EP. 79: The Cost of Being a Medical Mystery with Author Tilly Rose

This is the first episode of a new season of The SpoonFull Show, and Rachel is joined by author and patient advocate Tilly Rose as a special guest co-host for a powerful conversation about the cost of being a medical mystery.Together, they explore what it truly means to spend years searching for answers—being dismissed, misdiagnosed, and medically gaslit while your body continues to break down. Drawing from Tilly’s memoir Be Patient, the episode pulls back the curtain on the healthcare system and the unseen trauma patients carry long after hospital stays end.Rachel and Tilly talk openly about the emotional toll of not being believed, the loss of trust in medical systems, the physical consequences of delayed diagnosis, and how patients are often forced to become their own advocates just to survive. They also discuss the grief and relief that come with finally receiving a diagnosis, the identity shifts that follow, and why patient stories are essential in pushing healthcare toward real change.This episode is for anyone who has ever felt unheard, overlooked, or labeled “too complicated”—and for those who want to better understand what patients endure behind the scenes.Follow Tilly’s journey on Instagram at https://www.instagram.com/thattillyrose/Find Tilly’s book wherever books are sold. Purchase through Blackwells and receive FREE international shipping. Purchase here: https://blackwells.co.uk/bookshop/product/9781780726229Follow SpoonFull of Strength for podcast clips and updates at https://www.instagram.com/spoonfullofstrength/And on TikTok at: https://www.tiktok.com/@spoonfull.of.strengthLooking for chronic illness merch? Visit SpoonFull of Strength’s Etsy shop at www.spoonfullofstrength.etsy.com Use code PODCAST for 25% off your entire order.