Nobody hands you a job description when you get diagnosed with a chronic illness. One day you’re just living your life, and the next you’re coordinating care between multiple specialists, managing specialty pharmacy deliveries, navigating prior authorizations, and figuring out how to actually get someone on the phone at your insurance company. No training. No onboarding. Just you, doing your best.

In this episode Gerry gets honest about what it really looks like to manage a serious diagnosis behind the scenes, and why the invisible labor of being a chronic illness patient is a full-time job nobody asked for.

She talks about what it’s been like this year trying to get a basic procedure scheduled locally, hitting wall after wall because of her medical history, and ultimately having to travel to Mayo Clinic two and a half hours away for something most people handle down the street. She also gets into what it means to keep all of the other pieces moving at the same time, the refills, the supplies, the appointments, the clinical trial, all of it, while still trying to just be a person.

If you are a patient who is tired in a way that sleep doesn’t fix, this one is for you.

In this episode:

What nobody tells you about life after a chronic illness diagnosis, the real behind-the-scenes of managing PAH treatment and care, what happened when two local facilities turned Gerry away for a routine procedure, why coordinating your own care sometimes feels like guessing with high stakes, and what Gerry wants other patients to hear when it all feels like too much.

Connect with Gerry: @itsgerrylangan on Instagram, TikTok and YouTube.

This is not medical advice and I’m not a medical professional, just a professional patient. Please speak to your doctor if you have questions about your medical care and not some stranger on the internet.

Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe