EP 57: Medical Gaslighting / Tilly Rose

 Bonus Episode: The Diagnosis Struggle – Medical Gaslighting & Patient PowerBetween Season 3 and 4, we're bringing you a powerful bonus two-part episode that dives deep into the real-life chaos of the diagnostic journey.In Part 1, Rachel and Tina get real about medical gaslighting—the subtle (and not-so-subtle) ways patients are dismissed, misheard, or told "it's all in your head." From endless referrals to the emotional exhaustion of chasing answers, they unpack the frustration of being bounced between specialists, handed vague explanations, and constantly fighting to prove their pain is real.In Part 2, we welcome our fellow Spoonie and special guest Tilly Rose, author of Be Patient. Tilly spent over 20 years as a so-called "medical mystery" before receiving diagnoses like Addison’s Disease and hypermobile Ehlers-Danlos Syndrome. Her memoir is a raw, witty, and powerful look at what happens when the healthcare system forgets the human behind the patient chart. Be Patient pulls the curtain back on the inner workings of the healthcare system—highlighting both its failings and its heroes—and makes a bold call for change. Through storytelling and advocacy, Tilly is using her voice to speak up for patients everywhere.Follow Tilly's journey on Instagram at: https://www.instagram.com/thattillyrose/Use these links to purchase Tilly's book:Order BE PATIENT (free worldwide shipping): https://blackwells.co.uk/bookshop/product/Be-Patient-by-Tilly-Rose/9781780726229Order BE PATIENT UK: https://www.amazon.co.uk/Be-Patient-Laughter-Hospital-Curtain/dp/B0CXK6XDNG/ref=mp_s_a_1_1?crid=1FGRBU999UI33&dib=eyJ2IjoiMSJ9.5Dks7Y1UNnyBacVhgUlrrw.Ke1Cd6DNaQvJVIfp8jVqFpPn7GtlOiRVPfa8l5I4Cns&dib_tag=se&keywords=be+patient+tilly+rose&qid=1747329860&sprefix=be+patient%2Caps%2C163&sr=8-1Visit Tilly's website, That Patient Collective:  https://www.thatpatientcollective.com/Tilly Rose's website is a platform dedicated to sharing patient stories and experiences, offering a perspective of life behind the hospital curtain. It serves as a space for individuals to connect, share their journeys, and advocate for change in the healthcare systemis a platform dedicated to sharing patient stories and experiences, offering a perspective of life behind the hospital curtain. It serves as a space for individuals to connect, share their journeys, and advocate for change in the healthcare system We’ll be announcing Season 4 soon, so make sure you’re following us on Instagram @spoonfulofstrength for updates and sneak peeks!