The Unnamed Grief Of Chronic Illness with Brenda Snow | EP 459

You know you need something, you're just not sure what. You've been listening, you're doing the work, but there's still this feeling that you're circling the same place, like you're waiting for the thing that finally moves you. Now maybe you've thought about working with me one-on-one. Maybe something's held you back, the timing, the money, or you're just not sure you're ready yet. I get that. And I want you to know there's still a place for you. I built a resource for exactly this moment, guided meditations for when the waves hit and you just need to breathe. Workbooks to help you get out of your head and onto the page, ebooks on what near-death experiences tell us about the people we've lost, and whether they're really gone, a full course for widows and widowers who are ready to find their way back to living, and a full course for the evidence of the afterlife. And all of it is available for pay what you want. Nobody gets turned away because of money. I think these resources are valuable, but I don't want to hold them back because you don't have the money to pay for them. You don't have to wait until you're ready for coaching. The next step might be a lot smaller than you think. To find out, go to grief2growth.com/store. That's grief, the numeral 2, growth.com/store. And check out the resources I've made for you. Close your eyes and imagine. What if the things in life that cause us the greatest pain, the things that bring us grief, are challenges, challenges designed to help us grow, to ultimately become what we were always meant to be. We feel like we've been buried, but what if, like a seed, we've been planted? And having been planted, we grow to become a mighty tree. Now, open your eyes. Open your eyes to this way of viewing life. Come with me as we explore your true, infinite, eternal nature. This is Grief 2 Growth.. And I am your host, Brian D Smith. Hey there, I'm Brian D Smith, your host here on Grief 2 Growth. And whether this is your very first time joining us, or you're a longtime listener walking this path with me, I want to say welcome to you. The show is all about helping you navigate life's toughest moments, and finding meaning, purpose, and even growth on the other side of grief. Together, we explore life's biggest questions, things like who are we? Why are we here? Where do we go from here? Today's guest is someone whose personal and professional journeys speaks directly to the heart of what we explore on this show. Brenda Snow is a powerful voice in healthcare, a pioneer in patient engagement, and someone who took a life-changing diagnosis and transformed it into a mission that has impacted millions. Brenda is the founder and CEO of Snow Companies and the author of the book Diagnosed: The Essential Guide to Navigating The Patient's Journey. After being diagnosed with multiple sclerosis, Brenda didn't just fight for her own life, she redefined what it means to be a patient. Her book distills 30 years of wisdom into a practical, compassionate guide for anyone navigating chronic illness or caregiving. In today's conversation, we're going to dive into what Brenda calls the unnamed grief of chronic illness, that invisible sense of loss that comes when life doesn't go the way you plan. We'll talk about how illness reshapes identity, the emotional tools we need when our bodies don't cooperate, and how vulnerability can be a surprising source of strength. We'll also explore the role of storytelling and healing, how sharing your journey can break stigma, build community, and even reshape an entire industry. This episode is a powerful reminder that grief isn't always tied to death, and that sometimes a life you didn't expect can become your greatest teacher. So be sure to continue the conversation over on my Substack at grief2growth.substack.com, where you'll find an article about the episode. And you can leave comments, ask questions, and connect with me and other listeners. I'd love to hear what you think. And with that, let's welcome Brenda Snow to Grief 2 Growth.

Hi, Brian. Thank you, man. That might be the nicest intro I've ever had. I want you to go everywhere with me. Thank you. I'm honored to be here.

I'm excited to have you here. And as I said in the intro, you know, when we think of grief, we think about the loss of a love, and we think about the loss of a person. But grief can be the loss of anything that we, that we expect, things that don't turn out the way we expect them to. So for you, tell me about your journey with and how you got started on this path.

Yeah, um, so it was, you know, when I became a patient with a life changing diagnosis, in particularly mine, multiple sclerosis. So, you know, it was, uh, back 30 years ago, I was a single mom. I was, you know, doing the work and thing, kind of really the first serious job in my, in my career. And I started having a lot of the very bizarre symptoms. Um, couldn't really feel my left foot, felt like I had like some, you know, electrical shock coming up my left leg or spiders crawling up me. And I think only if you have MS, you kind of like— I'm always trying to think of an analogy that maybe I think when you're— if you've ever had a body part that falls asleep, like to the point where you can't move it, it was feeling like this. And that started my journey of going to different healthcare professionals. Kind of saying, hey, you know, I think something's wrong with me. I'm a person that has a lot of energy and I had this overwhelming fatigue, like could not function. Like the thought of like getting out of bed to go to the bathroom was just like not going to even happen. So this persisted for a number of months. And, you know, I got into some various, you know, healthcare professionals. And it's funny, I told you at the beginning of the show, I love the name of your podcast because grief is real, man. And, you know, there was grief after my diagnosis. We can talk about, but even the grief you feel when you're not being validated and heard and seen by people you think are supposed to help you. So, you know, I had one physician tell me there's nothing wrong with you. You're just stressed out, you know, single mom. And that sort of, you know, hurt my self-esteem. And I was grieving. Well, am I bad because I don't have a spouse, you know, raising, helping me with my daughter and grieving that whole loss of a co-parent. And then I went to another health care professional that said it was because I'd had a child, you know, and at this point, too, I'd been temporarily lost my vision in my left eye. I'd been like on and off blind, couldn't control my bladder, you know, just randomly would lose control of my urine. And, you know, I said, well, do all ladies that have had babies have this happen to them? Like, this didn't sound right to me either. And, you know, so I went home and started to lose hope. And, you know, losing hope, I don't know if you can equate it to a grief per se, but I know when you don't have any hope, your world starts to look very limited. And yeah, and your choices, you know, if you have no hope, why make a choice? So I started losing hope. And started giving up on myself. And I think the ultimate grief moment for me in trying to seek out a diagnosis was when I had, uh, a neurologist. Um, I'm originally from California, so this is a leading neurologist in the San Francisco Bay Area, basically look at me and my dad who had kind of carried me in and said, I'm going to ask you a series of questions. You know, do you own a firearm? Would you hurt your daughter? Would you jump off the Golden Gate Bridge? And I was like, this is after he examined me in his office. And I like had this feeling swelling up going, this are weird questions. Like, you know, why is this? And then he just didn't even look at me anymore. He just like turned to my father. I became like persona non grata. Wow. Then he said to my dad, um, there's nothing wrong with her. Like, she doesn't, she doesn't have an, like, you know, like MS or lupus or RA. These had all been things that had kind of been thrown around by talking to friends and neighbors, you know. He said she's got a severe form of mental illness and needs to be committed today. These are all made-up symptoms.

Oh wow.

And that was really heavy. And, you know, I— we said— I said a word that I— you know, it's in the book. I won't use profanity here. Let's just say first word starts with an F, the second word was you, which confirmed for him, right, that of course, see, yeah, look at her, she's crazy. Um, and so Dad got me out of there and put me in the car trying to give me the Snow family pep talk. But that was the day I really first experienced the lowest of lows. And it still remains probably one of the biggest ones, if not the biggest one in my life, because for 30 seconds or a minute or something, I did question my insanity, my, my sanity. I was like, I was like, You know, this is, this is now the third doctor I've been to and this and what's happening to me and I'm losing my job. So now I have no form of employment. I can't pay for myself. I can't pay for my daughter. I'm sick. What am I going to do? And all these runaway racing thoughts. Wow. And I gave up. I gave up that day.

Wow.

And I went home and, you know, dad's pep talk didn't work. And it was my young daughter who kind of came in with her big blue eyes and said to me, you know, "Mommy, are you gonna die?" And I didn't know how to answer that question. Who the hell does, you know? And she's just like, "I only have you." And it was kind of that mother's love and instinct where I was like, okay, I can't give up on her. You know, even though I'm giving up on myself, I can't give up on her. So let's try one more doctor. And it was a few weeks later, you know, a very kind physician who listened to me, asked questions, validated me, all of those things, said to me, I don't think, you know, I don't think you're crazy, Miss Snow. I don't think, um, you know, you have these other conditions that have been talked about, but I do suspect that you have multiple sclerosis. We're going to administer you to the hospital today and run some tests to confirm that diagnosis. And, um, that's an interesting feeling for any of your listeners who are, are dealing with, you know, whether it's a life-changing, a chronic, a terminal, is that's the day that also still stands out as one of the most intense days of my life because it was confirmed that I had MS and it was devastating. And that's when the grief really started. But also on the other side, I was thinking, if it has a name, And we know what it is. Now maybe we can do something about it. So I wouldn't call that moment growth yet, you know, I wouldn't, but I would say there was a glimmer of something. But before that glimmer of something really took root, you know, I went through a lot of grief and it's one of the very first chapters in the book I wrote. Yeah. Because I don't know anybody I have— I have yet to meet somebody, and I've talked to patients all over the world and their families that haven't had grief just hit them bang on in the face when they get the words, you have X condition.

Yeah, well, there's so much you said in there that's so important. You know, one of the things you talked about was having hope. And I think that the, the one thing that humans need is hope. And the one thing, if we have, we can endure pretty much anything, is hope.

I agree.

If we have hope of a better outcome, hope of something, that's, that's what we need. That's what we need as humans. So for that hope to be slipping away from you, as you said, that, that's a form of grief before you even get the diagnosis. And my understanding is MS is, is very difficult, at least was very difficult to diagnose. So stay with us.

We'll be right back.

You know, one of the hardest things about grief— most of the people in your life just don't get it. They want you to be further along than you are. They get uncomfortable when you bring it up, so you stop bringing it up. And that's why I started writing. My Substack is where I go deeper. Thoughts I don't always get to on the podcast. Essays on consciousness, on continuing bonds, on what it actually means to carry a loss and still build a life. The stuff that used to keep me up at night, written out in a way that I hope meets you in the morning. But here's what I didn't expect when I started it: the community that showed up. People who are doing exactly what you're doing— listening, learning, trying to find their footing. Readers who comment, who share their own stories, who remind each other that none of us are as alone in this as we feel. And that's what the Substack has become. A place to go deeper with me and to find your people. It's free to subscribe. Find me at grief2growth.com/substack. That's grief, the numeral 2, growth.com/substack. Or just go to Substack and search for Grief to Growth. I hope to see you there.

Yeah, it's gotten easier with diagnostic tools and diagnostic imaging. I'm happy for patients today, you know, getting a diagnosis more effectively than perhaps that I did. But again, I think it, it comes back to— and I don't want to be off topic, but, you know, it also comes back to training for our physicians in this country. And I'm speaking specifically now of the United States, that, you know, they get 10 minutes on, um, you know, compassion, humanity, humanity, um, delivering tough news. And so, you know, I would love to see, um, that change because this, while it might be part of your everyday job, just delivering this type of news, um, it's the only time in your life that you'll hear this type of news and it rocks your world and foundation forever.

Yeah.

So, um, yeah, and then, then starts the process.

Yeah. Well, you, you know, I appreciate you sharing that because it does show how complicated grief can be. Like you said, you went from one form of grief with people not believing you and telling you you're mentally ill to when you get the diagnosis. Well, then there's— my understanding, a lot of times there is a sense of relief Now there's a name put to it, but now you have to deal with what does this mean?

Yeah, what does it mean? And, you know, I think— and it's actually kind of one of my favorite chapters in the book, you know, and there's 5 stages of grief that you, that you've heard about, perhaps read about. And I tried to take readers on this journey of like how grief moves to a form of accept, you know, anger and a form of acceptance. But The grief stage is very nuanced and very layered too, because early on the grief was a little bit about poor me, or, which is really a horrible place to be, what did I do to deserve this? Yes. And I just want to— every pod that I do, every interview, like, I want people to feel with like empathy coming from my heart. You did nothing to deserve this, you know, because you don't need to layer on guilt too, right?

Yeah.

And you did nothing to deserve this, you know. This is not a— this is not a form of retribution. This isn't God saying you're a bad person, whatever it is. It's not the universe putting a spell on you. It's unfortunate, and you did nothing to deserve this, but that part of grief does take hold a bit, like, and, you know, poor me, what did I do to deserve this? My life is worthless. Or what am I going to do with my life? I can't do anything with my life. And this fatalistic, catastrophic thinking can really take hold. And people, I've seen, you know, people living with conditions just stay in that place for so long and so long. And then it gets harder and harder and harder to kind of own the grief and work toward the anger around that grief and get to acceptance. And the caveat here is when you work this stage, it doesn't mean that it's not going to come up again, right? I've had MS for 30 years and, you know, I don't want to get too close to the on camera, but about 2 weeks ago, I had a very bizarre small MS attack that has affected the left side of my face. My smile was a little different. My eye was a little different, and it was kind of a new symptom. And I was like, uh-huh. I mean, here it is. I'm kind of an old pro at MS, but I grieve that. I'm like, okay, I hope that this is not going to be how it is because it's affecting my vision. And, you know, externally it looks different. So you're going to always have some of those feelings come up. My goal for people is that you know how to handle them a little bit better than when you're early diagnosed and acute and really in it.

Yeah, well, you know, it's interesting. Grief is— what I've realized is grief is not actually an emotion. It's more of a container. Of emotions, and it's something that we process and we go through. But we do have these attendant emotions, these parasitic emotions that kind of come along with it. And, you know, guilt is— it's funny you mentioned guilt because I'm just working on a course I'm finishing up on guilt and grief. There's something about the human nature that says somebody's got to be to blame, something's got to be to blame. So we will even turn to ourselves I'm to blame. What did I do wrong? I must be a bad person. God is punishing me. And those things are not helpful at all.

No, no, they're, they're, they're really not helpful. And, you know, I always say, whether it's been in business when I've had a ment— you know, been a mentor to somebody, or, you know, my adult daughter or other patients, you know, you have to be really careful of the soundtrack that you play in your brain. Absolutely right. Absolutely. Because it can become a form of reality. And this is not the time to get into a place of like self-hatred or playing a tune that is self-berating. This is a time for you. And even if you have to sort of fake it, right? Even if you have to sort of tell yourself for a while, I will get through this. I will have hope. It will be okay. I will build a network. I will surround myself with the right people, the right healthcare team. You know, form of manifesting really in a way, right? But it kind of helps move you toward action and just little bits at a time. When you hear, you know, like all of— I've worked a lot in breast cancer and different forms of cancer. I mean, some of them terminal. I mean, this mind-blowingly difficult. So you can't process everything in a day, right? You just can't. You can't process everything in a week, and that's okay, man. That's okay. And what do they say? You can eat an elephant one bite at a time. I mean, just, just take it as it comes. And if all you can do on that day is, you know, get a name of a doctor that might have some hope and promise for help, terrific. Put that, put that sort of like in a place in the box, to use your analogy, that starts to make the grief, make the anger, make the guilt a bit less.

Yeah, absolutely. So when you got the diagnosis, how did it initially affect your sense of identity?

Oh, it was gone. It was gone. I mean, you know, first of all, from a physicality perspective, you know, I was in my late 20s, you know, using a cane. So that was what old people needed, right? In my mind. So it was, it was basically, physically, I looked different, you know, I had to take a medication that put a tremendous amount of weight on my frame. I slowly deteriorated and then it was a wheelchair. The medication made a lot of my hair fall out. Like it was externally hard, but internally it was extremely hard because cognitively I started to be a little slower. Word searching, fine, like, or memory. Like I knew there was something, but this is when I was acute. You know, having a very big MS attack. So my thinking was a bit muddled. Like I said, I lost my form of employment, so I had no money. And, you know, if I didn't have a family that had had some financial resources, I mean, my daughter and I would be out on the street. We'd be homeless. I couldn't pay the rent, you know. And these, these things add a whole nother layer of complexity to grief.

Absolutely.

You know, I, and then I think the thing that sometimes people don't think about, and I really didn't think about it when I was in it, only thought about it when I was writing the book, you can get into this place where you're mourning all these things and grieving all these things that you've, that haven't even been your future yet, that haven't even come to fruition, that haven't even been there. And it can become a form of catastrophic thinking. You know, I was grieving all kinds of things. I'm going to lose this. This is not going to happen. And that actually wasn't even my reality. So even more important to stay present because it can be a runaway, it can be a runaway train if you start grieving these phantom things. So what now in retrospective, what was real is I was grieving the loss of my body. I was grieving the ill effects that MS had on me. And I was, you know, grieving the changes with my dynamic with my daughter, and the fact that I didn't have a job. So I can now say, the grief was around these things. And if anybody's at this place right now, those are the things to focus on to try to start to solve. Don't try to grieve things that you think you're not going to be able to have or do 30 years from now. You just don't know that yet.

Exactly. Yeah, exactly. And that's what's great about perspective, you know, and, and you sharing your story now, because, uh, what, what was the prognosis 30 years ago when they told you you had MS? What did they tell you?

I would never walk again. Yes, they told me that. And for those people that know me, I'm a little competitive, and all you have to do is tell me I can't do something, and then there's there's a switch in my head. But that's not necessarily the reason why I was able to walk again. So I want to make sure I'm not spreading false information. There's enough of that out there today. So, you know, MS is a neurological condition of the brain and the spinal cord. It demyelinates parts, and that's like the communication channel. So if you have a demyelinating, you know, lesion, at a part in the brain and spinal cord. It's like real estate, location, location, location. That will affect what you're able to do. Some people have a more mild form of a relapsing MS. Some people have a primary form of the disease, which is much hard to see a lot of any kind of reversal or going back to a baseline. So I have a relapsing form that's probably now in retrospect, because I was treated early and treated pretty aggressively, has not progressed like statistics were when patients were untreated. So for about 3 and a half years, I did have attack after attack and struggled with, you know, walker, pain, wheelchair. That was sort of the repertoire. Physical therapy 3 times a week, occupational therapy 3 times a week. And I received one of the first FDA-approved drugs for the treatment of relapsing MS, which I think wasn't the whole story, but it was, it was part of my treatment paradigm, if you will, that I think helped my, my outcome. But, you know, also I have to say, I mean, Dad's right. Power of positive thinking played a big role too. I started to, you know, shed the grief, get over being so effing pissed off, you know, and let go of some of that anger, tried to accept this. And I remember, and I write this in the book, I kind of remember the day, and this was headed to my growth part, it still sort of chokes me up and makes me a bit teary. That I was thinking about MS like a really awful weed in your tomato garden. And you're from Ohio, so I'll tell you this story. My family's also from Ohio and they take such pride at growing these beautiful tomatoes. Nothing like a beefsteak tomato, right? From a garden in Ohio. Every summer we had them. And I thought about like this weed in the garden just drangling out, you know, the beauty of this plant. And I kind of thought that's what I was allowing MS to do to me. And that I still had, you know, fruit to bear. And I still had a life to live. At this time, I was just only 30 years old. And I thought, you know, instead of viewing this as something external, like a force happening to me and assaulting me. I need to realize it's part of me and I need to take its hand. I remember the imagery I used. I need to hold its little hand in that garden and walk across and make MS part of who I am.

Wow.

So that was kind of the day for me that I was like, okay, now that you fully accepted this. And ironically, the beauty of it, that's what makes me tear up. Now you can maybe grow and reimagine a new you.

Yeah, I was going to ask you to describe the difference between acceptance and, and giving up, and I think you just said it beautifully right there.

Thank you.

It's not that we're trying to fight the the disease or the pain or even the emotions, the guilt and the anger and the sadness. We accept them as part of us, we resolve them, and then we move forward with that, you know. So there's a difference between accepting and giving up.

I completely agree. I completely agree. And, um, and I think giving up, you end up staying in grief and anger too. Yeah, exactly. You know, 100%. So It is like, and if, again, not that you're not going to have that come up at sometimes, but that acceptance is really where the turning point happens. The growth happens, the joy happens. And for me, I remember thinking, okay, well, I'm going to have to do things differently. You know, I might be making breakfast for my daughter, putting toast in the toaster for her to go to school in a wheelchair. But at least I'm doing it for her, right? And where she will have core memories that her mom fought hard and was present for her. And that became more important to me than, you know, not doing it like the other moms.

Yeah. So you were late 20s, early 30s when you got this diagnosis and are dealing with this MS. How did this change what your view was of your life's purpose?

Yeah. So it, you know, my life's purpose before, I think like probably any young person, I hadn't given a ton of thought to. It was go to work, pay the bills, enjoy my kid, have some fun, that type of thing. After I became sick and I spent like the first 18 months, almost the majority of it in and out of hospitals, particularly one long stay where I did have my 30th birthday and rang in the new year for 3 months in a long-term rehabilitation center. And, you know, that was incredibly difficult and incredibly humbling. I mean, the average age in there were end stage of life, you know, 80 plus with not MS, No dementia, like dementia, nobody like me. And, um, but the empathy, I think that started to really, I think I've always had like a strong empathetic part of me, a strong intuitive part of me, um, a strong caring part of me that just was like magnified, you know, I often sometimes think of the Grinch when you see that holiday show, the Grinch, you know, His heart was small and it just grew bigger. Like the more he gave and the more he accepted, the bigger his heart get. Not that I was Grinchy, but, but I think it just amplified that I hated seeing people suffering and I hated seeing people suffering where nobody stopped to kind of make, to care. You know, it was really transactional. They would come in and make me do this test and that test and throw the food down and, you know, drink. And like, it wasn't— it wasn't anybody really caring about me or any of these other people. And that really became a life's purpose for me. I was like, I deeply care and I want to do something So nobody ever has to feel as lousy as I felt these last 3 months. And, you know, that was one of the basis of my company, and it's why I do so much philanthropy work and give back, because I'm lucky that I'm able to. I'm lucky that I want to. And, um, MS, that is the beauty of my diagnosis, of really trying to connect with people and let them know that there is hope and they're not alone and somebody does give a damn.

Yeah. Yeah. So tell me about Snow Companies.

Well, I think the first thing I will tell you is it was a joy to build. I was a sort of an accidental entrepreneur. I had no idea what I was doing. But when I got to a point that I knew that I needed some type of job to pay the bills, and was better. I'm going to put air quotes around better because, you know, again, it's a chronic condition. There's no cure for it, but able to do more is probably an adequate way to say it.

Sure.

My experience as a patient sort of highlighted a lot of what I thought were some unmet needs out there. And I had found, because I'm a talker, And I care that every place I was going, I was talking about MS and how to make people feel better. And how in turn, the gift back to me, it made me feel so much better. I thought, wow, there's real power in narrative and storytelling. And long before it became, you know, a buzz thing. And so I was approaching different nonprofit organizations and saying, hey, I think that there's ways instead of these support groups that feel like a pity party, you know, there's got to be ways to get people connected to share tips and strategies and positivity and hope so that our lives feel a little less heavy. And then I learned, yeah, I mean, you know, they're doing all this great, fantastic fundraising work to keep the lights on, and to help their constituents, if you will. And there's just no budget for consultants or whatever you wanna call it. And so it was one day that the FDA-approved drug I talked about was sent to me and I was kind of trying to figure out how the heck to do this and what it meant. And at this time my doctor didn't even really know. It was just the first time ever. I thought to myself, Oh my God, the people that make this stuff probably never even talked to somebody like me. So that was how I kind of opened the door to my work in life science industries, specifically in biotech, because I boldly had my father drive me, 'cause I still had impaired vision, to the company that makes this and banged on the door, which I've since learned sort of sends off alarm bells. But that's sort of my personality type, and they were very gracious. Friends with the woman who was the marketing director then, and still friendly with her today. She gave a nice shout out when the book came out, and I said, hey, why aren't you working with patients? Like, you have this drug that is appropriate for some people, not for everybody, but It's really, it's really starting to be effective for me, but I can tell you've never talked to a patient. So, you know, we, we exchanged phone numbers and over the course of a couple of weeks, you know, it was like, you're right, we never have.

Oh, wow.

And I was like, wow. So I shared my story. I wrote my first patient narrative story and was invited back to speak to the team of scientists who took this molecule you know, through to approvals and talked to a bunch of people there. And then that started off my kind of career as a consultant and building things like, these are products that you have to inject or infuse. So why isn't there a nurse available for you 24/7? That had not been really done before. So if you're a patient and you can't get ahold of your doctor, like, who are you gonna call, right? How are you gonna answer some of these questions? So that led into a few years later founding SNOW, really with the focus on connecting people, you know, with the same kind of conditions, with inspiring voices, with tips and strategies through a variety now of platforms and ways to connect, not the commercials on TV. I'm not talking about that stuff. We don't do anything like that. Really people that are engaged and want to dialogue. And so it's, you know, just grew year over year over year. This May, I did step away as the Daily CEO with a lot of mixed emotions, but I have the most amazing successor that I feel blessed that I got to sort of hand-choose and groom. And, you know, my career focus now is the book. I'm writing a second book. And like I said, my philanthropy work. So, yeah. Yeah. So, but it was the ride of a lifetime. You know, I learned a lot about business. And again, if you told me 30 years ago, I would go on to win an award, you know, build an award-winning business that disrupted the life science industry and employs 425 people globally today, I would have told you what that doctor told me, you're crazy.

Awesome. That's awesome.

Thank you very much.

So it's, um, support for people that have chronic illnesses. Is that right?

All kinds of life-changing divas. So patient education, patient support, um, again, connecting with people like you. Um, yeah. So, and I think it's really, um, at least, you know, the people that I've worked with and heard from, whether they were kind of sharing their story or they were touched by somebody's life, you know, I've got cabinets full of lots of wonderful letters and cards and poems for the staff and the team that has, you know, helped make these connections. And I think it's made people feel they're not alone. And that's the number one thing that you definitely want to feel when you're living with a life-changing illness, that you're not alone.

Yeah, that's amazing. So how long would you say it was after your diagnosis before you got the inspiration to start, start Snow?

So I was diagnosed in '93. By like mid-'96, '97, I was kind of doing the consulting thing. And when I saw that there was a lot of power in that, like every place I went to share my story, I, you know, I had a queue like to talk to me and, you know, like I was, I don't know, somebody really important and famous, even though I wasn't. So I was like, wow, this is working. Like people really want to talk and engage. And so then I formalized in the form of a corporation in 2001.

Okay. I wanted to give that timeline because, you know, when we get devastating news like this, a life-changing illness or the loss of a person or whatever it is that triggers a grief event, yeah, we can, we can get really narrowly focused and go into all those emotions and feel like this is, this is it, it's over. You know, my analogy is my, my brand is Grief to Growth: planted, not buried. We feel like we've been buried. We feel like, you know, because when you bury something, it's not coming back, right? We bury things to get rid of them. But you can be— you can look at it as being planted. But the thing is, that early phase, right, when you first plant a seed or when the caterpillar goes into the cocoon, it's pretty ugly. You know, it's ugly during that time. So I want people to understand we have to be patient, as I think we talked about before. We don't make these transformations overnight. What we can have in that early phase is just hope. We talked, you know, circling back around to hope that something, something can come of this. I just don't know what it is yet.

Yeah. And I think it's important to just not give up on yourself, right? It would have been really easy for me to give up on myself because when you're feeling low tired, sick, depressed, in grief mode, anger mode, it's not like you have the thoughts and are like, great, well, I'm not going to give up on me today because something awesome is going to happen. No, that's really— it's really, really hard. So have that patience. And I tell people, pick the little wins. To help rebuild yourself. Pick the little wins. You know, I told you about making that toast. I mean, most people would think, hello, but that was something that I focused on. I was so proud of that that I'm talking about it 30 years later, you know, that I was able to do that. And so I just focused on the little wins and that started to kind of put me back together. And every time that I could do something more that I didn't think I could do, or every time I achieved something, or if I was letting go of crippling emotions, I remembered to tell myself, right on, you're doing great, girl. And that's what I think people need to remember to do. Otherwise, you can just keep berating yourself.

I love that. That is so important. And I find with my clients so, so often they neglect how resilient they are, how far they've come. You know, the fact that, you know, that you got out of bed this morning. You know, I tell people, you, you know, you've lost a child, you've lost a spouse, whatever, you got out of bed and you got dressed. You know, um, that's an accomplishment. And we don't, we don't do enough of that positive self-talk, which encourages us to take the next step. We can, we can always focus on what we don't have and what we can't do. But it's— that's not helpful.

No, it's not. And, you know, over the years, I think just you mentioning, you know, people that lost a spouse or a child, I've unfortunately, you know, been to too many funerals in this line of work. And, you know, I just— my hat's off to those who, especially with the death of the child, it's— I'm working on, like I told you, the second book and conducted an interview last week, and I just, I can't even imagine, you know, the hard work and the grief and the pain. So just a shout out to your audience who are in that space. You know, it's, it's, I can't imagine how it feels, but I have so much respect for people going through that, that just sending a big virtual hug.

Yeah, I appreciate that. Well, the thing about grief is it's both unique and universal. You know, every, every loss is different, whether it's, again, loss of a person, loss of a pet, loss of a, you know, loss of your health, whatever. That's unique. But there's also some universal things about it. It's that, that it rips us down to our core. We kind of have to rebuild and start over again. But it can be a growth opportunity if we allow it to be that.

Yeah, I really love the way you said that. That was, that was, that was beautiful. That's bang on, perfect. Guess that's why you're hosting this podcast.

Well, like, as I said, we— I've, I've been fortunate enough to talk to a lot of people that have been through it, um, and I love, you know, talking to people like yourself because I remember what it must have been like for you to get the diagnosis, or like was for me when my daughter passed away. And I know that the darkness that, that you feel, like there is no— and so I want, I want to put out people like you that can inspire people to say, again, I don't know how I'm going to get there, but if Brenda can get there, then maybe I can get there eventually too. Um, because we're all I think we're all a lot stronger than we think we are. And what people look at people like you, and maybe some people look at people like me and say, oh, they're, they're different, there's something special about them. And there's not.

No, 100%. I couldn't agree with you more. I couldn't agree with you more. I think everybody has that, that, that intrinsic desire, um, to, to find joy. And like you said, to find a life's purpose, um, in spite of terrible, you know, tragic events in one's life. Um, and it doesn't mean it's going to be easy. It doesn't mean that it's going to still come up on occasion. But, um, you know, you are worth— you are definitely worth finding, um, a place of peace, I think.

Yeah, absolutely. So let's talk about more about your book, uh, Diagnosed: The Essential Guide to Navigating the Patient's Journey. What are people going to find when they pick up your book?

They are going to read— well, it's the book I wish I'd had 30 years ago, I can tell you that. And they're going to have some things that make them laugh and things that make them cry. And it's not a memoir. But there are some crazy stories about my, my journey that, like I said, I think people— well, I have heard that people have found insightful. You mentioned one, we talked about a little bit, the identity earthquake. That, that, that happens for a lot of people and keeps you in the grief and the anger cycle. But I think what I tried to do, like there's 5 stages of grief, I tried to sort of write a book that says this is about what you're to expect. Here's the stages that you're going to go through of emotions on the front half of the book and sort of the second half of the book is you know, what are some thoughts and, you know, I opine a little bit on how you go forward and build a life of meaning and purpose. Resiliency is a great chapter in there. So I think, you know, you can open the book at any place and, you know, I mean, you can read it cover to cover, of course, but, you know, I think if you're having a particularly bad day or you're stuck on something, you can, you don't, you can just kind of open that chapter and probably find something in there. I love that there's also a little bit of things in there for the caregiver, not a lot, but it's why I've decided to write a second book because a lot of the response I got was like, wow, this really hit for me, but I'm not the patient, but this part was are you gonna write something for caregiving? And then sort of, I have an idea and I'm in the early stages, I'm like first chapter in, but I think, and I think, you know, the book's not for just MS patients. I think it's, you know, anybody that's had a life-changing diagnosis will find some value in this book, find some humor in this book. You know, Brian D Smith, they're gonna find a few dirty words too, I'm sorry. Second book, Second book, I'll have less. This one was cathartic. I needed to get it out.

Yeah, I understand. I understand. Sometimes you have to let those things out because you really want to— I mean, you have to express these, these emotions. Think about all these emotions we're talking about is they have to be felt, they have to be honored, they have to be expressed. When we, when we try to suppress them, they just hang around. And that's when they really do the damage. So 100%.

And at some point, just like a volcano, they are going to come out and then you're going to be heavy in resentment, heavy in guilt. It's going to, you know, it's going to maybe blow up your relationships at home. I mean, yeah. So it's a courageous conversation. You have to be vulnerable. You have to be okay with letting people see the raw parts of you. Yeah. And inviting people to show that to you too.

Yeah, let's talk about that. Let's talk about the importance of being vulnerable.

Yeah, well, I think again, that's one of the blessings for MS for me that sort of became a superpower. I mean, I am what you see is what you get. I'm totally okay with being vulnerable and it's very freeing. It is very freeing if you can develop the skills in a productive, adult, you know, meaningful way about your deepest, darkest emotions, your fears, the things you feel insecure about, and in kind have it validated or reciprocated. I mean, this is the holy grail of communication, in my opinion. Yeah, in my opinion. So, you know, I think there's been times that I was afraid to have my voice about what I needed. And then after a few times where I suffered due to that, I said, forget it. You know, it's like, for me, and it's truly vulnerability is truly living your authentic self. I think it's the very definition. So, you know, I think there's ways that I've kind of coached people like door openers if you're afraid to be vulnerable. But like, let's say you have a caregiving partner in your house and, you know, you are very, very nervous because you see that their attitudes changed a little bit or your relationship isn't what it was. A lot of people default to not saying anything, like you said, or getting really crunchy. With each other. I think it's really okay to have check-ins, scheduled check-ins, and say, are you okay right now to be a part of hearing that I'm feeling in a way that's really heavy? Or are you okay for me right now, Brian D Smith, to ask you some questions? Because I'm feeling, you know, some nonverbal communication or energy from you that I want to clear up because you matter to me. And can we have that conversation right now? 99% of the time, people are going to say, yeah, thanks, man. That's brave. Right.

Right.

So very rarely have I heard stories over the year of somebody turning around and telling somebody, screw you, I'm not talking to you. I mean, I'm sure there's somebody out there that's done that. But when you're brave enough to do it, it comes back to you.

Yeah, I think that's so important. I have a friend that passed recently from ALS. Um, and she wrote a great book. And it's funny, you're talking about some curse words being in your book, and, uh, she had a real potty mouth.

So, uh, right, I like her already.

Yeah. So she was like trying to come up with the title for a book, and she was going to say, I wrote this with my effing eyes, you should read it with yours, because she got to the point where she couldn't type. She had to use her eyes to control the computer. But one of the best books I've ever read, you know. So I'll have to get so vulnerable and talk about, you know, relationship with her husband, you know, her caregiver. And that's what we really want. We want authentic connection with people. We want to know that people deep down are just like we are. And if I see someone like yourself, and I just put you up on a pedestal and say, well, she's just this dynamic person, she started this company, blah, blah, blah, then I don't— I can't see myself in that. I could see myself when you tell me about the pain that you went through and the despair you went through, that I could see myself in that.

Yeah, I couldn't agree with you more. I couldn't agree with you more. And that's why I have been completely open for the entire time. I remember even getting counsel at one point from somebody that said, you're trying to get a job, you should never tell anybody that you have multiple sclerosis. You have to hide all of this. Like, you got to make sure you never take that cane out. Like, you know, Nobody. And I mean, to me, that was kind of like, I mean, there are some people that are comfortable with that and you do you. But for me, I was like, no, because for me to spread awareness, to keep giving hope to others, but to myself too, I have to speak my truth about this condition and about how I feel. And, you know, even my daughter, you know, A lot of people hide it from their kids, and I gave her age-appropriate information as we went along. But she was, you know, I was very, very vulnerable with her too, because otherwise little people make up stuff in their head.

Yeah. Yeah, exactly. They know something's going on. If you don't tell them the truth, they're going to make up something, which is probably far worse than the truth.

Mm-hmm. Yeah. Like she thought I was going to die. Once I got the diagnosis of MS, I knew I wasn't going to die from it. So immediately I could reassure that because I sat down and told her, you know, what a 5-year-old could understand what was going on. But every year she got older, you know, that became a different conversation. And, you know, she's amazing.

Yeah. So we've talked— we've touched on this a little bit, but what are some changes you think need to be made to the healthcare system? You know, having been through this for the past 30-plus years?

Well, this is a very, this is a very, very big question, and we could have a whole other hour on it. And I'll just add this, you know, disclaimer and caveat that, you know, I am not an expert in the areas of insurance and things like that. But, you know, you hear in the news, previous administration, the administration now, whatever, it's been a topic for a conversation for a long time, you know, the price of drugs is problematic. You can get some of these same therapies in other countries at a very different price point than here as Americans. And as a result of that, there are patient communities that have unmet needs. They have literacy issues. There's a whole host of things that I, you know, actually worked in with my company, um, that, that these patients are not getting because they're being treated suboptimally. So that is something that I feel needs to be addressed because it should not matter, you know, what your bank account looks like, the color of your skin, your gender, who you love. It shouldn't matter if you are getting diagnosed with something. All of, all of us should have the ability to get and receive care that we need. For me, period, that's the end of discussion. Um, so how do we address that? You know, um, that's tough.

I have some ideas, but again, uh, yeah, well, you know, and I'm, I'm not scared to say it, you know, the fact that healthcare is a right, I don't think should be a controversial opinion. I don't think it should be a political thing. Now, how we do it, you know, that's up— that's up for debate. But I completely agree with what you're saying. I think that people have a right to have access to, to, to life, you know.

It's access to life, you know. And in my career, I mean, this is the saddest of stories. I cannot tell you how many people had a condition where there was— it happened in cancer and a few other— where there was a medication that could literally prolong their life, give them more time with their families, give them more time, and they were denied access to it because it wasn't approved. Yeah. And they died early. For me, this is a problem. I think also I touched on it before, people going into the field of medicine, you know, I have mad respect for. I do think from a medical school type of education, even when, when people go on to do their advanced training and their advanced degrees, we do need to put more emphasis on looking at people as whole, as a person, as a, as a, just like them and their family, right? And have some more training on how to have productive conversations, deliver hard news, be empathetic long-term in the care of that patient. I will have this shit till the day I die, right?

Right.

So, um, that's not a transactional relationship between me and my doctor.

Right.

And that's one that I need to be with a human on that journey. So I think that that can be something that maybe perhaps that we can do better, providing that kind of training. And, you know, as I'm thinking about this caregiving book and you really look at the pressure of the sandwich generation, meaning they're caring for older patients while they still have kids or dependently financial kids under things. I mean, you talk about squeezed. So there's like a whole world of caregiving that's under-supported, underfunded, undervalued. And I think as we have this aging population, that's going to need probably a few more solutions than we currently have in our toolbox.

Yeah, well, it's a good point about the aging populations. My, uh, my mother-in-law and my father-in-law both went through care in a long-term care at the end of their— at the end of their lives. And just trying to find people, qualified people, to work in those places is almost impossible. And then we all complain about the care that they give, but we don't take care of the caregivers.

Correct. And I hope, I hope to shine a light on that here, uh, if I can get the book done quick enough and out and published. But Yeah. And then also, you know, we have a shortage of people wanting to go into medicine.

Right.

And that's, that's gonna at some point become a problem to Ruth. So how do we, how do we motivate people? Or then we're going to see the advent of artificial intelligence, AI, coming in, in the treatment of healthcare. So again, I don't have all those answers, but Certainly, um, is it going to disrupt? Is it going to be favorable, not favorable? You know, time will tell.

Yeah. Well, Brenda, your, um, your story, your life is just so incredible and so inspiring, and I love your, your energy, and I love you're giving back to people and giving people hope. Um, so is there anything that I haven't asked you that you would like to that you'd like to cover?

No, I just think, you know, like I said, if the book is available on Amazon, it was a bestseller. I'm proud of that. But if people want to buy it, just know that all of my pro— all of my personal proceeds are getting donated to charity. But the other thing is, like I talk about, unmet needs in the patient population. If somebody wants a copy of the book that has need, you can go to my website, brenda@brendasnow.com, and I'm happy to send a copy, a signed copy.

Okay, so your website is brendasnow.com, is that correct?

It's, it's, yeah, brendasnow.com, and my email is brenda@brendasnow.com.

Okay, great. And, uh, remind people the name of the book again.

Uh, it's Diagnosed: The Essential Guide to Navigating the Patient Journey.

Awesome. Well, it's been great spending time with you this afternoon. Um, again, thank you for what you're doing. Thank you for what you put out into the world. And enjoy the rest of your day.

You too. You were great. My pleasure. Thank you so much.

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