As your host, Jen, I've witnessed firsthand the transformative power of getting the right diagnosis - it's a journey that can be as tumultuous as it is enlightening. That's why I invited Olivia Dennis to the show, where she bravely recounts her quest through the tangled healthcare system, grappling with the often invisible web of IBS, anxiety, OCD, and autism. Olivia's candid narrative strikes a chord, revealing the emotional toll of being misunderstood and the subsequent liberation of understanding her true self after an autism diagnosis at 19. Her resilience is a beacon for anyone feeling lost in the labyrinth of healthcare.
Our exploration of chronic illness doesn't stop there. Olivia courageously steps into the spotlight, shedding light on her life with a spectrum of genetic and chronic health conditions, including POTS, CMT, fibromyalgia, and gastroparesis. Her story is a testament to the relentless pursuit of balance between treatments and lifestyle changes, which includes a daily regimen of managing symptoms that could easily overwhelm the strongest among us. Our guest's insights into the genetic intricacies of CMT and the pervasive influence of fibromyalgia offer a poignant reminder of the complex battles fought behind the smiles of those with invisible illnesses.
Wrapping up with a touch of warmth and compassion, Olivia opened up about the joy she found in assembling spoonie boxes for fellow chronically ill young adults, a project that has seen 58 care packages spread light across the country. These acts of kindness, along with the steadfast support of therapy, family, and the unwavering love of pets, have become a cornerstone of her personal journey. Through stories of validation, laughter, and faith, this episode celebrates the indomitable spirit that unites us in the face of life's greatest health challenges. Join us for an episode filled with raw emotion, unwavering courage, and the healing power of community.
Instagram accounts: @oliviardennis
@yourpainhasapurpose
Info & Funding for Spoonie Boxes: https://www.gofundme.com/f/fund-care-boxes-for-chronically-ill-teens
Mental health resources: https://linktr.ee/mental.health.support
Olivia’s favorite ice packs: https://www.releafpack.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.

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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/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
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GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Imagine finding yourself in a whirlwind of chronic pain and being told by the medical world to just lose weight and follow a keto diet. Picture the emotional turmoil that comes with such advice and the relief of finally finding a medical professional who listens. This is the narrative of our guest, Kayla, a brave individual who faced chronic conditions head-on. Her journey from diagnosis, mental health struggles, the empowerment of finding the right medical team, to finally being diagnosed with Psoriatic Arthritis, is nothing short of inspiring. The resilience and determination she displayed in the face of prognosis will inspire listeners who might be in a similar situation or simply need a story of triumph against adversity.
With her unique toolkit of coping strategies for managing chronic pain, Kayla offers listeners a wealth of practical tips, from the utilitarian—like ice packs and ergonomic keyboards—to the emotional—such as building a supportive network and harnessing the power of faith and social media. Kayla underlines the necessity of self-care, drawing strength from devotional readings, prayer, and inspiring individuals who candidly share their own journeys. As a writer, she brings a fresh perspective on the themes of ability and disability and how they shape one's sense of self. Join us for a tale of hope, resilience, and the power of community in the face of chronic pain. This episode promises to stir, educate, and empower.
Links:

• Website/Blog: https://theunicornwriter.com/
• Instagram: https://www.instagram.com/theunicornwriter93
• Facebook: https://www.facebook.com/theunicornwriter
• Newsletter: https://bit.ly/theunicornwritersnewsletter
• Find Aivan: The One Truth on Amazon: https://amzn.to/3nFEBB5
• Find Metamorphosis on Amazon: https://amzn.to/3LIqoLN
• Hope Amid the Pain devotional journal on Amazon: https://amzn.to/3SCtNkp
• Hope Amid the Pain Facebook support group: https://www.facebook.com/groups/hopeamidthepain/
• Follow Daphne Self on Instagram: https://www.instagram.com/authordaphneself

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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/MySpoonieSistershttps://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/MySpoonieSistershttps://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

When resilience meets wisdom, stories like that of Carrie Shepperson unfold. Her journey through the labyrinth of Still's disease, narrative rich with city savvy and mountain wisdom, is one I had the privilege to uncover. Carrie, hailing from Kentucky and a steadfast volunteer at AiArthritis, shares her personal odyssey from bewildering symptoms to a fierce advocacy for those entangled in the complexities of autoimmune disorders. Her analytical nurse's mind, coupled with an unwavering spirit, sheds light on the nuances of navigating a life altered by a rare medical condition.
Grasping the intricacies of Still's disease can feel like piecing together a puzzle in the dark, but Carrie's dialogue with me illuminates the path. She walks us through the rigors of symptom recognition, the significance of lab results that wax and wane, and the importance of understanding even the most enigmatic medical criteria. Our conversation explores both the scientific and the profoundly personal, offering solace to those embroiled in similar battles and providing a gateway to a community that supports and uplifts even in the grittiest times.
Beyond the diagnosis, we traverse the landscape of self-care, where Carrie imparts her wisdom on maintaining joint health and overall well-being amidst the storms of chronic illness. With simple yet potent strategies — a leisurely walk, the right balance of heat, ice, and nutrition, and the embrace of a gratitude practice — she paints a picture of a life embraced with joy despite its trials. Her story is a beacon, guiding listeners through the fog of their own health journeys with the assurance that every small step is a victory in the quest to live fully and vibrantly.
https://www.aiarthritis.org/
https://www.nomidalliance.org/
https://stillsnow.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

🎙 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/MySpoonieSistershttps://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

Are you caught in the crossfire of chronic illness in the Spoonie community? Feel like your healthcare provider is gaslighting you? Hear from Stefanie, the rheumatoid arthritis coach, who opens up about her own experiences with medical gaslighting as a patient and a family nurse practitioner. She pulls back the curtain on this hot topic, discussing what gaslighting entails in the healthcare sector. She equips us with effective communication strategies to foster a healthier dialogue with our medical providers.
The conversation takes a deep dive, discussing the red flags that come with medical gaslighting based on Stefanie's personal experiences. Jen shares a rather chilling encounter of being prescribed a medication that led to a seizure and her rheumatologist's shocking response. This segment underscores the need for open, honest discussions with healthcare providers, the importance of second opinions, and the role of shared decision-making in healthcare. Stefanie leaves us with practical tips to prepare for an appointment and the difference between gaslighting and medical professional exhausting all options.
Stefanie doesn't stop there; she shares her experiences with healthcare challenges and how she navigated the hurdles. She advocates for asking the right questions and emphasizes the importance of being kind to yourself when dealing with a chronic illness. And finally, we get a sneak peek into Stefanie's world as a rheumatoid arthritis coach, where she teaches clients to live their best life despite their condition. You'll hear about her six-month program designed to equip clients with the tools they need to navigate their health journey. So buckle up and prepare for a riveting conversation brimming with indispensable insights and practical advice.
https://www.instagram.com/rheumatoidarthritiscoach/
https://linktr.ee/rheumatoidarthritiscoach

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

🎙 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/MySpoonieSistershttps://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