The art of storytelling as a patient advocate

The art of storytelling. How do you narrate your patient journey? How do you build a relationship with others online for the long haul? Are you mindful of how your words benefit your community—and the value they possess?

I recently had the opportunity to attend Health Union’s HU Connexion ’18. IMG_9053It was an awesome event that brought together writers and patient advocates from a variety of chronic illness communities. I was there as one of the inflammatory bowel disease representatives.

There’s something special about getting to meet your online support network in person. One of the speakers at the conference, Laura Hope-Gill, discussed the power of narrative healthcare. Her words and her message were invigorating and empowering. She reminded us that there is no instruction manual or cookie cutter approach to patient advocacy. She discussed how each of our personal stories help to bring our advocacy efforts to life.

Laura said, “We are characters in a wonderful, heartbreaking story. Once you get the diagnosis—Ursula, our inner sea witch, waits to steal our inner voices. IMG_9070Instead of staying silent, remember that humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are.”

As a patient advocate and a voice for the IBD community, I’ve witnessed firsthand how my efforts and those of my counterparts require bravery. It’s intimidating and scary at times to put something out on the internet and await feedback. Some positive, some negative. It can be disheartening when your words seem to be falling on deaf ears. At the same time, when someone reaches out and lets you know how you’ve helped them or brought them comfort, it’s worth it. It’s that moment—when you feel heard, that you know you matter.

There is room for everyone at the advocacy table. It’s not a competition, it’s not a popularity contest on social media. Sure, “likes”, “shares” and followers may make us feel good—but, they are not a measure of the difference we are making. It’s not a competition of misery.

One of the most helpful recommendations I took away from Laura’s speech was the importance of not abandoning the storyteller. IMG_8619This was really eye-opening to me. You may wonder what I’m referring to. As a patient advocate and within any conversation you have—how quickly are you to relate to someone’s story and respond with your own similar experience? I think we’re all guilty of this. We aren’t malicious in our actions and maybe we’re trying to self-disclose to show we empathize. But, instead of responding with our own personal story—it’s imperative we listen, rather than tell. Let the storyteller guide the conversation.

By bringing a story of trauma to the surface, we are healing. Writing builds self-worth, beyond being sick. Diagnosis of any form, was the end of our normal. We grieved it. And guess what, we’re still here. Understand there is no limitation to our stories. Rather than being broken, you have the ability to be a storyteller and create a self beyond being sick. A special thank you to Laura Hope-Gill for reminding me of this and for opening up my eyes to the importance of being a storyteller in the advocacy space.

4 thoughts on “The art of storytelling as a patient advocate

  1. Anonymous says:

    This quote – “humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are” – is absolutely perfect. If I had the choice to go back and change time to never have been diagnosed with Crohn’s… would I do it? It’s made me the person I am today, a person that I wouldn’t want to change. A person that’s learned valuable lessons, such as which friendships are genuine or how to prioritize what truly matters, light years ahead of my peers. Sometimes I hate Crohn’s but sometimes I feel lucky to have it, and almost pity my friends who haven’t learned the strength, patience, and resilience that Crohn’s has taught me.


  2. dSavannah says:

    I’ve been feeling overwhelmed and sad, and not blogging because I feel like I’m screaming into darkness, but your words remind me my voice does matter.

    And how I need to work on “not abandoning the storyteller.”, something that happens to me when I try to express my jumbled depressed thoughts.

    Thank you for the reminders.


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