The Sick Gaze

Send us Fan Mail

For this episode, I am joined by Christy Jagdfeld, President and Treasurer of the Brain Inflammation Collaborative, and Breanne Failor, Director of Strategic Partnerships for the Brain Inflammation Collaborative (BIC). This episode discusses a set of conditions that remain largely underdiagnosed and under-recognized, and those are Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). These two women recount their family's journey to diagnosis, proper care, and advocacy for their children with PANS/PANDAS. They also discuss the creation of BIC, examples of the 30+ neuroimmune conditions they study within their organization, and how patients can contribute to research remotely and at no cost! 

Learn more about BIC: https://braininflammation.org/

Unhide Research Platform: https://unhidenow.org/

If you have another autoimmune disease such as RA, and also experience OCD, watch this lecture: https://youtu.be/eSvTIO6wO0o?si=q_XISm02tAYFq-86

Follow on social media @braininflammationcollab

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

Nima Koucheki is a Swedish writer living in Amsterdam. He was diagnosed with Crohn's disease at thirty, after his stomach collapsed on a trip to Naples. Two surgeries and months on liquid formula followed, and at his lowest he weighed 56.7 kilos at 182 centimeters. A doctor told him that diet and lifestyle wouldn't change anything. He spent the thirteen years since finding out whether that was true, and has written in a journal every day of it. His book about those years is called The Teacher I Never Wanted. Now, he works in personalized nutrition. In this episode, we discuss challenges he's faced in his therapeutic journey with Crohn's Disease, differences between our two countries' healthcare systems, and strategies for managing nutrition for this autoimmune disease. 

Nima's book, "The Teacher I Never Wanted: 101 Health Optimization Tools" can be found on his website or Amazon at https://a.co/d/04r3YuLm

His new podcast Vital Pieces can be found at https://www.youtube.com/@nimakoucheki

To learn more about Nima, check out his website https://nimakoucheki.com/ or his Instagram @nima.koucheki

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

Hi guys! Long time no see! (or hear). I recorded this episode from bed during a chronic illness flare, and I'm so glad I did! I had been wanting to talk about OCD for a while now, as it is something I have been dealing with for around 2 years. This episode is for anyone with OCD, PANS, PANDAS, or even just extreme anxiety who wants to better manage their condition. This is an amalgamation of everything I've learned over the past few years: what helped, what didn't, and how I coped, and I'm in a much better place now than I was when my OCD first onset! Particularly useful for those with other health conditions like hEDS, MCAS, PMDD, etc...

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

In honor of Thank You Public Health Day, here are five public health updates you should know! This episode was recorded over a month ago. Although a temporary funding bill was passed and signed into law on November 12, 2025, ending the government shutdown, many of the issues we discuss are still very real. In this episode, we talk about what was happening at the time and why these problems continue to matter.

We cover federal spending concerns, rising healthcare premiums, ongoing disability discrimination, food security challenges, and other public health issues that affect everyday Americans.

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

Welcome to The Sick Gaze Podcast! In this episode, we time-travel through centuries of wild medical myths, questionable “treatments,” and deeply rooted biases that have shaped women’s healthcare as we know it.

From the ancient idea of the “wandering womb” to Victorian “hysteria cures,” to the rise of douching ads and eugenics-fueled clitoridectomies, this episode dives into the bizarre and often horrifying ways women’s bodies have been misunderstood, medicalized, and controlled. We talk about how tuberculosis once became fashionable (“consumptive chic”), why doctors thought cycling caused bicycle face, how midwives were demonized as witches, and how childbirth shifted from community-centered care to sterile hospital rooms.

The three of us - Molly, Tayler @distaaybled, and Amy @amyrosaliee - are all chronically ill women who’ve experienced medical dismissal firsthand. So we decided to dig into the history that built the biases we still face today. Our conversation moves through time and theme, connecting the dots between superstition, sexism, and the modern medical system.

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

Hi everyone, and welcome to this quick episode. I wanted to take a moment to introduce myself and share some of my journey with chronic illness. I live with rheumatoid arthritis and hypermobile Ehlers-Danlos Syndrome, two conditions that have touched almost every part of my life. For me, illness hasn’t just been about navigating symptoms, treatments, or doctors’ offices. It’s been about confronting the larger systems of ableism and sexism that shape how people are seen, treated, and valued.

Living in a body that doesn’t always cooperate has forced me to redefine what makes me worthy: not productivity, not being “easy” or “convenient,” but the inherent value I hold as a person. That hasn’t been an easy lesson. It’s been a process of learning through frustration, sadness, resilience, and the slow unlearning of the belief that my worth is tied to how well I can perform for others.

By sharing my story, I aim to contribute to the ongoing development of this platform, fostering open and honest conversations about illness, identity, and care. This podcast is about making space for the messy truths of living with chronic conditions, and also about the power we find in telling our stories and building community.

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

In this episode, I sit down with medical writer Hailey Hudson, who first began experiencing symptoms of hypermobile Ehlers-Danlos Syndrome in her teens. By her twenties, her condition had progressed to the point where she could not eat without extreme pain, nausea, and fullness. She reflects on navigating a healthcare system that too often dismisses young women with GI issues as anxious teenagers rather than recognizing them as patients in need of genuine and urgent medical care. Hailey’s story underscores her resilience and her determination to forge a life shaped by both entrepreneurship and advocacy—pursued not only in spite of, but also because of, the limitations imposed by chronic illness. You can learn more about Hailey and her work at https://thehardworkingcreative.com/ or check her out on linkedin at https://www.linkedin.com/in/atlantahealthcarewriter/

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

For years, Ada Port moved through the healthcare system without a diagnosis, despite living with persistent and life-altering symptoms.  Without a clear explanation, it was difficult to speak about her experience, especially when her pain was often minimized or overlooked by providers. Amid her deteriorating health and the absence of a diagnosis, Ada felt lost and confused, like the foundation of her sense of self was shattered. Ada made a promise to herself: once she had answers, she wouldn’t stay silent.

In this episode of The Sick Gaze, Ada shares her diagnostic journey through Ehlers-Danlos syndrome, endometriosis, and visceroptosis, even sharing the shocking reaction following her provider's order for her to do a Beighton Scale Exam at a young age. She reflects on what it means to live for years in the absence of medical clarity, and how gaining a diagnosis gave her the language and authority to begin advocating, not only for herself, but for others. 

Now a medical student, Ada is helping shape a more inclusive future for people with disabilities and those living with chronic illnesses in medicine, from both sides of the exam room. 

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

In today's episode, I sit down with Erica Falco, a woman living in Long Island, NY, with multiple chronic illnesses that greatly affect her daily life, including endometriosis, hEDS, POTS, MCAS, and gastroparesis. In this inspiring and heartfelt discussion, Erica elucidates the importance of building a strong support system, citing patience and resilience as key components of her method of managing and healing from her chronic illnesses. She gives "a love letter to the undiagnosed", remembering how alone and directionless she felt while searching for quality healthcare. She talks about how to find that team of providers who WILL give you the care you deserve, and how to foster hope when it feels like it's just too much.

Erica wants to build a community of spoonies supporting each other, so follow along on her journey on Instagram at @ericaafal

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok! 

Send us Fan Mail

In this episode of The Sick Gaze, Tayler Goectau and I, Molly Dickerson, break down the alarming lawsuit filed by 17 states against Section 504 of the Rehabilitation Act—a crucial civil rights protection for disabled people. We discuss why 504 matters, how it impacts everyone (not just disabled folks), and the motivations behind this legal attack. More importantly, we explore the dangerous implications if this lawsuit succeeds and what we can do to fight back through collective action.

📢 Get informed and take action:
📝 Read more about the lawsuit and its consequences:

• Distaaybled on Substack (you can find a script to call/email your legislators here as well)
• AAFA: Lawsuit’s Impact on Asthma & Food Allergies
• Texas Attorney General’s Complaint
• DREDF’s Call to Protect 504

✊ Contact your representatives and demand they protect 504:
🔗 Find Your Representative

Now is the time to act—our rights depend on it.

Take care of your spoons! 
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at [email protected] and follow @thesickgazepod on Instagram and Tiktok!