My Spoonie Sisters

When Diagnosis Becomes Your Doorway, Not Your Destiny


Listen Later

What happens when doctors dismiss your symptoms for years, even as you're coughing up blood? For Amy, this medical gaslighting journey finally ended with a diagnosis of pulmonary arterial hypertension in March 2023, followed by immediate hospitalization and life-altering treatments.

Amy's story isn't just about receiving difficult diagnoses – including a rare heart defect, genetic mutation, and eventually breast cancer. It's about her revolutionary decision to reject the limitations others tried to place on her life. When her doctor automatically assumed she would need to quit her beloved career as a hairstylist and apply for disability, Amy pushed back with a simple question: "Why?" This moment transformed her approach to healthcare forever.

Throughout our conversation, Amy shares powerful insights about navigating the healthcare system as your own best advocate. "Your doctor is not your friend," she explains, encouraging listeners to approach medical appointments like interviews where you're assessing if this provider deserves to be on your healthcare team. Her practical suggestions – from asking doctors to document refusals in your chart to seeking second opinions without apology – provide a roadmap for anyone struggling to be heard.

The emotional impact of chronic illness resonates deeply throughout our discussion. Amy beautifully articulates the complex emotions behind diagnosis tears – not self-pity as many assume, but relief at finally being heard, grief for what's lost, and determination to create a meaningful life despite limitations. Her work with "Know Your Lemons" breast cancer awareness organization and her goals to lower mammogram screening ages show how advocacy can transform personal pain into powerful purpose.

Ready to find your voice in a healthcare system that too often silences patients? Listen now and discover why, as Amy reminds us, "Nobody knows your body better than you."

Send us a text


Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice


🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

...more
View all episodesView all episodes
Download on the App Store

My Spoonie SistersBy Jen Weaver

  • 5
  • 5
  • 5
  • 5
  • 5

5

17 ratings


More shows like My Spoonie Sisters

View all
This Podcast Will Kill You by Exactly Right and iHeartPodcasts

This Podcast Will Kill You

16,855 Listeners

Dateline NBC by NBC News

Dateline NBC

47,886 Listeners

Wonderland on Points | Credit Card Rewards & Budget Travel by Mary Ellen and Jo

Wonderland on Points | Credit Card Rewards & Budget Travel

193 Listeners