We All Have a Story to Tell
Storytelling is a powerful way to process adversity and make a difference in someone else's life
In December 2012, I received an email invitation that would change the trajectory of my life.
The Jain Foundation, whose mission is to find a cure for my disease, limb-girdle muscular dystrophy type 2B (LGMD2B), wanted me to speak at their annual research conference in Washington, D.C. The organizers hoped that by sharing my journey living with “2B” (as it is now known), I could help put a face to the disease that researchers were investigating in the lab.
After reading the email, I felt a wave of excitement, followed by piercing fear.
Even though the conference would afford me the luxury of listening to scientific presentations about the genetic underpinnings of my disease and potential therapeutic options, even though I would have the chance to speak with researchers and motivate them to find a treatment, even though I would only have to speak for ten minutes, I hesitated. I almost responded and said no.
The problem? I was terrified of public speaking.
There’s no way I can do this, I thought. Me? Speaking to an audience? Words? The thought filled me with dread. Not only did I feel that I had nothing interesting to say, I was uncomfortable opening up to an audience about the emotional rollercoaster I was currently on. I also had an unsettling track record of wilting under bright lights.
All throughout high school and college, whenever I would get up in front of the room to speak, I would see faces staring back at me in the audience and break out in a cold sweat. Then, already rattled, my mind would go blank and I would forget what I had to say, followed by my voice cracking, more panic, and a desire to bolt off stage and crawl in the nearest hole. (There’s a reason studies show that people fear public speaking more than death.)
But deep down I knew this was an opportunity too good to pass up. Besides, it would be a sympathetic audience. If I forgot what I had to say, I would have notes. If my voice cracked, no one would notice. The researchers and staff would appreciate my story, no matter how awful the delivery.
That night, I took a leap of faith and responded “yes”. I now had four months to figure out how to put my patient journey into words. I had four months to discover my story.
“Chris’s Story”
On April 6, on the final day of the Jain Foundation Dysferlin Conference, I slowly got up from my chair and walked to the front of the room. I put my notes down on the lectern and took one final look at the giant projector screen above my left shoulder. On the screen was a picture of me in a cap and gown at my college graduation, with the words “Chris’s Story” underneath. I took a look at the fifty faces staring back at me in the audience and felt a familiar panic slowly start to take hold.
To steady myself, I took one more look at the words “Chris’s Story” on the screen. Chris, just tell your story. You got this. I scanned the first line of my notes - a thank you to the Jain Foundation, attendees, and my dad - and folded over the page.
I took a deep breath and began to speak. I started with thank yous, then began sharing my journey, from my diagnosis in high school to first symptoms after college to participation in a natural history study. To my astonishment, the audience listened to a coherent, compelling story. My story. I made them laugh. I made one woman cry. I had command of a room, for the first time in my life.
By learning how to tell my story, I was finally able to accept my disease after many years of denial and shame.
I kept waiting for the other shoe to drop. I kept waiting for the moment when I would draw a blank, forget what I was going to say, and panic. It never happened.
Going in, I knew I didn’t want to cry or tell a sob story. I didn’t want to be “inspirational” in a condescending or exploitative sense. By controlling the narrative arc, sharing the low points and the high points on my own terms, I was able to feel power in my words that I had never felt before.
After I finished, researchers and Jain Foundation staff came up to me to shake my hand and congratulate me on a wonderful talk. Many of the researchers told me they had never met a patient with my disease before and appreciated the human connection to their day-to-day work.
On the drive back to Connecticut, I sat in silence as I replayed the talk over and over in my mind. I came to a surprising conclusion: I loved public speaking. What used to terrify me was now fun.
This revelation changed the course of my life. I began to seek out additional speaking opportunities, which gave me more confidence to tell my story to larger and larger audiences.
Speaking my story also motivated me to write about my story. Soon after, I began blogging with the Muscular Dystrophy Association and writing freelance articles about my journey.
By learning how to tell my story, I was finally able to accept my disease after many years of denial and shame.
We all have a story to tell
I am not writing this article to toot my own horn. Instead, what I hope to show is that if someone like me - who used to hate speaking and felt like I had nothing interesting to say - can tell my story, so can you.
Storytelling is a superpower available to all of us. Telling your story has the capacity to change not only your own life, but the lives of those close to you. It can even impact complete strangers in ways you may never know.
There are many ways to tell a story. Your first thought might be of someone speaking on a stage, but storytelling can also take the form of writing, artwork, spoken word, music, or something else. There are almost as many forms of expression as there are stories to tell. Choose what makes you most comfortable. For example, I like words but I have zero artistic skill. And if you heard me sing, you’d probably deny ever knowing me.
The fact that you live a “normal” life is nothing to discount. This is actually what will make you relatable to others.
I have come across many people, when I talk about telling my story, who recoil. Opening up is scary, I get it. Storytelling requires vulnerability and sharing details of your life, sometimes painful or embarrassing details. We don’t want to get hurt or feel rejected. After all, people these days are quick to judge and are not afraid to put someone down. This is an understandable hesitation.
What always gets me, however, is when people say “But I haven’t lived an interesting life!” or “I wouldn’t even know what to talk about. No one wants to hear what I have to say.” Don’t sell yourself short! If you get nothing else out of this article, know that you have a story to tell. No matter what medium you choose to express it.
Just because you aren’t a world traveler, professional athlete or secret agent doesn’t mean you haven’t lived a life worth sharing. The fact that you live a “normal” life is nothing to discount. This is actually what will make you relatable to others. Not to mention, we all are unique in our own way, possessing a mix of upbringing, background and life experience that will never be replicated by another.
I remember having these same doubts before the Jain Foundation conference. Why would they want to hear me speak? I have a disease, fine, but am otherwise an average person. What could I possibly talk about that would make for an interesting talk? It was only after I finished telling my story that I realized how foolish I was to think this. I did have something important to say.
But believing you have something to say is only half the battle. Telling your story requires a great deal of effort, and you will need motivation to persevere when you get stuck.
Is this process worth it? Absolutely, for two reasons: the impact it will have on you, and the impact it will have on others.
Storytelling enables you to take control
When you tell your story, you are taking control of your life’s narrative. The act of crafting your story requires reviewing the events of your past and analyzing what you’ve experienced. As you do this, you will surface themes and make sense of the events and details of your life. Whether you’ve had a difficult or a care-free existence, being able to tell your story is empowering. This process helps you discover who you are and the end result is a work of enduring value that you can be proud of.
You are the author. You are the main character. You control how your story is told.
Storytelling helps you process adversity
Taking ownership of your story is particularly meaningful when it comes to dealing with adversity.
Everyone is dealing with something. We all experience adversity; it’s what makes us human. Adversity comes in many different forms. Some adversity is manageable; some adversity is debilitating.
When you decide to tell your story, you will have to confront this adversity. There’s no way around it. It is not fun, especially at first, but it is an important part of the process of taking control of your narrative and accepting what has happened in your life.
If you’ve encountered loss or trauma, if you have been socially ostracized or made to feel shame for something in your life you can’t control, this can be excruciating to relive and resurface. Keep in mind that you don’t have to bare every last painful detail. You can tell your story the way you choose, on your own terms, using your preferred medium. Always remember that you are the one in charge. You can still connect deeply with audiences without having to include every negative thought or traumatic experience. You can if you want to, but it is not required.
In the beginning, if you need to ease into the process, that is ok. You don’t have to immediately tell your story on stage or publish a blog post. You can begin by telling the story to yourself. When you’re ready, if you want to get feedback, think of someone you trust who will accept your story without judgment, someone who can offer feedback in a loving way. This could be a family member or friend.
The more comfortable you get at telling your story, especially the difficult moments, the more confidence you will feel. It is a process that may even lead to a sense of healing and closure.
Finding your audience
With your story in hand, the next question is what you want to do with it. Are you seeking to persuade? Are you looking to inspire others dealing with a similar challenge? Are you establishing yourself as a credible thought leader on a given subject?
Your story won’t resonate with every single person. That is okay; no one’s story does. But by sharing your life, with all its ups and downs, it will resonate with someone.
Take some time to think about your audience. This is a simple but crucially important (and often overlooked) step. You can do this before you craft your story or after. If you plan to share your story with others, you might want to think about this beforehand, but if you are just beginning the process of making sense of what has happened in your life, this step can wait.
Either way, you want to make sure that the audience you are hoping to reach will resonate with what you have to say, even if that audience is just you.
You can change someone’s life
Taking time to contemplate your audience is so important because your story, in addition to helping yourself, can be of immense, life-changing value to others.
Your story won’t resonate with every single person. That is okay; no one’s story does. But by sharing your life, with all its ups and downs, it will resonate with someone. All it takes is one person to be profoundly affected by your story to make it all worth it.
Sometimes that connection happens instantaneously after you speak on stage or publish your writing or share your artwork in an art show. It is always gratifying to hear from people who were moved by your story and appreciate what you have to say.
Other times, however, the connection happens much later. You might not even know it happened at all.
Loss. Fear. Anger. Frustration. Stress. These are challenges universal to the human condition. We will always need storytellers to help process these feelings and help us realize we are not alone in our human struggle.
For example, if you write about your experience living with a disease and get no immediate response from readers, you might think your story had no impact. But if someone a year from now Googles your disease and finds your website, they might feel like they have finally found someone who understands what they are going through.
I know exactly what this feels like; it happened to me.
As another example, let’s say you are giving a talk about a traumatic experience in your life and how it motivated you to live a life of service. Perhaps someone in the audience went through a similar trauma and has been struggling to accept what happened. By hearing you speak, you gave them hope that one day they could come to accept what happened to them. Yet, they might be too shy to come up to you afterwards, and went home without talking to you. Even if you don’t know that this connection happened, that doesn’t make your story any less powerful or valid. The seed you planted today might not bear fruit for several months or years.
Once your story is out there in the world, it lives on for posterity.
The world needs more stories
Our stories can serve as a roadmap for others as they navigate their own challenges. The circumstances might be different, but the emotions are often the same. Loss. Fear. Anger. Frustration. Stress. These are challenges universal to the human condition. We will always need storytellers to help process these feelings and help us realize we are not alone in our human struggle.
Storytelling is a uniquely human capacity. We are social creatures who crave belonging, acceptance and understanding in order to feel connected to those around us. This is why we are so drawn to stories.
The world needs more people telling their story, sharing their vulnerabilities, and authentically conveying their life experience. We live in a world filled with artificial facades, hot takes and snap judgments. Part of the reason we are struggling as a society is because, instead of looking to others for support, we are instead repelled by fear.
But it is not too late to repair these bonds of connection. The world is changed one story at a time. Someone is waiting for you to tell yours.
Storytelling Resources:
I have found two books to be helpful in describing how to tell an impactful story. In the spirit of full disclosure I happen to know both authors, but I would likely have recommended these books anyways because they are quite useful.
Storyworthy: Engage, Teach, Persuade, and Change Your Life through the Power of Storytelling, by Matthew Dicks
Matthew Dicks is an elementary school teacher by day who has also carved out a fantastic career as a storyteller. He has won numerous Moth Grand Slams, is the author of eight books, and consults with organizations on the art of storytelling.
Dicks’ 2018 book, Storyworthy, distills his storytelling knowledge into one easy-to-read resource. He also does a great job of explaining how not to tell a story, which is just as useful!
The Healing Power of Storytelling, by Dr. Annie Brewster and Rachel Zimmerman
This book, as its title indicates, explores the power of storytelling to help patients heal on an emotional level. This healing involves coming to terms with one’s illness, (or that of a loved one) and finding purpose and meaning in one’s struggle.
Dr. Brewster is an internist at Massachusetts General Hospital who lives with multiple sclerosis. She is also the founder of Health Story Collaborative, which collects, shares, and honors stories of illness and healing via storytelling events, audio stories and other community-based initiatives.
I found this book helpful in understanding the impact stories can have to heal both the storyteller and those encountering the story. Although the book is written in the healthcare context, the learnings can be applied to any situation.
I had the privilege of participating in a Portraits of Resilience virtual event run by Health Story Collaborative in 2021. My talk begins at the 11-minute mark.
Such a valuable post, Chris - thank you. I've saved it for future reference. Thank you too for the great resources on storytelling.
I've always let my (irritating yet very treatable) conditions hold me back. 'I can't do that, because...'. I recognise this, and I know it, and I hate it. Having just watched your phenomenal presentation to the Jain Foundation, I feel I am in a much better position to create a framework to tackle my dreams, because you've really helped me to see that the only thing that's ever been stopping me is me!
Thank you.