Support Strategies for Chronic Pain and Invisible Illness With Brianna Greenspan

Hey there. Before we dive into the episode today, I wanted to share something from my heart as we head into Thanksgiving. So I just wanted to say how grateful I am for you. This time of year always reminds me how powerful gratitude really is. And it's not just the big shiny moments, though those are awesome. It's the quiet ones, the hug you needed, the friend who checked in, the people who show up for you when life gets messy. I'm incredibly grateful for you, for you listening to the show. every message you send me, every story you trust me with. So, thank you for being here, truly. Because this season is also about giving, I wanted to share something important, something exciting. Next year, I'm turning the Unstoppable Success Summit into an event with a mission far bigger than us, bigger than I could imagine. A portion of the proceeds will go directly to Call to Freedom. And this is an organization who helps women who are survivors of human trafficking and trauma.

I wanted this to be—

this event to be more than inspiration or just strategies. I wanted to create real lasting impact. So I wanted to take the generosity, the love, and the kindness of this community and turn it into something that changes lives. So as we head into Thanksgiving, my heart is full. Thank you for walking this journey with me, for believing in this mission, and for being a part of something unstoppable. I'm grateful for you. Happy Thanksgiving. And now let's dive into the show. Welcome to the Amberly Lago Show, where grit, grace, and joy connect you to unstoppable success.

Hey there. Thank y'all for tuning in this week to the show because I have one of my good friends that I have reconnected and I really wanted to bring her. This was actually supposed to be a solo cast and then I reconnected with my friend Brianna Greenspan and I was like, you know what? We, in honor of National CRPS Awareness Month. I got to get you on the show, especially because she has her new book. If you're looking at this on YouTube, you can already see— oh, she's holding hers up too. It's The Book of Questions: Living with Chronic Illness. And she is a bright light in this world. And I originally connected with her back in the day on Clubhouse and got to meet up with her at like 6 in the morning and start my day with her. And how Elrod just reconnected. Yes, I know Brianna. I haven't talked to her in so long. And we got on the phone and had just the most amazing conversation. I'm like, no, no, I got to get— we got to share this on the show because I know a lot of you have been diagnosed with either chronic illnesses, CRPS, but those of you also out there who know someone. And so this conversation is not just if you've been diagnosed with a chronic illness or pain nerve, anything like that kind of disorder. But to help you with your everyday, because pain is pain and I think it demands to be heard. But there are so many ways, and I always say that pain and joy can coexist. And Brianna is a beautiful example of that. Y'all, she has such an incredible background. We're going to get right into it. She's a resilience strategist. She is a wellness educator, author, chronic illness advocate, and she's devoted to transforming personal adversity into service, education, and hope. And she lives by her reminder, and all, for all to be, that feel like you're unseen. And I know I felt invisible and I wanted to disappear for a long time. So I love that you say, keep shining your light. The world needs your light. And so, Brianna Greenspan, love you, my friend. Thank you for being here. Welcome to the show.

Thank you. What a gift and privilege it is to spend time with you. You are such a bright light in the world. And when I think about that, keep shining, the world needs your light, I think about you and so many others that are actively turning the challenging cards that we've been dealt into the best possible outcome that we can in each moment.

Oh, well, I remember meeting you and on Clubhouse, and I got to hear your voice and just We had a room and I had my own clubhouse. And that was back in the day, right? When we were kind of stuck at home.

Yeah.

And you had this light about you. And even though you have been through so much and still go through struggles, it's not like everything's all is just perfect every day and you're feeling energized every day. You shift your mindset and the way that you are, even through your words, even before we started recording. Before we dive in, I just want to kind of get, let people know like where you have come from. This isn't something I was diagnosed with CRPS when I was 38 years old. You were diagnosed with so and had so many health struggles and challenges since you were a kid. And so I want people to know that you look, yeah, if they're watching you on YouTube, they're like, Oh, she's beautiful. What is she? She must be a doctor. She might— no, one of the things that I really love about you is that I like to learn from people about resilience who have been— they're in the trenches. They have dug their way out. They've climbed their way out of that. And so can you take us back into where you were and when you knew as a child, something's wrong, something's not quite right?

Oh my. And thank you. You know, my favorite compliment is like, you look so healthy. I'm like, I live for that. Thanks. I actively work at it.

Yeah.

And when I take my, like, when I, to take a step back and share, um, I was born with a complex chronic illness. And so I never really stopped crying until I could talk. By the time I could talk, I was constantly complaining about like my feet, my eyes, my skin. And I was saying weird things like sheets hurt me, or, you know, like it aches to step or whatever those things were. And then it was I was constantly like saying my stomach hurt and throwing up and just a variety of like nonsense, not that big of a deal symptoms. But then they kept happening and then that involved doctors and then eventually specialists. And over time, you know, as I became 3, 4, 5, 6, I just went to a lot of doctors and had a lot of medications and had a lot of different therapies and assistive devices. And I thought that was totally normal. And then There was this moment in first grade where they had, I don't know, some kind of like award ceremony about perfect attendance. And I had, I had this thought, how could they go to the doc? How, how is it possible that they have perfect attendance? When do they fit in the time to go to the doctor?

Wow. Like you didn't even realize, you thought that was the norm. Like everybody, that's just how they lived. And the thing is, Brianna, I talked to so many, I have so many friends. That are, you know, they've been, that they live with this CRPS diagnosis and taking care of your health. It's a full-time job. I mean, it, it really ought to be like a, for everyone. But when you live with a chronic illness, it is a full-time job. There's always like, I was in bed last night, just aching, hurting from traveling. I just flew in last night. And I'm thinking, I need to fit time in to get back to physical therapy. I know how to work out and I know how to move, but because I stand on one leg all the time and travel and all these things, my body is out of whack. And I'm thinking, I really thought, does anybody else get in bed and think of like, okay, when is my doctor's appointment? When is my next physical therapy appointment? All those things. And probably not. I hope they don't. But it is a full-time job.

Honestly, many people do. I am now on this other side of I'm not disabled. I don't have a handicap placard. I don't live at home.

I don't want one, and no offense to people who do, but my husband keeps saying, Amberly, you need to get a handicap placard. And I'm like, I don't want one because I want to keep moving and I want to keep walking.

It's a fascinating one. So I had a handicap placard. To take you back, so I was born ill, um, and things were just like odd and weird and off. And then that exacerbated. And then from a neuroscience perspective, I really fundamentally understood that that was different when the social aspect kicked in. And so in 3rd grade, kids started letting me know that I was different and that wasn't well received. And they started an I Hate Brianna club.

Oh.

And That taught me that everything was wrong about me, and that I would rather be any other girl in the history of the world than sick girl. And so I started to create these other personas of myself, which was a fascinating thing in retrospect because I also consistently got sicker and sicker and had more and more symptoms up until when I was in middle school. I then had a full-on back brace that went. all the way down one leg and that I wore 23 hours a day that I walked with a limp, not 'cause I had one, but there was literally like a metal bar. And I, you know, got to use the elevator at school and I had a backpack on wheels and you can imagine like what this is looking like. And that escalated and escalated and escalated until I had a surgery the summer between freshman and sophomore year of college that was supposed to be like a great, great stepping stone for the next chapter of my life of all of these pains and challenges related to my back and sleeping and walking and breathing. And that did not happen. It got excessively worse.

Wow.

And I lost the ability to walk. And that is when, you know, I was in my darkest time of my whole life. I was in a cycle of despair. I thought nothing would ever work because nothing had ever worked. I tried all these different things and I did have a temporary handicap placard during that time. And they, and I parked in a handicap spot and they had this golf cart that took me to class and it was like a whole thing. And I was very debilitated mentally and physically. And I was 100% for a lot of those years in that victim mindset because I really couldn't imagine how was this happening? Why me?

Yeah.

Why? I just, it really was a shocking situation. And then ultimately I had to fly home to see a neurosurgeon as the follow-up appointment to that. surgery. And I kept saying like, something is wrong. Something is very, very wrong. It hurts to breathe. It hurts to move. It hurts to be alive. It's significantly worse than before. And they kept saying I wasn't trying hard enough, do more physical therapy. Like, we'll see you in a couple months. So, this was a couple months and I fly home and I tell my parents, if the neurosurgeon doesn't have any good answers, do I even wanna live anymore?

Hmm.

And that was ultimately a very depreciative question.

Yeah.

And, um, I woke up the next morning getting ready to go see the neurosurgeon, and I got a phone call from my roommate in college telling me that our best friend had OD'd and died. Mm-hmm. And basically he had failed a test and he had gone out partying and he had taken some prescription medication and he didn't wake up. So now I am emotionally distraught on top of in physical disarray. And I go to the neurosurgeon and he tells me that he doesn't have any good answers for me. He's like, I can upgrade your handicap placard from a temporary one to a permanent one, which he did. And I had a permanent handicap placard for many years after this moment. And then he was like, I can upgrade your steroids. Uh, steroid shots. And he then prescribed me the medication my friend had just died from.

Hmm.

And it was right then that I literally asked a different question. I said, is there anything else out there that can help me with the way that I'm suffering? And if so, where can I find it? And ultimately that was like the, the moment that my entire life changed. It was the catalyst for my searching journey and my openness to say like, Maybe there are things out there that I haven't found that could ease the way I'm feeling that aren't the things that they just offered. And that's really like up until that point, things had just been so challenging. And I think that that was a big turning point and things started to evolve in a really beautiful and strength and resilience-based way from there?

Well, it was sometimes when we're going through something really hard, like, I'm sorry you lost— I'm so sorry you lost your friend to an overdose. And it's hard to imagine that there can ever be a blessing that can come in any type of catastrophic event or difficult situation. But I feel like the Blessing for you was it shifted your perspective in that moment and put you in the driver's seat of, oh, well, what can I do? Instead of just whatever the doctors are telling me, whatever surgeries, here, let me, I'm going to be this way for the rest of my life. You're thinking, well, there has to be something better. There has to be more than life. And I think it's just stopping to ask the right questions and putting yourself as the victor of your life and no longer the victim. And so I love that that was your turning point. When you were going through all these surgeries, first of all, that surgery, did you have— having to wear that brace, was that for scoliosis as well?

Oh my, it was actually for this thing called spondylolisthesis, It's like a bilateral pars defect, but there's a fracture at my L5-S1 that is incredibly painful when it is upset. And that caused a real series of challenges that was just so aggressive by the time I was 10, 11.

Wow.

And progressed and progressed and progressed. So there was that brace and then there were other braces and then there was so much physical therapy and many different modalities that we tried in order to lessen the pain and strengthen my body.

Wow.

And all of that time, there were lots of labels and diagnoses and medications and assistive devices, but I still wasn't genetically diagnosed with Ehlers-Danlos until I was 24. I got all those things. Nobody got it. The eye doctor was talking about the eye thing and the, you know, the foot doctor was talking about the foot thing. Like nobody was really putting it together.

Like the root cause, the root cause. And, um, in so much of your journey to become the victor of your life and be this bright light that you are, it really did start in your mindset.

Yes, absolutely.

And I believe that it starts with the moment that you shift your perspective and your mindset. And so for so many people out there that might be struggling, and they are, and I know a lot of people that are, and when I get on the phone with particularly one person who struggles, has had back surgeries and lives with pain and now using a walker, It has in the past all been just complaining and dumping and negative mindset. And I mean, I have sent him meditations, I have sent books, I have talked, and it feels like I'm talking to a wall. So now when I get on the phone with him, I say, tell me something good. From the moment I get on, the first thing I do, and I feel like it flips the script for him. Oh, Something good, huh? Let me think about that. And I feel like you're the same way because even the minute we got on the call, you were like, what's like, what's the best thing that's happened so far this morning? And I love that. And I start my day with gratitude. How do you start your day?

Oh my gosh. I, I want to respond to so many things. And the first one is surrounding the neuroscience of wellbeing. The moment that I discovered that we get to write the story in our mind, I wanted to write one where the therapies worked. Where I felt better, where I got stronger, where more was possible, where I expanded my capacity, where the things that were 100% not possible in my life were now in the realm of possible. And what's transpired is that type of mindset with the actions that back that up over decades has allowed me to be in this vantage point where you were like, oh, you know, you look so healthy. Like, That's a shockingly wonderful compliment and blessing that I'm consciously aware I had thousands and thousands of practice reps to get to this moment. Not just being able to see, but being able to sit, but being able to articulate, but having the clear mind instead of the mind fog. There's so many elements that had to be made possible for this moment.

Wow.

To be possible. And so, when I think about my mindset many years ago, I didn't know that there were certain things like questions or certain language that could help me. And so, my first coach and best friend and like the greatest gift in my entire chronic illness journey, a guy named Brian Danik, and he was the first therapist that I worked with After I asked that question. And we went through a 378-hour therapy program together for me to learn how to walk up a flight of stairs without any medication or assistive devices. And that was a very hard thing. And it showed me what's possible. And we, it was a compilation of aqua therapy, physical therapy, myofascial release, craniosacral therapy, and some mindset coaching. And the first time I met him, He really called me out in this way that nobody had ever done before. He said, I want to talk to you alone before we start our therapy. And I had asked that question, is there anything else out there that can help me with the way that I'm suffering? And if so, where can I find it? And this guy appeared. And also I still had this deep-seated belief system that nothing would ever help because nothing has ever helped. And that there was like, that I would suffer forever until I didn't make it. Like I was very confident in that.

Yeah.

And I meet this guy. And he's like, hey, I wanna talk to you. Do you think that I can help you? And I was like, no, and absolutely not.

Wow.

And he said, do you think there's anything else out there that can help you? And I was like, no, definitely not. I've tried everything. And he said, have you ever considered that you have already decided that nothing will ever work because nothing has ever worked? And you have already mentally written off anything that you may ever consider or attempt in your future.

Mm-hmm.

If that's your guaranteed narrative. And I was very surprised and startled by this because no one had ever told me anything like that. No one had ever told me that the world operates from a depreciative narrative. So we're searching for what's wrong or what's broken or the challenges. And so if you were to ask me, how are you? I could tell you 5 things that didn't work out that well this morning, including a whole bunch of symptoms I might've privately told you about, 'cause we're We're friends like that. However, I say something like, what went right today? Or what was the best thing? Uh, what was the best thing that happened before right now? What was the best part of today before right now? And that invites us to start searching.

Mm-hmm.

So when you just said that, that's what you do with your friend. Of course you do, because now you're orienting him. You already know what he's going to say, but there's a lot of good that may have happened that he, he, he would've just naturally omitted, like eliminated from the narrative because it's not part of what we process and wanna share. It's fascinating.

Mm-hmm.

So I'm constantly searching for the full picture because my entire first 20 years was only one half of the picture, which was very dark and highly complex. So that's the first thing I wanna say about neuroscience. Like, you really got me, girl, because my mindset is the thing I work on the most.

Yeah, and it's a constant thing, right? I think a lot of people think I'm the most positive person in the world, and I'm not. I work on it because my default is to go to the negative. I just got back in town from speaking at an event, and I can get off stage and pick myself apart instead of saying, oh, I hit that point, and that person came up to me afterwards and said that that helped them, and they were in tears. of gratitude, and it's like I will go to the negative. And so I've shifted the way that I do things and try to do it quickly to focus on the good. And it is a practice every day, sometimes moments at a time. And it's amazing how after a while you can quickly— and you start to see the good when you focus on the good. And an example of that is, so I got in last night and And the first thing my daughter says is, Mom, can we go to the store? There's a certain store. They have this kind of candy that I saw on TikTok. And I'm like, yeah. So I get in the car, we go, and I am hurting from flying. I'm exhausted from little sleep. And I'm like, I am going to hunt for the good. I'm going to go do some joy spotting. The first thing that I see when I walk in the store is— I actually took a picture of it. I took a picture of it because it was a little— look, here it is. I took a picture.

Joy.

The first thing I see. And so when I start to see and feel the joy, and when you look at someone and you're looking for the good and you smile at them and talk, it just starts to shift everything. So I love that you said that. And I also love that you say that That, wow, nobody ever called you out like that about like, so you don't believe that anything is going to help. And I will say, you know, the last time I had that, so I've had the spinal cord stimulator trial twice. The last time I had it, I, it took me 10 years to try it again because I had such a horrible experience the first time around. The second time around, it may have, it was worse. I don't know if it was worse. It was bad. And I think part of it, and one of the reasons it was so bad, is because I had so much fear going into it and a little bit of doubt and not as much trust. And when it's like that, how can it possibly work? If you're going in like that, if an athlete gets up to the starting line and they're about to do the relay or run the mile or 2-mile, and they get up and they're like, oh, I'm not doing good today. I'm going to lose. That person's faster than me. This is never going to work. Guess what? They are going to lose. You're going to lose. What's that saying? Whether you think you can or you can't, you're right. It's so true that neuroscience is, it blows my mind. And so I love that you're, you're speaking on this, but, and I know you have so much to say, but I have a question. I could talk to you all day, but when you have a situation where you're going into it and you're like, all is good, this is going to work. I'm confident about, confident about this. I am going to come out of this procedure feeling superhuman and you're really excited about it.

Yeah.

And then it doesn't happen and it's a huge setback. How do you readjust and keep moving forward with a moment like that that is devastating physically, but also mentally? It's like a huge knock. You know, it feels like that anyway. How do you readjust after a moment like that?

Hmm. With grace and with kindness. And ultimately, it's a really complicated situation because there's so much that's outside of our control, even if our mindset is aligned, even if we've done the, you know, surgery prep or the this or the that or the other.

Mm-hmm.

And so I am constantly orienting myself towards my toolbox, just building more tools in my toolbox saying, okay, what else is out there that can help me with this thing that I'm suffering with? How can I master that? How can I learn more? How can I implore that in the midst of the challenge? How quickly can I implore that so that the challenge doesn't get bigger? And I'll tell you a story of how resilience and mindset and action were all converged just in a lot, like last week with my friend Kim. So in the book of questions, Living with Chronic Illness, the first question, and you asked me before about my, my morning, the first conscious question that I ask myself the moment I wake up is despite how I'm feeling in this exact moment, what can I do to best support myself starting now? Because I don't have that many spoons. And if you're not familiar with the Spoon Theory, you should totally read it. It's really nice, really, really great. And I'm trying to manage my spoons well, and I'm trying to maybe add to my spoons. So I have—

Somebody who doesn't know what that means, like, I'm gonna tell you what that means. Describe what, what that means.

Yeah. So the Spoon Theory is a story that really talks about like units of energy and how much energy someone who has a chronic illness has to output to do the same thing. Like if your finger Maybe your fingers are burning. Maybe you're not able to like use buttons today. Like if your shoulder is dislocated, maybe you can't zip up something on your own. Like there's a lot of things going on just in like the get outta bed, get ready space in order to navigate. So a lot of people use a tremendous amount of energy just to get to the day. And so—

Just to get outta bed.

Just to get to the, just to anything. So my first conscious thought is despite how I'm feeling in this exact moment, what can I do to best support myself? And then the second question in the book, which like they kind of tie together for myself, is what are the tools and resources that best support me in my time of need and where can I place them so they're accessible when I need them? And so when I ask that first question, despite how I'm feeling in this exact moment, what can I do to best support myself starting now? It might be, I need water and electrolytes. Grab the water and electrolytes that are on my nightstand. It might be get some pain cream also on my nightstand. It might be grab my meditation pods also on my nightstand. So I already have on my like nightstand toolbox what I can reach for if I'm suffering when I wake up.

Mm-hmm.

And that shortens the amount of time it takes from suffering in bed To being capable of being in the world. And so it's, it's like a, it's a whole thing. It really is a full-time job to live with a chronic illness and strategize how to support our present and future symptoms and situations. It's really—

Oh, no, no. I mean, I, I, I get it. And it's also, I've had to explain, um, like I was speaking at an event and they wanted me to fly. It was like a 2, 3-hour flight, fly in that morning. speak at the event and fly out that night after a VIP dinner. So I would've been done late and have to take a red-eye.

Absolutely not.

I had to explain, hey, just so you know, if you want me to show up and do the best job and give the most energy to your organization, I have to fly in the day before. I need to fly in the day before. So I can let the nerves settle down. I don't get into detail about it, but so I can actually let the CRPS kind of calm down a little bit so I can walk. I can like think straight. So all these things, but you're right. It is a full-time job, but preparing for it, like you say, you have the pain cream, you've got the meditation cards. On your, your, your night table. I've got, um, an, an app that I use that's got meditations right away. Like if I'm laying in bed and it's, I'm in, I've got meditations saved in my phone that I can listen to that help so much. And so let's talk about, can we talk about some of your tools a little bit? I'm sure you have so many. I know I have so many, like just the way that I, you get dressed, the shoes that I wear, the, All of it. Like half of my bag, I carry a little carry-on bag. Half of it is, okay, these are the tools I need. Like really the tools I need. What are some of your favorite tools that you utilize daily to feel better, to, um, omit brain fog, uh, all the things that come along with, uh, health stuff?

I just love and adore you so much. Like you get it. And I was just talking to my friend, like I was like, I was like, you know, I actually, sometimes when I'm like really not well, you can tell because I'll have a bag or I'll have a purse. And that purse is like my go bag. And they're like, what does that mean? And I was like, it's filled with the tools and resources that best support me when spontaneous suffering appears when I'm out and about in the world.

Mm-hmm.

So I'm now mentally placing many things. So first I have these sound pods. It's like a 3-minute vibrating Um, mindfulness experience. So think, do you know what a sound bath is?

Oh yeah. I just got a text.

It's like a sound bath and you hold it and they turn off after 3 minutes. So sometimes I'll do that. I have 'em on my desk. I have 'em in my bag and I have 'em on my nightstand.

And what is it?

It's called a— It's, I'll, I'll text you about it, but this one's a good one because, um, maybe you can hear it.

I heard it before we started recording.

That's because I was holding it because I wanted to calm myself down because you're like my popular famous friend and I'm just like trying to talk about wellbeing and I wanted to calm myself down.

Yes.

I love you. Are you kidding? I'm, we're just, we're friends.

We go way back. And like, that's, that's the thing. Tools.

Tools.

And I will say, you know, on this topic, like I'll just be super real when I was a child. I was terrified to use my voice. I was terrified to speak in class. I was dyslexic and dysgraphic. I struggled with reading and writing. I had a lot of learning disabilities, so I had extra tutors and extra things, and I was always behind and I always did it wrong. And so there was a lot of, you know, not good letter grades, and that was just, it just was what it was. So speaking in front of other people, having—

And now you have a bestselling book.

Thank you. Thank you. It's really like full circle in every capacity of my whole existence. And this is my finest work, the neuroscience of wellbeing. And so, but I wanna go back to something you said before, because the third question is really where I think that you celebrate and the art of the reorient all the time. This question is, in the challenges I'm experiencing right now, what's one thing I can celebrate about my own resilience? And I notice you out in the world and you're like, a moment of challenge comes up and then you have a microcelebration and then you reorient and now you're back in the game and it doesn't take you out and it doesn't take you down for hours and days and weeks. And that's a very interesting thing because it's when we have microcelebrations, searching for good, searching for joy, searching for the other, that this opportunity presents itself. I'd never celebrated my resilience one time in the first 20 years of my suffering. I didn't even know what that concept was. Like, I literally, if I had heard myself now, I would've been like, you don't get me. You're like, you're, you're over there in healthy land because I was so in suffering land.

Mm-hmm.

It just, it just, it was unfathomable. And so that's where, you know, where we are aligned in that resilience mindset, because we really understand that the tools we have help us cultivate resilience in those spontaneous hard situations.

Yeah.

Well, I want people to get, grab your book and I'm going to definitely put the link for your book in the show notes, but can you go over, uh, the 4 questions and kind of explain how you came to those 4 questions that have really transformed your life? And I know it's going to change so many people from suffering into a resilient mindset.

Absolutely. Ultimately, when I was confronted by Brian, right before we started that therapy program, he said to me, I want you to check in with your mind every time a symptom comes up and just notice what's happening in your thoughts. And then what's the action you take as a result of those thoughts. And I became a noticer. And then I started noticing so many things that were out of my control. And then so many things that were in my control. And over time, throughout that therapy program, there was one moment where I took a step and it didn't, it wasn't excruciating. And that was the first time I thought, oh my God, I hope tomorrow I can take 2 steps and it's not excruciating. And it was a glimmer of hope that like opened a whole realm of searching for new glimmers of hope. And so these questions were birthed from me noticing what happens in my own mind when a symptom appears, which is fascinating, guys. No one else is in your mind. So you're the only one who could even notice it to begin with. And what Brian said to me that was so profound is he just wanted me to notice, not to judge or assign emotion to it or berate myself for why or why or what was appearing. But he was like, just notice. And is it certain? Like, what's happening? And just being in a neutral observation space was very eye-opening for me on that beginning of the healing journey. And so all these questions have come from different points where I started asking myself things like, okay, despite how I'm suffering, what can I do? Because there's so much I can't do. And I get that, but I used to focus all the time on what was out of my control, but it ultimately was never more in my control. And so these questions are really birthed from just like reorienting to like what I was potentially capable of. In that moment or in my, you know, like I knew I wanted to have coconut water and water with electrolytes on the desk for this conversation. So I set myself up for success, you know, like—

And with your little, your sound, you're holding your hand and, and you really practice all of these things. And it's not like you are some doctor who has said, do this and do this.

Listen, this will help.

No, you live by these things. And I know it because we talk on the phone and I know it because we talk before we start recording and I hear the sound things. I'm like, gosh, it sounds like a sound bath. Where's that coming from? And it was, I had no idea those were on your desk.

It's so good. You know, um, so that first question, and that's really like the greatest gift I hope to give to the world, like embed this question as often as you can, as often as a symptom comes up, despite how I'm feeling, In this exact moment, what can I do to best support myself starting now? And I learned that the earlier that I orient myself to ask that question, I'm often able to deescalate what within seconds or minutes would really, really exacerbate itself. And then like, I can't course correct. Like there's a very limited time when symptoms are appearing before it's very, very complex. For instance, the other day I was supposed to meet my friend Kim, and I was supposed to park in the parking lot and get in her car.

Mm-hmm.

I'm on the phone in a meeting, 'cause the book was about to launch, get in her car, and I realize I have about 12 seconds before I throw up. And this is something that's happened hundreds and hundreds of times in my life. I'm like, you know, it's not new narrative. And I said in my head, despite how I'm feeling in this exact moment, what can I do to best support myself starting Mm-hmm. And I said, hold on. I turned to my friend, I said, stop the car. I got out, I grabbed my hair, and I started throwing up. And then I asked the question again, and I was like, despite how I'm feeling, what can I do? And I turned to my friend and I said, do you have a napkin? And then I grabbed my Buhi electrolytes and water from my purse, another thing that I have with me at all times. And what transpired is that that was just the moment.

Mm-hmm.

But when I was in carpool and I'd throw up on myself or throw up on some kid's backpack, and then we'd have to, like, my mom would detail their car and I'd have to go change and, and, and then I'd feel mortified about the situation. And ultimately in the situation I was in last week, had I asked different questions like, what's my friend gonna think? Or, or, or Or, oh no, why is this happening to me? Ultimately, I would've just thrown up on myself or in my friend's car, and then I would've been mortified about it.

Hmm.

And then that would've been the day. And it would've been like a whole narrative and like a whole thing. But ultimately it wasn't, it was just a moment and then we went on. And so this is one of thousands of examples of me utilizing reflective questions or empowering questions to take action on what I can control. In these specific little moments where I'm the only one who could control it anyway, and only if I wanted. And it's practice and it's really a— it's a game in my mind. How can I meet a symptom in a way that doesn't take me out for long periods of time?

Yeah, that is so powerful not to let it just, you know, and I think I hear you say as you're describing so much, so much of it is giving yourself grace.

Yeah.

Giving yourself grace. So question number 1, question number 2, what's question number 3?

Okay. Question number 3 is, in the challenges I'm experiencing right now, what's one thing I can celebrate about my own resilience? And the 4th question I ask every day is, how can I best support someone else today? These 4 questions are what I call the daily questions. And then there's 111 self-reflective questions that are geared to invite people to release some of their held trauma. There's so many things being held physiologically within us as a result of crazy symptoms that have appeared and the ways in which we were ill-equipped to handle them. And like what, what happens in our body and mind as a result, what stories we tell ourselves. So one question in that collection. is when have you shown great courage and grit in overcoming something most people take for granted? Did you celebrate your triumph as much as it deserved? You know, so these are questions that invite you to just have a conversation with yourself to explore parts of you that you've probably never explored before, but in a safe container. And, you know, what's the thing that you said when you read it? You know, a lot of people reflect on that safety piece.

And you know what I love about your book is that it's easy to read, first of all. And I think we've talked about that because when you're having— I know that when I am really having a hard time and to the point where the pain's so bad that it makes me throw up as well, The last thing that I can do is look at my phone to read or read anything for that matter. Just reading through one email takes every ounce of energy that I have. So one of the things that I love about your book is that it is easy to read and also one of these books that you can sit on your nightstand or on your desk or take with you because it's small. It fits in the palm of your hand and you can flip through it. And you can just read one question a day. I love this one. Is your illness the primary focus of your conversations? If so, what sort of things would you talk about if you never talked about your health issues, or do you think others might prefer that? And if you think about it, think about when you— it's like a joke where you know you're getting older. I can say older because I'm officially in my 50s now, but when all you talk about is health, issues and doctor's appointments and colonoscopies and this and that. And I'm like, I don't want to be that person. I want to talk about opportunities and building things and resilience and what's the best thing that happened to you. And so I love that question because it makes you reflect on what are you talking about?

It's actually so insane. Most of us have no idea the things that we talk about and how they affect And so right along with that, there's another one. What stories do you tell yourself about your illness and what purposes do they serve? Do they serve for you? Are there other stories that might better serve for— serve you? And it's like, what's happening as a result of these horrific symptoms that spontaneously appeared and knocked us over? What happened in our mind? What stories did we create? What things did we— like, there were years.

Yeah.

When food was such a challenge that I just wouldn't go to anyone's house. I'm good. No, thank you. Or I'll bring all my own food. Thank you so much. I'm just, I'll just bring my own. And there's been so many seasons of me changing so much about myself because of a symptom, like a symptom appeared and then some trauma appeared as a result of how, you know, how I fainted or threw up or whatever happened. And, and I learned the That those experiences ruled the first 20 years of all my thoughts.

Mm-hmm.

And only when I started becoming an honest, loving, compassionate observer of what happens in my mind when a symptom appears, did I have the opportunity to start practicing. What if I wanted to insert a different question? What are those things that help me? When do I have those symptoms? What would be helpful that I could reach for when that symptom appears? What? Oh, there's— and ultimately that has allowed me to utilize the accesses that I have in effective ways. For instance, I have a lot of weird symptoms, especially like 15, especially 10, 15 years ago. This was something I did on a regular basis when I wasn't getting the diagnosis or the explanation or the support that I needed. Like literally doctors had no idea what was going on. And I was saying, these are happening. And this is a really common experience for most people. Like they don't feel seen by a doctor or they don't feel like they're getting the support that they need. And so I just took it upon myself to start going into hundreds of support groups. And I would ask the same question like, hey, does anyone have this symptom? Has anyone ever, like, has anyone ever gotten it diagnosed? What do you think it is? Or like, hey, I was just diagnosed with this symptom. What's ever worked for anyone. And people would say, you know, go to an electrophysiologist, have a tilt table test. It can diagnose the type of autonomic dysfunction you're discussing. Or people would say like, check out this thing or that thing. And ultimately, if someone has a similar condition or the same condition as you, they might know something about the symptoms that you might be searching for answers on. And so, I just got really good at asking questions of people to reorient.

Mm-hmm.

Like, if you know a lot and you just wanna complain because you wanna feel seen. Well, I know you know a lot, and I want to know what's the symptom that I have that you have that you're further along on. And so that has been like the gift that I gave myself that was birthed out of that curiosity journey.

I love that. But I also want to talk about support groups. So you said you were in hundreds of support groups. I was in a support group for CRPS, and I was like, I found my people. And then And realized that it wasn't the right group for me because of when I was on the doctor's TV. I had a lot of people in the group that were very, very upset with me, which is understandable because they cut half of my interview in half and they said that girl gets, cures pain with her mindset. And I'm like, I never said that. And that's not all I do. I do work on my mindset, but it's not not all the tools in my toolbox by any means. And so, but I had a lot of haters basically coming after me. And I know, and my husband, I was like, I got to get out of this group because it was just constantly pinging and they were talking about me like I was not even, like they were saying the author. And I'm like, my name's Amberly. I'm just like you. So I got out of that group. How do you find a support group that you can go in where people aren't trying to outdo your pain? People are not just constantly negative. People are positive, optimistic like you. Do you have your own support group? And if you don't have your own support group, what do you say to someone That, like, how do they find the right support group?

What a challenging and complex question. We could have an entire podcast just on this topic. So first and foremost, I am so sorry that that was your lived experience. And I have to tell you, this book takes so many additional years because of that fear and trauma that I have about this exact same thing. I have mentored kids and teens with chronic and terminal illnesses for decades. I have helped tens of thousands of families. And I gotta tell you, When I retired my handicap placard, things changed. I'm, I'm, when I was strong enough, I retired my handicap placard. Mm-hmm. And I remember there was a whole group of people who said, you're too strong to get us anymore.

Oh, they wanted to beat you down.

And, and ultimately we're never gonna please everybody, but what I learned is that nobody else Knows all of the ways that I suffer behind closed doors and the incredible micro resilience that it takes every moment to ask myself, despite this suffering, what can I do? And then reorient and then actually do it. Like the action, not just the thought. And so I just really trained myself to eliminate that external noise because nobody else is in there. And I was like, you know, it's a fascinating—

So yeah, that has, you know, I relate. Thank you for sharing that because I just spoke at the, um, annual RSDSA conference, which is one of the biggest foundations that I, I love this organization. It's been over, over 20 years. They've been helping people that have been diagnosed with CRPS and I was their keynote speaker and that day, oh, Brianna, I, I didn't tell anybody this, but I actually threw up in the bathroom. I was in so much pain. My husband was like, are you going to be able to make it? And I was like, oh, I am going to make it. But it was really tough. And I look at pictures from that event and I'm like, whoo, I got to give myself some grace because I look rough. I mean, I had so many people that I got to meet that day that I'd only known online, and they actually thought that I was in remission or I no longer had pain. And I'm like, what? I just had a spinal stimulator this year. Like, no, I'm not cured. I still live with this, and I just do my best despite my circumstances and focus on resilience and the good and taking care of myself mentally, physically, and spiritually. But you're right, no one knows. Like, except for the people who live with you. And I want to ask you about that. Your partner, who I just was— I got to meet right before we started recording. What would you say to someone that is like, how do you go about getting support? For me, it was hard to get like help or support. I didn't want to feel like a burden. What are some of the things that you do in your relationship that help you both to have a thriving relationship? And that helps support you on your journey and your mission of getting your message out there and all the work that you do?

Oh my gosh. So many things I want to touch on. And I want to really circle back to the support group narrative for a moment, because nobody sees what you— we suffer with. And you're an incredible rock star who was going through an incredible flare-up complex moment and still made it through and And people didn't even know. They thought that you were just fine now. And so I wanna applaud your consistent micro and massive resilience behind the scenes. And then you probably move right along, so you're not even celebrating it that much. So I wanna celebrate you. And in this—

Thank you. I would beat myself up for that one. I just have to be honest with you.

I always— And In the support group category, you are part of my support group.

Mm-hmm.

You know, I have a lot of Amberlys in my life and I, in the book, I talk about not like, if you happen to be courageous enough to take these questions outside of you and your mind, you and your journal, you and your mind, you and your journal as a tool to release some of your held trauma. If you are courageous enough to eventually do I often recommend that you connect with someone that's not a loved one at all, not your spouse, not your parent, not your child, not your sibling, because most people in your first vulnerable time, most people don't have the capacity to meet you with the emotional resilience that you're looking for. And what transpires from a neuroscience perspective Is that we say, if the person that loves us the most can't see and hear me, no one ever can. No one ever will.

Hmm.

And so I have set myself up for success by mitigating risk. So I realized I don't really want to talk to someone that has my condition for emotional support, because with emotional support, someone with your condition might play comparisonitis game. They might say, well, she looks like she this, she And that, and we're not meeting ourselves on a psychologically safe level. And so I like to connect with people who are illness adjacent. We get it. We met each other in the first 5 seconds and thought, oh, we get each other.

Mm-hmm.

On the internet. And so when we talk about support groups, first and foremost, I only use them to crowdsource help. That's it. If it's an online support group, group out there in the world. The only function for me is crowdsourcing help. I wanna know what is this symptom? What, who should, who should I see? What's, what do I need to know? Or what has, who has found relief and what is it? Eastern, Western.

Yeah.

I just wanna know. But otherwise I don't hang out in those support groups because they're often oriented in a way that they wanna feel seen in their suffering. And I get that and there's a place for that, but I'm not in that Yeah. And so, it's just the whole thing is very interesting. So, I have found a lot of support from other people who navigate really hard experiences behind the scenes and still show up to express their passions and to really live into their purpose. And so, those people have been my quasi-support group when I need them, when I need emotional support, for instance.

That's so good. That's so good. You don't hang out in those groups, but you go in there and say what works. And I'm glad you brought that up because I always share what works for me. And I say, but I don't know if this is for you, but this is what helps me. Like for instance, the first time I ever shared what I do for my gut health, because I think if you take care of your gut, it helps helps with so many other things with your brain. It's your second brain. I shared that and I don't share a bunch of stuff. I don't do a bunch of collaborative, like we'll give you an affiliate link for that product. No, I tried using this gut health supplement for 6 months. And the only reason I shared it on my social media was because I had someone that's a friend of mine that started using it. And it helped her so much. She left me a voice memo and she was crying. And I was like, okay, Amberly, this isn't just helping me with brain fog and energy. This is helping other people too. I am being selfish by not sharing it. And so I shared it. And that post alone, I had so many people saying, oh my gosh, you don't ever share anything like this. It must be really good if you're talking about it. And I'm like, well, yeah. And I still take it every single day. I'll put the link for what I use for health and happiness, and I'll put it in there for my gut health. I'll put it in the show notes for you. And so, yeah, I think it helps when you share what works. And this is definitely— your book is definitely one of my new tools. But before we go, and I know we've got to get off, our time is up, but what is something— I just got asked this question recently. About what would you say to someone to better help them support you? Someone that does not have, maybe it's a friend or a spouse or a relative. How can they support you when you're going through a challenging day with a health issue?

Well, it really depends on who it is. I say different things to different people. But also this, the same question, despite how I'm feeling in this exact moment, what can I do to best support myself? So that's an ownership micro massive action question. That's what I ask myself. But I also have noticed that all my friends and stewards of support ask me that. They say, how can I best support you? And I, and I'll get like, like my book just launched and all my besties are the, That's the sentence. I think it's a common theme. How can I best support you? And, and people will say that when they see me like off and when something big is happening, they'll use that language. So I think that that's a really nice thing to insert in your own mind for yourself. And once you get comfortable asking yourself that, because most people, you're trying to, you're thinking about how you can support everybody else around you, but rarely are we thinking about how we can also fill up our own It's like a real—

but that's such a great question for anything, whether it's a chronic illness or anything, whether you're on your entrepreneurial journey, because how can I best support you? It just takes me back again to this event that I just spoke at. And one of my best friends was a speaker, Arjun, and he always asked that question, how can I support you? What's the best He doesn't have a chronic illness. He's just an amazing human being. And so I think being an amazing human being start is by asking that question to all of your friends, to your children, to your spouse, how can I best support you? To your entrepreneurial friends, for sure, to your strong friends, how can I best support you? Because when you're strong, It's sometimes hard to ask for help. And so go check on your strong friends. Um, so what is the— how's the best way for people to get this book?

You're so cute. I need, you know, all over the internet, uh, bookofquestions.com. You can get it online. Um, and, you know, I did want to just say the 4th daily question is, how can I—

Oh, we get to talking and I'm like, okay, go, go, go, go.

No, we said it before, but The 4th daily question is, how can I support someone else today? And that question comes from a longitudinal MS study where over 2 years, one group of people were told that someone's gonna call you once a week to check in on you. And the other group of people was told, you're gonna call someone else to check in on people.

Yeah.

And over 2 years, the people that called someone else, they fared better. And so, you know, this idea of like the kindest people, they're checking on you. The idea that like we should be checking on each other, check on your strong friends, you just said that. And I'm like, That's why it's a question that I ask myself because I will find someone I think about who needs support. I mentally, you know, these things will pop up and then that's what, you know, it's a certain type of person that's thinking about others and themselves and the balance.

Well, yeah.

And I mean, I always say, you know, if you're sad, go check on, go check on somebody, go help somebody. If you're happy, go help somebody. If you're depressed, go help somebody. If you're into yourself and feeling like a victim, Go help somebody. And in recovery, because I'm sober since 2016, it's like there's a saying, you keep what you give away. It's something similar to that. And meaning like, I get to keep my sobriety as long as I'm helping another alcoholic stay sober. And we get to keep our resilience as long as we are going to check on somebody and see how we can support them and help them to be resilient. And so go check on somebody. This book of questions, I'm telling you, it is— I'm going to be telling everybody that reaches out to me, get the book of questions, because I have a lot of people that will ask me, they'll say, what do you do? What do you take? Well, first get this and start reading, start going out there and helping somebody. And so, yes, tell us again one more time where people can find out more about you and the work that you do, where you're going to be, the book signings, the events, and grab your book?

You're so sweet. Wellness Bri, B-R-I, 11:11 is my wellness Instagram, and that's really where I share a lot of the neuroscience of wellbeing and some of the why behind these questions and how they can best support. And so that's where you can check things out. Bookthequestions.com. You can purchase it anywhere books are sold, and it's an incredible tool for support groups. And we You know, I just love the idea of what can you ask yourself that actually moves the needle? And so some questions I just ask over and over and over and over again, and they never get old because I'm constantly answering what comes up. And the actions really have propelled me to a place that I'm honored to be capable of talking to you, like to be capable of seeing, talking, having a coherent conversation, being able to sit like, it's It's an honor to be capable to do what we do with the way that we suffer behind the scenes.

Oh, it really is. I mean, it really is. I mean, I could just go on and on. I immediately think about like, if this morning taking my dog for a walk, like I was hurting and feeling tired and I was like, I am so grateful that I'm able To walk, that I'm able to walk, that I'm outside. It's 8 o'clock in the morning and I'm out of bed. Because there were mornings when I couldn't do that and still are some days. And so, yes, I just, I knew the moment we met that I was like, oh yeah, we are kindred spirits. And I just am so grateful for you, the work that you do, and thank you for sharing your gifts on the show.

Thank you.

And y'all go check out her book and check out all the work that she does. Thank you for tuning into the show this week. I appreciate you being here. And Brianna, thank you for helping me with just this wrap-up for all— everything is right about you. She's holding up a Post-it note. A Post-it. And I just appreciate you being here as we wrap up the month of November for awareness for CRPS. And thanks for tuning into the show and making this a top 1% podcast. I could not do with— this is because of you, for y'all tuning in, downloading the episodes. So share this with your friend, anyone that you know that is really struggling to shift their perspective. Get this book, The Book of Questions, and we will see you next week. Thank you, Brianna.

Thank you.