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.

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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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What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one’s story and the strength found in authenticity.
Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.
Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.

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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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https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
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Chronic illness impacts every aspect of our lives, including the bedroom. In this refreshingly candid conversation, we break down the walls of shame and silence surrounding sexuality when living with chronic conditions.
Ali returns from her mountain cabin retreat to share how her diagnosis completely changed her relationship with intimacy—once a proudly sexual person who even won a Thunder Down Under fake orgasm contest (with her mother cheering her on!), years of severe symptoms and medication side effects left her disinterested in physical connection. Only after prioritizing rest and health did she reconnect with that part of herself – a journey many Spoonies can relate to.
The discussion expands into how religious upbringings compound these challenges. From Catholic households to Mormon traditions, many of us received messages of fear and shame rather than education about our bodies. Jen's mother joins the conversation, offering fascinating insights into Mormon temple practices, including special garments with symbolic markings and secret names women aren't allowed to speak. Her powerful story of liberation – shouting her temple name from a mountaintop – demonstrates how breaking free from restrictive beliefs can be part of our healing journey.
Personal stories range from embarrassing (smuggling a vibrator through Middle Eastern customs) to deeply concerning (the lack of comprehensive sex education in today's schools). We examine how gender expectations shaped our understanding of roles within relationships and how breaking these generational patterns through open, honest conversations can create healthier foundations for our children.
Whether you're struggling with reclaiming your sexuality through chronic illness or want to better understand how illness impacts intimacy, this episode offers validation, laughter, and a reminder that your experiences deserve to be acknowledged without shame. Join us for this profoundly human conversation about one of the most natural yet seldom-discussed aspects of the Spoonie experience.

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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/

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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

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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/

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

Listen to this episode as I sit down to chat with Rekha about her journey with Lupus.

Lupus is a disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by Lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.

Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of Lupus — a facial rash resembling a butterfly's wings unfolding across both cheeks — occurs in many but not all cases of Lupus.

Some people are born with a tendency toward developing Lupus, which may be triggered by infections, certain drugs, or even sunlight. While there's no cure for Lupus, treatments can help control symptoms.
Rekha Sreedhara is a chronic illness warrior and advocate. She was diagnosed with systemic lupus erythematosus in 2001. Since then, she has been diagnosed with cutaneous lupus erythematosus and lupus nephritis as well as two rare diseases, pulmonary arterial hypertension, and thrombotic thrombocytopenic purpura.
Rekha works as a public health consultant specializing in substance use disorders. She resides in Massachusetts with her husband and three cats. In her spare time, Rekha loves to binge-watch shows; if you need a recommendation, she's your girl. She also enjoys traveling and has visited more than ten countries. Thriving one day at a time since 2001
Sharing experiences, strategies, hope, and laughter
Lupus | PAH | TTP
IG:https://www.instagram.com/livinglupustogether/

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