From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris’s diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects patients and caregivers with valuable research opportunities. Her story highlights the significance of community support, both online and offline, and underscores the resilience required to navigate ongoing health challenges.

As we shift our focus to the complex landscape of medical challenges, Stacey bravely shares her experience with thyroid cancer, from the initial diagnosis to the ongoing recovery process. She reflects on the vital role her empathetic family played during her journey. Stacey also talks about the challenges of managing health transitions like perimenopause, providing a candid look at the medical appointments and adjustments that come with it. This conversation also explores how Rare Patient Voice empowers patients and caregivers by facilitating meaningful connections with medical research, highlighting the importance of authentic patient participation in advancing medical science.

In today's digital age, social media has the power to unite and amplify voices, and Stacey's journey demonstrates just that. Through platforms like Instagram and TikTok, she has found a vibrant community that offers solidarity and resources. Stacey also shares insights from Social Sid's advocacy within the HS community, illustrating how relatable content can spark impactful connections. We wrap up with an engaging discussion on the emotional trials parents face when seeking diagnoses for their children, emphasizing the need for determination and trust in one's instincts. Stacey's dedication to amplifying patient voices and building a supportive community is a testament to the transformative power of shared experiences and collective action.

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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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Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf on one side, reveals the significance of concise, clear communication with healthcare providers. Meanwhile, Megan, a fitness coach with rheumatoid arthritis, shares how she defies limitations to pursue her passion.

We tackle the often invisible nature of chronic illnesses and the misconceptions they breed. Through poignant anecdotes and actionable strategies, our guests reveal the power of having a strong, succinct narrative to advocate for oneself. From navigating awkward gym encounters to educating others with grace, our conversation showcases the importance of being prepared with a well-crafted story. We even discuss the merits of using creative tools like business cards to reinforce these messages in everyday interactions.

Laughter and resilience take center stage as we discuss how humor can lighten the load of chronic illness. We emphasize self-care through affirmations and the healing power of a supportive community. Sharing personal stories and quotes, we remind listeners that strength and joy can be found within, even amidst life's toughest challenges. By the end of this episode, you'll feel empowered to embrace your journey and equipped with the tools to communicate it effectively, fostering understanding and connection in the process.

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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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🎙 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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https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
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Website:
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*TRIGGER WARNING* violence, sexual abuse, and suicide

Serena's journey is one of extraordinary resilience and transformation. As our guest, she opens up about surviving a traumatic childhood filled with unimaginable challenges, including abuse and life in witness protection. Her unwavering determination to reconnect with her mother amidst adversity is a powerful testament to the strength of familial bonds. Facing the trials of homelessness and addiction, Serena's story sheds light on the critical impact of early trauma and the path to healing through storytelling.

Our conversation moves into the delicate process of healing, highlighting how Serena navigated the shadows of depression and anxiety that once loomed over her life. Drawing from her own experiences, she shares how unhealthy coping mechanisms can take root from deep-seated pain and the importance of embracing the mind-body-spirit connection for true recovery. Serena passionately discusses the liberating power of forgiveness and the contagious nature of positivity, urging listeners to create nurturing environments for themselves and their loved ones.

We also explore the intricate dynamics of betrayal, transparency, and self-preservation. Serena recounts the courage it took to leave toxic relationships marked by manipulation and abuse, emphasizing the importance of self-care and community support. Her journey underscores the necessity of honest communication within families and the critical decision to prioritize one's well-being. By sharing her insights, Serena provides invaluable encouragement to those walking their own paths to healing, inspiring listeners to seek strength from their communities and embrace vulnerability as a catalyst for personal growth.

Author Website: https://serenamastin.com/

Business Website:

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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

🎙 "Ever wanted to hug your autoimmune disease? Okay, maybe not—but with Giant Microbes, you totally can! These adorable microbes turn science into snuggles, featuring fun and educational designs of bacteria, viruses, and yes—even immune cells! They’re perfect for spoonies, medical professionals, or anyone who loves a quirky, cuddly take on health. Check out GiantMicrobes.com and find your new favorite pal today!"

Use code SPOONIE20 at checkout for 20% off!

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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/

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GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Ever wondered how innovative tools like trainer chopsticks can transform your daily life with a chronic illness? Join us, your hosts Jen, Ali and Andi, as we share our personal experiences navigating these challenges and discuss the inspiring lifestyle of Okinawa, Japan. Discover the secrets behind their remarkable longevity, from embracing community to pursuing passions that spark joy in everyday life. We reflect on how finding fulfillment in work and fostering a supportive circle can significantly boost well-being and promote longevity, drawing inspiration from the Okinawan way of living.

Prepare for laughter as we venture into the whimsical world of Giant Microbes. From dopamine and serotonin to the more peculiar mad cow disease and sperm cells, these Giant Microbes offer a humorous twist to gift-giving. We imagine the hilarious reactions they could provoke as earrings. Adding some groove to the mix, we explore the empowering potential of belly dancing. Plus, we’ve got some insights on wellness tracking tech, like the Guava Health App, Whoop band, and Aura Ring, alongside a light critique of social media’s tendency to miss the point. Join us for an episode filled with humor, insights, and a strong sense of community.

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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

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke’s story is not just about surviving but thriving, and it serves as a beacon of hope for anyone navigating the complexities of the healthcare system. Her book, "Recognize Me," offers a compelling insight into the life of someone living with fluctuating chronic conditions.

We explore the nuanced challenges of medical gaslighting and the crucial role of empathetic healthcare providers who genuinely strive to listen and truly understand their patients. Anneke’s experiences underscore the importance of self-advocacy and the transformative power of receiving a proper diagnosis and treatment. Her occupational therapy and health research background adds a unique perspective to her advocacy efforts, highlighting the intersection of personal experience and professional insight. The episode sheds light on the struggles many face with being misjudged by healthcare professionals and the ongoing effort to balance health challenges with familial responsibilities.

The conversation delves into the human side of healthcare, stressing the significance of effective communication and trust between patients and doctors. We tackle the stigma of being labeled as "drug seekers" and the fears associated with transitioning to new healthcare providers. Anneke shares her encounters with medical practitioners who value collaboration and admit to uncertainties. Her insights remind us that patients should never feel ashamed of their symptoms, and despite chronic illness, a fulfilling life is within reach. This episode is a powerful testament to the resilience of the human spirit and the importance of defining personal happiness amidst health challenges.

• Welcome page to my website:  https://flyingthroughthewoods.weebly.com/
• Blog: https://flyingthroughthewoods.weebly.com/flyingthro

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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

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

What gives you the ICK? Ever been trapped in an empty lobby, only to have someone sit right next to you? You're not alone! Join us as we laugh through the relatable quirks of public spaces that drive us all up the wall, from the orchestra of loud eaters to those who park just a smidge too close for comfort. We'll share some of our tried-and-true strategies for staying sane in these situations and laugh about how our childhood food aversions have hilariously done a 180 into our adult favorites.

On a completely different note, let's unwrap some wild strip club tales that promise both hilarity and heart. Picture a club with a pirate ship façade and a duo of the best wings you've ever tasted as we recount stories from behind the bar and the fascinating people we've met along the way. We even take a fun detour into the world of playful stripper names and reveal anecdotes from a documentary project in Tampa that shines a light on this misunderstood industry, complete with some unforgettable interactions.

Our adventure wouldn’t be complete without a dash of spice from the sex-positive world. Expect amusing stories like a Christmas lingerie gift gone rogue and the joy of bonding over "happy mail" exchanges within our community. We wrap it all up with self-love reminders and a cheeky offer of a sticker for surviving our episodes without needing a bathroom break. So, settle in for a rollercoaster of laughter, insight, and empowerment!

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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

Transform your approach to anxiety and personal growth with insights from Andi Byers, a decorated Air Force veteran turned holistic wellness practitioner. Andi & Jen dive in on the My Spoonie Sisters Podcast to share their incredible journeys, the hurdles faced in being recognized for achievements, and the vital role setting boundaries plays in managing anxiety. Andi's ventures, like Chronic and Iconic Coaching, are reshaping the chronic illness and wellness community, offering hope and strategies to those navigating similar paths. Together, we explore the strength found in community and the power of self-awareness in professional spaces.

Have you ever felt like anxiety had the upper hand during a public speaking engagement or a bustling conference? You're not alone. Jen recounts her own nerve-wracking experience at the American College of Rheumatology conference, where the atmosphere was nothing short of overwhelming. From the embarrassment of visible sweating to the lingering effects that spilled into the next day, managing anxiety is a battle we know all too well. But with grounding techniques, staying hydrated, and unwavering support from loved ones, there's a way to navigate through it. It's about self-care, embracing vulnerability, and sometimes, laughing at the exaggerated worries we concoct in our minds.

Social media and chronic illness present their own set of challenges, particularly when it comes to authenticity and health concerns. Our conversation touches on the evolution from seeking external validation to speaking with our own voices, underscoring the importance of prioritizing health, especially for those with compromised immune systems. From potluck food safety to the cleanliness of church communion, we humorously unpack the often-overlooked aspects of hygiene. Join us as we embrace personal growth, self-compassion, and the responsibility of caring for others, all while sharing a few laughs about faith, food safety, and the "five-second rule.

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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

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

 *Trigger Warning*

What if your lifelong pain was dismissed as mere imagination? Join us as we explore Riane's powerful narrative of self-advocacy and perseverance in the face of medical doubt. As a Hawaii native, Riane offers an intimate look into her life with juvenile rheumatoid arthritis and chronic migraines, shedding light on how these experiences, along with her grandmother's wisdom, have shaped her path in health and advocacy. Her story is a testament to the resilience needed to overcome the emotional and physical hurdles of chronic illness, emphasizing the importance of community support in this journey.

Riane’s candid recount of navigating the healthcare system during the tumultuous times of the COVID-19 pandemic offers a poignant perspective on the challenges of securing an accurate diagnosis. The episode uncovers the often-dismissive nature of medical professionals towards those with rare conditions, and Riane’s persistence in finding a compassionate healthcare team, leading to the discovery of an uncommon autoimmune disease, Ankaculitis. Her journey underscores the critical role of self-advocacy and the collaborative effort required between patient and practitioner to achieve effective care.

We then shift focus to Riane's experiences with medication management and alternative treatments, highlighting the nuanced use of cannabis microdosing and Eastern medicine. Discussions range from the drawbacks of traditional pain management methods to the promising benefits of acupuncture and cupping, offering listeners a broadened perspective on personalizing treatment options. As Riane passionately shares her journey, we explore her literary venture, "Blurred Vision," a poetry book inspired by her experiences with trauma, offering a dual narrative of healing from both survivor and perpetrator perspectives. This episode is a heartfelt call to explore and embr

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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

🎙 "Ever wanted to hug your autoimmune disease? Okay, maybe not—but with Giant Microbes, you totally can! These adorable microbes turn science into snuggles, featuring fun and educational designs of bacteria, viruses, and yes—even immune cells! They’re perfect for spoonies, medical professionals, or anyone who loves a quirky, cuddly take on health. Check out GiantMicrobes.com and find your new favorite pal today!"

Use code SPOONIE20 at checkout for 20% off!

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

What happens when your life takes an unexpected turn, and you're faced with navigating the complexities of a chronic illness far from home? Meet Helen, a determined life coach whose journey through an ankylosing spondylitis diagnosis after battling COVID in her late 20s reshaped her world. Tune in as Helen shares her personal story of overcoming the intense physical challenges and emotional upheaval of losing her active lifestyle, all while finding solace in her family's support. Her inspiring narrative is not just about survival but about embracing transformation and using her experience to empower others.

Helen’s relocation from the UK to Barcelona added another layer of complexity to her healing journey, but it also became a catalyst for growth. We discuss the intricacies Helen faced in transferring her medical care and maintaining treatment consistency across borders, highlighting the sometimes daunting, yet vital, task of navigating healthcare systems. Mental health emerges as a cornerstone of her journey, with Helen detailing her use of therapy, coaching, and gratitude practices as powerful tools in managing anxiety and fostering resilience. Her insights offer a roadmap for setting clear goals and cultivating a positive mindset, even amidst overwhelming circumstances.

The episode concludes with Helen's wisdom on balancing personal health and a thriving coaching practice. She shares how she proactively prevents burnout by assessing her well-being and managing energy givers and takers. Listeners can expect practical tips for self-care and a touching success story illustrating the transformative power of coaching. Helen's heartfelt gratitude and insights provide a rich resource for building resilience and finding fulfillment, no matter the setbacks. Join us for a moving conversation that not only inspires but equips you with the tools to face life's unexpected challenges.

Instagram: @helenjonescoaching

TikTok: @helenjonescoaching

Website: www.helenjonescoaching.com 

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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

After years of enduring chronic pain, Rick Cram transformed his life by embracing resilience. His story of overcoming a high school football injury and multiple surgeries will inspire you to rethink how you approach life's challenges. We promise you'll gain valuable insights from his “Plan to Be Your Best” program, designed to build resilience and find purpose despite setbacks.

Rick’s journey offers a deep dive into the complexities of chronic pain and the mental fortitude needed to navigate it. As he shares his experiences — from the chaos of mental storms during daily tasks to the therapeutic power of writing — you'll discover practical strategies for maintaining focus and positivity. Through personal anecdotes, like his own knee replacement, Rick reveals how a shift in mindset can turn fear into opportunity, urging you to listen to your internal dialogue and create strategies to manage overwhelming moments.

This episode also explores the power of community and connection in fostering resilience. Rick emphasizes the importance of teaming up with those who understand your struggles, transforming pain into strength and compassion. By celebrating small victories and putting your greatest strengths into action, you'll learn how to be your best self, even amidst adversity. Join us as we explore these themes and visit rickcram.com for additional resources to guide your resilience journey.

RickCram.com

https://www.facebook.com/rick.cram.3

https://www.instagram.com/rickcram/

https://www.linkedin.com/in/rickcram/

https://www.youtube.com/RickCram21

https://x.com/RickCram

#plantobeyourbest 

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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

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