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

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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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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

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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

My Spoonie Sisters - YouTube

My Spoonie Sisters

Home - My Spoonie Sisters

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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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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.

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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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Chronic illness steals more than your health—it can rob you of your identity and everything you once loved. For Shira Haid, a classically trained musician and clinical massage therapist, the onset of multiple tick-borne illnesses, including Lyme disease, marked the beginning of a devastating transformation. What began as extreme fatigue in 2014 quickly spiraled into debilitating pain, cognitive dysfunction, and the loss of her independence.

The road to diagnosis proved maddening. Despite having a physician father actively helping with her care, Shira endured nearly two years of deteriorating health before finally discovering the root cause. Along the way, she faced shocking examples of medical gaslighting—being accused of drug use, labeled a "Lyme loony," and even receiving suggestions from a doctor about how she "should kill herself next time." These experiences highlight the profound ignorance and dismissal many chronic illness patients face when seeking help.

Perhaps most heartbreaking was Shira's disconnection from her artistic self. "For a very long time, my thought process was what is the point? There's no point in my artwork anymore, there's no point in doing music anymore, because that's over," she reveals. This creative death felt as painful as her physical symptoms, leaving her a shell of her former self.

The financial reality of chronic Lyme disease compounds these challenges. With insurance companies refusing coverage—even after the CDC's recent acknowledgment that Lyme can be chronic—Shira estimates her family has spent hundreds of thousands of dollars on treatments. Not everyone has this privilege, leading many patients to attempt creating their own treatment protocols out of desperation.

Yet through therapy, nutritional changes, and gradually reconnecting with her creative passions, Shira has begun the slow journey back to herself. When she finally sang again after years of silence, the experience brought tears and a flood of emotions, reminding her of the person she once was and could be again.

Have you experienced medical gaslighting or the grief of losing parts of your identity to illness? Share your story in the comments and join our community of resilient chronic illness warriors helping each other find a path forward.

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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

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Have you ever wondered what it's like to be both the healer and the one in need of healing? Meet Mallory Carlson, an acupuncturist of nearly 12 years who has simultaneously navigated her own 16-year journey with debilitating migraines and women's health issues.

Mallory takes us deep into the raw reality of chronic pain, sharing how she's learned to read her body's signals and transform what once required days of recovery into hours. Her story illuminates the profound mental health challenges that come with chronic illness—from the isolation of canceled plans to the guilt of feeling like you're "too much"—and the powerful practice of self-compassion she's developed in response.

The conversation turns particularly powerful when Mallory describes her experiences with medical gaslighting and the physical, almost shock-like reaction she had when finally finding a doctor who recognized her condition after 14 years of searching. "It was such a physical experience," she explains, "the act of being seen and finding someone who can take care of you."

From this frustration emerged her platform, The Audacious Patient, born from righteous rage at healthcare inequities and dedicated to making complex medical information accessible. As Mallory shifts from hands-on patient care to education and advocacy, she's channeling her personal struggles into a mission that helps others avoid the years of confusion she endured.

Whether you're managing chronic illness, supporting someone who is, or simply interested in healthcare advocacy, this episode offers practical wisdom, validation, and a reminder that sometimes our greatest challenges become our greatest gifts to others. As Mallory beautifully summarizes what it means to be part of a chronic illness community: "It's solidarity and just a quiet knowing... we just have to be there for each other."

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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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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."

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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

🎙 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

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Have you ever found yourself scrolling through social media, seeing others with your same diagnosis seemingly thriving while you struggle to get out of bed? That gnawing feeling of "why them and not me?" isn't something we talk about enough in the chronic illness community.

The Spoonie Sisters dive deep into the complicated emotions of competition and comparison that silently impact many people with chronic conditions. Hosts Jen Weaver, Andi Byers, Linnea Knisley, and Angelic Ingram share their raw, honest experiences with jealousy, anger, and the overwhelming feelings that come when we measure our journeys against others.

Each sister reveals their personal turning point - from Andi's sixteen years of fighting for diagnosis validation while serving in the military to Linnea's realization that social media only shows highlight reels of chronic illness, not the full 24-hour reality. These powerful stories illuminate how comparison steals our joy and delays our healing, while community support transforms our experience.

For those newly diagnosed, this episode offers priceless wisdom: focus on your own journey, give yourself grace for small accomplishments, set healthy boundaries, and most importantly, let go of yesterday's struggles to embrace today's possibilities. As Linnea beautifully summarizes, "Compete in kindness instead of competing in suffering." Every win for one person in our community lifts us all.

Ready to transform your relationship with comparison and find your place in the chronic illness community? Listen now and remember that your journey isn't meant to look like anyone else's - it's uniquely, powerfully yours.

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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