The Chronically Positive Podcast

You can watch this episode on YouTube In this episode of The Chronically Positive Podcast, I talk with sisters Jacqueline and Alexa, co-founders of Dateability— the first dating app created for people with disabilities and chronic illness. Jacqueline shares her personal journey navigating dating with chronic illness, from rejection and internalized ableism to finding empowerment through building an inclusive space. Alexa opens up about teaming up as sisters to launch the app, balancing accessibility, community, and entrepreneurship. 👉 Download Dateability: App Store: Google Play: Web App: 👉 Follow Dateability on Instagram

You can watch this episode on youtube In this episode, Anna Snapp joins me to share how she transformed years of medical trauma, mental health struggles, and invisible illness into powerful creative expression. From hospital stays and misdiagnoses to performing her story on stage for med students and Fringe Festival audiences alike, Anna’s journey is a reminder of the strength it takes to reclaim your narrative — and the healing that can come from being seen.🔗 Show Notes:Follow Anna on Instagram/TikTok: @theannasnappFollow the Chronically Positive Podcast: IG/TT @chronicallypositivepodJoin the Chronic4U Circle – Ila’s creative support group for people with chronic illness: https://chronic4u.com/pages/c4u-circle

You can watch the episode on YouTube here   In this episode of The Chronically Positive Podcast, I’m sharing my first experience traveling abroad with a chronic illness. I recently went to Italy, and while it was an incredible adventure, it came with its own set of challenges. From managing my health on the flight to navigating food, accessibility, and flare-ups, I’m talking all about how I made it through and the tips that helped me survive the trip. If you’ve ever wondered how to travel with a chronic illness, this episode is for you!

You can watch this episode on youtube In this episode, I sit down with Olivia aka @chronicallyillandhot to discuss our experiences with chronic illness, focusing on the importance of community support, humor, and the emotional toll of living with conditions like Ehlers-Danlos syndrome and mast cell activation syndrome. We share personal stories about navigating chemical sensitivities, the impact chronic illness has on relationships, and the importance of self-advocacy in healthcare. We dive into the challenges and triumphs of living with these conditions, highlighting the need for understanding and support from loved ones.Olivia and I also discuss the complexities of Mast Cell Activation Syndrome (MCAS), including managing allergic reactions, dealing with dietary restrictions, and the emotional challenges that come with it. Throughout the conversation, we touch on how stress affects our health and the importance of finding positivity and support within the chronic illness community.00:00 Introduction and Welcoming Liv00:31 Liv's Journey with Chronic Illness02:44 Connecting Over Shared Experiences04:49 Challenges with Chemical Sensitivities09:29 High School Health Struggles12:08 Supportive Relationships25:48 Struggles with Misdiagnosis and Early Symptoms26:41 Weight Gain and Medication28:12 Living with POTS and Fainting Episodes29:54 Impact of MCAS on Daily Life31:45 Navigating Food-Related Challenges36:29 Coping Strategies and Stress Management44:56 Finding Positivity and Community Support49:49 Concluding Thoughts and Future HopesOlivia's socials:Instagram: @chronicallyillandhotTikTok: @chronicallyillandhot

This week on The Chronically Positive Podcast, I’m joined by a very special guest, my brother Elias. Elias is a rare disease researcher and we’re talking about something that impacts all of us: science funding. Recent cuts to research funding may feel distant, but they directly affect people living with chronic illness and rare disease. In this conversation, Elias explains how science funding actually works, what’s currently at risk, and why it matters for patients, clinicians, and the future of healthcare. We talk about how genetic research moves from the lab to treatment, and what could happen if we lose the next generation of scientists. Whether you live with chronic illness, care about innovation, or just want to understand what’s going on, this is a conversation you don’t want to miss. Disclaimer: Elias's views are his own and do not represent any institution or employer. Nothing in this episode is intended as medical advice. Please consult with a healthcare professional for medical guidance.

In this episode, I sit down with my boyfriend, Matthew, to talk about the realities of love, support, and navigating life together with a chronic illness. We’re answering your questions, sharing personal stories, and tackling the tough topics—like feeling like a burden, managing household responsibilities, and maintaining intimacy. Whether you’re in a similar situation or just curious about how relationships evolve through health challenges, this episode is packed with real talk and honest insights. Don’t forget to follow and leave a review—it helps more people find these conversations! ⏳ Timestamps: 00:00 Welcome to Season Two! 00:16 Meet My Boyfriend, Matthew 01:03 Our Relationship Journey 03:01 First Date Stories 05:35 Living with Chronic Illness 09:28 Navigating Daily Challenges 17:24 Answering Your Questions 32:05 Navigating Feelings of Burden in Relationships 32:52 Communicating Needs and Emotions 34:59 Intimacy and Chronic Illness 38:29 Sharing Household Responsibilities 46:06 Managing Dates and Social Activities 49:41 Dealing with Pampering and Pity 51:28 Overcoming Anxiety and Fear 59:13 Conclusion and Reflections

Welcome to season two of the Chronically Positive podcast! This season, we're diving deep into the complexities of love, dating, and intimacy for those living with chronic illnesses. Today, we are joined by Danni Hertel, who shares her powerful story of navigating relationships while dealing with chronic illness. She discusses the impact of toxic relationships on her health, the importance of supportive partners, and the challenges of intimacy. From battling toxic relationships to finding her 'Goldilocks' partner, Danni's journey is both inspiring and eye-opening. Whether you're single, dating, or in a long-term relationship, there's something in this episode for you. Don't forget to rate, subscribe, and follow the podcast to help more people hear these essential stories. Tune in to hear Danni's incredible experiences and learn how to cultivate healthier, more supportive relationships. Danni's Instagram Danni's Bakery 00:00 Welcome to Season 2! 00:25 Introducing Danny's Story 01:36 Danny's Baking Journey 04:55 The Impact of Chronic Illness 06:38 Toxic Relationships and Health 12:44 Finding the Right Partner 17:18 Navigating Online Dating 19:17 When to Share About Your Illness 20:55 Navigating Social Interactions with Chronic Illness 24:01 Challenges of Alcohol and Chronic Illness 26:00 Family Connections and Health 33:24 Intimacy and Chronic Illness 40:31 Self-Acceptance and Relationships 44:27 Conclusion and Final Thoughts

In this gripping episode, the 'Miracle Man' Jake Haendel shares his extraordinary journey of surviving stage four acute toxic progressive leukoencephalopathy, a rare brain disease that left him fully conscious but unable to move or speak for ten months. Jake opens up about his descent into addiction, the horrifying misdiagnosis of being brain dead, and his incredible recovery journey. We delve into his current endeavors, including his advocacy work, his new accessibility-focused app 'Ahoi,' and his tell-all podcast 'Blink.' Despite the sound issues, Jake's story is a powerful testament to resilience, hope, and making meaningful change. watch this episode on YouTube: https://www.youtube.com/watch?v=rWW4IPFwy3M Listen to Jake's tell all podcast Blink https://open.spotify.com/episode/1f8x... https://podcasts.apple.com/us/podcast...  / miraclman31   ‪@miraclman31‬   / miraclman31  https://www.instagram.com/blinkthepod...00:00 Introduction to Jake Haendel's Story 00:41 Technical Difficulties and Episode Setup 01:19 Jake's Life Before the Diagnosis 04:35 The Onset of Symptoms 06:41 The Hospital Experience and Diagnosis 14:51 Living with Locked-In Syndrome 28:56 The Turning Point: Communication and Recovery 36:58 Non-Verbal Conversations and Early Recovery 38:05 Relearning and Regaining Abilities 39:10 A New Outlook on Life 41:07 From Behavior Therapy to Marketing 50:24 Creating Ahoi: Revolutionizing Accessibility 59:59 Introducing Blink: A Personal Journey 01:09:42 Conclusion and Season 2 Teaser

On this episode of The Chronically Positive Podcast, I sit down with Tyler Scheviak, the creator of the Fig app—a game-changing tool for anyone with chronic illnesses or food sensitivities trying to navigate their dietary restrictions. Tyler opens up about his journey, the challenges faced by those managing food allergies, and the surprising impact of mold toxicity on health. We also dive into the app’s incredible features and upcoming features, like restaurant recommendations and fostering community engagement, as well as the bigger mission to improve food safety and ingredient transparency. You can support Tyler's work and the Fig community by: Downloading the Fig app: Search 'Fig' on iOS/Android or visit foodisgood.com. Signing the #everyingredient petition: Advocate for ingredient transparency at everyingredient.org. Applying to be a Fig Restaurants Contributor: Click here to apply. Exploring patient resources for clinicians: Learn more at foodisgood.com/clinicians. Whether you’re living with dietary restrictions or just curious about how technology can make life easier, this episode is packed with inspiration and insights you won’t want to miss!

In this episode of the Chronically Positive Podcast, I sit down with Sami Leyde, a chronic illness advocate and dance teacher. We dive into her journey with chronic pain, her experiences with Ehlers-Danlos syndrome and POTS, and how she’s adapted her teaching methods to accommodate her health challenges. Together, we explore the importance of community, resilience, and finding a balance between mental and physical health. If you enjoy this episode, please take a moment to rate and follow the show—it really helps get it out to more people who might benefit from these stories. Thank you for your support! Sami's Instagram Episode Breakdown: 00:00 Welcome and Introduction 00:11 Meet Sami Leyde: Advocate, Content Creator, and Dancer 01:22 Sami's Journey with Chronic Pain 03:28 Discovering EDS and POTS 04:06 Managing a Dance Studio with Chronic Illness 07:36 Sharing Her Story Online 15:23 Family and Genetic Connections 20:24 Adapting and Overcoming Challenges 28:25 Conclusion and Final Thoughts

In this episode of The Chronically Positive Podcast, I talk with Emily von Weise, Head of Marketing at Guava. Emily shares her personal journey with chronic illnesses such as Ehlers-Danlos Syndrome, POTS, and MCAS, and discusses how her experiences influenced her role at Guava. We dive into how the Guava app empowers users to manage their health more effectively, featuring tools like symptom tracking, medication management, and an innovative Insights Hub. Emily also highlights the importance of community and resilience in navigating life with chronic conditions. -Download guava here -You can purchase guava tags here 00:00 Introduction to the Chronically Positive Podcast 00:38 Meet Emily: Head of Marketing at Guava 01:27 Emily's Journey with Chronic Illness 07:41 Discovering Guava: A Game-Changer for Chronic Illness Management 09:10 Guava's Features and Community Impact 12:28 Personal Experiences and Insights with Guava 20:37 Innovative Tools and Future Aspirations 23:43 Caffeine and Dysautonomia 24:56 Family Health History 27:27 Living with Ehlers-Danlos Syndrome 29:20 Navigating the Medical System 32:19 The Impact of COVID on POTS Awareness 32:53 Self-Diagnosis and Community Support 34:31 Challenges in Accessing Healthcare 37:24 The Role of Guava in Chronic Illness Management 45:54 Final Thoughts and Encouragement

This week, I spoke with Tayler Goectau about her journey navigating life with disabilities, particularly her transition to living with an ostomy. Tayler opened up about the emotional challenges she faced, the importance of community support, and how she turned her experiences into a creative outlet by designing ostomy covers. She also shared how thrifting plays a key role in her designs and emphasized the need to raise awareness and empower others. We talked about breaking stigmas surrounding ostomy bags, finding a new normal, and creating resources for people in similar situations. Tayler's Instagram Tayler's handmade ostomate bag covers

In this episode of the Chronically Positive Podcast, I sit down with Joe Glasgow, a talented writer and creative powerhouse, to discuss his journey with chronic illness, especially the impact of COVID-19. We explore the challenges of living with chronic conditions, the role of creativity and humor in coping, and Joe’s upcoming children’s book, Be a Hero, which teaches empathy for those with invisible illnesses. Our conversation also highlights the emotional and physical struggles faced by those with chronic conditions and the supportive community that can arise from shared experiences. Check out Joe’s book here: Be a Hero on Amazon And you can follow Joe’s newsletter here: Joe Glasgow’s Newsletter

In this episode of The Chronically Positive Podcast, I’m joined by Kaylee Bays, a dancer who is breaking barriers and redefining what’s possible in the performing arts. Kaylee shares her journey from discovering her passion for dance to navigating the challenges of living with Ehlers-Danlos Syndrome. We discuss her experiences on So You Think You Can Dance and performing at the Paralympics, the importance of authentic representation in the dance industry, and how she’s adapted movement for disabled dancers. Kaylee also highlights the power of community, connection, and dance as a form of healing and expression. This conversation is a testament to resilience, creativity, and the strength of the disabled community—I can’t wait for you to hear it!

Today, it’s just you and me! In this solo episode of The Chronically Positive Podcast, I’m sharing my personal journey of finding a new normal after being diagnosed with POTS and EDS. I’ll take you through the ups and downs of accepting my new reality and how I turned my challenges into opportunities to connect, create, and inspire. I’ll also share some practical tips, a fun rapid-fire segment, and a challenge to help you bring more joy and purpose into your own life. Whether you’re newly diagnosed or have been navigating chronic illness for years, I hope this episode inspires you to create meaning in your journey.

In this episode of The Chronically Positive Podcast, I’m joined by Samantha Jade Durán, a powerhouse designer, activist, and influencer known online as @adisabledicon. Samantha opens up about her journey as a Latina navigating life with complex disabilities and chronic illnesses while breaking barriers in the worlds of fashion and beauty. We dive into Samantha’s groundbreaking work in adaptive fashion, her passion for disability advocacy through her movement #Access2AllNow, and how self-expression through makeup and style can be empowering. Join us for an inspiring conversation on why adaptive design benefits everyone and how creativity and advocacy can transform lives. Whether you’re looking for inspiration or insight into the future of inclusive fashion and beauty, this episode is a must-listen!

Welcome to the very first episode of The Chronically Positive Podcast! I’m your host, Ila, and I’m excited to share my journey with you. In this episode, I’ll dive into my personal story of living with chronic illnesses, including POTS and Ehlers-Danlos Syndrome, and how I’ve turned my experiences into advocacy and community-building. This podcast isn’t about forcing positivity or suggesting that a positive mindset is the solution to living with chronic illness. We all know it’s not that simple. Instead, The Chronically Positive Podcast is about resilience, creativity, and finding meaning in the challenges we face. Whether you're newly diagnosed or have been living with a chronic condition for years, I hope this podcast will inspire you, help you feel seen, and remind you that your journey matters.