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YOUR CHRONIC ILLNESS FAIRY GODMOTHER HAS ARRIVED!!!!! In one of the most REAL episodes yet, I sit down with Dr. Sandra Slater, a professor of history and sexuality studies at the College of Charleston living with a variety of genetic chronic illnesses that have affected her throughout her whole life. Sandra shares her deeply personal story with many painful conditions, outlining her diagnosis of polycystic ovarian syndrome as a teenager when she showed up to the doctors office with a full chest of hair. The stigma of gender nonconformity left her in shame spirals until she broke free of this mindset and has since embraced the beauty and unique nuances of her body and self. Reframing her sense of self from a "sick person" to a "person with sickness", she reveals how she has managed to break free of what she felt was a limiting mindset to embrace the true diversity of her life. In todays discussion, Sandra skillfully walks us along the line between vulnerability and individual responsibility, as well as grieving the old self versus living in self-pity. She takes us on her journey of acceptance for life's challenges and hardships, letting go of the common "martyr complex", and learning the self-validation that leads to empowerment.
Thank you to Sandy for a great episode. This is SO relatable for us chronically ill folks, and I wish you were around as my chronic illness fairy godmother when I was first diagnosed!
NOTE: We do speak about female sexuality in this episode! ahhh scary! (Age warning: not for children's ears!)Take care of your spoons!
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WELCOME TO THE FIRST EPISODE OF SEASON 2 OF THE SICK GAZE!!! So glad you're still here! In our kickoff episode of the new season, we are joined by Ezri Burton, a 19 year old woman living with vasovagal syncope and postural orthostatic tachycardia syndrome, AKA POTS. Ezri shares her story of going from "gym girl" to living with condition that prevents her from being able to run a mile without nearly (or actually) passing out, and how she's been able to reclaim that athlete identity with a new and more inclusive perspective. Dealing with frequent medical dismissal of being told "all young girls deal with that because they are anxious", Ezri has had to cultivate resilience and learn how to advocate for herself to get the care she deserves and needs. Listen to this episode to hear some tips and tricks for managing POTS, friendships, and navigating healthcare.
Resources:
PUTTING AN END TO POTS PROGRESSION blog:
https://puttinganendtopotsprogression.com/my-full-story-defining-pots/?fbclid=PAZXh0bgNhZW0CMTEAAaYGtqhjOS6lsCQtgQFjunaHNaNEi_nAlLTus_j26kvbQ9zn_oTrOXiCgPw_aem_8KRYfnU4uXbeWZDeU_0crwTake care of your spoons!
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In this powerful TENTH EPISODE (woot woot) of the Sick Gaze Podcast, I sit down with the incredible Juliet Hawkins for an illuminating discussion on living with Ehlers-Danlos syndrome, POTS, and mast cell activation syndrome. As both a CV nurse and a patient with chronic illnesses, Juliet offers a unique and valuable perspective on the critical importance of self-advocacy in healthcare.
We explore the value of strong friendships while dealing with chronic conditions, highlight the necessity of speaking up and asking for what you need, and how important it is for providers to LISTEN TO THE PATIENT. Juliet provides keen insights into the often-overlooked patient experience, particularly in teaching hospitals where strict adherence to textbooks can overshadow the real-world needs of patients.
Join us as Juliet shares her compelling journey, offers strategies for effective self-advocacy (there are some REALLLYYYY GOOD tips in this episode) , and underscores the significance of truly listening to patients. This episode is a must-listen for anyone seeking to understand the complexities of navigating healthcare with chronic illnesses.
LINKS/RESOURCES MENTIONED IN THIS EPISODE:
- Book: Taming the Zebra, its much more than hypermobility by Patricia Scott and Heather Purdin
- Link to presentation on EDS and vocal cord dysfunction: https://youtu.be/da0r6HZ7qHs?si=q2F6rFzIntPDYM0yTake care of your spoons!
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On today's episode of The Sick Gaze Podcast, we delve into the complex and often misunderstood world of endometriosis. Joining me today is the knowledgeable and resilient Endometriosis warrior, Amy Lainhoff, a 41 year old woman living in Charleston. Together, we uncover the pervasive medical misinformation surrounding this wildly under-researched and underfunded chronic condition. Amy shares her expertise and personal experiences, shedding light on the realities of living with endometriosis, the challenges in obtaining an accurate diagnosis, and the myths that continue to hinder effective treatment. Amy spent 12 years searching for a diagnosis and receiving the typical gynecological "treatments" that actually made her endometriosis SO MUCH WORSE. Navigating us in detail through endometriosis care pathways, Amy wants to save other people from the consequences of medical misinformation. As a mom, Amy speaks about hope and setting a strong model for her girls, as she is aware that this is something that could be present for them as well. This episode aims to empower listeners with accurate information and advocate for better awareness and care for those affected by endometriosis. Truly a must-listen, don't miss this vital conversation on breaking down barriers and confronting the truth about endometriosis. This is truly a crucial listen for anyone suffering from endo, anyone who knows someone in chronic pain, and healthcare providers of every field and specialty.
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In this thought-provoking episode, we delve into the intricate realities of living with Postural Orthostatic Tachycardia Syndrome (POTS) as a college student. Our guest today, Elise Mclain, grapples with the daily intricacies of this unseen illness, sharing her journey through fluctuating heart rates, tachycardia, palpitations, and the persistent anxiety of discerning POTS symptoms from potentially life-threatening events.
We unravel the emotional and physical toll of managing a condition that eludes visible detection, focusing on the complexities of forming and nurturing relationships amidst such challenges. Our guest articulates the isolation of being in a stage of life where peers, professors, and even medical providers struggle to grasp the gravity of her condition.
The discussion extends to the vexing phenomenon of medical dismissal, where our guest recounts encounters with healthcare professionals who minimize her symptoms or do not fully respect POTS as a diagnosis. This narrative underscores broader issues surrounding the misconceptions and diagnostic hurdles often faced by individuals with invisible illnesses.
Join us for an enlightening dialogue that underscores resilience and the unrelenting need for self-advocacy. This episode serves as an invaluable exploration for those seeking deeper insight into the intricacies of POTS and the profound impact of unseen illnesses on the lives of young women.
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Get ready for a no-holds-barred episode of The Sick Gaze! This time, I'm sitting down with the incredible Chardonnay Brown, a 37-year-old woman living with endometriosis, hypermobile ehlers-danlos syndrome, interstitial cystitis, pelvic floor dysfunction, and a whole cocktail of chronic conditions. And joining her for the ride is her awesome husband, Dan Brown.
Chardonnay doesn’t shy away from the tough stuff. With her signature blend of humor and rawness, she dives into the nitty-gritty of patient-doctor relationships, grappling with trauma, and battling mental health struggles that come with chronic illness. We talk about the absurdity of medical gaslighting, the controversy and stigma around opioid use, and how society weaponizes weight and appearance against those with invisible illnesses.
Char’s fierce spirit and raunchy sense of humor keeps the conversation lively and real. She and Dan walk us through their life managing a full time job: chronic illness! Char opens up about finding new perspectives on life after loss and learning to let go of old expectations.
Tune in for a hilarious, heartfelt, and unfiltered chat with Chardonnay and Dan Brown. It’s an episode you won’t want to miss – raw, real, and full of the resilient spirit that defines living with chronic illness.
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In this episode of the Sick Gaze Podcast, I sit down with Stephanie Pittman, a 40 year old woman living with ankylosing spondylitis. A revolutionary and telling episode, Stephanie and I closely examine power dynamics influencing the patient-doctor relationship that limit space for openness, transparency, and healing. Stephanie's intelligence and vulnerability shines light on the damaging effects of racist and sexist medical stigmatizing on patient self-esteem. Quote Stephanie: "I dismiss myself so that they can't dismiss me." We also explore ways to work around this, how to resist safely, and how to say no! Truly a favorite episode of mine, so thank you Stephanie!
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In this episode of the Sick Gaze, Olivia and I discuss all types of relationships, from partners to employers to physicians, and the benefits and trials of navigating each when factoring in chronic illness. We discuss medical dismissal and invalidation, and how to still hold on to hope. Olivias lighthearted sense of humor and heartwarming candor makes this episode a great one! Please enjoy.
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On this episode of the Sick Gaze, with special guest Diane Carroll, we dive deep into the complexities of chronic illness. We dissect what it means to live a "normal" life, allowing us to take a closer look at how often we define ourselves by what we do, not who we are. Referencing her experiences with lupus, Diane graciously and hilariously guides us through self-acceptance and embracing the diversity of rich lived experiences. Diane shares the deep challenges of living with lupus, kidney disease, and a kidney transplant, as well as encourages others to break free of the shame associated with disability. She shows us, along with all of the other amazing participants of this podcast, that through chronic illness, there can be suffering as well as liberation. We also examine racial disparities in kidney disease evals and treatments in the SC Lowcountry and the broader context of racial injustice in healthcare. Diane's resilience inspires us all to "just keep showing up".
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In this episode of The Sick Gaze, I sit down with Sarah Klotzbach, a young woman living in the South Carolina Lowcountry who is navigating life with hypermobile Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia syndrome, and Mast Cell Activation disorder. Sarah guides us through her day-to-day life, sharing her relatives' understanding of illness from a devout Christian background, gender roles when living with illness, what productivity means when you're sick, and the performance of femininity and disability. We unravel the intricacies of power dynamics in the patient-doctor relationship, examining how these dynamics shape the healthcare experience for individuals with chronic conditions. She offers a candid exploration into the intersections of health, gender, and faith. I truly loved talking with Sarah, and this episode has a special place in my heart. Her honesty and emotion were so healing for me and for the younger version of me, who really needed to hear this at the time.
Prepare to gain a deeper understanding of the multifaceted challenges that individuals with chronic illnesses face, as we navigate through Sarah's story with empathy, compassion, and a commitment to fostering a more inclusive and understanding society. For more from Sarah, follow @lovethyselfcollective on Instagram and LoveThyselfBySarah on Etsy.
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Welcome to the second episode of The Sick Gaze podcast! On this compelling journey, we embark on a mission to shatter the silence surrounding invisible illnesses, amplify patient stories of enduring chronic pain, and dismantle the barriers within healthcare that disproportionately affect them. Today's guest is the wonderful Sydney Severance, a 19 year old Charlestonian, College of Charleston student, and activist living with hypermobile Ehlers-Danlos Syndrome, gastroparesis, Mast Cell Activation Syndrome, and Dysautonomia. In this candid but lighthearted conversation with Sydney, she shares her history of illness, starting from being a totally healthy high school athlete to living in a dark room with no stimulus for years. Together, we dive into the complexities of societal perceptions of disability and how to manage changing friendships when people do not understand your life anymore. Sydney skillfully guides us through the nuances of living with illness when it's both invisible and visible, dealing with body image, and frankly, her gratitude and knowledge shine through. I really enjoyed doing this episode and speaking with Sydney. Through all of her loss and hardship, she has created purpose and a space for healing for others, not to mention she is just a lovely soul to be around!! Tune into this enlightening episode of The Sick Gaze to gain a deeper understanding of the invisible battles faced by many and to join the conversation on reshaping societal perceptions of chronic illness.
Follow @operationupright for more of Sydney's content!Take care of your spoons!
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Welcome to the very first episode of The Sick Gaze podcast! On this compelling journey, we embark on a mission to shatter the silence surrounding invisible illnesses, amplify patient stories of enduring chronic pain, and dismantle the barriers within healthcare that disproportionately affect them. Today's guest is the amazing Alyssa Nickles, an artist from Charleston, SC, living with hypermobile Ehlers-Danlos syndrome, Mast Cell Disease, and craniocervical instability. In this thought-provoking episode, join our candid conversation with Alyssa, who shares her personal experience living with a chronic illness. Together, we delve into the complexities of how society perceives and understands illness when it remains hidden from plain view and attempt to conceptualize disability from a different perspective. Alyssa skillfully guides the discussion through the nuances of living with an invisible illness, exploring the impact on mental health, relationships, and identity. She recounts instances where her symptoms were downplayed or overlooked by medical professionals, sparking a crucial conversation about the need for increased awareness and empathy within the healthcare system. Tune in to this enlightening episode of The Sick Gaze to gain a deeper understanding of the invisible battles faced by many and to join the conversation on reshaping societal perceptions of chronic illness.
Take care of your spoons!
If you're interested in being interviewed for this podcast, click here.
