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

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Keywords

Aggressive Systemic Mastocytosis, chronic illness, advocacy, mental health, writing, self-care, body image, healthcare activism, rare diseases, education

Summary

In 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.

Takeaways

Rachel 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."

Chapters

00:00 Understanding Aggressive Systemic Mastocytosis

03:31 Navigating Daily Life with a Rare Disorder

07:47 Advocacy and Activism in Healthcare

10:51 The Emotional Journey of Writing a Book

13:48 Finding Grace in Chronic Illness

16:01 Rest and Self-Care Strategies

18:27 Managing Allergies and Anaphylaxis

21:33 Dating and Relationships with Chronic Illness

24:45 Societal Pressures and Body Image

29:11 The Importance of Mental Health

34:07 The Power of Authenticity

37:34 Navigating the Medical System

43:45 The Reality of Living with a Rare Disease

49:56 Pursuing Education Amidst Health Challenges

54:06 The Political Nature of Healthcare

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.