For medically complex families, relationships with ourchildren’s medical teams are anything but simple.

In this episode, Madeline and Alyssa dig into what makesthem so emotionally loaded: the power imbalance, the fear of being dismissed,the exhaustion of coordinating between specialists, and the pressure to keepeveryone “on your side.”

We also talk about the moments that build trust — and theones that completely break it — plus what it feels like to train providers onrare diseases and advocate in systems that weren’t built for kids like ours.

If you’ve ever struggled with the emotional complexity ofthese relationships, this conversation will help you feel understood and lessalone.

Links:

JoinSticker Club!Support The Rare Life and get a thank you sticker (or four!)

Listento Ep 140: Alyssa’s Story.

Listento Ep. 67: What Your Child’s Doctors WantYou to Know, But Don’t Tell You.

Fill out our contact form to joinupcoming discussion groups!

Follow us on Instagram @the_rare_life!

Donateto the podcast or Contactme about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the website here.

And if you love this podcast, please leave usa rating or review in your favorite podcast app