Interview #8: On Saying "Hello" to Life's Constraints, With Chris Anselmo

A chat with rare disease advocate Chris Anselmo about resilience and sharing his story with the world

If you want to learn how to cope with adversity, Chris Anselmo is the guy for you.

I first found Chris’s work when I saw his newsletter, Hello Adversity, recommended by one of my favorite Substack publications, The Profile. His content resonated immediately with me. When he was 18, Chris was diagnosed with Limb-girdle muscular dystrophy type 2B (LGMD2B), a rare disease that causes progressive muscle weakness, that currently has no cure. He was originally told that symptoms would manifest later in life, but shortly after graduating from college, at age 21, he started feeling a burning sensation in his calves during one of his nightly runs.

The burning turned out to be the onset of LGMD2B. Two years later, a neurologist told him he would need a wheelchair within the next 10 years. It was a difficult diagnosis, one that he struggled to accept for many years.

Over time, Chris learned – through trial and error – strategies to cultivate resilience in the face of adversity. This is what motivated him to begin sharing his story – to help others going through personal struggles and share the wisdom he learned along the way.

Chris has been on an extraordinary journey, writing about his story, speaking at conferences, and returning to school for his MBA. He is currently the author of Hello, Adversity, a newsletter full of practical, motivating tips to boost self confidence and persevere through tough times. He is also working on his debut book.

I am thrilled to have you meet Chris.

You’ve shared your story on podcasts, interviews, and of course, in your own newsletter. What has it been like sharing your ups and downs in public?

At first, I didn't tell people about what was going on. Then in 2012, four years into my journey, I was asked to share my patient story for a small foundation that's working on my disease. That was really the first time that I put into words what had happened to me.

That experience made me realize that I enjoyed telling my story, and it gave me the courage and the willingness to be more open about it. I didn't necessarily seek out opportunities to share my story, but if somebody asked me, I was more than willing to do it.

A year later, there was a research conference in Washington, D.C. They asked me to come and tell my story to researchers. And it kind of snowballed from there. Shortly thereafter, I began blogging about my journey.

When it's your story, you become more comfortable telling it with repetition, especially since you're living it. And when you become comfortable telling it, you begin to tell it in a way that is very empowering because you're the protagonist. You're the one that's in control of how it's portrayed.

The more I shared my story, the more I really enjoyed using it in a way to help other people. I wasn’t interested in telling it to bring attention to myself; I wanted it to be useful in some way. Otherwise, it's just like, hey, look at me, I'm telling my story, I'm so great.

It's not that my story is so amazing; I’m just telling it how it is. I had full mobility for the first 21 years of my life, and now I don't.

But learning how to adapt to my new life, learning how to understand what's really important, my purpose, and how I can do the most good with what's happened to me, has made for an interesting journey. It’s one that I don't take lightly. And honestly, it's been a huge confidence boost for me because I'm not the most confident person to begin with.

I guess one of the silver linings of what's happened to me is going from somebody that absolutely hated any form of public speaking to now, if somebody asked me to share my story, I can do it without hesitation.

I feel the same way. I think writing is a very powerful way to share our stories, in a way we’re comfortable with. It sounds like there's been a lot of benefits to sharing your story in public. What would you say has been the hardest part?

The hardest part is that it's not something that I can look at with distance, in the sense that it happened in the past and I know how it turns out. It's something that I'm living every day. And so my story continues to evolve. It always will.

I talk about finding acceptance, cultivating resilience, overcoming adversity, etc., but there are days where if something happens and it's really hard, it feels like I lost all the progress I made. And I kind of sometimes feel like a hypocrite because I'm just like, oh, I'm talking about all these things, yet here I am once again struggling with the very thing that I've struggled with for the last 15 years. And that put me in rough patches where it's not as easy to be open about life.

I guess in some instances, that makes me more relatable in the sense that I'm not bestowing knowledge on somebody as if I've done it and I've conquered it and I'm past it. As if I'm enlightened or something like that. But instead, it's hey, I'm living it. I'm still struggling with it, but this is what I have learned about it.

That’s very comforting. I feel the same way, frankly, writing about setbacks, sharing people’s wisdom on it, and then still feeling daunted by my own setbacks.

Yeah. There are people on social media who bestow knowledge and share authoritative opinions, and they make it sound like they never slip up. Like, I get up at 5:30 every day, and I lift weights for an hour, and I write for 3 hours with no distractions, and I put my phone in the other room. That’s how I do it every single day, and it’s allowed me to become super successful.

I struggle to relate to these people. I read that and go, okay, well, it's great that you keep those habits, but do you ever slip up? Are you human? Sometimes I wish that I could share things from this perspective, as if I’ve conquered my challenges for good. But that’s not how it is. I'm still a bit of a mess, more often than not.

Ha. We are all messes.

There's a tension between learning something and having to keep learning it. It's one thing to learn what works, but it's another thing entirely to follow it and to adhere to it every day.

What do people not ask you about that you wish you could talk about more?

There are definitely times when I wish that I could talk about things other than my story and adversity. There are other parts of my life. I love sports. I love history. I love travel and culture. Even though I don't do a lot of traveling, I definitely have other interests besides just writing about myself or being immersed in the rare disease space.

That said, I'm fine with people not asking questions. I mean, I'm a pretty boring guy to begin with. So other than what I'm writing about and talking about, there's not much else going on with me.

(I laugh). I would highly doubt that. As you’ve shared your story, what has been the hardest part of the journey you've been on?

I think the hardest part was adjusting to the reality that my life is not going to turn out the way that I had expected. Even when I knew I had the disease before I had symptoms, I had expectations that it would manifest much later in life.

Life's been a constant tug of war between two extremes – believing what's possible and accepting what isn't possible. Sometimes I catastrophize, thinking nothing's possible, and then I overcorrect and go, "Anything's possible, you just have to do it a different way." But that’s not always true either.

This disease can be very tiring. I don't have the energy to do a lot of the things that I used to be able to do easily, even talking for long periods of time. Everything I do now requires logistical planning and risk mitigation. The spontaneity that I used to have, that I used to really enjoy, is gone. So I’ve needed to figure out, How do I deal with that? And that's been the story of the last 15 years, learning how to build a new life from scratch. Thankfully, I have.

But the hardest part was learning to accept that the life I thought was going to lead is not the one I ended up leading. And then figuring out, given that, what's the best possible life I could lead with this disease?

It's like learning to live with constraints. Like, okay, this is a given. This is what's going to happen. I can't do anything about it, and it’s not going to be easy. Given that, how can I live the best, most meaningful life possible? I think I'm still trying to find the answer to that question.

But there are some positives that come with this experience in terms of purpose, in terms of appreciating what's important, in terms of valuing relationships, not messing around, achieving my dreams, and not putting things off forever because life's not guaranteed. There's a lot of stuff now that I just don't want to put up with anymore, that I might have put up with otherwise.

One of the interviews I did last year was with one of my former coworkers who got cancer in his twenties. I asked him what his takeaways were, and he said he doesn’t do things or be around people that drain him. And I think everyone, as they get older, eventually comes to that realization, but I imagine you also got to that conclusion earlier in life.

Yeah, because it really helps me filter out the stuff that's just not that important, that's not necessary. Because I feel that constraint. It’s like, why make my life more difficult by doing the stuff that I don't want to be doing? With this disease, I'm only going to have a finite level of strength and energy. Why waste that energy on stuff that doesn't bring me joy?

That doesn't mean you have to become a hedonist. It just means, why grind yourself into the ground doing a job you're not thrilled about? Why surround yourself with people that you despise just for the sake of career advancement? Is status really all that important? Is money that important? I mean, it's good to have some level of those things, but the things that you thought were important, once you hold them up to the light, especially when you have this other stuff going on in your life, it's just like, okay, I don't really need that. I'd rather just spend time with family and friends and do the things that actually bring me joy.

It also helps you figure out what you actually do enjoy, because you're constantly challenging yourself to filter out what’s not important. And I realized I really enjoyed writing.

Speaking of writing, you've been incredibly supportive to me and to other new writers on Substack. What motivates you to be so helpful and supportive?

I like doing what I can to help somebody gain confidence in their writing abilities and to make it feel like they've made the right decision to start writing. I don't remember what the exact statistic was, but the overwhelming majority of people give up writing after a couple months. I feel terrible thinking about that.

I'm just one person, but if I can be supportive in some way, and help people validate their decision to write — whether it's liking a post they wrote or subscribing to their newsletter, perhaps I can help them to keep going.

As a writer, you have to make it through that initial phase where nobody knows who you are. The void, if you will. And thankfully, on Substack now it's a lot easier for people to know who you are and discover your writing. But the key thing is to connect with other writers and support one another. And then from there, that kind of gives you the initial motivation, the initial traction to make it out of that perilous beginning where you feel like you might be ready to quit.

Even just letting people know, hey, your growth trajectory is normal. You just have to stick it through that initial phase of writing and getting two likes, three likes. My first posts got very little engagement. Over time, you slowly build. And then all of a sudden people learn who you are and they're invested in you and next thing you know, you’ve built a community.

We’ve talked a lot about the past. What are you looking forward to?

I'm working on a book – a compilation of lessons learned on my rare disease journey. I've always wanted to write a book, and it's something that I know will be a big confidence boost for me once I finish. I hope it's the kind of book that people will recommend to other people.

Having a book to hold in my hands – or to give away or to sign for others – is very motivating to me. I'm not expecting it to be a New York Times bestseller, but if it can sell a few copies, that would be nice.

I think this will be an interesting question for you because I know a lot of your content overall has so many good tips. What's a good starting point for someone going through a tough time?

Read my book someday - that'll be the answer. (laughs). That's the intent of the book at least.

But the non-self-promotional answer is to give yourself a break. Maybe you thought you had everything put together only for life to show you that you didn’t, or you made a mistake and are beating yourself up, or you tried everything and it’s still not enough. All these things can make you feel like a failure or that there's some sort of character defect with you. But that’s not the case.

I think before you do anything, just learn how to give yourself a break and accept that you're never going to do everything perfectly. If something happened to you, it may be your fault, but also it may not be your fault. It's just life — things are going to happen to you that are outside of your control. You can do everything right and something bad could still happen.

Thinking back to the beginning of my journey - I put so much pressure on myself because I kept screwing up with how I handled things.

But as I learned, as soon as you start encountering negative emotions, you're going to feel like you failed in some way. You’ll start to think that you're not capable, that you're not set out to handle this. But you are capable, if you’re willing to believe it.

So learn to give yourself grace. It helps relieve that pressure that you've got to do everything perfectly or that you've got to do things one particular way.

You’re going to screw up. We’re humans after all. That’s what we do.

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Thank you so much to Chris to sharing his story with us — what did you take away from his story? Comment below!