Have you ever been casually told about a serious medical diagnosis you didn't even know you had? That jarring experience is just one of the many challenges we explore in this heartfelt conversation about navigating life after receiving a chronic illness diagnosis.

We kick off by catching up on our summer experiences and current health challenges – from mysterious hip pain and shoulder inflammation to surprising diagnoses and upcoming surgeries. Each of us shares the reality of living with unpredictable bodies that sometimes feel like they're working against us rather than with us.

One particularly powerful thread running through our discussion is the frustration of medical miscommunication. When doctors casually mention conditions they assume you already know about, or when diagnoses remain buried in medical charts without proper explanation, patients are left feeling confused and unsupported. We offer practical solutions for taking control of your healthcare journey, including using symptom tracking apps and preparing thoroughly for appointments.

The conversation takes an inspiring turn as we explore the transformation from merely surviving with chronic illness to genuinely thriving. Andi & Linnea share the journey of intentional self-care, mindful stress management, and learning to work with the body rather than against it. This shift in mindset doesn't happen overnight but represents a crucial evolution in living well with chronic conditions.

We proudly share our recently published books – interactive guides designed to support others on their chronic illness journeys with journaling prompts, affirmations, and creative exercises. These personal projects reflect our commitment to creating resources we wish we'd had when first diagnosed.

Whether you're newly diagnosed or years into your chronic illness journey, this episode offers validation, practical advice, and the reminder that you remain a whole person worthy of compassion and joy, regardless of your medical conditions. Your diagnosis may change aspects of your life, but with the right support and mindset, you can create a meaningful life beyond the limitations of illness.

So, You’re Newly Diagnosed:

https://amzn.to/44Fpha

Imperfectly You:

https://amzn.to/4mgV5sC

Redefining Fine:

https://www.amazon.com/Redefining-Fine-Journey-Self-Care-Unshakable/dp/1300976810

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

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For those living with rheumatic diseases, finding your voice can be as powerful as finding the right treatment. In this candid roundtable conversation, six extraordinary patient advocates—Chelsea, Stasha, Nya, Tanya, Jen, and Cheryl—pull back the curtain on their journeys from diagnosis to becoming Rheum Champions with the Rheumatology Research Foundation.

Each champion brings a unique perspective to the table, having navigated conditions ranging from rheumatoid arthritis and lupus to Hashimoto's thyroiditis and PCOS. Their paths to advocacy began in different ways—through therapist recommendations during pandemic isolation, chance videos that caught attention, or the realization that their professional knowledge could help others struggling with the same conditions. What unites them is the courage to transform personal struggles into public purpose.

The conversation takes us behind the scenes of the 2025 Rheumatology Research Foundation Investigators Meeting, revealing a surprisingly intimate environment where patients, researchers, and clinicians connect as equals. As Nya shares, "It helps us get to know rheumatologists as people more than just physicians." These connections humanize research and remind scientists of the lives their work ultimately touches. Jen describes the conference as "an antidote to hopelessness," where passionate researchers remain engaged and collaborative even after long days.

Beyond the formal advocacy work, these champions highlight how the community becomes a powerful healing force. Whether interviewing researchers together, sharing favorite books for an impromptu book club, or simply understanding each other's dietary restrictions without explanation, these connections remind them they're "human beings alongside everything," as Cheryl beautifully puts it.

Ready to transform your own experience into advocacy? The champions explain that becoming a Rheum Champion requires just a simple five-minute application. As Jen emphasizes, "It's not about having all the answers—it's about wanting to make a difference."

Apply to be a #RheumChampion today!

#RHEUMCHAMPION - The Rheumatology Lab

Jen Weaver:

https://www.instagram.com/gracefully_jen?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

Cherly Crow:

https://www.instagram.com/arthritis_life_cheryl?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

Vlog Home - Arthritis Life

Podcast Archives - Arthritis Life

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

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

Imagine the moment: sitting in a doctor's office, hearing those words for the first time – "You have a chronic illness." What follows isn't just medical treatment, but an emotional journey through fear, confusion, and eventually, finding your way forward.

We've been in that exact seat, and in this heartfelt season opener, my Spoonie Sisters and I share the raw, unfiltered truth about our diagnosis experiences. Andi reveals how years of medical gaslighting led to a diagnosis only after a serious health crisis, while I found relief in finally having answers. Linnea opens up about the fear of following her mother's difficult RA journey, not realizing newer treatments would offer different possibilities.

The conversation dives deep into what we desperately wish someone had told us early on. "This is not your great-grandmother's disease," I share, reflecting on how outdated perceptions of arthritis initially terrified me. Andi emphasizes the life-changing power of finding community after years of isolation: "I encourage people, please find sisterhood and brotherhood so you don't spiral in self-isolation."

We tackle the challenges that follow diagnosis – from handling information overload to the frustration of constantly proving an invisible illness. "Just because I don't look ill doesn't mean I'm not ill," Andi explains, challenging the common misconception of what "sick" should look like.

Whether you're newly diagnosed or years into your journey, this episode offers both practical guidance and emotional support. Our shared experiences create a roadmap for navigating the complex terrain of chronic illness with dignity, self-compassion, and even joy. Because as we discover together, chronic illness changes how you move through the world, but it doesn't have to define your capacity for connection and happiness.

So, You’re Newly Diagnosed:

https://amzn.to/44Fpha

Imperfectly You:

https://amzn.to/4mgV5sC

Redefining Fine:

https://www.amazon.com/Redefining-Fine-Journey-Self-Care-Unshakable/dp/1300976810

My Spoonie Sisters - YouTube

My Spoonie Sisters

Home - My Spoonie Sisters

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

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