{"id":277955,"date":"2025-04-17T12:45:46","date_gmt":"2025-04-17T16:45:46","guid":{"rendered":"https:\/\/rarediseases.org\/?p=277955"},"modified":"2025-12-02T16:44:51","modified_gmt":"2025-12-02T21:44:51","slug":"navigating-adversity-through-writing-an-interview-with-chris-anselmo","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/navigating-adversity-through-writing-an-interview-with-chris-anselmo\/","title":{"rendered":"Navigating Adversity Through Writing, an Interview with Chris Anselmo"},"content":{"rendered":"

Chris Anselmo is a writer, coach, and advocate who is passionate about resilience and personal growth. Through his newsletter <\/span>\u201c<\/span>Hello, Adversity,<\/span><\/a>\u201d<\/span> he explores mindset shifts, overcoming challenges, and the realities of living with a rare disease. He also runs a coaching program designed to help people take action on long-held dreams, regardless of the obstacles they face.<\/span>\u00a0<\/span><\/p>\n

Chris\u2019s journey with resilience began in 2009, when he started experiencing symptoms of <\/span>limb-girdle muscular dystrophy<\/span><\/a> type 2B (LGMD2B) at the age of 21. An active young adult at the time, his diagnosis forced him to confront an uncertain future. Over the years, through trial and error, he developed strategies that helped him adapt, pursue his goals, and ultimately redefine what success looked like for him. One of those strategies was writing\u2014a tool that became both a personal outlet and a way to support others navigating their own challenges.<\/span>\u00a0<\/span><\/p>\n

He spoke at the 2020 NORD <\/span>Living Rare, Living Stronger\u00ae<\/sup> patient and family forum<\/span><\/a> in a workshop titled \u201cPsychology of Rare: PTSD, Depression, Evaluation, Diagnosis & Therapy,\u201d which you can watch on YouTube <\/span>here<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n

In this interview, Chris opens up about his journey into writing, the lessons he’s learned, and how he\u2019s using his experiences to support others.<\/span>\u00a0<\/span><\/p>\n

What was it like to have your life interrupted with the sudden onset of your rare disorder?<\/span><\/b><\/p>\n

When I was first diagnosed at 18, I expected my condition to progress much later in life. But when I became symptomatic at 21, I found out it was going to happen much sooner than I expected. It started as a kind of subtle muscle weakness while going for a run after work, and then, when I was moving to an apartment a few months later, I started having issues carrying heavy objects up the stairs. That led me to see a neurologist, who reconfirmed my diagnosis.\u00a0<\/span>\u00a0<\/span><\/p>\n

I went from graduating at 21 with full mobility to learning that I basically had about 10 years left to walk. You can imagine that was a big challenge. Over the next 10 years, I gradually got weaker; I started falling, I could no longer climb stairs, and I wasn\u2019t able to run anymore. All of that was obviously difficult, but what I struggled with the most was the mental and emotional impact of it all.<\/span>\u00a0<\/span><\/p>\n

How did you cope with your diagnosis and the changes it brought?<\/span><\/b>\u00a0<\/span><\/p>\n

It took a lot of trial and error for me to figure out how to cope, accept what had happened, and move forward with my life. Growing up, writing was always the subject that I was best at. After my diagnosis, I was asked to share my patient journey with a small foundation that’s working on my disease. That was really the first time I put what I was going through in a sort of a narrative context. And it was really a powerful moment for me, because, for one, it reconnected me with something that I enjoyed, which is writing, and for two, it helped me to see the impact of continuing to share my story \u2014 that maybe this was something that would be valuable for both myself, but also for people that might come across my story.<\/span>\u00a0<\/span><\/p>\n

That led me to blogging, but I decided I wanted to write about something other than just myself and create something that gave back. I became really interested in understanding how people cultivate resilience and how to become more resilient myself. I realized that sharing what I had learned \u2014 both from personal experience and research \u2014 could be valuable to others. Writing became a way for me to reflect on my journey.<\/span>\u00a0<\/span><\/p>\n

That\u2019s how my newsletter<\/span>,<\/span> \u201c<\/span>Hello, Adversity<\/span><\/a>,<\/span>\u201d came to be. “Hello Adversity” isn’t about being inspirational, at least that’s not my focus. My focus is on making difficult topics \u2014 like mental health, dealing with failures and setbacks, or finding hope \u2014 more approachable. To do that effectively, I weave my personal story into those subjects, but I also make it audience-focused by sharing takeaways, tips, and insights people can apply to their own lives. I’ve found that approach really resonates with a lot of people.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

I was originally going to call the newsletter \u201cGoodbye, Adversity.\u201d And then I realized that wasn’t realistic, that we’re always going to face adversity. So, the \u201cHello\u201d part is a recognition that it’s always going to be there. Everything I write about is how to be comfortable with it and how to live in the midst of adversity. It doesn’t mean you have to like it. It’s just like, \u201cOkay, it’s here. I don’t like it. But, I now have tools and strategies to deal with it.\u201d <\/span>\u00a0<\/span><\/p>\n

What has writing taught you about resilience?<\/span><\/b>\u00a0<\/span><\/p>\n

By breaking things down into steps, like the process for overcoming imposter syndrome, I\u2019ve been able to put into words things I used to do without thinking much about them. Doing this has allowed me to better understand these subjects and how different topics are related.\u00a0<\/span>\u00a0<\/span><\/p>\n

Some of the pieces that stand out most to me and have received the best reactions are the ones that lean more toward personal essays. Ironically, I started this to move away from personal essays, but I\u2019ve come to recognize their impact. Even in those essays, I always try to include something people can take away \u2014 whether it\u2019s a new perspective or actionable insights they can apply in their own lives.<\/span>\u00a0<\/span><\/p>\n

One of the key moments in my own journey was learning to ask for help. I wrote about this in the post, <\/span>Out of the Abyss<\/span><\/a>, where I share how I finally broke free from the isolation I had built around myself.<\/span>\u00a0<\/span><\/p>\n

What types of stories would you like to see more of within the rare disease community?<\/span><\/b>\u00a0<\/span><\/p>\n

I enjoy hearing stories where someone shares their personal journey, from diagnosis to the full arc of their experience. But I really enjoy the day-to-day stories too, like, \u201cthis is the issue I had today,\u201d because it gives you an insight into someone’s world.\u00a0 Sometimes, a little detail about somebody’s journey can shed light on the entire journey. And I think those stories are humanizing. The more stories that are shared, the better, especially because with rare diseases, everyone\u2019s experience is unique, yet many of the emotions, feelings, and challenges are common across the community.<\/span>\u00a0<\/span><\/p>\n

It’s also important for broader exposure \u2014 people who don\u2019t have a rare disease might come across someone\u2019s story and learn a lot from it. In the best-case scenarios, someone might read a story and realize that someone in their family has the same disease, or that their own symptoms closely resemble those shared in the story. I\u2019ve heard of situations where someone reads an article from someone with a rare disease and either recognizes their own symptoms or identifies them in someone they know, which then motivates them to seek medical attention and ultimately receive the correct diagnosis.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span>We would love to hear a little bit more about what else you are working on.<\/span><\/b>\u00a0<\/span><\/p>\n

One is a book. It doesn\u2019t have a title yet, but it\u2019s a collection of 100 lessons from my rare disease journey. It includes short essays on various things I\u2019ve learned, such as cultivating resilience, dealing with adversity, and taking action. I also cover topics like effective planning, handling failure, dealing with comparison, finding acceptance and confidence, and other overarching life lessons.<\/span>\u00a0<\/span><\/p>\n

I\u2019m also coaching adults with rare diseases. My hope is to help people who have put their goals or dreams on the back burner, whether because of their diagnosis or other health challenges, and who may now wonder if those goals are still possible. I guide them through the steps to achieve their goals, thinking back to what would have helped me years ago.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span>Lastly, what\u2019s one piece of advice you\u2019d give to someone facing their own rare disease journey?<\/span><\/b>\u00a0<\/span><\/p>\n

First, know that you\u2019re not alone. When you have a rare disease, it can often feel isolating, especially when there aren\u2019t many people with your exact condition. The emotional struggles and challenges you face are shared by people not just with the same disease, but with other rare diseases and chronic conditions as well. Second, don\u2019t be afraid to reach out \u2014 whether it\u2019s talking to someone, asking for help, or seeing a therapist. It’s not fun to admit you’re struggling with something; everybody wants to make it seem like they have their act together. But the thing is, everybody needs help.<\/span>\u00a0<\/span><\/p>\n

One key realization for me over the years has been that everyone is going through something. I\u2019ve had conversations with friends who\u2019ve shared struggles I didn\u2019t know about, or they\u2019ve read something I wrote and said, \u201cI\u2019m going through the same thing.\u201d It made me realize that the emotions we often bottle up are shared by many, though it\u2019s not always easy to talk about. The takeaway here is that the challenges you\u2019re facing are not unique. While the details might differ, the feelings are often the same, and recognizing that you\u2019re not alone is half the battle.<\/span>\u00a0<\/span><\/p>\n

If you\u2019re interested in reading more from Chris, subscribe to \u201c<\/span><\/b>Hello, Adversity\u201d<\/span><\/b><\/a> today.\u00a0<\/span><\/b>\u00a0<\/span><\/p>\n

Here are some of Chris\u2019s most popular posts mentioned during our conversation:\u00a0<\/span>\u00a0<\/span><\/p>\n