In December 2023, I attended the Advances in Inflammatory Bowel Diseases (AIBD). The conference brings together leading healthcare providers and stakeholders across the gastrointestinal and inflammatory bowel disease space. The event is a remarkable opportunity to get an inside look at how the latest research is shaping the future of healthcare for generations of patients to come. From discussions on how nutrition can be implemented, to improving care outcomes, to deep dives into how newly identified genes might impact disease severity – There’s a tremendous amount of information to absorb. As a patient, it was exciting to get to witness how much progress is being made in the IBD landscape. Moreover, it was incredibly inspiring to meet individuals devoting their lives to finding solutions to painful and life-altering conditions.
This year’s conference was also a reminder of the importance of the patient story and patient voice. Being surrounded by a community of advocates united by a shared drive to support and uplift patients was rejuvenating. Sharing your story, whether it’s with a trusted friend or an entire community, can be intimidating. It requires us to open up and share intimate and vulnerable pieces of our identities. In particular, health is a highly personal and sensitive aspect of our lives. Often, when we first decide to begin our advocacy journey, we are embarking on the path alone, which can make the task all the more imposing. It’s important to remember that what you choose to share, or if you choose to share at all, is entirely up to you.
The fragments of your story that you share with other patients are a generous gift and an act of tremendous bravery.
If you’re thinking about sharing your story or if you are already an experienced advocate – Thank you! Inspired by my experiences at this year’s AIBD conference, here are a few ways patients can make an incredible impact with their experiences.
1. Your Story Provides Support and Empowers Others
As a new patient, a lot of health information you first encounter online is clinical and focused on the physical side of chronic illness. Nearly everyone has encountered WebMD’s symptom checker or a similar tool. These resources are invaluable tools and have helped countless individuals find vital answers. However, chronic illness is incredibly isolating. It’s all too common to feel alone in your battle against the massive foe of illness. Patient stories and the voices of the patient community are a shield against the pressure of isolation. Your story can provide valuable peer support and encouragement for others facing similar challenges. It’s often easier to learn from someone who has experienced a similar path to your own. Plus, knowing that others have survived similar challenges offers hope in times of darkness.
2. Your Story Raises Awareness and Increases Understanding
Chronic illnesses are complex, personal, and unpredictable. No two patients have the same experience, even if they share the same condition. In many ways, learning to navigate a chronic illness means learning a new language. Firstly, most health terminology and healthcare terms aren’t patient-centric. Patients living with chronic illness have to learn the meaning of countless new terms, from anemia to zonules. As a patient advocate, you play an essential role by translating the dense language of healthcare into real-world experiences. Secondly, your experiences help others understand the realities of complex illness. It’s impossible to comprehend the exact experience of an individual fully. However, for many, their first encounter with chronic illness is through the experiences of a loved one. Increased awareness of chronic diseases leads to earlier diagnoses and better support and understanding for those affected.
3. Sharing Your Story Inspires Advocacy
In the patient community, a lot starts and comes from the individuals who step up to share their stories and unite others. Patient stories build community by allowing others to discuss similar experiences. Experienced advocates are great guides that help new patients learn what to expect from their care journey, where to find support, and how to get involved. Patients who share their stories are advocates for their conditions. Sharing your story drives change in healthcare policies, research funding, and public perspectives. Your story is the heart of your advocacy and can guide you to new heights you never would have imagined.
It’s never too early or late to start advocating for others by sharing your story. Embrace your creativity, and let your authentic experiences shine through. Stories come in a multitude of forms, from videos to essays. At the Infusion Access Foundation, we aim to amplify new voices and stories to create meaningful and lasting change. Please share your story with us by emailing firstname.lastname@example.org.
We would love to gather photos and short videos of your journey. Tag us and #ShareYourChair with your support community!
Written by Infusion Access Foundation Digital Specialist, Grady Stewart