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==

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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.

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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

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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

The tiny creatures lurking in your backyard could change your life forever. Shira Haid knows this reality all too well, having battled severe tick-borne illnesses that left her unable to walk or speak. Today, she's turning that painful experience into purpose through her educational platform, Lemon or Lime.

What began as a website has blossomed into a YouTube channel and growing social media presence dedicated to demystifying tick-borne diseases like Lyme, Babesia, and Bartonella. Shira's mission is clear: provide the resource she desperately needed during her own diagnostic journey that took three years and left her disabled.

Throughout our conversation, Shira shatters dangerous myths about tick-borne diseases. The CDC's claim that ticks must be attached for 36-48 hours to transmit disease? False – some infections can transfer in just 15 minutes. That famous bullseye rash everyone associates with Lyme? Only 20-30% of patients ever develop it. And the notion that ticks only exist in wooded areas of the Northeast? Wrong again – they're virtually everywhere except Antarctica, including desert states at higher elevations.

Perhaps most alarming is Shira's discussion of co-infections and emerging threats like Alpha-gal syndrome, a tick-transmitted condition causing potentially life-threatening allergic reactions to mammalian products – including medications. With 70% of pharmaceuticals containing mammalian ingredients, this presents a frightening challenge for affected patients.

For those concerned about prevention, Shira offers practical advice: treat clothing with permethrin, use Picaridin lotion on exposed skin, perform regular tick checks, and maintain shorter lawn heights. Hunters and hikers should consider specialized clothing with elastic cuffs that prevent ticks from accessing skin.

Connect with Shira on YouTube and Instagram @LemonorLime (remember, that's Lyme with a Y!) and join her mission to raise awareness about these devastating but preventable diseases.

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