Living Chronic: Ability At Work

Brandy Schantz

Welcome to Living Chronic: Ability at Work, the podcast where disability meets the future of work. Hosted by Brandy Schantz—a disabled veteran, workplace accommodation expert, workforce development leader, and author—this podcast challenges the way we think about disability in the workplace. Through honest conversations, expert insights, and lived experience, we explore what it really takes to build workplaces where everyone has the opportunity to thrive. Each episode tackles the issues shaping today's workforce: disability inclusion, reasonable accommodations, AI and the future of work, chronic illness, veterans in the workplace, mental health, leadership, public policy, and the systems that help, or hinder, people with disabilities from reaching their full potential. You'll hear from HR leaders, policymakers, researchers, medical experts, business executives, advocates, and people living with disabilities who are redefining what work can look like. Whether you're an employer trying to create a more inclusive organization, an HR professional navigating complex accommodation decisions, a policymaker shaping the future of work, or someone living with a disability or chronic illness, this podcast offers practical strategies, thoughtful conversations, and a fresh perspective on one of the largest untapped talent pools in today's workforce. Because disability isn't a barrier to talent, barriers are built into the systems around it. Together, we can dismantle those barriers, build belonging, and create workplaces where ability is recognized, supported, and valued. Living Chronic: Ability at Work—changing the conversation about disability, one workplace at a time.

  1. Episode 5

    The Long Middle with Mary Monoky

    Send us Fan Mail Living Chronic: Embracing the Long Middle of Chronic IllnessIn this episode of Living Chronic, Brandy Schantz and guest Mary Monoky explore the profound journey of living with chronic illness, focusing on the often-overlooked "long middle" — the lengthy, uncertain phase between onset and resolution. They share personal stories, insights on trauma, and the importance of resilience, connection, and understanding in navigating this complex experience.   The motivation behind sharing chronic illness stories later in life, including the freedom to be open about personal struggles  The significance of Maslow's hierarchy of needs in managing chronic illness survival and growth  The cycle of giving up and picking oneself up again, illustrating resilience in the face of repeated health crises  How animals and nature serve as anchors for mental well-being and motivation during long-term health struggles  The concept of the "long middle" — the enduring, often invisible phase of chronic illness lasting decades  The challenges of navigating complex healthcare systems, diagnosis delays, and unrecognized symptoms  The impact of chronic illness on loved ones, including trauma, invisibility, and changing family dynamics  The importance of listening to and trusting your body, using tools like wearable data for self-monitoring  The critical need for greater understanding and treatment options for dysautonomia and related conditions  A call to honor the trauma experienced by both patients and loved ones, recognizing the interconnected ripple effects Note: This episode is a deep dive into the emotional, physical, and social nuances of long-term chronic illness. If you're living through the "long middle," you're not alone and your experience is valid and shared by many. Support the show

  2. Episode 6

    The Hidden Struggles of Living with Chronic Illness Nobody Tells You About w/ Cyndii Sinek

    Send us Fan Mail Building the Chronic Illness Support System: The Story of the Chronic Illness Hotline In this episode, Brandy Schantz speaks with Cyndii Sinek, founder of the Chronic Illness Hotline, about the vital need for accessible mental health support and peer connection in the chronic illness community. They explore the origins, challenges, and future plans of creating a dedicated mental health resource that addresses a significant gap in healthcare. Key topics The inspiration behind founding the Chronic Illness Hotline in 2019The impact of COVID-19 on increasing chronic illness prevalenceThe importance of peer support and shared experiences in managing illnessChallenges faced in healthcare systems, including lack of personalized advice and follow-upThe role of the hotline in addressing mental health crises specific to chronic illnessHow the hotline plans to relaunch and expand services with fundraising effortsThe significance of employment, purpose, and routine in mental health for chronically ill individualsEnsuring data security and confidentiality in emotional support servicesAdvocating for systemic change through community and policy engagementTimestamps 00:00 - Introduction to Cyndii Sinek and the purpose of the hotline  01:00 - The genesis of the Chronic Illness Hotline concept in 2019  01:42 - COVID-19's role in increasing chronic illness diagnoses  02:05 - The gap in healthcare education and peer support reliance  02:49 - Personal stories emphasizing the importance of community and shared knowledge  03:58 - Common misconceptions about symptoms and the validation from community support  04:37 - The emotional impact of shame and validation in chronic illness  05:01 - The broad scope of the hotline encompassing various chronic and neurodivergent conditions  05:14 - How self-advocacy, preparation, and self-education can be life-saving  05:41 - Challenges with healthcare system follow-up and the need for peer-led adjustments  06:43 - Daily struggles with medication and insurance frustrations  07:25 - The impact of systemic issues such as prescription flags and pharmacy errors  08:09 - The toll of repeated small frustrations and the resilience built through community  09:25 - The toll on mental health and the importance of support systems  10:15 - How the hotline helps share stories, coping strategies, and combat medical trauma  11:04 - The importance of creating space for venting and emotional release  11:33 - Anonymity and confidentiality protections for texters  12:23 - The current pause and fundraising needs for relaunching the hotline  13:28 - The integration of mental health support within the hotline in response to the crisis  14:10 - The ongoing grief and loss related to employment and identity  15:07 - Comparison with veteran and VA hotlines, emphasizing the need for specialized support  16:14 - The trust issues with traditional healthcare and the importance of community-led initiatives  17:09 - The nonprofit structure, funding, and plans for growth and independence  18:21 - How donations and social support can help relaunch the hotline  21:21 - The expanded services planned, including emotional support, celebrating wins, and connecting community resources  22:45 - The importance of resource guides and connection to programs like vocational rehab  23:54 - The critical need for employment opportunities and purpose in mental health  26:48 - The community’s shared experiences, touching on the social isolation of chronic illness  28:41 - Small steps for mental well-being, daily routines, and celebrating progress  34:27 - Use of the hotline as symptom tracking and accountability tool  36:09 - Data security and confidentiality as top priorities for trust and safety  37:15 - How to donate and support the hotline’s relaunch efforts  38:51 - The vision to influence policy and create systemic change through community voices Resources & Links Chronic Illness Hotline — Support and donate to the serviceANCORA — Fiscal Sponsorship Organization — The nonprofit under which the hotline is currently operatingVOCATIONAL REHABILITATION SERVICES — Support for employment for people with disabilities988 Crisis & Suicide Prevention Hotline — Additional mental health support for crisesConnect with Cyndii Sinek [LinkedIn](https://www.linkedin.com/in/cindysinekSupport the show

About

Welcome to Living Chronic: Ability at Work, the podcast where disability meets the future of work. Hosted by Brandy Schantz—a disabled veteran, workplace accommodation expert, workforce development leader, and author—this podcast challenges the way we think about disability in the workplace. Through honest conversations, expert insights, and lived experience, we explore what it really takes to build workplaces where everyone has the opportunity to thrive. Each episode tackles the issues shaping today's workforce: disability inclusion, reasonable accommodations, AI and the future of work, chronic illness, veterans in the workplace, mental health, leadership, public policy, and the systems that help, or hinder, people with disabilities from reaching their full potential. You'll hear from HR leaders, policymakers, researchers, medical experts, business executives, advocates, and people living with disabilities who are redefining what work can look like. Whether you're an employer trying to create a more inclusive organization, an HR professional navigating complex accommodation decisions, a policymaker shaping the future of work, or someone living with a disability or chronic illness, this podcast offers practical strategies, thoughtful conversations, and a fresh perspective on one of the largest untapped talent pools in today's workforce. Because disability isn't a barrier to talent, barriers are built into the systems around it. Together, we can dismantle those barriers, build belonging, and create workplaces where ability is recognized, supported, and valued. Living Chronic: Ability at Work—changing the conversation about disability, one workplace at a time.