, so I have to change the temperature, but 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 cool to shut it off, and then I have this, like, so, like, this is perfect, host air conditioner temperature is the thing for me. And then, oh, God, it's hot 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, mast cells being really sensitive to gluten, dairy, not that you want to, like, eat 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? You know, so many people don't have the privilege to, like, change their, like, 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 my management. But it's like this toolkit of all the things that I can, you know, like rump up or rump down. But also, it's like it's a long game because the life cycle of a mast cell is six months. So, you might make a change, and you're like, "But this doesn't do anything." Well, I really might have to give it some time.
MEGAN NEFF: The life cycle of a mast cell is six months. Can you unpack that a little bit more? Like, what that means for us as bodies?
MEL HOUSER: Yeah, so I think what that look, let me think about, Patrick, you're laughing and I'm interested in your laughter.
MEGAN NEFF: I was curious about that too.
PATRICK CASALE: I'm just always tracking Megan and how Megan's saying whatever they're saying. And 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, bordering on delirium of not sleeping for days post-Italy trip. And I think I don't have a good answer.
MEL HOUSER: Can I make a comment about that?
PATRICK CASALE: Sure.
MEL HOUSER: So, you know, you're changing time zones, you've got a sleep disorder, you've got all the things, you know? So, if you go to the All the 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, or they end up picking 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'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. And melatonin helps you do that. Melatonin also, you know, so anyway, fast forward, there are people, for example, who have, like, really bad, small fiber neuropathy. Their nerves are, like, shredded and afraid at the ends. And might, in fact, 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, frayed shoelaces that are going to be most likely to happen in things that are furthest away from the center of you like your toes.
Melatonin is an awesome intervention for small fiber neuropathy, for many people. And you'd be like, "But, you know, it doesn't help my sleep." Well, it might not stop 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.
MEGAN NEFF: Yeah, I was asking, I'm interested in this idea of, like, the life span of a mast cell, six months. And then, I was asking you to unpack what that meant for us as bodies?
MEL HOUSER: Yeah, it might be that I made this free discovery of the things that are pissing off my mast cells. Like, you know, like the temperature, like, you know, the changes in fluctuation of light, the gluten, the dairy. I might make those changes, but, like, I might still feel curable for a long time. It doesn't mean that I wasn't on the right track. I might be, like-
MEGAN NEFF: So [CROSSTALK 00:28:38]-
MEL HOUSER: …a little bit better, yeah, but go ahead.
MEGAN NEFF: That is so interesting because I feel like 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.
MEL HOUSER: Yeah. And it's truly interesting because I think what I also, you know, hear from a lot of people is they might change their diet. I 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."
So, well, if gluten is pissing off your mast cells, why are we eating gluten? Like, so it's those kinds of negotiations 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.
MEGAN NEFF: So hard.
MEL HOUSER: It's so hard. And so like [CROSSTALK 00:29:44]-
MEGAN NEFF: And then throw in like ARFID. Like [INDISCERNIBLE 00:29:47]-
MEL HOUSER: Yeah.
MEGAN NEFF: Yeah, yeah. So, like, actually, I feel comfort 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, 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 going to be exposed to this for six months.
MEL HOUSER: Yes. The other thing I would say is, like, that kind of, like, you know, there's like, so and 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-
MEGAN NEFF: And I do it when 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.
MEL HOUSER: I get. 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 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 sore 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 myalgic encephalomyelitis, chronic 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, 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, you know, among other factors thought to be, you know, 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 my patients do is they'll say, "Oh, yeah, I'm going to get…" So, post-exertion 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, so just don't do it. Guilty, Patrick?
PATRICK CASALE: So true.
MEGAN NEFF: Yeah, I-
PATRICK CASALE: [CROSSTALK 00:32:39].
MEGAN NEFF: …used to use that. Oh, go ahead, Patrick.
PATRICK CASALE: Just agreeing.
MEGAN NEFF: I used to use that chart back when I worked in behavioral health. So, when I was working in a medical system, that boom or 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… So, I noticed you talk about pacing systems, too, 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 boom or 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 1:00 or 2:00 AM. And so, I think it's getting out of that boom or bust cycle is so much harder for us. And then, there's 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,
MEL HOUSER: 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 a fatigue, until I'm extremely fatigue, I may not feel it for two days because PEM for many people can be delayed. So, if I'm trying to put peace, you know, definitely it's the, you know, I'm guilty of like, 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 it. 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 like all of that, but it's really about to get out of the PEM chasing your tail cycle. You have to, like, acknowledge this boom or bust life is like not good for you.
MEGAN NEFF: Yeah, yeah, absolutely. And one thing that you named I loved, so it hasn't come out yet though, but we have recorded it. We're also recording our OCD series. And we had a guest on who talked about this said skill, subjective units of distress scale often used in mental health and how for autistic ADHD people, we often have to, it's like a one to 10 how much distress are you in?
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, it's 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 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.
MEL HOUSER: 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.
MEGAN NEFF: Well, I love your brain so much, so we're having quite the mind meld here. Okay, I'm looking at faces, and I think we're trying to figure out where to pivot to from here.
MEL HOUSER: Yeah, yeah.
MEGAN NEFF: So, let's just talk about it. Where do we want to pivot to?
MEL HOUSER: Sometimes people when they're so stuck and they don't know how to become unstuck, and they have no road map for the unsticking of their stuckness, like, you know, they keep in the same loop. They stay in the same loop.
MEGAN NEFF: That's me.
MEL HOUSER: [CROSSTALK 00:37:10]-
MEGAN NEFF: 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 because it's the one area I feel any kind of competence. And I'm stuck in that loop. As much as I try to, like, I'm going to walk a few times a week, or I feel so stuck in these loops. So, yeah, you've just described me.
MEL HOUSER: Well, I mean it too, right? But one thing that has really helped me, like, significant amount is learning about cognitive PEM. So, you know, I've had long COVID for almost two years. I'm pretty okay about physical pacing. It took a while, but, you know, the pacing protocols to 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 work for someone else, and you don't have the kind of safety of relationship and be like, I'm sick, and this is what I need to do, right?
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 pattern's 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 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 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 really, 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 PEM 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 I wish if I can pause so I can source a tribute.
MEGAN NEFF: Yeah, yeah. And as you pause, I'm just going to 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'm going to throw a hard question at you. But it looks like you found it?
MEL HOUSER: I did. I did. So, I heard a presentation by Dr. Lucinda Bateman for the Bateman Horne Center, who described that when someone 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, most people in the universe can't actually moderate that. Their life circumstances dictate how they expend energy.
MEGAN NEFF: 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 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 going to 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, "Where did time go?" And 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 attention, or do you hold the attention of, like, cognitive PEM and monotropic, like, restorative monotropic experiences?
MEL HOUSER: Oh, let's see. 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 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 way that, like, I might actually enjoy, you know… 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, that is true. 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 PEM 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 going to make me crash. And I need to own that and decide how I'm going to manage that moment by moment.
MEGAN NEFF: I like that. This reminds me of something a clinician and one of… She's in the Learning Nook, and 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. 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 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 overwrite it and pretend like I don't have limits.
MEL HOUSER: 1,000%, right? 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 mirror of it.
So, in many ways, like, 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.
MEGAN NEFF: Yeah, I didn't say her name because I wasn't sure, but her name's Miranda. She's a brilliant clinician. And I think she'd be okay with a shout-out. But yes, 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?
PATRICK CASALE: I'm thinking about what both of you just said. 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 stressing 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 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.
MEL HOUSER: Like you're literally in PEM as we're all talking?
PATRICK CASALE: Yeah. 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.
MEGAN NEFF: Well, that's interesting. I've always thought about that collapse, like, you know, in college. Like, at the end of a term, there'd be a collapse. And I always thought it was kind of psychological, of, like, my body knows I can now collapse. But like, now I have a framework of PEM. And yeah, I see you. You're nodding, Mel.
MEL HOUSER: 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 like spending my whole day and life thinking and talking about this, I have started noticing their communication earlier, which allows me to rebound out of PEM sooner, as opposed to like, I don't even notice that I am dropping my head. Like, I don't notice it until [INDISCERNIBLE 00:48:16]function.
So, for many people that is part of this journey. And like, you know, whether, you know, 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, you know, like, the PDA, like, you know, how dare you mitochondria? You know, like, that kind of stuff is real. And I'll show you, like, actually accepting reality is really hard because I really want it to not be this way, and it really is this way. Well, that's also a dynamic connection.
MEGAN NEFF: And this is where we get into the wheelhouse I'm most comfortable with, and 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.
So, I'm remembering when I did work with that naturopath. And he was like, "You've got a cortisol of an 80-year-old." I really enjoyed hit training back then. And one of the things he said because I was confused. And 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 because it's like you're squeezing the very last drops of cortisol out of your adrenal glands. And so, it feels good because you actually have that, but then it's really hard on your body."
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 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 this way, in this kind of unsustainable, unhealthy way of getting that energy."
MEL HOUSER: Right and just living on that. Like, living on that and like having another one before you crash, and that is not sustainable. But I think what we see here because with our medical practice at All Brains Belong it's really about, like, community-driven healthcare. You know, 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, you know, shift their understanding of their health, and their healthcare, and their bodies, and their brains, and all of it being one integrated system, but they shift their narrative of themselves. So, like, shifting out of that, you know, I'm broken. You know, like all the things that we support people with, doing it in a community, you know, makes so much sense, giving people a place to belong, to become whatever their future 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.
MEGAN NEFF: This makes me think of social baseline theory. Have you heard, okay-
MEL HOUSER: No, tell me everything about that, or tell me like whatever you want to put in and explore this.
MEGAN NEFF: Yeah. 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 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 studies. So, 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 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. 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 like, we are created to be systems in relation.
MEL HOUSER: That is beautiful. And I think such a way of wrapping all of this up in that, you know, like as humans, 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 are intended to be in an interwoven network of other people. And I think, you know, absolutely, that's the path to health.
MEGAN NEFF: I feel like that is a wonderful sentiment to end on. I love that. I love that. That's the pathway to health. Yeah, collective healing. Yeah, absolutely.
PATRICK CASALE: [CROSSTALK 00:54:00]
MEGAN NEFF: Yeah. Well, Mel, where can people find your work? Or is there anything else that you'd like to share with our listeners?
MEL HOUSER: Absolutely. Yeah. So, All Brains 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 Healthcare 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 6:00 Eastern, 6:00 PM. 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 two resources that I think, like, you'll find a lot of content about this topic that we talked about today.
MEGAN NEFF: That's such an incredible and generous gift that you give to our community. Yeah, thank you for the work you do.
MEL HOUSER: Thank you for the work you both do.
PATRICK CASALE: I want to be perceived right now.
MEL HOUSER: By the way, like on every episode that I listen to of this podcast, when like that comes up, like, it makes me feel like an insider. And I, like, expect something that one of you say. And so, anyway, thanks for doing that.
PATRICK CASALE: 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.
MEL HOUSER: Thank you so much.
PATRICK CASALE: And to everyone listening to Divergent Conversations, new episodes are on Fridays on all major podcast platforms and YouTube. Like, download, subscribe, and share. And goodbye.
