Last time, I had the privilege of speaking with Chris Anselmo, rare disease advocate and the writer behind Hello, Adversity. (If you didn't have a chance to read the interview last time, you can read it here). Diagnosed with LGMD2B at the age of eighteen — a rare progressive muscle disease, with no known cure — he began to lose his mobility in his late twenties. Since then, he has shared his story and lessons with thousands of people.
Everything that Chris shares in his newsletter — about dealing with adversity with resilience, courage, and grace — is golden advice, so I was thrilled that he shared even more in our conversation. Here are 5 takeaways from speaking with this inspiring — and also, very real and human — fellow writer.
Also, for those of you who took the survey last time — thank you! And for those of you who haven’t yet, I’d absolutely love to get your feedback on what type of content you like most in Celebrating Setbacks — it should take less than 30 seconds and helps me figure out what to write every week. Thank you!
#1: Yes, focus on what is in your control — but also remember that sometimes bad things happen outside your control.
Americans are highly individualistic people. Compared to many other cultures, we place a high emphasis on the role we ourselves play in our own fates. It's the epitome of the "American Dream," the idea that success is a direct result of our own hard work and efforts. I mostly appreciate this, but it can have its downsides.
One of my favorite philosophers, the British Alain de Botton, points out: “There are more suicides in developed, individualistic countries than in any other part of the world. And some of the reason for that is that people take what happens to them extremely personally — they own their success, but they also own their failure."
During our conversation, Chris shared that during the early days of his disease, he kept feeling like he was "failing" as he struggled to cope with his new reality.
But over the years, he has learned 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."
Remembering this makes me feel a sense of peace about any past "setbacks" I've experienced. Sometimes we are simply the victim of bad luck in life — and that is okay.
#2: Everyone has unuseful thinking patterns sometimes.
I relate to Chris because we both write newsletters about dealing with setbacks — and we both struggle sometimes with feeling like we shouldn't get stuck, given our content.
It was refreshing to hear someone voice the same concern I often have. With all the wisdom I’ve gained from my guests, I try to hold myself to the highest standard possible. Sometimes I get stuck feeling guilty during my own rough patches — and I thought this was a uniquely me problem! Once again, as I wrote last year in a completely different context (about changing careers), there are other people dealing with your problems — no matter how niche they seem!
#3: Humility resonates.
Chris's newsletter has built a community that has struck a chord with people, both those part of the rare disease community and those not. Beyond the quality of his writing, I realized there was another special ingredient — humility.
You can see that Chris is a humble and generous guy — a refreshing quality in a world of self-promotion online. Every one of his posts is infused with the sense that he doesn't believe he is better than anyone else — which makes people feel comfortable commenting and interacting with him.
In fact, it’s one of the major reasons I’ve even continued this newsletter in the first place, because of the encouragement I received from him at the beginning.
Humility begets connection — a virtuous cycle!
#4: Living with constraints forces us to decide what matters.
Rarely do we set out to limit our options in life, but as Chris reminded me in a powerful way — it can actually be helpful:
"There are a lot of intangible things that come with this kind of thing happening to you in terms of achieving your dreams, and not just putting things off forever because life's not guaranteed...
You feel that constraint. So why make your life more difficult by doing the stuff that you don't want to be doing during the time that you have? With this disease, I'm only going to have a finite level of strength. Why waste that energy on stuff that doesn't bring you 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? …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 levels of those things, but the things that you thought were important, once you hold them up to the light... I don't necessarily really need that. I'd rather just spend time with family and friends or just do the things that actually bring me joy."
I have chills reading the above. It sounds like obvious knowledge — to not do things we hate for money or status — but most of us spend our lives absorbed in these pursuits. In fact, I learned recently that the #1 regret people cite on their deathbeds is not having the courage to live the life they want.
That's why I appreciate people like Chris, who see the truth plainly. It's rare to have the insight of what matters, and actually act upon it — so I try to surround myself with this attitude as much as possible.
Thank you for reading! What lessons did you take away from Chris's conversation? Comment below, and stay tuned for our next interview!
I love these reflections, Anna! Thank you so much for interviewing me.