Small Wins, Big Impact: Navigating Life with Muscular Dystrophy with Chris Anselmo

In this episode of Rebel Health Collective, I sat down with Chris Anselmo—the creative force behind Hello Adversity—to dive deep into his journey of living with a rare disease. I listened as he recounted the shock of an early muscular dystrophy diagnosis and how he discovered the healing power of writing. During our conversation, I learned how he balances physical limitations with staying active, celebrates small wins, and employs practical strategies to build resilience in the face of uncertainty.

If you’re looking for real, actionable insights on turning personal adversity into strength and finding purpose through vulnerability, this episode is one you won’t want to miss.

Guest Bio

My guest, Chris Anselmo (@christophernanselmo), is a writer and rare disease advocate who transforms personal challenges into empowering narratives. After being diagnosed with a form of muscular dystrophy, he founded Hello Adversity to share heartfelt stories and actionable insights that inspire resilience, foster community, and encourage authentic living.

Key Topics in This Episode

✔️ The shock and impact of an early muscular dystrophy diagnosis
✔️ How Chris navigates both the physical and emotional challenges of a chronic condition
✔️ The transformative power of writing as a tool for healing and self-discovery
✔️ Strategies for balancing activity with much-needed rest
✔️ Focusing on what you can control when facing life’s uncertainties
✔️ Celebrating small wins to build actionable momentum
✔️ Embracing vulnerability as a source of personal strength
✔️ The role of authentic storytelling in building community
✔️ Practical insights for transforming struggle into empowerment
✔️ Building a purposeful life despite limitations

Resources & Links

📌 Follow Chris on Substack: Hello Adversity
📌 Connect with him on Instagram: @christophernanselmo
📌 Join him on Threads: @christophernanselmo
📌 Follow Rebel Health Collective on Instagram, Spotify & YouTube
📌 Subscribe & Leave a Review to help spread the message!

If you enjoyed this conversation as much as I did, please share it with someone who might need a dose of inspiration to overcome life’s challenges. And don’t forget to subscribe and leave a review so you never miss another empowering conversation from Rebel Health Collective.

**Disclaimer: Please remember that the topics and information discussed in this podcast are for informational and educational purposes only and should not be considered medical advice. Always consult with your healthcare provider or medical professional before making any changes to your health regimen or implementing any new treatments. Your health journey is unique, and it’s important to work with your trusted healthcare team to determine what’s best for you.**

Chapters

• 0:00 Introduction
• 3:31 Chris’s Diagnosis & Early Impact
• 10:01 Discovering the Healing Power of Writing
• 16:46 Balancing Activity and Rest
• 23:51 Celebrating Small Wins & Practical Strategies
• 30:41 Building Community & Authentic Storytelling
• 38:26 Final Thoughts & Call to Action

Transcript

Josh (00:00)
Chris, how's it going? I am so glad to have you here. We connected a couple of weeks ago now and been talking back and forth. I found you on, I think it was Instagram or threads originally, and got linked over to your sub stack, which I've been subscribed to now and really just love what you're doing. I think we have some commonalities in our mission and what we're trying to put out into the world. So first off, thank you for that. Secondly,

Thank you for taking some time out of your day to join me and spend 30, 45 minutes just talking about the world we live in. I won't go on too much without turning it over to you and letting you introduce yourself, tell us a little bit about your backstory, your diagnosis, and I guess really what drove you to start your Substack and just your mission.

Chris (00:53)
Thanks, Josh. I really appreciate this opportunity to appear on your podcast today. So my story begins, well, it really begins back in 2003 when I was in a car accident in my senior year of high school. I was 17 at the time. And at this time I didn't have any symptoms of what I now know as limb girdle muscular dystrophy. And I was at the hospital. I was a little bit banged up, but it was otherwise okay. And before I was discharged from the hospital,

A doctor came rushing in saying that my blood work, something came back that was really unusual. I later learned that my creatine kinase levels, my CK levels for a normal person should be like a few hundred, mine was like 30,000. So they thought, okay, you had suffered an internal injury and I went back in for more imaging. It came back fine, but they weren't really sure what was wrong. Actually, that's the scary thing to hear. Even as I'm being discharged from the hospital, I needed to go back and get something like this figured out. So.

The next 10 months or so, kind of bounced around different doctors, different specialists. saw a endocrinologist because they thought it might be a liver issue. Then I went to a rheumatologist who suspected it might be muscle related, but he wasn't sure. Then I went to a neurologist and then I had a biopsy on my thigh. And about 10 months after the accident, about a month before I left to go to college, I got a phone call that I had a form of muscular dystrophy at the time.

They call it the dysferlinopathy, which is just a technical term meaning that I was lacking protein in my muscles called dysferlin. And of course I heard that, like, well, what could that mean? I don't know. Is that serious? Is it not serious? It was told to me that this isn't something that is life threatening per se, but it's something that would happen later in life when I was an adult. And I kind of somehow got it in my mind that it wouldn't happen until like later later in life. So I kind of pushed it out of my mind and went to college. I went to Northeastern University in Boston. I had a great time.

was asymptomatic, kind of forgot that I even had any sort of underlying condition. And then, you know, a few weeks after I graduated in 2008, I was moving to a new apartment. I was carrying a desk chair up the flight of stairs and I just noticed that my legs are getting tired a lot quicker than usual. And then a few days after that, I went for a run around the park near my apartment and same thing. I just noticed that my calves were burning, my hamstrings are burning and just everything felt tight and

Even at that time, I didn't really fully internalize it. The things were the symptoms of the disease starting to manifest. I just thought that maybe it was out of shape. didn't go to the gym that often, that sort of thing. Of course, then, you know, I just continually started having symptoms like that, random bouts of muscle pain, muscle weakness, things that used to come easily were getting a little bit more difficult. Running was becoming more difficult. was tiring out really quickly. So I went to a neurologist in the Boston area. This is late 2009 by this point and I was formally kind of re-diagnosed with

Again, it was just known as dysphorinopathy at the time, but it's basically equivalent to limb girdle muscular dystrophy as it's known today. And the neurologist said, this is something that actually is happening now. Cause I had thought again, it was going to happen later in life. And to hear that it was happening at age 23 versus, you know, 53, 63, or just something when I was further along in life was really a big shock. And in that moment, I just kind of mentally recalibrate all of the goals that I'd had for myself, all of the dreams that I had.

Everything I thought I was going to accomplish almost got upended overnight. Just now with the realization that within 10 years I was probably going to be unable to walk anymore. All the things that I used to take for granted in terms of physical activity was going to become a lot more difficult. And it was very difficult to accept that. I really struggled with, I would say, the physical part, but also the emotional aspects of the disease, of learning that all the mobility that I used to have, that I used to take for granted, was now going to be gone within a few years.

And, know, that was a really difficult time for me. As you can imagine, just coming to grips with what that meant, having to figure out how to navigate that next phase of my life. Around that time I started falling. So like I started getting weak enough for my knees would just randomly give out on the sidewalk. That was especially unnerving. And just all of this combined of just rapid muscle weakness, not rapid, but like consistent muscle weakness of getting to a point where the dreams that I'd had for myself of what I thought I was going to accomplish in life.

were no longer possible anymore, or what I thought were no longer possible anymore was incredibly tough. And I had to figure out how to manage that, how to navigate that next step in my life. And I really struggled for many years to figure out what would work. And I kind of eventually settled on writing. That was something I'd always been good at growing up. And since I couldn't exercise anymore, that kind of became an outlet for me to just explore my emotions, but also just to kind of think through some of the things that were happening.

and to kind of give my story as shape and a narrative. And that was really a big turning point for me. Now, because during this time, I'm in my late 20s, early 30s by this point, you know, I'm just continuing to get weaker and falling more and more. I'm starting to use adaptive equipment with forearm crutches, like braces, sort of thing. And just everything had just been completely upended in my life. But writing, turned out, was something that I could always do no matter my level of strength. It was something that I enjoyed, something I was good at.

And increasingly I realized as I shared my story, was something that was helping other people. So I was just writing about my life at that point. was just writing about my experience, how I was feeling, how it affected me, how it impacted me. And writing a simple blog was opening doors for me that I never really knew existed in terms of meeting other people that had similar diseases, connecting with others in the rare disease community. And writing quickly became an outlet for me in many ways.

I credit that with kind of helping me sort of stay afloat during this time. And gradually over the years, as I've gotten weaker and now I use a wheelchair, I now need significant help just to make it through the day in terms of just daily activities. I've really kind of found my purpose through writing, through sharing my story, through helping other people, you being able to write about topics, difficult topics that others might be experiencing, but might be struggling to verbalize themselves. Just letting people know that I've been through it myself.

I understand what you might be going through and I'll do whatever I can to kind of share the good and the bad of my experience and if there's something that you can take away from that that can help you. That gives me a really great deal of purpose and I really credit writing with kind of keeping me afloat in many ways when definitely was tempting to kind of, there were some dark days, I'll just do it at that. There were definitely days when I didn't think that I would be able to make it through it emotionally and I felt hopeless a lot of times and writing is.

that saved me in a lot of ways and kind of given me a path and a future that I'm really grateful to have. And that's not to say that I'm completely through all of those negative emotions. I'm never going to fully, I say I'm never going to fully accept in some ways what's happened, but at least I'm at a point now where I can move forward in life where it hasn't stopped me from achieving my goals. It hasn't stopped me from making new connections. It hasn't stopped me from finding purpose and meaning in my life. And also even finding joy. There are joyful elements of my life.

that's not defined by this disease. And that's been a really nice thing of just being able to resume life, pick back up life, rebuild new dreams that otherwise I might not have been able to take advantage of had I not been able to kind of grow from that experience.

Josh (08:13)
It's

a really great but difficult mindset to have. I mean, it's hard to get into that space of I've been upended. My normal is no longer. I have to learn basically a whole new life and it's easy to get caught in the there's no purpose. There's no meaning. Everything that I thought was going to be may not be achievable anymore. So it is important to be able to find that purpose and whatnot. I'm so glad that you did and you're impacting so many people now.

by putting yourself out there being vulnerable and telling your story and hearing it. We've talked a little bit, but I didn't know there was such a big gap. When you had been told that, hey, something's off, and guess some of the symptoms had started to come on. Was it just basically a, hey, this is down the road and it'll happen when it happens? Was there any intervention in between, any things that they told you, if you follow this diet, do this or that, exercise, it'll prevent it?

Or was it really just like a whenever it happens, happens.

Chris (09:17)
So I wasn't given any sort of intervention per se. When I was originally diagnosed before I had the symptoms, they didn't really know kind of what to expect. It's such a rare disease. Fortunately, they diagnosed me correctly, which unfortunately doesn't happen a lot of the time with this disease. But they didn't really offer any sort of suggestions on what to do. I think really the only piece of information I got, the only advice was, I kind of remember distinctly you're saying like, don't run a marathon and don't become a bodybuilder. That's fine, because I don't really enjoy exercising anyway. So like that's perfect.

Those are really the only safeguards that I was given in terms of what not to do. Then once I was re-diagnosed about five years later, really became about managing the disease. Like you said, there's nothing I could do that could gain strength back. But if I could find a way to minimize the weakness, to slow down the weakness, that was really the best case scenario. And hearing that obviously was not what I wanted to hear because I wanted to do something. I like being active. I like being able to do something to solve a problem. But I was being told really that there wasn't anything that I could do.

You said just cut down on alcohol intake. Not that I was drinking heavily, but just moderate it. Don't do a lot of strenuous exercise because too much exercise is bad. But I was also told don't do too little exercise. Don't be too sedentary because that's also bad. On one hand, you atrophy the muscles. On the other hand, you overtax the muscles and then they die off. Either way, muscle cells die and dyspheria aids in muscle cell membrane repair. So it needs to have some level of movement, but at the same time, too much of it is too damaging because if you damage your muscles, they can't regenerate.

So I was kind of just in this really tough place between the rock and hard place of just trying to figure out what the medium was. And I don't think that I found it because I still look getting weaker pretty quickly. I think I might've just overextended myself. And then there were days when I'd be so tired that I just wouldn't do any movement at all. And of course, all the while the back of my mind, I'm like, this is probably not good for me, but I had to go based off of what I was feeling.

Josh (11:08)
Yeah, and then you have a good day and overdo it because you want to take advantage of feeling good and all the things you've put off. I know how that goes.

Chris (11:16)
Yeah, it's tough because on good days you want to be active. Like on days of a mountain pain, I wanted to be out and about walking and doing things and being social and going places. But the downside is the next day I'd be stiff and sore. And my knee would usually tell me when I'd overextended myself because I'd either spasm or buckle or later on it lead to a fall. And then I realized, okay, I probably overdid it the day before. So it really was difficult to just figure out kind of what I could do to plateau it. And I don't think there ever really was a point when it fully

plateaued even for a few months, it just was always kind of a steady gradual decline in strength, which is really frustrating.

Josh (11:50)
Yeah, that's one of the hardest part about rare diseases is you just sometimes can't do anything about it. There's not a supplement, an injection, a medicine, a diet or anything like that that's gonna really help. It's just a matter of trying to like you said, monitor and maintain it as best you can and a lot of the times it's you need to move and exercise but also don't do it too much stuff like that. You need to rest but don't just lay in bed all day.

can be really challenging to do that and find that sweet spot.

Chris (12:22)
Yeah, I never did quite find that sweet spot, but it definitely made me more mindful of how everything I did impacted it in some way, which is good in the sense that it kept me from consciously just like going way overboard. But again, I never really found that sort of happy medium where things kind of slowed down a bit, which is a little bit frustrating, but again, it's passed. I can't do anything about it now, so.

Josh (12:45)
In your initial writings when you started to publish and you know put your thoughts and feelings onto paper for others to read, where was your mindset at during that time? Were you in a good spot or was it more of a just kind of bored vomit on paper and get it out?

Chris (13:04)
The first time I did it, a small foundation was asking me to share my story. So it was the disease foundation that's trying to find a cure for my disease. And I'd never really written about my story before. I was in an okay frame of mind at that point. I didn't think much of it. It was a good excuse to use my writing muscles that were laying dormant. But I did it and they're like, oh, this is really great. And my family read it, a few friends read it. They thought that it was really great also. And then I'm like, oh, I like this. I kind of want to do more of it. I somehow got in touch with the Muscular Dystrophy Association.

At the time they had a blog for young adults. I'd seen it just because I was registered at the foundation. And I asked, is this something that you're taking new submissions for? Like, are you looking for new writers? And they're like, yeah, yeah, we'd love to have you as a writer. So I started blogging there. This was about 2013. Again, not really knowing what would come of it. I didn't really have any expectations, but it was an excuse to write. And I found that I actually really enjoyed it. I enjoyed kind of putting words to what was going on with me, sharing my story.

What I did not expect and what I really enjoyed was connecting with other people, other members of the community that kind of saw themselves in my story that resonated with what I had to say. They felt the same emotions. And that's when I really started to realize that writing could be a communal activity. Yeah, you're the one writing, but you know, other people are affected by it. Other people are impacted by it. And that part was really rewarding. So, you know, that kind of planted the seed in my mind that someday maybe this is something I might want to do more of. So I blogged there for a couple of years and then I had a WordPress blog where I just shared updates on my story.

And again, people were reading it, people were commenting, people resonated with it. And it just made me, the more I did it, the more I realized that this is what I want to be doing a lot more of, even making a living off of someday. Over time, my mindset improved because it became something that I looked forward to. It was a way to connect with other people. I don't get out as much as I'd like to anymore, but as a way to still interact with people, to make new friends, to meet new people. It led to opportunities to attend conferences and speak, know, it to all sorts of different things.

And I was amassing this portfolio of work that someday if I wanted to expand and maybe write a book or if I wanted to become a writer or something, like I would actually be able to share all the stuff that I'd written with potential companies that might be interested in that wanted to hire me as a copywriter or something, or if they wanted me to freelance. I now had this body of work about my experience that I think reflects well on my writing abilities. And it was really exciting too. And just watching it, I would open different doors, different doors that I didn't expect when I first started writing was really motivating. And even today it's still.

excites me to think about the fact that I get to write and share my story and put it out there in the world and people actually want to read it. People are impacted by it and leads to all sorts of wonderful connections. mean, it's how I met you. It's I met so many different people. And I think that's been the part that's really improved my outlook and kind of my overall mood is just writing is something I get to look forward to every day. And now I'm working on a book based off of my experience, based off all the stuff I've written about over the years, was kind of the material that's feeding into my current book.

The way that writing has opened so many doors in my life has been something that I never anticipated, but it's been such a gift. It's been such a blessing to be able to have that as kind of an outlet for me that had I not had this disease, would I still become a writer? Maybe, but certainly it wouldn't have been about any of this stuff. All the people I've met through writing, the exact trajectory I've been on would not have happened had it not been for that very first blog post where I shared my story. I'm not sure if I answered your question, but in the beginning, the mindset was just like, I'll do this because I want to try it out.

quickly became sort of a lifeline of sorts. And through that experience, my mindset, my mood, my optimism, my hope for the future, all that stuff, I won't say I went through the roof, but like it definitely improved in terms of giving me something that makes me excited to get up every day.

Josh (16:40)
Yeah. And that kind of leads into where I was going where, you know, initially it was kind of just updates, things going on. It wasn't necessarily adversity driven because your substack and your blog now is hell of adversity. And so it's taking on adversity and that wasn't the initial thought behind starting to write, was it? Or were you just sharing at that point?

Chris (17:03)
Yeah, I think the switch came. So in the beginning, I was writing about my experience, about my journey. So it was kind of focused on me, just like life updates, just my opinion on things, that sort of thing. The shift happened a couple of years ago, right before I started Hello Adversity. I just got to a point where it's not so much that I was tired of writing about myself, but I just wanted to kind of start doing other things. Through sharing my story, I share certain lessons, but I really wanted to just write about the lessons themselves. I could still weave in my story, but like to make it more

actionable, more focused on the reader and making that switch. I'd kind of dabbled it in the past, but start doing that consistently kind of kicked up the level of excitement to another level of just like, okay, now I can kind of take the focus off of me. I don't really necessarily want to be the center of attention, but I recognize that sometimes my story is the vehicle to teach lessons to other people because I've been through all that stuff myself. You know, obviously it's intertwined with my story, but I've really enjoyed being able to just.

parse out different lessons that I've learned, think through if I was to teach this to somebody, whether it's dealing with failure, whether it's cultivating optimism, whether it's trying to find humor, witness sadness, all of these things, dealing with anger, that sort of thing. I could just blog about my journey and like that would come up, or I could write a post specifically about that topic and just share my story and then just call out the lessons and then how people can apply those lessons. And I really enjoyed that because again, one, it takes the focus off of me, but two,

It really forces me to learn these topics, really internalize how I would explain it to somebody else. So it's beneficial for them. It's also beneficial for me because now I get to think about it in more detailed way. And once I write about a topic, I have much more mastery over it. And then I can apply that in other ways, whether it's if I want to do coaching in the future, whether I want to do public speaking about that topic, if I ever want to do a course in the future, if I ever want to write about it again. Having gone through that initial exercise of writing about that topic and really digging into

you know, what are the steps involved, you what tips, what are the things to avoid, that kind of thing has been really helpful for me and really exciting to me because now I get to both share something meaningful, but also share something useful and actionable. that's really the part that excites me.

Josh (19:10)
Yeah, and it's easy to tell a story about something that happened and pull a thread at it and say, hey, I overcame adversity. I was courageous in this situation, something like that. when you're, like you mentioned, taking a topic and learning and mastering it and putting it out there for, I guess, a wider audience in a sense, it definitely is a next level of understanding. And that's what I appreciate because I mentioned earlier,

We kind of have a crossover in our platforms where I'm not just reaching out to type one diabetics. I've got people from all over the world, all over the spectrum of diseases and chronic illness and pain and all that stuff. And we can all learn from each other. It may not be the exact same symptoms, exact same timing, exact same treatments, but the mindset and the community is the same. It's having people that you can talk to, just vent to, ask for advice that understand and get it. So.

That's what I really like about your content and what you're putting out there is that it's not just applicable to a small silo of people. Anybody, you you don't have to have a chronic illness or disease or anything like that to get something out of your content, which I think is really cool because it is easy just to kind of pull the I'm chronically ill card and put all your content around that. So.

Chris (20:30)
Yeah, I knew pretty early on that I wanted to obviously reach other people that had some sort of, whether it's a chronic illness or just some sort of disease. My other goal was to make sure that I wrote about it in a way that I felt good about. Like we've all read stories, we've all seen how certain people with diseases are portrayed on the news or it becomes kind of like cringey inspiration. I was very adamant that I wanted to write in a way where one, nobody would see me as like the inspirational guy. That just makes me want to barf. And then two,

I didn't want anybody to pity me either because those are kind of the extremes. Yes, I have this disease. Yes, it's not easy to live with. Yes, it stinks many times and has been very difficult in the past. But I'm writing it in a way where the goal is to share what I've learned from it to show that although what I'm going through is physical, people can see it. People realize that there's something happening with me, that we all kind of have the same commonalities of emotions. We just have different circumstances that led to those emotions.

It could be a disease, but it could also be other forms of adversity. could be job loss. It could be grief. It could be lack of self-confidence. It could be, you know, financial issues. There's all sorts of issues these days, no shortage of them. And through my writing, I kind of had that hint early on that that might be the case, but having done this for two years now, just realizing that although I write for a general audience, there's definitely common themes that no matter what somebody's going through, you we all are dealing with it. I was, again, I still talk about my story, but I'd go to great lengths to straddle the line between

Yes, I'm inspirational, but I want people to be actually inspired to do something based off of me sharing that versus, it's like, it's so nice that he like got up in the morning and like faced the day and like, he's so brave. Cause sometimes you see, especially with disabilities, how they're sometimes portrayed or just like people think less of you because you have it. So if you do something that like a normal person would do, seeing it's just great like life achievement. And that's what I'm trying to avoid. I'm just like, yes, I'll share my story. Yes, I'll share the good and the bad. Yes, I want you to come away feeling like you just read something profound, but.

I don't want it to be because I inspired you. I want it to be because, by sharing his story, he was able to shed light on something that maybe I was going through and now I understand it in a better way. Every week it's its own challenge in terms of what topic I write about, but that's kind of the main goal that I try to have. How can I share all the stuff that I've been through? Because I have been through a lot, but how can I also do it in a way that I feel good about? in some ways I'm very protective of my story that if I'm going to share it, I want to be the one sharing it. I want to be the one kind of explaining.

what something meant to me or like how I view having a disability. In the past, I've run into trouble when somebody else is writing on my behalf and then they'll write something that seemed very cringy or just like kind of what we're just talking about. They kind of see me as like inspirational and I'm just like, that's not what I was going for. And so I think being able to be the one in charge of writing about my story gives me a lot of power in the sense that I can kind of portray things in the way that I want it to be portrayed. even if I miss the mark and I don't do it the way that I had hoped, at least I'm the one that's responsible for that.

It's not somebody else writing about me, it's me. Maybe I didn't convey something the way that I had hoped to convey it, but at least I'm the one that's responsible for that. And I definitely would own up to that. I haven't really run into that issue, but you know, just if I'm going to share my life, I'd like to be the one in charge of being able to pull out the lessons that I want to pull out from it and kind of share and shape it in the way that I feel good about that. feel comfortable doing it.

Josh (23:42)
Yeah, and I think you do a really good job of that because your content, while you mentioned, has your story mixed in there, it's not focused on your disability. I mean, it's not a clickbait, pour me, I got up and brushed my teeth type thing. It's, I'm a real person going through real trivia's and hardships that everybody else is going through. And adversity can look so different for everybody. I think you do a really good job on that because it is a fine line of.

being just the superhero that gets up and won't let anything bring him down versus the clickbait, look at me, pour me type stuff. So I definitely appreciate you being so mindful of that because there are those two extremes and it seems like it's really hard to find somebody that's in the middle of just, I'm just trying to use my story to spread good.

Chris (24:30)
Yeah, it's like being aware of all the different potential landmines and kind of the extremes of what I don't want to be. then just writing it away is just like process of elimination. It's just like, I can prevent being super inspirational, if I can prevent feeling like a victim all the time, if I can prevent coming off as jaded, then what does that leave me with? It leaves me with sharing my story authentically and then just being very practical and kind of what I'm sharing, what I'm teaching. And I think that kind of is what it is a lot of the times. It's just like, I know what I don't want to be.

Let me write something that isn't any of those things and then I can land on the tone and the goals that I set out for when I write it.

Josh (25:03)
Yeah. And again, I mean, I've been subscribed for probably three weeks, maybe four. Forget how long it's been that we've been connected. But, you know, I've gotten a couple of the newsletters and I think they're right up that alley where it's really good information. I can relate it to a lot of what I have going on and it's not all diabetes related. If my mind doesn't go to, yeah, I experienced that with diabetes. It's things that are going on in work, at the house, with family. I mean, it's relatable content. So I think you do a really good job of that.

Chris (25:33)
Thanks. Took years of practice, but I feel like I finally landed in a good place.

Josh (25:37)
Yeah. And as far as the community that you've built, what do you see it progressing to? Do you want to keep it as a blog? And you mentioned you're writing a book, but do you see any more community growth or any big projects down the line that you want to try to implement?

Chris (25:53)
The short answer is yes. I haven't yet figured out the right way I want to do it. I'm really bad at biting off more than I can chew. So a lot of this is being mindful of my energy level, the different things I'm working on. Substack has a chat feature which allows you to interact with your community, with readers. I know some people that have specific member communities. know, if somebody becomes a paid subscriber, they would get access to a member community where they could interact with other people. Down the line, that's probably what I'm going to try to do is I think

Especially in the rare disease and disability communities, it can be very isolating and having communities of other people that you can meet and you can interact with and befriend, I think is important. That's something that I definitely want to be able to foster. Right now I kind of do that through the comment section, but would like to kind of take a more active role in fostering a sense of community. I think probably after my book is done is when I will start to explore that.

and maybe just ease into it. I just want to get to a point where if I do it, I just want to be something that actually can be sustainable. I don't want to start it and then realize I'm weighing over my head and I can't sustain it. Then I got to get rid of it. So I just want to be mindful of how I sort of unveil it and how I build it. But it is something that definitely is on my mind because I've benefited from having community. I've benefited. I talk all the time about the importance of role models of finding other people that even if they don't have their exact situation, understand the emotions, understand some of the common fears of life.

and finding people that have navigated that and being able to use them as an example. Whether it's somebody you know or just somebody from history, anybody that you can learn from. I think having a community like that can really help to make that process easier, that matching process of finding a role model, finding a friend, even just somebody that understands. I benefited so much from meeting other people with my disease that are a few years ahead of me, but I quickly became a role model, but they also became a friend. Just being able to meet somebody else and you don't have to explain your life story, they just understand it.

Even if the disease isn't quite the same, of just like the journey of having a rare disease, because it can be very isolating. Not many other people know about the disease. You can't find other patients that have the disease. You're not always sure what the progression is going to be like because there's just so few patients. Having a disease is hard enough, but like having a very rare disease that adds a whole extra layer of stress. And if I can do anything to foster a community like that, that can either connect other rare disease patients or disconnect other people that are even just going through something where they feel isolated and they meet somebody else that can relate.

would be very powerful and I think would be a great privilege to be able to do.

Josh (28:15)
Yeah, I think through that a lot too is how do I create a platform, a community, a space for people to be able to come together and do all the things that you just said. You know, connect, ask for advice, just be able to not have their walls up and be able to connect freely. But what I found in some of the communities that I've joined is that there's so many, you say, negative NANCYs in there that are in a bad spot and just want to bring everybody else down with them. You know, they

Somebody will post, my A1C went down. And someone will come in and say, yeah, just give it a couple months. It'll go back up and it'll probably just keep going up. You can't let people enjoy their wins. You've got to bring them down with you. So that's one of the things that I struggle with is, I was going to try to build some sort of a community. Do I have the bandwidth to be able to control that? And everybody should have a right to their own thoughts and put what they want out there. And so it's kind of on the creator to make sure that the atmosphere is what they want it to be. And right now I don't think I have.

the bandwidth or know how to do that.

Chris (29:16)
That's a great point. That actually is something too that I'm not yet sure how to navigate. I'm sure there's probably best practices for how to do that. that kind of touches on another point of just there's a lot of people that are not here to judge. They're not here to say like, you know, they shouldn't be this way because I understand that everybody's situation is different. But there are people that kind of land in that sort of jaded mentality of just whether it's hopelessness, whether it's deep-seated anger. And again, I understand where that comes from. But yeah, same thing with the communities that I've been in. There's always people that try to...

tear others down or somebody succeeds at something. I don't know if it's jealousy, I don't know if it's envy. I'm not sure what people's motivations are because they're probably different. But at least through my writing, I don't have to say that I can solve all of that, but I try to think about that type of person as I'm writing. And if I run a community, maybe the same type of thing, I'm just like, is there anything that I can do that I can share that can make somebody a little bit less jaded? Because think a lot of times it's just a matter of frame of reference. I think a lot of the jaded aspect comes from

Really like a deep-seated sense of hopelessness of just like, is never going to get better. What's the point of trying to achieve your goals? What's the point of trying to better your life? What's the point of optimism? When all I know is this overarching pessimism that just seems to be getting worse and worse. So really like a lot of what I try to do is just try to think about that person. Then as I write, is there anything that I can do from talking about a specific topic that might be able to make somebody just a little bit less hopeless? Again, hope is not necessarily about.

like a cure for a disease, but it's just a matter of believing that the future will be better than the present. And there's so much that goes into that besides the disease. It's just a matter of what you believe that you can do. It's a matter of confidence in yourself. It's a matter of finding purpose. All of these things, I really go into that. And this doesn't happen all the time, but on occasion, I'll hear from somebody that was just like, I've been feeling very hopeless recently. I've been feeling really down. Whatever I wrote about that week helped me to see something in a new way that made me feel a little bit better about things. That's really the goal of what I try to do is

I wouldn't presume that I have all the answers. definitely don't have all the answers. Trust me. But I at least understand certain mindsets. And I always try to think about how can I write something in a way that would benefit a reader that might be feeling really down that week and just kind of writing for them. And that's something I'm honored to do. And it's something that I think is, again, terms of being able to improve my overall mindset is being able to do things like that that can help people just a little bit. Whether it's helping people a lot, whether it's helping people in a small way, just making somebody's week, day better.

a little bit is the best use of my time, the best use of my efforts and really kind of the highest purpose with having gone through this disease. Being able to use it in some way for good is really meaningful to me. It's a long way of saying I don't know how I would react in the community if that was to come up, but I would try to think in terms of upside down side. It was like, yeah, that's the downside of that could happen. But the upside of for every one negative person, if there's 10 or 15 people that would really benefit from connecting with one another to not let that one negative person drag everybody else down and to not build it because

Yeah, you are afraid of the downside. You might be missing out on all sorts of positive interactions and meeting new people and making those connections that could change people's lives. And that ultimately will tip the scales at the end of the day, which is why I think I'm going to ultimately do it. But yeah, as you said, that's always kind of a concern. It's just like, how do you navigate that? How do you deal with it? And I don't know the answer is yet, but I'm sure that this is something other communities have gone through and just trying to figure out kind of the best way to navigate that. Well, also give me somebody's space that, you know, if they're just having a bad day, you you don't want to just like ban them immediately.

Josh (32:28)
Yeah.

Exactly.

Chris (32:35)
That's something to kind of keep on your radar.

Josh (32:36)
Yeah, yeah. It's that kind of fine line of you're allowed to have a bad day. You're allowed to be in a bad spot for a little bit. You don't want to ban them. We don't want to kick them out. But at same time, you don't want them bringing down those 10 to 15 people that are getting a lot out of it. So we'll keep in touch and see if we figure that problem out. And then maybe we can start our own threads or something like that where we get rid of all the negative nancies. It's only positive. So wrapping up, what words of advice do you have for those that

And I'm not even to say like are getting diagnosed, have just been diagnosed, but people that are going through something, they have an adversity, a marriage, financial work, parents are getting older. What can they do to start to get on that right track of finding a new purpose, seeing the light at the end of the tunnel and that, you know, this isn't the end all be all.

Chris (33:30)
That's a great question. think that's honestly like the question. I think it really comes down to being able to separate in your mind what you can actually control versus what you can't control. Because a lot of times we focus and we dwell on and we worry about the things that we can't control. And no matter how much we try to influence those things, they will never be able to change it. For example, you know, the disease is something that's out of my control. I wish I could change it. I wish I could influence it, but I can't. But sometimes when people realize that they can't control something, they automatically

feel defeated, they feel hopeless. Again, I've been through all this myself. I understand the mentality, but in doing so you kind of overlook and you lose sight of the things that you actually can control, which is a lot of things. So like, even if you can't change the thing that you want changed, you can still do a lot of good in your life. You can still take certain actions. I can still improve your life tangibly. For example, again, I can't cure my disease, but I can do healthy things, go to good night's sleep, eat well, meditate. I can...

stay connected with friends, I can write, I can read, I can learn new things. And there's all sorts of things that I can do that could better my life, that could improve my life, that can build a really good life. It took many years again to arrive at this point. It wasn't something that overnight I just realized an epiphany. But my advice would be for somebody that feels overwhelmed, that isn't sure what comes next, that's really fearful for the future. I think just start by separating out what you actually can control and what you can't control. And then other things that you can control. The other key thing is just being as very clear as possible on what steps you can take.

Sometimes we don't take action on something because we're not sure of the steps involved. And I've always been a big proponent of just breaking down goals or tasks or things you need to do and things you don't really want to do, which you have to do. Break them down into very granular steps and then just take action on like the most basic first step. Because doing that will build momentum. It'll give you a very quick win and make you more motivated to do the next thing. And all of a sudden you have a lot of clarity and kind of what needs to happen. And over time, as you take action.

As you build up these wins, as you build momentum, you start to realize, okay, there's a lot more that I can do that I expected. And it keeps you from being idle and just thinking about the big picture and just, I'm not saying like have tunnel vision and just ignore everything, but taking action versus not taking action, just constantly ruminating, constantly stressing has really made a big improvement in my life. And it builds momentum. gives you something that you can control. It gives you something to focus on. It's something positive in your life. And really the best case scenario is that you can end up in a place where

You know, yeah, this thing happened to you. It may not be ideal. It may not be great. You may not be able to ultimately control it, but you've recognized and you've learned through the process that there still is so much that you can do. And again, it doesn't mean that you shouldn't grieve if you've been diagnosed or if somebody passed away that you shouldn't grieve for them or shouldn't feel negative emotions if somebody betrayed you or that you shouldn't be scared if you've encountered financial ruin, that kind of thing. Negative emotions are normal, but...

If the two options are just feeling hopeless and then feeling very negative and then becoming jaded because you just assume that there's nothing that you can do or resolving to figure out what are the things that I can actually do and then taking action and then coming up with the steps involved in taking that action. And then again, just making a little bit of progress each day. Cause sometimes people, if they bite off more than they can chew, they try to take on the weight of the world all at once. That's a recipe for disaster. That's a recipe for burnout. But if you can commit to little bits of progress each day, moving towards a goal that will make you a hundred percent better.

that will make you feel full of optimism overnight, but you can at least feel like, okay, there's a path forward through this. And then you kind of build confidence over time as you've amassed evidence that you're taking action, you're achieving goals, you're doing things you enjoy. And all of a sudden you kind of can build in a little bit of balance into your life where yes, there's all this bad stuff, but now there's some good stuff too because I'm focusing on what I can control. Yeah. And that is a, that you need help with just learning to ask for help. I think it's another one.

I could talk all day about that. if there's something that you need assistance with, don't be afraid to reach out to somebody. Everybody needs help, but also chances are they probably need help too. If you're not the only person in the world that might need somebody to have them shoulder your burdens for a while.

Josh (37:24)
Yeah, I love both of those. think there's a lot to be said about small wins. know, like you said, you don't have to create a company overnight. You don't have to build your investment portfolio to $100,000 in a week. I mean, there's small wins and there's actionable wins and that momentum over time, snowballs. And before you know it, you're at the bottom of the mountain and you're almost at the top. So I think that's really important is actionable small wins that are digestible, not.

conquering the world overnight. then yeah, help is so big. And one thing that I've learned too is a lot of the times when we're afraid to ask for help, we're often overthinking it. You we're making it a bigger deal than it really is in our head. And once you reach out, you know, you're thinking, what are they going to think? How are they going to act? And you start visualizing that in your head. It's a lot of the times not how it ends up happening. It's usually a lot less of a big deal than we make it out to be in.

It just is that step of opening your mouth and moving forward with the words.

Chris (38:24)
Especially because the consequences of not asking for help can lead to disaster and then you end up in a much worse situation. Had you asked for help, you might think that was hard, but imagine, you know, somebody having to clean up your mess afterwards. If you want to tell somebody that something was going on and then you handle it yourself and then you just completely melt down or just something really bad happens. They'll find out eventually and then they'll find out when you're in a much worse spot versus just being like, hey, you know, I'm struggling with this thing or I was wondering if I could ask for your advice or just I need another pair of eyes to kind of take a look at my situation.

That might be uncomfortable, but that versus like a worst case scenario, they'll find out when, you know, something much worse has happened. Yeah, like that doesn't even compare. A lot of it too is just, again, kind of that mindset shift of, yeah, this is hard. It's uncomfortable. And there's a degree of pride there. You kind of wish that you could do everything yourself. But when you look at it in the right way of just one, everybody needs help. Two, the consequences of not asking for help are much worse than just biting the bullet and just asking early on. And there's a ways you can do it where it's not.

There's really things like, oh, I'm asking for help. I'm going have to break down into tiers and just convey how powerless I am. If there's something that you need a little bit of assistance with, again, you could just frame it in a way where it's just like, you know, I need another pair of eyes. I've just got a lot going on right now. I'm just wondering if maybe you could assist me with this thing. I'll happy to help you at a later date. And then, most people aren't carrying a ledger around where they're just like, oh, you asked me for help three weeks ago. Time to pay up. Therefore, it's time to pay up. A lot of people are just willing to help you because they care about you. They love you.

I was trying to think of it in terms of if they came to you with the exact same problem, when do you want to help them? You know, just usually yes. So it's just kind of keeping that in mind too.

Josh (39:59)
Yeah, and what you touched on earlier, keeping things in your control. If you can control the situation and own asking for help now versus just letting it be and unfolding and just requiring help down the road, lot of different scenarios. So taking that step and controlling it definitely goes a long way. Chris, I seriously appreciate you coming on the show. I am going to link your sub stack in the notes.

Chris (40:19)
Absolutely.

Josh (40:27)
And for those that are on Substack already, it is hello adversity. Check it out. Subscribe, send Chris lots of money because you can send them stuff on Substack.

Chris (40:38)
Yeah, I mean, I'll always take money. Whenever you want to give me, I will not turn it down.

Josh (40:42)
Yeah, seriously, there is a lot of really good content on there. So give it a look. I mentioned the link will be below. Looking forward to staying in touch, Chris. And just, again, really appreciate you putting the skills that you have out there for others to be able to digest and use and hopefully benefit from.

Chris (41:00)
I appreciate that Josh. Thank you. All right. Thanks, man. Take care.