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
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Episode #6
The Hidden Struggles of Living with Chronic Illness Nobody Tells You About w/ Cyndii Sinek
Aug 2, 202641 minS5
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 2019 The impact of COVID-19 on increasing chronic illness prevalence The importance of peer support and shared experiences in managing illness Challenges faced in healthcare systems, including lack of personalized advice and follow-up The role of the hotline in addressing mental health crises specific to chronic illness How the hotline plans to relaunch and expand services with fundraising efforts The significance of employment, purpose, and routine in mental health for chronically ill individuals Ensuring data security and confidentiality in emotional support services Advocating for systemic change through community and policy engagement Timestamps 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 service ANCORA — Fiscal Sponsorship Organization — The nonprofit under which the hotline is currently operating VOCATIONAL REHABILITATION SERVICES — Support for employment for people with disabilities 988 Crisis & Suicide Prevention Hotline — Additional mental health support for crises Connect with Cyndii Sinek [LinkedIn](https://www.linkedin.com/in/cindysinek Support the show
Send us Fan Mail Living Chronic: Embracing the Long Middle of Chronic Illness In 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
My Conversation with Jeremy Tammone-RIP my friend. You will be missed.
Jul 22, 202639 minS5
Send us Fan Mail In this episode of Living Chronic, Brandy Schantz interviews Jeremy Tammone, a veteran who shares his harrowing experience of being shot and the profound impact it has had on his life. Jeremy recounts the night of the incident, his miraculous survival against the odds, and the significant changes he has faced since then. The conversation delves into themes of resilience, grief, and the ongoing journey of adapting to a new reality after trauma. Jeremy's story is one of hope, strength, and the importance of finding purpose in the face of adversity. In this conversation, Jeremy Tammone and Brandy Schantz discuss the profound impact of mental health on individuals with disabilities, the journey towards justice after traumatic events, and the importance of support systems. They explore the challenges of reinventing oneself after life-altering experiences and the necessity of acceptance in moving forward. The conversation also highlights the critical need for organ donation and the role of community in healing. Support the show
Invisible Illness: A Deep Dive into Women's Health
Feb 27, 202631 minS5
<p>Send a text</p><p>In this conversation, Brandy Schantz and Emily Ann Mendenhall discuss the complexities of invisible illnesses, particularly in women's health. They explore the intersection of trauma and chronic illness, the challenges of navigating the healthcare system, and the biases that often affect patient care. Mendenhall shares insights from her research and her book, 'Invisible Illness,' emphasizing the need for comprehensive care models and greater empathy in medical practice. The discussion highlights the historical context of women's health issues and the importance of understanding the unique experiences of patients with invisible illnesses.<br/><br/><br/><...
Unlocking Long COVID: Insights from Dr. Norman Gaylis
Feb 27, 202631 minS5
<p>Send a text</p><p>In this episode of Living Chronic, host Brandy Schantz speaks with Dr. Norman Gaylis, a board-certified rheumatologist who has become an expert in long COVID. Dr. Gaylis shares his serendipitous journey into researching long COVID, which began during the COVID pandemic when he was involved in developing a monoclonal antibody for patients suffering from post-COVID symptoms. He discusses the complexities of long COVID, including symptoms like brain fog, fatigue, and joint pain, and highlights the role of autonomic dysfunction in these patients. Through clinical research, Dr. Gaylis discovered significant dysautonomia in long COVID patients...
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