Invisible Not Broken - Chronic Illness Podcast Network

Epilepsy, UK Health System VS US, and How We Can Do Better: Conversation With Célestine LaurinSummaryIn this conversation, the speakers delve into the complexities of living with epilepsy and chronic illness, particularly focusing on the experiences of children and young adults. They discuss the challenges of diagnosis, the importance of support from family and friends, and the role of therapy in managing mental health. The conversation also touches on the stigma surrounding chronic illness, the impact of bullying, and practical advice for managing seizures and advocating for oneself in educational and social settings. Additionally, they explore how epilepsy is represented in the media and the need for better understanding and communication around the condition. This conversation delves into the complexities of living with epilepsy, particularly focusing on the challenges faced by women regarding medication and pregnancy. The speakers share personal experiences with the impact of epilepsy on their lives, careers, and the healthcare system. They discuss the stigma surrounding chronic illness, the importance of open communication with clients in business, and the differences in healthcare systems across countries. The conversation highlights the need for greater awareness and understanding of disability and chronic illness. In this conversation, the speakers discuss the challenges faced by individuals with disabilities, the impact of overprotection on children, and the need for inclusive spaces and universal design. They explore the healthcare systems in different countries, highlighting the disparities in access and affordability. The conversation emphasizes the importance of disability advocacy in health policy and the need for a more inclusive approach to legislation that considers the needs of all individuals, particularly those with chronic illnesses.Keywordsepilepsy, chronic illness, mental health, therapy, support, bullying, childhood illness, accommodations, media representation, epilepsy, medication, women’s health, chronic illness, disability, healthcare, personal stories, photography, career choices, mental health, disability, healthcare, universal design, overprotection, advocacy, inclusivity, chronic illness, education, mental health, accessibility

Chapters00:00 Introduction to Romance Writing and Disability05:49 Life Changes During the Pandemic11:53 Writing Romance with Chronic Illness17:55 Representation of Disability in Romance24:35 The Viral Success of a Romance Novel31:07 Writing as a Form of Self-Discovery36:06 Navigating Writing with Disabilities49:59 The Journey of Training a Service DogSummaryIn this conversation, the speakers delve into the intersection of romance writing and disability representation, particularly focusing on the experiences of chronically ill individuals. They discuss the impact of the pandemic on their lives, the process of writing romance novels that feature disabled characters, and the importance of authentic representation in literature. The conversation also touches on the viral success of one speaker's romance novel, the emotional journey of writing, and the practical challenges of writing with disabilities. Additionally, they explore the journey of training a service dog and how it has positively influenced their lives.TakeawaysThe pandemic led to significant life changes and new diagnoses.Writing romance novels became a creative outlet during difficult times.There is a need for authentic representation of disabled characters in romance.Readers appreciate seeing themselves reflected in literature.The success of a romance novel can be validating for writers.Writing can be a form of self-discovery and healing.Navigating the writing process with disabilities requires adaptation and support.Service dogs can provide emotional and physical support for their owners.Community and connection are vital for those with chronic illnesses.The journey of self-publishing can be empowering despite challenges.

SummaryIn this conversation, Tessa Lynn Hodge discusses her journey from being a licensed clinical social worker to running for office in District 23. She emphasizes the importance of community engagement, healthcare reform, and the need for authenticity in politics. Tessa shares her experiences and insights on the challenges faced by her community, particularly in rural areas, and highlights the significance of mental health accessibility and telehealth. Her campaign focuses on putting people over party and advocating for grassroots funding to ensure real change.Keywordsdisability, politics, healthcare, community, mental health, grassroots, Tessa Lynn Hodge, election, advocacy, social work

Keywordshealth advocacy, patient empowerment, healthcare system, self-advocacy, doctor visits, healthcare resources, United States of Healthcare, patient stories, healthcare challenges, AI in healthcareSummaryIn this conversation, Joyce Griggs shares her journey into health advocacy, highlighting the challenges faced by patients in navigating the healthcare system. She discusses the importance of self-advocacy, preparing for doctor visits, and managing the dynamics between patients and healthcare providers. Joyce emphasizes the need for personalized care and the role of technology, including AI, in shaping the future of healthcare. The discussion also touches on the systemic issues within the healthcare system and the importance of community support and resources for patients.TakeawaysAdvocacy is crucial for navigating the healthcare system.Patients often face significant challenges in getting proper care.Self-advocacy is an essential skill for all patients.Preparing for doctor visits can improve outcomes.Emotional management is key before healthcare appointments.Bias exists in healthcare, affecting patient treatment.Community support can empower patients in their advocacy efforts.AI has potential benefits and risks in healthcare decision-making.Personalized care is necessary for effective treatment.Understanding insurance processes can help patients advocate for themselves.TitlesNavigating the Healthcare Maze: A Journey of AdvocacyEmpowering Patients: The Role of Self-AdvocacySound bites"We need to be our own advocates.""We are the experts of ourselves.""Personalized care is essential."Chapters00:00 Introduction to Health Advocacy02:54 Personal Journey into Healthcare Advocacy05:53 Navigating the Healthcare System08:25 Building the United States of Healthcare11:34 Resources for Health Advocacy14:23 Preparing for Doctor Visits17:07 Managing Emotions in Healthcare19:48 Interviewing Healthcare Providers22:49 Addressing Systemic Issues in Healthcare28:02 Navigating Healthcare Access Challenges30:38 Addressing Power Imbalances in Healthcare34:26 The Impact of Bias in Medical Treatment35:22 Evolving Perspectives in Medicine37:23 Utilizing Technology for Patient Advocacy42:04 Building Community and Support46:51 Envisioning a Better Healthcare System50:20 end cap.mp4

Unpack the shocking influence of money in politics with us! We dissect how large donations and Super PACs are shaping elections and explore the crucial role of grassroots movements and community engagement in fighting back. Discover strategies for building political support, navigating the path to candidacy, and fostering meaningful conversations across political divides. We delve into the complexities of political discourse, the power of empathy, the necessity of intergenerational dialogue, and the urgent need for term limits. Learn about the lasting impact of Citizens United and why engaging marginalized communities, especially the disability community, is paramount. Hear personal stories on how family shapes political views and the undeniable importance of grassroots support for impactful campaigns.money in politics, super pacs, large donations, grassroots movements, community engagement, political campaigns, running for office, candidacy, political discourse, empathy in politics, intergenerational dialogue, term limits, citizens united, disability vote, disability community, marginalized communities, family and politics, grassroots support, election influence, campaign strategies

KeywordsAggressive Systemic Mastocytosis, chronic illness, advocacy, mental health, writing, self-care, body image, healthcare activism, rare diseases, educationSummaryIn this conversation, Rachel Largent Phillips shares her journey with aggressive systemic mastocytosis, a rare disorder that significantly impacts her daily life. She discusses the challenges of living with a chronic illness, including navigating the healthcare system, advocating for herself and others, and the emotional toll of writing her book, 'Life Beyond the Flare.' Rachel emphasizes the importance of self-care, mental health, and authenticity in the face of societal pressures and the complexities of living with a rare disease. She also highlights the political nature of healthcare and the need for continued advocacy for those with chronic illnesses.TakeawaysRachel was born with aggressive systemic mastocytosis, diagnosed in her 30s.It took 12 years for her to receive a proper diagnosis.Daily life is unpredictable, requiring constant vigilance and preparedness.Advocacy is crucial; Rachel has lobbied for healthcare reforms.Writing her book was a way to educate others about her rare disease.Self-care and giving oneself grace are essential for managing chronic illness.Rest can take many forms, including mental and emotional breaks.Navigating relationships while managing a chronic illness can be challenging.Societal beauty standards can add pressure to those with chronic illnesses.Mental health is as important as physical health in chronic illness management.Sound bites"I was born with it.""I have lots of EpiPens.""It's okay to have bad days."Chapters00:00 Understanding Aggressive Systemic Mastocytosis03:31 Navigating Daily Life with a Rare Disorder07:47 Advocacy and Activism in Healthcare10:51 The Emotional Journey of Writing a Book13:48 Finding Grace in Chronic Illness16:01 Rest and Self-Care Strategies18:27 Managing Allergies and Anaphylaxis21:33 Dating and Relationships with Chronic Illness24:45 Societal Pressures and Body Image29:11 The Importance of Mental Health34:07 The Power of Authenticity37:34 Navigating the Medical System43:45 The Reality of Living with a Rare Disease49:56 Pursuing Education Amidst Health Challenges54:06 The Political Nature of Healthcare

Join us for Part 2 of our inspiring conversation with acclaimed Fantasy Author Faye Perez on the "Invisible Not Broken" podcast! In this wide-ranging episode, Faye shares unique insights on how "Dressing Up" can be a powerful path to joy and self-expression, even when navigating the complexities of invisible disabilities.We delve into the "Rebellion of Kindness" and its role in fostering positive change, exploring how to build resilient communities in increasingly challenging times. Faye also offers profound reflections on the changing landscape of social norms and the nuanced experience of "Aging in the Time of COVID," providing a unique perspective on resilience and adaptation.For aspiring and established writers, this episode is packed with wisdom! Faye demystifies the "Writing Journey," revealing practical strategies for "Organizing Your Thoughts for Writing Success" and the transformative power of "Embracing the Joy of Writing." She candidly discusses "Navigating the Writer's Journey" and the profound "Art of Writing: Process and Responsibility."Tune in for an authentic, thought-provoking discussion that blends creativity, social commentary, and personal growth. Whether you're a fantasy fan, an aspiring writer, or someone interested in disability advocacy and building a kinder world, this episode offers invaluable takeaways.

Looking for a more inclusive, accessible way to date while disabled or chronically ill? 💘 In this eye-opening podcast episode, we talk to Jacqueline and Alexa Child, the founders of Datability — a revolutionary dating app built by and for the disability community. They open up about dating with chronic illness, building tech for accessibility, and why representation in love matters.This episode is perfect for anyone searching for disability-friendly dating apps, chronic illness support, or inspiration from disabled entrepreneurs.💬 Tap to listen and save for later! 📌 Follow for more disability advocacy, inclusive tech, and real talk about relationships.#DisabilityDating #Datability #InclusiveLove #ChronicIllnessAwareness #DisabledAndProud #AccessibleDating #DatingWithDisabilities #DisabledEntrepreneurs #RepresentationMatters #PodcastRecommendations #PinterestPodcast #LoveWithoutLimits

SummaryIn this conversation, Sarah Burton shares her journey with chronic illness, discussing her diagnosis, the challenges of parenting while managing health issues, and her transition from a corporate career to entrepreneurship. She emphasizes the importance of community support for individuals with chronic illnesses and the need for greater awareness and understanding in the workplace. This conversation delves into the challenges faced by entrepreneurs with chronic illnesses, emphasizing the importance of taking intentional time off, building supportive communities, and implementing effective business strategies. The speakers discuss tools for managing health while running a business, the necessity of setting boundaries, and the cultural changes needed in workplaces to accommodate diverse needs. They also highlight the significance of hiring disabled individuals and the Lilac project aimed at improving government support for disabled entrepreneurs.Keywordschronic illness, disability, parenting, ambition, entrepreneurship, support, community, diagnosis, mental health, workplace inclusion, chronic illness, entrepreneurship, mental health, community support, business strategies, work-life balance, disability inclusion, government support, automation tools, boundaries