Artwork

Content provided by Rachel and Tina. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Rachel and Tina or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
Player FM - Podcast App
Go offline with the Player FM app!

BONUS EP 57: Medical Gaslighting / Tilly Rose

1:20:18
 
Share
 

Manage episode 483848663 series 3648435
Content provided by Rachel and Tina. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Rachel and Tina or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.

Bonus Episode: The Diagnosis Struggle – Medical Gaslighting & Patient Power

Between 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/9781780726229

Order 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=8-1

Visit 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!

  continue reading

59 episodes

Artwork
iconShare
 
Manage episode 483848663 series 3648435
Content provided by Rachel and Tina. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Rachel and Tina or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.

Bonus Episode: The Diagnosis Struggle – Medical Gaslighting & Patient Power

Between 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/9781780726229

Order 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=8-1

Visit 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!

  continue reading

59 episodes

All episodes

×
 
Loading …

Welcome to Player FM!

Player FM is scanning the web for high-quality podcasts for you to enjoy right now. It's the best podcast app and works on Android, iPhone, and the web. Signup to sync subscriptions across devices.

 

Quick Reference Guide

Copyright 2025 | Privacy Policy | Terms of Service | | Copyright
Listen to this show while you explore
Play