5 Things For Supporters to Consider About Lyme Patient Stories


Patient stories are powerful ways to communicate and learn about experiences with Lyme and other tick-borne diseases. As supporters, you have an opportunity to hear and a responsibility to respect those stories told by the patients you care for and love.

The discussion below is not an exhaustive list, but it describes why patient stories matter and how you can celebrate the people who share them.

5 aspects of patient stories to consider:

  1. Experience –  Our stories can describe the physical, emotional, mental, medical, social, and socioeconomic aspects of tick-borne illness in a way that statistics or data simply cannot.

  2. Empathy – Patient stories promote understanding and compassion. When supporters listen to and truly absorb our stories, they better understand patient experiences. Listening may help supporters discover new ways to help their loved ones.

  3. Courage – Sharing a story takes tremendous courage and vulnerability. When we share our stories, we’re trusting our supporters to respect our experiences. It is best practice to validate the stories you’ve been told (and the people who have told them) and to keep information that’s been shared with you private unless you’ve been given consent to share it with others. t.

  4. Support – There are many reasons why we choose to share our stories. We may be looking for support. We may be searching for a community of people who understand what we are going through. We may share stories to process information or reflect on their experiences with Lyme. When patients choose to share their stories, we hope you will support us.

  5. Change – Patient stories can bring change. Stories can challenge assumptions and teach people new lessons. When you help patients share stories, enable us to work together to grow awareness of Lyme disease and tick-borne illness. You can inspire the change that we need to see in healthcare.

To discuss the topic of stories with the Generation Lyme community, join us for a Meet-Up in February! Tap the link below to RSVP for our monthly Meet-Ups for Parents and Supporters.