Telling your story
If you're living with Ehlers Danlos Syndrome, you likely have numerous moments in your life that could be crafted into a story to share with friends, family, caregivers and medical professional to help them gain a better understanding of what it's like to live with complex, chronic health issues. Here are some tips to help you share your stories and experiences in a way that brings people into your world.
Crafting personal narratives
You don't have to share every aspect of your journey at once.
Start by sharing about one pivotal experience you’ve had in your journey with EDS (such as a long diagnostic journey, a big surgery, transitioning from independence to relying on a caregiver, becoming home or bed bound, the introduction of mobility aids or medical equipment, a treatment that started giving you your life back).
What happened and why is it an experience that you remember so clearly?
Tips to keep your audience engaged
"When you're telling a story, you're making a movie inside your listeners brain."
Use emotion in your personal narrative, describe how you feel/felt to help your audience understand your personal context
Find ways to connect with your audience (shared values/experiences) - people will become more engaged if they see themselves in your story
Keep things simple, cut out as many unnecessary details as possible
Keep the tense of your story consistent (ie. don't move around between past and present)
