What Happens When Patient Influencers Share Their Story?
The Impact of Patient-to-Patient Interactions Online
Published Oct. 23, 2024 | 5 Minute Read
By Liz Green, LCSW
Director, Community Development
Health Union
This month, an average of 5,500 people will share their health story in one of Health Union’s 45+ online communities in discussion forums and comment sections. And as you read this, one of our 483 Health Leaders—lived experience experts—just might be working on their next article about living with a chronic condition. What do these actions have in common? They are moments centered around sharing stories.
Our Health Leaders are our greatest storytellers. They are the writers and moderators for Health Union who truly bring our communities to life. (Because we know those who know a health condition best are those who are living with it.) Our 480+ contracted patient and caregiver contributors are also part of our greater network of 100,000+ Social Health Network members—health advocates, influencers, and content creators who tell powerful stories every day.
“It turns out I wasn’t alone after all. I just had to be brave enough to talk about my experience…” –Kristine, rare disease Health Leader
Why do we feel better when we tell our story?
Stories don’t just help us understand what others go through—telling them helps us understand ourselves. When we piece together the events of our past, we can better chart the path forward.
As a community manager for Health Union, I get to see this in action all the time. And in fact, storytelling has been at the heart of my entire career. I previously was a theater artist, where I learned how to shine light on the moments in a story that an audience can relate to—illuminating what makes us human. Now, as a therapist, I provide the structured support necessary when sharing our most traumatic stories.
In my role supporting our Health Leaders at Health Union, I’m met each day by personal stories about health—one of the few things that has the power to transform our lives in an instant.
Making sense of a senseless world
Our minds are built to make sense of the world around us, but sometimes health defies all logic. In the face of unfairness and unpredictability, our brains experience cognitive dissonance—the anxiety and stress we feel when trying to make sense of conflicting thoughts, like:
- “I lead a healthy life, but I’m so sick.
- “This medicine is supposed to help me, but it’s making me feel worse.”
- “My doctor is here to help me, but I don’t trust them.”
Telling our story (even if only to our journal) helps us resolve this conflict by holding two truths at once. We construct a narrative that gives us some understanding and control. The best part is, you can do this on your own. Just sit down and start writing. Often, the simple act of getting it out can bring emotional release, or catharsis.
But sharing it with others takes it to a whole new level.
The 3 levels of transformation through storytelling
In supportive online communities like those at Health Union, telling our health stories has an impact on 3 powerful levels (which we can frame with a metaphor about eating a meal):
1. Feeding yourself (restructuring the narrative):
Facing your own past is the first step. Crafting, re-reading, processing, and editing our own stories allows us to make sense of our experiences.
“I continue to tell my story of pain, suffering, and frustration so that I can know where I came from and where I am at now…” –Diane, plaque psoriosis Health Leader
2. Sitting down at the table (validation and witnessing):
Being heard in a space where your story is validated can dissolve the isolation that often leads to depression. Beyond the sense of belonging, when we read the story of someone years ahead of us on a similar health journey, we can visualize ourselves in the future, potentially transforming our mood and outlook.
“I was overwhelmed by the number of people who could relate to my experience.” –Kristine, rare disease Health Leader
3. Serving dinner to others (altruism):
Helping others is a positive coping strategy. We see it in our forums all the time—helping someone else with their struggle strengthens our own sense of self-worth and purpose.
“I shared my cancer story and it felt right because it was serving a good purpose. My bad experience was being flipped into something positive.” –Scott, skin cancer Health Leader
What can you do?
If you found us here on Health Union’s website, it may be because you do business with us, but we invite you to dive deeper. Share your own health story in our forums. Let someone know what their story meant to you. Deepen your commitment to supporting others through simple actions, like:
Think about who tells the story
Join us in giving deep thought and consideration to which stories tend to be centered, and be sure to amplify voices that truly represent those impacted by health conditions—like those Natasha Lettner shared in this fantastic blog post about needing diverse voices in healthcare.
Support patient influencers online
Follow, share, and amplify the voices of influencers who share their health stories. For example, advocates like Rwenshaun Miller, Natasha Tracy, and Kody Green serve as beacons of hope for those imagining their lives with a mental illness. Help widen their ripple effect.
Start in your corner of the world
When someone close to you hesitates before saying, “I’m fine,” put down what you’re doing. Offer a listening ear. That exchange and validation may just transform you both.
Join us in witnessing the power of our communities, where patients and caregivers make sense of their health journeys and transform their outlook—not just for the storyteller, but for everyone who listens.
Learn more about how Health Union leads the industry in health influencer marketing through our network of 100,000+ patients and caregivers—all with a story to tell: health-union.com/human-side-of-data/#influencers
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