In this candid episode of Podcasts by Dr. Kirk Adams, Kirk welcomes back Brandy Schantz, possibly the show’s very first guest, to talk about her forthcoming book, Living Chronic: Conversations That Changed Me, Lessons That Saved Me (Koehler Books, out August 24, 2026). A former U.S. Army intelligence officer turned consultant, Brandy recounts how a severe case of Crohn’s disease, and then drug-induced lupus from the Humira treating it, cascaded into generalized dysautonomia (small fiber neuropathy, POTS, orthostatic hypotension) that cost her the ability to walk and, for a time, her identity as a lifelong athlete. She describes years of self-advocacy, cold-calling studies, reading medical journals, learning that the medical system rarely delivers a quick diagnosis, and how launching her Living Chronic podcast turned her guests’ hard-won lessons into a lifeline.
The book distills those lessons, each chapter built around a podcast conversation: “there is no Superman,” you have to be the architect of your own care, and you must grieve your former self. Kirk connects it to his own experience of disability and the “spoon theory,” and the two discuss caregiving (Brandy devotes a chapter to what her husband gave up) and the surge in disability since COVID. Now running again, she did the 50th Marine Corps Marathon, Brandy points listeners to the book on Amazon, through Koehler Books, or via brandyschantz.com, and to her rebranded podcast, Living Chronic: Ability at Work. Kirk notes his own forthcoming book, The Disability Dividend.
TRANSCRIPT:
Podcast Commentator: Welcome to Podcasts by Dr. Kirk Adams, where we bring you powerful conversations with leading voices in disability rights, employment, and inclusion. Our guests share their expertise, experiences, and strategies to inspire action and create a more inclusive world. If you’re passionate about social justice or want to make a difference, you’re in the right place. Let’s dive in with your host, Dr. Kirk Adams.
Dr. Kirk Adams: Welcome, everybody, to another episode of Podcasts by Dr. Kirk Adams. I am that Dr. Kirk Adams, talking to you from my home office in Seattle, Washington. And today I have a repeat guest, Brandy. You may have been the first-ever guest on the podcast, so welcome back. Today we have Brandy Schantz. Brandy is author of a book that’s coming out on August 24th. It’s called Living Chronic: Conversations That Changed Me, Lessons That Saved Me. And it’s available for pre-order now. And we’re going to be digging into it, Brandy, and hearing all about the book. So, welcome.
Brandy Schantz: Oh, thank you so much for having me again. I’m excited to learn. I might have been the first person on this podcast — I do remember when you were starting it.
Dr. Kirk Adams: Yeah, I think that’s right. And Brandy and I met via LinkedIn, where I spend some quality time every day, and have for 18 years or so. She’s one of 30,000 fabulous connections on my LinkedIn who care about accessibility, disability inclusion, assistive technology, human rights, social justice, and all those good things. So, great to have Brandy here. As for me, if you don’t know me, I’m the immediate past president and CEO of the American Foundation for the Blind. I currently have a couple of official hats. I’m the managing director of my consulting practice, which is called Innovative Impact, LLC. I am also executive director of the Institute for Sustainable Diversity and Inclusion, and we’ll be launching our Community Coalition for Sustainable Diversity and Inclusion on August 3rd. So, a couple of big dates in August — one for each of us. And I have had a number of really in-depth conversations with Brandy since we’ve met, and I knew she was working on a book. She would mention it from time to time, but it’s here, it’s coming — so, available for pre-order. So, Brandy, I’d just like to hand it over to you, if you could, for the listeners who didn’t tune in to that first episode: if you could tell us a little bit about your life journey and what brought you to the work that you do. And then we’ll dig into hearing all about the book, Living Chronic. So, it’s all you. All right?
Brandy Schantz: Yeah, certainly. So, I came into this world, as it were, like so many of us do — quite suddenly. I was an Army officer. I served as an intelligence officer in the Army. And then, like most of us, I went on to work in consulting. And while I was working in consulting, I was suddenly diagnosed with a very severe form of Crohn’s disease. And it really prevented me from getting to work. And, of course, the job I did was very classified — pretty much everything I did was top secret, most of it compartmented, and many other things. So there was nothing I could do from home. And this was before 2020, so we weren’t really talking about work-from-home that often. And I was faced with a situation where I needed to figure out what I was supposed to do, because bills don’t pay themselves, and I made a career change to accommodate my Crohn’s disease. During that time frame, I started having some severe symptoms, and we just didn’t know what it was. And over 19 months, I slowly deteriorated until I lost my ability to walk.
Dr. Kirk Adams: What were some of the early manifestations? You said you started experiencing symptoms — can you talk a bit?
Brandy Schantz: Well, for me, it was— I kept describing it at first as overtraining syndrome, because I was an athlete. I’ve always been an athlete, and I had been training for Ironman Chattanooga 70.3. So I thought, oh, here I am in overtraining syndrome again. I get myself in trouble a lot, I love to overdo things, I’m well known for that. So I wouldn’t have been surprised, except that I was not getting any better. I still was having difficulty running. I wasn’t recovering. I started getting a lot of shortness of breath, some chest pains. And at that point in time, when this started, it was 2020. So I kept going — you know, I got in that long car line that we all got into so I could get my nose swabbed for COVID, thinking, oh, maybe it’s COVID, but I never tested positive. And I was doing what I was supposed to as a Crohn’s patient. I was immunocompromised, so I stayed at home like I was supposed to, and just couldn’t figure out why I kept getting shortness of breath, chest pains. I was also getting rashes, and couldn’t run, which was unusual for me. I’ve been a runner my whole life. So this sudden inability to run, I couldn’t quite understand. And in 2021, things just significantly got worse, and the rashes became worse. I couldn’t go outside because the sun would give me a really terrible rash. I started getting severe mood swings and couldn’t really think properly. At one point my husband said it felt as if my entire personality had changed.
Dr. Kirk Adams: Oh, wow.
Brandy Schantz: And as everything kept worsening— the not being able to run became not being able to walk. My ability to move, my mobility, was continually deteriorating, and my muscles and joints were so severely tight, inflamed, that I would try to go get a massage and they couldn’t massage the knots out of my muscles at all. And my joints were just so inflamed, I could scream at any moment and cry. It was terrible. So I finally lost my ability to walk. And I had kept going to doctors and finally said, ‘Hey, guys, this is just not normal. I can’t walk, I’m laying on a couch here.’ And a friend of mine recognized some of the symptoms and sent me to her neurologist. And he was nice enough to get me in very quickly. And that’s where I learned I was suffering from drug-induced lupus, due to the Humira I was taking for my Crohn’s disease. So once I got off of that, I did get my ability to walk back pretty quickly. Unfortunately, I wasn’t able to get back to my athletics, which for me was a big problem, because it’s something I love. It’s how I deal with stress and anxiety and just everyday life. It’s what makes me happy. In addition, I was having trouble with fatigue, and I couldn’t think clearly — a lot of brain fog. Doctors kept telling me it would just take a while for the Humira to get all out of my system: give it six months. But I gave it six months. I was patient, and I just was not getting better. And I kept dealing with the same symptoms: shortness of breath, a lot of dizziness. I was getting vertigo. I couldn’t run. It made no sense to me. And I worked very hard over that time period, constantly. I was cold-calling different studies that were looking at people who had similar symptoms to my own. I was calling doctors all over, asking for different tests. I was reading medical journal articles, which is not my favorite. I did not study science, I studied business. So, unless you’re talking exercise science, I typically don’t really care. But at that moment in time, I cared a lot. And as I was going through it, I was just so depressed. I didn’t know how to get out of bed in the morning, because I’d lost my entire life as I once knew it, and I just couldn’t recognize my life. And I just couldn’t seem to find anybody to help me and pick me up. And I thought, well, maybe what I should do now is start a podcast, and see if maybe I can help some people just like me. And maybe that’ll help me to better understand how I can get up in the morning and keep pushing forward. You know, at that time—
Dr. Kirk Adams: When did you start your podcast, Brandy?
Brandy Schantz: I think I started that in— I think late 2022.
Dr. Kirk Adams: Okay. And it’s called Living— Living Chronic?
Brandy Schantz: And I learned so much from my guests. As I was going through this journey, it kept pushing me, and I’m learning, and I kept figuring out how to really advocate for myself at the doctor — who to call, what to do. And I did finally get a diagnosis. I was finally diagnosed with generalized dysautonomia caused by small fiber neuropathy, POTS, orthostatic hypotension. And it had been causing a number of issues, because it was throughout my entire body. So it was affecting my heart, my GI system, my bladder, my breathing — you name it, it was involved. Of course, I felt like I was dying, for sure.
Dr. Kirk Adams: But yeah.
Brandy Schantz: Understanding that I wasn’t dying, and that there was a name to it, and I could figure out a way forward because I knew what it was — it was a big deal. And that’s why I wrote the book.
Dr. Kirk Adams: Yeah. Now, I have an impairment. My retinas detached when I was five, so I’m totally blind — I always am, impairment is always with me. And often I talk about being in disabling situations, when my impairment doesn’t allow me to interact effectively with the environment — a built environment, or a digital or social one. But as I talk to people such as yourself, and listen to your podcast, and now I’ll be reading your book — the particular issues faced by people with chronic illness, chronic pain — I know the misperceptions people have. I see people sometimes commenting on social media, people will say, ‘Well, I feel better,’ ‘Get better soon,’ ‘Get well soon.’ Right. Yeah — well, that’s not happening. Or the misunderstandings about what chronic pain and chronic illness does to people. I’ve absorbed the concept of the spoon theory: I only have so many spoons of energy to utilize each day, and I have to choose where I use them. So, I’m sure you talk about it in the book — if you want to talk about the book, and maybe touch upon some of those things that I just raised, that I haven’t experienced myself, but I want to understand better.
Brandy Schantz: Well, so much of it— each chapter is a lesson that I learned from one of my podcast guests. And those lessons really did drive me to be able to finally get a diagnosis, which is more than half the battle for many of us. One thing I learned very quickly, which shocked me — because I didn’t come from this world; it’s the same for most of us, most of us don’t grow up with these chronic illnesses, they develop later — and you’re shocked to find out that, in fact, the medical system doesn’t work the way you thought it did. Because I always thought you go to the doctor, you tell them what’s wrong, they run a couple tests, voilà — there’s a diagnosis and a treatment plan. And the reality is, for so many of us, it’s many, many years of going to doctor after doctor and not getting a diagnosis or any resolution at all. It’s a lot of analysis. Most of these conditions — or many of them — don’t even have one specific test that a doctor can run to know you have multiple sclerosis. Instead, they’re just evaluating a series of symptoms and various tests over years. Sometimes it’s MRIs — a combination of MRIs and blood tests, or CT scans — plus your symptoms and how that’s been relating to those tests, so that—
Dr. Kirk Adams: As you were told: just wait six months until the medication is out of your system. Yeah — that was not a correct analysis. Or— no, not even—
Brandy Schantz: Close. And, on the one hand, it makes you angry — first, just learning this, because nobody tells you that. You think, oh my goodness, I thought there would just be a test and, voilà, things would be fine. So there is certainly a time period where you’re going through your own bargaining with yourself, and this anger, and, how did this happen to me, and why did it take so long? On the other hand, I understand doctors better as well, which better informs how I approach my own care — because I now understand that this is a soft science based on hard science, and they’re doing an analysis, and they’re doing the best they can. So you have to be honest with them. If you have 15 drinks a week, don’t tell them three. Don’t fudge it. When they ask you to lose weight — should they also probably run some tests? Yes, they should. But they’re also trying to tick that off of their list of things that could potentially be causing your symptoms. And I think the more I understood that, the better I was able to put together my own advocacy plan. I have my own little mission center with me everywhere I go.
Dr. Kirk Adams: Okay.
Brandy Schantz: Because I know that I need to come together. I need to be ready to talk fast — I only have so much time in the doctor’s office. I need to pull together a compilation of things I’ve gone through, and my current symptoms, as well as what I’ve been doing to alleviate those symptoms, so that the doctor can get a full picture and do a better analysis. And that’s what’s helped me to get as far as I have. And at this point— when you talk about the before and after, really, this all started— when you think about it, just before I started the podcast, I was bedbound and unable to walk. And now I’m running again. I did the Marine Corps Marathon last year, just because I couldn’t say no to doing the 50th. So I’ve come a long way. I’m able to work a full day. I still have to accommodate my illnesses in various ways, but I’ve been able to achieve so much, thanks to how far I’ve come with physical rehabilitation, medications, treatment plans, and a good team of doctors who I’ve partnered with. But I did learn how to get to that point again through those podcast guests.
Dr. Kirk Adams: Yeah.
Brandy Schantz: Through my own experience.
Dr. Kirk Adams: Yeah. Let’s hear a little bit about some of the conversations that changed you and the lessons that saved you that you talk about in the book. Could you give us a couple of examples?
Brandy Schantz: Well, I think the— the first one that just hit me — I mean, it just really hit me, because it surprised me. I was always such an independent person, a real super-duper type-A-plus, one of those people you think, oh, she’s a go-getter. But one of the first things I was told is: there is no Superman. Nobody’s going to save you. You’ve got to get up and save yourself. And it hit me, because I realized, up to that point, as self-driving as I tend to be, I really was waiting for somebody to come and save me.
Dr. Kirk Adams: Oh, yeah. You know — ‘Here, do this, this, and this, and everything would be better.’ Right.
Brandy Schantz: And I was like, oh my gosh, she’s right. Nobody’s coming to save me. And, of course, that’s not to say that you don’t have helpers along the way, because I’ve found so many wonderful people who have been there for me and have helped me and have gotten me to where I am today. You’re one of them, Kirk. I just have a great group of people over the last five years that have really helped me to get to where I am. But to meet those people and to find those helpers, I had to get up and reach out and start doing on my own. And that was just the real moment. And you have to do the hard things, like read the medical journal articles that give you a headache because you did not study science. And this takes a long time. Or just reach out and make that phone call to somebody you see who’s conducting a study, or find that person who’s gone through what you have and just, you know, slide into their DMs and say, ‘Hey, I see you have X, Y, Z. So do I. Can you help me? I’m trying to find a doctor,’ or whatever. But you really do have to be the architect of your own good health and treatment plan.
Dr. Kirk Adams: And tell me about the structure of the book. I think you mentioned that each chapter is really built around one of your podcasts — is it the conversation that you have?
Brandy Schantz: It is. When I started writing the book — I mean, when I first had this manuscript together, it was much, much longer than it needed to be. And then I went through it, and I realized that this is not about me at all. It really isn’t. This is about each and every person who is going through this very dramatic and traumatic event in their life. It’s difficult. It’s difficult for all of us. And I knew, when I was going through it, that I’m not the only person who has woke up in the morning and thought, how do I get up and get out of bed and keep doing this? I just don’t know how anymore. Because this is difficult.
Dr. Kirk Adams: And yes.
Brandy Schantz: So what I did was, I decided to cut it back. And I do talk a little bit about me and who I am and how this started. But then, from there, it’s just— each chapter is a different lesson that I learned from a podcast guest, and then lessons that I’ve learned along the way as I finally got to this point. Because I wanted the book to be about just that: how do I survive—
Dr. Kirk Adams: —this—
Brandy Schantz: —terrible event that has just entered my life unexpectedly? Because nobody tells you— the doctor may say, ‘Oh, I’ll just apply for disability,’ or, ‘I don’t know,’ or whatever. It’s never anything super helpful on how do you actually live your life now?
Dr. Kirk Adams: Right.
Brandy Schantz: And I needed a blueprint for how to live my life now. So it’s those little things. It’s ‘no Superman,’ ‘nobody’s coming to save you,’ it’s learning that you have to grieve your former self.
Dr. Kirk Adams: Yes. And can you talk about that a little bit? I’m a little slow on the uptake, but it wasn’t until, I don’t know, 12 or 14 years ago, when I was talking to a therapist who was also blind, who kind of said, ‘Well, have you gone through the grief cycle?’ We talked about that. And then she also said, ‘Have you dealt with your childhood trauma?’ I’m like, ‘Childhood trauma?’ She said, ‘Yes — your retina detached when you’re five, you’re in the hospital a lot, you have experienced childhood trauma.’ So, can you talk a little bit about the grieving part, how that worked for you?
Brandy Schantz: It’s the hardest part, because I’m still grieving. There’s so much, because every day I learn something new about myself. And there’s some things that I’ve learned to love. I’m a more empathetic person than I was before — because I was always a super-duper type-A-plus person, and, I think in hindsight, I was a bit rigid. And now I’m very flexible, and I’m able to roll with change in a better way. I think it’s actually made me a better person in certain aspects. But then, in other aspects— I mean, I was older when all this happened. So for over 40 years of my life, I’ve kind of brute-forced my way through everything, and I can’t do that anymore. So I have to think of a very smart strategy. And that’s new, because sometimes I just really want to be my old self and just bulldoze through the situation, and—
Dr. Kirk Adams: Right.
Brandy Schantz: And I realize I can’t do that. I’ve also had to really grieve my former athletic self. I’ve gotten my ability to run back — I’m back out there, and it just thrills me to no end, I’m so thankful. But at the same time, I cannot be competitive, and I cannot train the way I used to, because I have these disorders. And sometimes I have flares. And when that happens, if I want to get through it, I know I have to say, ‘Let’s back off.’ And sometimes that means just backing out of training altogether and doing a lot of yoga and breathing exercises, which does nothing for making you run fast. And I have to learn to be okay with that.
Dr. Kirk Adams: Yeah. So, I’m guessing this book could be really helpful, obviously, to people who have chronic health conditions that they’re living with, but also other people who have a person in their life — a friend, a family member, a colleague, a neighbor — to more deeply understand it. It’s a different world — one that, as I mentioned earlier, I obviously haven’t experienced myself, but it’s so real, and it’s so much more common than I realized until I met you and started paying attention. I mentioned social media before, and that’s a place I spend time, and just hearing people’s comments — the stereotypical way people are treated, the assumptions people make. So there are a lot of people out there living with various chronic health conditions, chronic pain. So this book, Living Chronic, by you, Brandy Schantz, could be very, very helpful to people with chronic health conditions and people who are in their lives. So, I’d love to hear any closing thoughts you have about the book. And then, if you could let people know how to pre-order, so they can receive it on August 24th.
Brandy Schantz: Yeah. My big hope is that it can help somebody, and help a caregiver as well. I did put in an entire chapter talking about caregiving, and how— before this experience, I never thought about how much a caregiver gives up, and the fact that nobody ever asked my husband how he was doing. And he lost as well: he lost the wife, the healthy wife he once had. His life was changing, he watched me deteriorate, and he’s been the one to have to take care of me — so that comes with its own grief cycle, its own trauma, its own difficulties. So I hope that people can also think a little bit more about the caregivers as well, and how their lives have changed. And hopefully— there’s so many people— I can’t think of the name of the study right now, but, essentially, since COVID, disability has increased dramatically.
Dr. Kirk Adams: Yes.
Brandy Schantz: Because of long COVID. So there’s a lot of people living with this right now. And it’s not easy — it isn’t, for anybody. And every little bit helps. I’m forever grateful to my podcast guests, and to every person that has touched me over these last five years, because I know that the way I survived was through those people, and that help, and that support. And that’s really what it takes to get to the end. So if you’re interested in reading the book, buying the book for a friend who’s going through something, somebody who’s a caregiver — it’s available for pre-order now. You can find it on Amazon. I’m published through Koehler Books, so it’s also on their page. You can buy it through your local bookstore, if you’re interested. But just go online — it’s on my website as well. It’s called Living Chronic: Conversations That Changed Me, Lessons That Saved Me.
Dr. Kirk Adams: And your web address for your website?
Brandy Schantz: It’s https://brandyschantz.com. ‘Sch’ — because my husband’s German, and has to make it difficult.
Dr. Kirk Adams: Okay — https://brandyschantz.com. Yep. Well, great. I encourage those of you who could find even a little bit of help from Brandy’s experience to order the book. As for me, I am Dr. Kirk Adams. You can find me at my website, https://drkirkadams.com. I also have a book coming out, Brandy, called The Disability Dividend: Supercharge Your Bottom Line Through Disability Inclusion, which is intended for business owners and employers. So we have that in common — we both think we could add a little bit of support to people through describing our experiences in book form. So that’s cool.
Brandy Schantz: Absolutely. Well, I’m looking forward to reading that. I rebranded my podcast a little bit to go along with my work, and it’s now Living Chronic: Ability at Work.
Dr. Kirk Adams: Nice.
Brandy Schantz: Again, talking to employers: hire disabled — some of the best and most untapped talent pools you’re going to find.
Dr. Kirk Adams: That’s right. So, yes — https://drkirkadams.com. Also, Kirk Adams, PhD, on LinkedIn — I’m there every day. So reach out to Brandy, reach out to me, and we’ll talk to you next time on Podcasts by Dr. Kirk Adams. Thanks so much, Brandy.
Brandy Schantz: Thank you.
Podcast Commentator: Thank you for listening to Podcasts by Dr. Kirk Adams. We hope you enjoyed today’s conversation. Don’t forget to subscribe, share, or leave a review at https://www.drkirkadams.com. Together, we can amplify these voices and create positive change. Until next time, keep listening, keep learning, and keep making an impact.
Dr. Kirk Adams, Ph.D.
Advocate, Leader and Keynote Speaker on Disability Inclusion & Leadership
Leading the Way to Accessible Innovation
” Inclusion isn’t just the right thing to do — it’s a strategic advantage. “
Institute for Sustainable Diversity and Inclusion (ISDI)
Executive Director
Strengthening individual and organizational capability for creating diverse, inclusive and equitable workplaces.
Innovative Impact, LLC Consulting
Managing Director
Impactful Workforce Inclusion Starts Here
American Foundation for the Blind
Immediate Past President & CEO
To create a world of no limits for people who are blind or visually impaired.
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