Recognize Me
01/27/25 • 47 min
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
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:
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
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:
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
Previous Episode
Laughing Through Life's Quirks: From Public Spaces to Strip Club Stories
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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:
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
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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.
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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:
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
My Spoonie Sisters - Recognize Me
Transcript
Welcome to my Spoonie Sisters . Today I am thrilled to have an inspiring guest with us . Born in Belgium , she's a passionate advocate for patient empowerment and medical reform . After being diagnosed for not one but two decades , she courageously overcame the devastating effects of medical gaslighting and now uses her journey to give patients the tools to advocate for themselves . With a
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