Living With Chronic Illness as a Teen

In this episode of Partner Perspectives, host Leah E. Martin sits down with Lily, a teenager living with a rare autoinflammatory disease, to share her perspective growing up with chronic illness.Lily opens up about her earliest memories of being sick—frequent fevers, hospital visits, and years of unanswered questions before finally receiving a diagnosis in middle school. She reflects on what it was like to feel different from her peers, missing out on activities like gymnastics and school events, and navigating friendships while deciding when and how to share her illness with others.The conversation explores the daily reality of living with chronic illness as a teenager, including constant symptoms, managing flares, and the emotional challenge of wanting to feel “normal.” Lily shares how she copes on difficult days through writing, comfort routines, and staying connected with friends, while also acknowledging the temptation to push herself too far on the days she feels well.Lily also discusses her evolving independence—learning to advocate for herself while still relying on her mom for support, especially in medical settings. Inspired by her journey, she shares the story behind an app she is developing to help kids track symptoms, predict flares, and connect with others facing similar conditions.This episode is an honest and inspiring look at resilience, identity, and growing up with chronic illness, reminding listeners that while illness may shape your life, it does not define who you are.