Loving Someone with Baffling Behaviors {EP 99}

Robyn: Last episode, then, episode two in this series, I interviewed my husband, who, about three years ago began his own journey with the symptoms of and ultimately the assessment and the diagnosis of and the treatment of a neuro immune disorder. I really wanted to offer to y'all- we really wanted to offer to you all, he feels very similarly to me that, we wanted to give you a kind of an inside out look of the mind and the experience of somebody with, yes, with a neuro mood disorder. But more than that somebody who feels at times completely out of control of their mind and their behaviors, and the baffling behaviors that can result from this a level of nervous system dysregulation kind of regardless of if it’s neuro immune disorder, or history of trauma, and toxic stress or other nervous system vulnerabilities. So I really encourage you even if the idea of a neuro immune disorder doesn't relate directly to your family or your situation. I think if you're listening to this podcast, you almost certainly have a relationship with somebody with nervous system vulnerability. And last week's podcast in which my husband was so brave to come on as a guest, I think I can give you just a really lovely inside out perspective on that experience that can be so helpful to you and your relationship with your child. 

Robyn: And so today, in this third episode, in this three part series, I thought I would come on and do a short solo episode. Now, short? You're right, are y of my episodes are ever short? But an episode on what my experience has been as the support person as the caregiver, as somebody who loves and is deeply committed to somebody with, at times pretty intense, pretty baffling behaviors. And what that experience has been like for me. I know that my experience as a partner to another adult with these symptoms is not the same as what it is to parent a child with these symptoms. And I think there's space for it to both be not the same and also for, those of you listening, who are also the support person, the caregiver is somebody who loves and is committed to these children. I think there's also a place for there to be a lot of overlap. And my hope for you in doing this series, but also doing this series from this space of vulnerability from both me and my husband's experience. My hope is to help you feel seen, help you feel known, help you have one more voice that tells you that you're not crazy here. I hate to even use that word. I've tried really hard to take the word crazy out of my vernacular, because of its ableist- the ableism that's inherent is it in it, but that's also the language that I hear people saying, they say things to me, like, “am I the crazy one here?” or they say things like, “this is making me feel like I'm the crazy one”. And so again, you know me, I try to kind of strike the ‘both and’ I think there's space for both to be true. I think we can all work hard to try to remove the word crazy from our language, especially if we're going to use it pejoratively, while also acknowledging that, right now, that's the word a lot of people use to describe what their experience is to be in relationship with somebody with big, baffling behaviors, and to be in relationship with somebody that they're deeply committed to. Right? Somebody that we can't just like, set a boundary and say, “no, I'm not going to be in this relationship anymore’, which is what we would do if somebody else in our life demonstrated these behaviors, right? So that's my hope for today. We'll see, we'll see how this goes. Alright?

Robyn: When I thought about, like, what was the perspective I really wanted to bring to you? How can I make this worth your time? The first thing that came to mind for me, is how often in the past three and, three and a half years, I have thought to myself, Oh, my gosh, if I didn't understand the neurobiology of behavior, I don't know how my family would be okay. I don't know how we would have gotten through this. I don't know how we would have survived. I don't know how my husband and my's relationship would have survived. I don't know how my husband and our son's relationship would have survived. No- like having spent the entirety of my, definitely my adult professional life. In some ways, I was on this pursuit for understanding the neurobiology of behavior since I was very young. If I hadn't been on this, like lifelong pursuit and lifelong journey, I don't know if we would be okay right now. And that is a very humbling thought, because the vast majority of people who are on this journey of being in relationship with somebody they love and are deeply committed to, and somebody who has got behavioral symptoms of some sort of illness, right, Some sort of disability, some sort of nervous system vulnerability. Right? The vast majority of people don't have the backgrounds that I do, obviously. And I returned to that frequently like, oh, my gosh, my understanding of the neurobiology behavior is what is getting us through this. How is everybody else doing this? Right? And it's not just my understanding of the neurobiology of behavior, but my unique commitment to the truth that I think has emerged from my understanding of the neurobiology of behavior, my commitment to relational neuroscience, and interpersonal neurobiology, and polyvagal theory, and, and all of those things that, you know, I work so hard to just integrate together. All of those theories have landed me on a core belief for me, which is that all behavior makes sense, right? That no behavior is maladaptive and that all true selves are lovable.

Robyn: And for me, what that means is, I can trust that when people are in what I would call if I was going to use my most, you know, neurobiology hat. When we’re in a ventral vagal state, when our ventral vagal complex, is engaged in online, when our our brain is in charge, when we are regulated, right? That when we are feeling connected to ourselves and each other, when we are experiencing felt safety, our behavior is what we could just say, good, right? It's not perfect. We're all human. But all true selves are lovable. Right? And so when we are in our true self, right? When our true self is feeling safe, and connected, and has opportunity to just shine, and be, you know, kind of what's leading the way. That- those are behaviors that align with, you know, being good, being- wanting to be in relationship with that person. And, y'all, if I didn't believe that, in my core, one, I wouldn't be very good at my job. And, but two, I don't know, like how my family would have made it. Right?

Robyn:  So I think in a way in the last, you know, three years of what's- what has happened to my family, you know, has, in many, many ways, helped me get even more connected to my work. I feel like I'm in better alignment, I have more passion, I'm more lit up at work than I really ever have been. And I suspect that's largely due to this very real, very lived experience now that means every single day, every single moment of every single day, I am called to reconnect with my theory. Now, I don't always do that very well. And I'm happy to tell you about maybe not all of it, but some of it. But it just keeps bringing me back. Right? That all behavior makes sense, that all true selves are lovable. So that when I was having an experience with my husband, whose behavior didn't seem to make much sense, and frankly, wasn't making him feel very lovable. I wasn't feeling very loving toward him. Right, because of some of the behaviors that were the symptoms of this underlying neuro immune condition. Right? For me to be able to come back to well, that must mean he isn't his true self right now. That must mean he has wildly dysregulated right now. That must mean he is in protection mode. And one of the places that our nervous system is determining is am I- should I be in connection mode, or should I be in production mode, right? It's- it's taking cues, it's taking information from three different places from the external world, environment from the relationship and, and from the internal world. 

Robyn: And I just had to keep anchoring back into his internal world is bombarding him with experiences of being not safe, right? Over and, over and, over, he's being flooded with information from his inner environment that says, not safe, not safe, not safe, not safe. Right? Because of the neuro inflammation, because of his own memory networks, like because of so many of the things we talked about on this podcast. 

Robyn: And, again, if you're newer to the podcast, and you're newer to some of this theory, I want you to go to RobynGobbel.com/starthere, because what I did was curate 10 podcast episodes that give you the foundation, right? The 10 podcast episodes that talk about things like all behavior makes sense, no behavior is maladaptive, talk about what felt safety is, and where we get felt safety from. I've curated those all, RobynGobbel.com/starthere. 

Robyn: So if you find yourself sort of needing to be really anchored into the theory, the way that I've needed to be anchored into this theory the last three, three and a half years personally, right, not to mention the last two decades professionally. Then I want you to go there. So as- I made kind of a little list, like what are the things I wanted to touch on, that have been what- you know, the most- the biggest parts of my own experience that could be relatable to you listening. And without question, the thing- that the very number one thing is the intense amount of loneliness. To be on a journey with somebody, one, who's like the medical community is so far behind in understanding. And that's definitely neuro immune disorder. But I really think that's all nervous system vulnerability, right? Like, how many of you are out there fighting for your kids schools, their medical professionals, their therapists, their- your extended family, to understand that their history of trauma and toxic stress or whatever it is, that's contributed to the nervous system vulnerability. That it matters, right? And the intense loneliness in that in these, you know, conditions, these nervous system vulnerabilities that aren't well known. Right? And the exhaustion of- the advocacy from that. 

Robyn: The the reality that just very, very, very few people get it, right? I'm so lucky that in- I- in my life, I have to pause and think about this. Like, I know very few people, very few people who- who have the lived experience of loving somebody with a neuro immune disorder, I have a couple of but very, very few. I do of course, know a lot of people who love somebody with intense nervous system vulnerability. And beyond that, I also know a lot of people who are just very good at being very attuned. So even if they don't get it, they can still come into that place of attunement and say, like, well, I don't get it, but I believe you and I'm here with you in it. I'm just so lucky to have a lot of those people in my life. It's probably because I'm a therapist, and so I have- happen to have a lot of friends who are therapists, right? But there's still this intensity of- of being all alone in it. Right? Because nobody gets what's happening in my family. Right? Nobody really gets it on a moment by moment basis. Nobody could, right? And- and even if they could, there's certainly a part of me that doesn't want them to, right? Like even my very best friends, my very closest people, the people that I know in my life are not judging me or my husband. There is still this place where I want to protect, kind of, both of us, from other people knowing what's what's going on, right? Like, I want to protect myself from other people really knowing, and I want to protect him, right? There comes a point where you don't want everyone in your life to know the real, intimate details of the reality. Right? Because there's this thought of like, can they handle it? Can they know that stuff and still truly not judge us? Will this change how they experience me, how they experience him? Right. And so there was a lot of protection of self that contributes to the intensity of this loneliness. And I know y'all listening, I know, you get that. I know you get that. Right?

Robyn: And then not to mention just the like- people have their own stuff going on, right? Like people are tired, they're dealing with their own stuff. I don't know one person in my personal life, who doesn't have their own very big, very hard things happening in their own life. And as- you know, as hard as we try to, like show up for one another, there just become a point where you start to worry about being fatiguing to other people. Like you’re- I started to worry about being that person who's like, well, no matter w- no matter when they catch me, I'm always not doing well, or things are always really hard, or I have so much just kind of complain about. Like, who wants to listen to this, right? People want to just talk about regular life, right? And these were thoughts I was having in my own head, right? They're not things people were telling me. Luckily, I'm so privileged in that. I- the vast majority of people in my personal life, who would ever be privy to this kind of information are people who really do want to show up, really do want to hear all of it, they don't want me to protect them. Right? But I know that's not true for a lot of you, that the people in your life, they actually really don't want to know everything. Right? That they really just can't handle it. Right? 

Robyn: And- it- and- the bottom line is, is that everybody's got their own thing that they have to deal with. And it at times was starting to feel really uncomfortable that I was the one who was always having all this hard stuff going on. And sometimes I started to wonder like, how have I created this? Am I like, like, how have I invited this level of chaos into my life? Like is this in some way my own fault? Right? I know, those of you listening can relate to that. That that sometimes starts to feel like wait a minute, this is my fault? Am I doing this? Right? It starts to make us question this level of intensity, the level of chaos, the level of baffling behavior, starts to make us question our own connection to reality.

Robyn: That's what people are really saying when they say, am I the crazy one here? Right? What they're saying is, can I trust my own experience in reality? And it is very alarming and disconcerting to wonder if you can't. And then there's the also reality that we- my husband and I and probably a lot of you listening to you, we went through this intensity, we went through this health crisis, we went through this, you know, understanding of this neuro immune experience during a world pandemic, right? So everyone's super stressed, right? Nobody's really at their best, especially at the very beginning of the pandemic, right? That- that made support really hard, of course. We were all just trying to figure out how to get through the pandemic. We started the pandemic with health vulnerabilities and our family. And so that has existed from the very beginning. And then very quickly, we were thrust into this neuro immune world as well. And realizing we also have that vulnerability in the middle of this pandemic. Right? And so, we had this fear, this really intense fear of getting COVID because of the- just immune system vulnerability, that that my husband had even before we knew about the neuro immune stuff, right. So we had that. And then when we realized the neuro immune stuff and how, you know, as we started to understand more about COVID and how that's impacting the body, that, you know, COVID- contracting COVID would have been an ultimately was very hard. It wasn't devastating when my family ultimately contracted COVID, like we were worried for a long time that it could be. And for a long time, it would have been, right? That if we had contracted COVID, prior to my husband kind of coming out on the other side of all of this, I do think it's very likely that how that would have impacted the neuro immune aspect would have been pretty devastating. Luckily, when I- finally- my family, and I did finally contract COVID, my husband's health situation with regards to the neuroimmune was reaching some level of stability. And so while it certainly he experienced a pretty serious setback, with the COVID, the COVID itself was mild, but the after- the impact of- of the neuro immune kind of exacerbation, due to the COVID was hard. And we knew that it would be, and we worked really hard to avoid that for a really long time. 

Robyn: So yeah, like going through this health crisis in the middle of a pandemic, and figuring out how to navigate relationships with folks that weren't being as cautious with regards to the pandemic as we were. Having it that impacts on relationships in pretty significant ways due to our own pretty serious vulnerabilities during the middle of this pandemic. Anyway, my rambling point, and all of this is that just added this whole new layer of loneliness. And that might not be true for everybody listening, but I suspect it's true for a lot of y'all listening. That the increased isolation, the increased kind of volatility, the increased stress on relationships that the pandemic, you know, contributed, just added this whole other layer to figuring out how to support and love somebody with a nervous system vulnerability that results in very stressful, very confusing, and at times, just, frankly, very bad behavior.

Robyn: See, I think that the loneliness is really the number one- the number one thing. And I realized that even as I say, that being the number one thing, how much privilege that I have, and that I have a life full of- of people who work really hard to kind of show up for me and my family in this very attuned way. We are very, very lucky with that. I also, you know, when I really stop and take a breath and think about my experience, just my own experience and not my experience in relationship to- to Ed's experience. Is, you know, I have to kind of come face to face with the reality that this has been my own experience of trauma and toxic stress, right? That being- loving somebody who has a condition that will- very- most people don't know how to treat, that is an experience of toxic stress. But being in relationship with somebody who's got an condition, a disease, an illness. That one of the most significant symptoms is mental health. And then, of course, mental health and how that relates to behaviors are huge, right? 

Robyn: To be in relationship with somebody who's nervous system is stuck in a chronic state of protection, in high level watchdog brain. Right? In that kind of, you know, ready for action or, you know, that- that watchdog brain that saying back off, back off, or that watchdog brain that's saying attack, attack, attack, right? To live with somebody who lives in that level of chronic watchdog brain. Yes, that has an impact, like trauma and toxic stress on my own body. Right? Dr. Perry says toxic stress is about stress that's unpredictable, prolonged, and repetitive. And yes, the whole family had a stress that was unpredictable, prolonged and repetitive. And certainly Ed did. Right? That was his experience. But- But my experience also, on the receiving end of the symptoms, was just toxic stress is unpredictable, prolonged and repetitive, right? I was weary. It impacted my body in the way we know, trauma and toxic stress does. Okay, it's been hard to attune to myself and to attune to the truth of that because at the end of the day, my experience hasn't been anywhere close to as bad as his. And it's hard not to compare that, right? And as I would start to feel, feel pretty- just struggle, you know, as I was starting to struggle, it was hard to allow that to just be true without like this new, kind of, voice that would jump in- this new protector voice that would jump in that would be say, like, say something like, “your- your struggle is nothing compared to his”, right? 

Robyn: And I had to find moments where I could be brave enough to attune to the fact that- that this isn't a struggle competition, right. This isn't a trauma and toxic stress competition. That it can be true that my husband's experience has been devastating and also be true that mine has too. And it doesn't have to mean that they match, or mine has been as bad as his, because it's completely irrelevant. But there's this way that we- we minimize our own experience, that then contributes to additional trauma and toxic stress. And I know there's so many of you listening, that can really relate to that truth. And so what I want to offer you is that it's not a toxic stress competition, right? That, you know, in my family’s was significant, and yet, doesn't even come close to matching the experience of many of my listeners, many of the clients that, you know, I know people whose lives are full of significantly more trauma and toxic stress. They don't have near the resources- or the privileges to navigate the experience of trauma and toxic stress. And that can be true, and that it's also true that that my family's experience was valid. That my experience is valid. And that's true of yours, as well. 

Robyn: I think one of the other pieces that has been just, you know, contributed to the challenge of all of this is my own self judgment that would creep in. You know, sometimes, I would wonder, if not only could at times, I wonder if this is in some way, like my fault? Like, am I somehow causing this, not the actual neuro immune disorder, but the symptoms. Like the behaviors we were seeing? But also I would have- I could have a lot of self judgment on like, what if I'm wrong? And it isn't that all behavior makes sense, and that this behavior is a symptom of the state of his nervous system? What if this behavior is just who he is. It's just his character. And I made a terribly bad choice and a partner, and my brain can go to kind of like, well, you've made your bed somehow you have to figure out how to lay in it, right? I can- I have experiences in my history where that tends to be kind of where I can go. And I'm starting to get really dysregulated. It’s a very possum brain thought for me. And then that, again, that kind of brings it back onto, like, somehow this is my fault. Right? And- and just a lot of worry that somehow I was excusing this bad behavior. And that's why it wasn't getting better. 

Robyn: I actually even saw at one point, a new therapist briefly, who suggested something really similar to me that I needed to set better boundaries. That I needed to be clear that this behavior was unacceptable. And I remember looking at this person and being like, nobody in my family is confused that this behavior is unacceptable, least of all, my husband. He is not confused about that. This is not about setting boundaries. This is about figuring out what is wrong so that we can pursue the medical treatment necessary to calm the inflammation in his body, that has leaving him in such a state of protection brain and such a high state of activation. That his body, and his brain is on attack. That he actually believes sometimes that he is in danger, not only from his own body, but from his life, from his relationships, and that we are the one causing, you know, the stress for him. Right? 

Robyn: That his brain could get that confused because of the flooding of all of the implicit data of danger. Right? Would just flood him and then his attack watchdog would think I have to take over and be in charge and believe everybody and everything is a danger. That's where the behavior was coming from. That's what we needed to stay focused on. Right? And so to have even another professional in my life suggests that somehow, this was just about me not setting good boundaries, or my husband not having high enough boundaries set with him. And if I just set higher boundaries, his behavior would change, which couldn't be further from the truth. He has an illness. And we needed to stay focused on treating the illness. And attuning to what my experience was, is that regardless of what's underneath it. It at times was still very, very, very bad behavior. And I needed a professional, who I could feel like wasn't judging me for not being able to set boundaries, or my husband for just being a jerk, right. But to- to not come at me from that perspective, but to still resonate with me that even if this is a symptom of a nervous system dysregulation, the behaviors are still devastating. And I needed help with that. And it was hard to find that. It was very, very hard to find that. Even for me, even with somebody who knows a lot of people who have that perspective. It was- it's been very hard to find the support that I needed for me that didn't want to, kind of, quickly come back to something like just set better boundaries. And then that sort of gets in your own mind. And you're like, Well, maybe that's true, maybe I do need to set better boundaries, maybe I am just letting myself get walked all over. Maybe this isn't a disease, maybe this is a character. And I've made a terrible mistake, right?

Robyn: And then taking a breath, and re-finding the people who could give me an accurate mirror, which is no- all behavior makes sense. All to yourselves are lovable. Right? If we want to change the behavior, and we do, we have to stay focused on what the real problem is. And that is the nervous system dysregulation. And somehow I wanted to do that as often as possible, while still letting my husband see through my eyes that he wasn't bad. Right? Because I know how important that is, I know how important it is for these people who are struggling with their behaviors, to be able to land their eyes on somebody who believes they aren't bad. Somebody who can hold on to the truth that, hey, these behaviors are bad. And yeah, we got to find a way to change that. But these behaviors aren't bad, because you're bad. These behaviors are bad, because something bad is happening on the inside. And we want to stay focused on that. And I knew how much my husband needed me to stay anchored in that. And I knew how much I needed me to stay anchored in that. So I had to find the people who could help me stay anchored in that while also still validating how bad the behavior is. Because I think it's easy to go kind of the other direction with it too. That when we get really connected to behaviors as symptoms of nervous system dysregulation, it can start to kind of feel like we're excusing it. And simply since we know that those bad behaviors can impact us. Absolutely not both are totally true. We can know that the behaviors are a manifestation of what's happening in the nervous system. And also know that the behaviors are having a very real impact on- on us. Those of us who are on the receiving end of those behaviors. Both gets to be true. 

Robyn: And y'all we have a kid [laughter] so, there were times, lots of times where I had to figure out how to reconcile that. Right? Like the impact all of this was having on- on, not just me, but our son. Now I think, ultimately, again, we got kind of lucky with that. Some of it was the age of our son. He is a teenager, but also how much of a foundation that we had with him before going through this really big crisis. Right? Me and my husband him have exceptionally close relationship. My husband's been largely a stay at home dad. And they have a very solid, very anchored relationship. And as a family, of course, we are very committed to the belief that all behavior makes sense, right? And that's a culture in our family. And so that's something my hus- my son also holds in his body. And so that was, you know, I think very helpful for how this whole experience has impacted him. 

Robyn: We're very connected, emotionally connected, and attuned family. We talk about everything. I think that's, you know, for better or for worse being the kid of a therapist, and two people who highly value this kind of emotional intelligence. And this way of being attuned, connected relationship with one another, is that we had a lot of skills already at our disposal to talk through and to be present with what was really hard. We didn't have to shy away from it. I could talk very openly with my son about what was going on. What was going on for his dad, what was going on for us, what was going on for me, what was going on for him. And- and we, we had that foundation. So when we entered into the serious crisis, that foundation, I think, really got us through that. 

Robyn: But without question, there was still these moments of like, this is the life I'm giving my son. And how do I reconcile that? Like, how can I be okay with that, what do I need to do with that? Thankfully, as a family, one thing we're very good at is rupture repair, because we have lots of ruptures. And even with neuro immune disorders, we're a- we're a family with a lot of intensity, and a family with a lot of feelings, and a family with a lot of opportunity for lots and lots of ruptures, which means a lots of opportunity for lots and lots of repairs. And we were good at that before this crisis. And we've continued to just really lean into rupture, repair, rupture, repair. And also knowing that- that even with the repair, this has had an impact on my son. Just like those of you who have multiple children, you know, your- your- your children's siblings are impacted. And there's nothing that we can do about that. Right? It is hard to be the sibling of a child with a special need, and a special behavioral need. Right? It is hard to be the child in a family where there is a serious health crisis, and where that health crisis contributes to mental health and behavioral challenges. It is hard. That is my son's story. That is his journey. And it will be his story. Always. Right? And so coming to- coming to having some grief about that for me. Right? While also not getting too consumed by that because we all have a story. We all have a thing that's hard. This is my son's thing that's hard. It's not the only thing. It's one of them, it is our family's thing that's hard. All we can do is the best we can inside that hard. And- and the way that we approach that is by being really, really, really good at rupture repair.

Robyn: I mean, without question, this has impacted my relationship with my husband, right? We've- we've had a very, very strong solid relationship. We've- we've earned that because there's been a lot of hard in our relationship. And we both work extremely, extremely passionately at being able to do that hard as well as possible, right? We're both active in our own therapeutic and emotional growth. Right? And so we've- this is not the first hard thing we've been through though, I probably could say that, to date, it's the hardest. And that's really saying something actually, if I kind of told you what all the other things were, but we'll save that for another podcast another day. It's been the hardest. And there were absolutely times I very much remember exactly even where I was standing. The first time I wondered if we were gonna get through this. Right? For a long time as like we're gonna get through this will be okay, well, we'll figure this out. This is really hard, but we'll figure it out. Remember the moment I wondered, are we actually gonna get through this? And then my next thought was, if we do, at what cost? Will we recover? Like will- will our relationship ever recover? Will we ever go back to the way that we were? 

Robyn: And I think that the reality is like, that's not even possible. You can't go through something like this and go back to the way things were. And I also am now far enough on the other side of things to know like, yes, our relationship will recover. It is recovering. It's actively recovering. We are both doing the work that we need to do for that to be true, because it's not just him that needs to do work. It's me that needs to do a lot of work. Right? At, you know, what has happened the last couple years and how do we repair and how to recover? And then how do we kind of renegotiate like what our relationship is now? Now that this is part of our relationship's story. How do we just renegotiate all of that, and how do we grieve? Like what- what probably has been lost and will never exactly come back. Right? And that's been really painful. Knowing that, you know, with any major change, there are things that can't ever return. 

Robyn: Because we aren't the same people, right? Like, even if we did get whatever, quote unquote, that relationship was back, neither of- neither him nor I are the same person at- at this moment, right? So, yeah, we can't ever go back to that, because we aren't the same people anymore. And so rediscovering how to be in a new relationship with each other. Now, like I said, I do think that we're- we're fine. We are so lucky. We had such a strong relationship. We've worked really hard on having a really strong relationship. And we're both exceptionally tenacious people. And so I do no longer worry that we won't make it. And I do think there has been a cost. And I don't think it's been as significant of a cost as I was worried about in the middle of the depths of the worst part. 

Robyn: And that now- now that things are starting to be a little better, and we're starting to kind of redefine, like, what is our- what is our, kind of, new normal, right? There's- there's just a whole, there's a whole new journey, right? Like once you get through crisis, and things start to get a little bit better. Sometimes it's almost like this new crisis has emerged. And in a way, the crisis in the last couple of months has been more mine. Or like, I've really struggled more the last couple months, as he is kind of stabilized a little more, it's like, you know, the three years where I couldn't have a crisis, like my crisis came to the surface in the last couple months. And so again, we're just constantly figuring it all out. 

Robyn: And then figuring out the new layers of grief that come along with it. And at times, we're very elegant, on this journey, and at times, it's an absolute mess, total mess. I do swear words, but I don't want to because then I have to mark the podcast as explicit or I have to bleep them out or something. And that's just, that's just no fun. So I'll just say it's sometimes it's elegant, and sometimes, it's a mess.

Robyn: And I also say all of this while holding awareness of the depths of my privilege. At- at times it makes me not even want to speak out about it, because I'm afraid that the depths of my privilege make this very unrelatable journey. And maybe it does, I'm not- I'm not sure. But you know, I have privilege in that I've- I kind of speak medical, right? Like, I've been an ER social worker. I've been a hospital social worker. I did a lot of medical research, social work, medical research, and graduate school. Like, I know, a lot of medical professionals. I speak medical. I can navigate that system. And I can kind of hang in those discussions when they start to, you know, get to medical, right? Like I can kind of hang in them. I know how to navigate the system. Right? We're relatively financially stable. And- and frankly, when- I am self employed, I'm an entrepreneur. And so when we were facing a new, like, unbelievably large expense, I kind of just thought to myself, like, well, alright, what new course do I have to put together? Like where, you know, basically, when you're self employed, you think about like, okay, how do I do more work? And while there is only so much work I can do, there is still a lot of privilege in not living on a fixed income, and being self employed, and having some of those options, right? 

Robyn: When this new treatment, our eyes bugged out, you know, at how much we were going to spend, right? I had a place to turn to. And, sure, we still made a lot of hard choices that were all about money. Right? Like and sometimes that's just so mind blowing. Like, we have to make medical choices based on money. Right? And so yes, we still had to do that. But we also had a lot more flexibility, and a lot more ability to say yes to certain things. And I know like so many families have, right? 

Robyn: We have a supportive family. Right? I have connections in my field. I got into, you know, doctors and professionals because I had referrals. And I don't mean like, I don't mean, like we got ahead of the line. That's not what I mean. I mean, I know about professionals because of my professional contacts, right? Like, I was able to kind of seek out my community and say, oh, who's the best, you know, for this? And then, you know, I could just kind of call that person because I knew enough to call them. I mean, there's a lot of privilege in that. As a family, we didn't go through what's the research, like, 10, 12, 14 professionals before getting a diagnosis. In fact, you know, we sought out a physician, with expertise in just integrative psychiatry. That's all we wanted when we started this journey. We didn't know we were facing a neuro immune condition. We just wanted integrative psychiatry, and we got unbelievably lucky that that physician also has significant expertise in exactly what my husband ended up needing expertise in. I was just like, complete and total luck, right? 

Robyn: The rest of our medical professionals in our lives just sort of like smile and nod at us, right? Like when we have to go to just the regular doctor and talk about everything that's happening. They don't say anything negative. And I think part of that is the privilege that I hold as a mental health provider, right? That medical professionals just sort of like smile and nod at me, even if they don't really know what we're talking about. They aren't combative about it. They aren't critical about it. They don't minimize it, you know? I think I get a lot of- I think I get a lot of pass, because of being a mental- mental health provider. We've been very fortunate in so, so many ways. 

Robyn: And it's still been devastating to our financial experience. Right? It's been devastating, to just the regular like day to day, you know, in our lives. Like the way that we now have to allocate our time, is, for a long time, the way I allocated my time was work or medical appointments. Right? That's changing a bit, thank goodness. But there are still periods where there's, you know, a peak in inflammation, and I have to pull back on anything that isn't work, or work, family, medical appointments, essentially. Right? And that's devastating. Right? 

Robyn: So I absolutely recognize, there's been so many- so many ways we've been so lucky. And despite that, I wanted to just share my specific experience as the support person. Because I know those of- those- who's listening, right? You love somebody, you care for somebody, you're in relationship with somebody, that you- you don't want to end that relationship. And in many ways, you can't end that relationship because they're your child. And- and that's a very, very unique place to be. To be in a relationship, that it doesn't feel like we can end. Right? And that for that relationship to be full of so much chaos, and so much strife, and still have such challenging behavior. And challenging behavior that sometimes directed directly at us. It is a very unique place of loneliness. And while I absolutely recognize that my experience with my partner or my spouse is not the same as parenting. Right now, that is my- my closest experience that I have to y'all who are listening. And I wanted to offer it up. 

Robyn: And so I hope that this episode had even just a moment in it, where you had a sense of being really seen, or really known, or just that moment of connection of being not alone on this journey. That there's other people on this journey. There's enough people on this journey that I keep showing up and making podcasts because y'all are listening. There's lots of you listening, right? And that's how many people are on this journey. And we still have a lot of people for this podcast to reach, don't we? We have so many people who don't have this podcast yet who really need it so that they, too, can have the experience of not being alone. 

Robyn: So with that, please share the podcast, right? Like let's get this podcast to everyone who needs to feel not alone. So please, please, please share it. Thank you for being an audience where I felt safe enough to do this series, and do these episodes. Thank you for being an audience where I felt safe enough to introduce you to my husband, right? To my person, my favorite person, and I knew you would be gentle with him. I knew you would hear his story. I knew you would see him. I knew you would not judge him. And then I took the risk that you would do that for me as well. So thank you for being the audience that I know I needed. Right? Because you do email me, you do message me on social media, you leave ratings and reviews, and you let me know that it's safe. So thank you. Thank you. Thank you. I hope you keep coming back. I hope you keep pressing play on the podcast, hit subscribe, share with anyone you know who needs support, and parenting a child with a vulnerable, nervous- vulnerable nervous system and big, baffling behaviors. Because the more people that we connect with, the more we're going to bring healing to the whole world. And y'all I really mean that. I really believe that I really believe we have the power to make big, big, big change in the world. Thank you. I will be back with you here next week.