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Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast
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“I am an extrovert. My body is an Introvert”
— Lauren Selfridge
Show notes from Remitting MS and Interview With Lauren Selfridge from This Is Not What I Ordered A Chronic Illness Podcast
Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called This Is Not What I Ordered.
To be VERY clear Lauren is on the calmer side of the spectrum of MS that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered
Great tech explanation of MS
Some VERY good information about MS diagnosis and tests
Stress is the doctors new go to instead of “hysteria”
Don’t be afraid to DEMAND a test that you know you need
Spinal Tap is much more fun as a movie than as a medical test, click here to see what I mean. HERE
Sorry real life barking pug decided to be a “helper dog” and be a part of the interview
The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children
Call to Drs. for interviewees I would love to see the other side of sick world.
Yes, Monica is a complete Neil Gaiman. There is no denying it. Someday Dr. Who will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.
All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.
What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.
Changing your views of what a successful fulfilling life to redefine not around what the body will do.Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!
Some great career choices for the chronic spoonie
Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.
Spoonie decisions for one’s work and social life, hint a bit like Sophie's Choice
Chronic illness and the kick in the tail for life experiences
Public transportation and chronic illness Thank you Uber and Lyft
Uber’s new medical serviceThe epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious
Google Image search is not always your friend when you have a chronic illness
The calming effects of watching aquariums or paint on YouTube
What it is like to hope on horizons with a well-funded disorder
Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group This Is Not What I Ordered
The importance of social media and access to others for chronic illness and for teens.
The physical and social isolation of chronic illness
The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue
Loving What Is Byron Katie. My new favorite quote, "It’s not your job to like me it’s mine.”
"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. Til We Have Faces
Chronic illness is transformative and not always in a bad way.
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Thank you!Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.
Till We Have Faces: A Myth Retold Loving What Is: Four Questions That Can Change Your LifeMore episodes
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Relationship Goals, Chronic Illness Edition: Dating, Love, and Literally Writing the Book with Therapist Lisa Gray
43:45|Keywordschronic illness, relationships, conflict resolution, empathy, writing process, power imbalance, emotional management, self-help, therapy, communicationSummaryIn this conversation, Lisa Gray, a marriage and family therapist, discusses the complexities of relationships when chronic illness is involved. She shares insights on conflict resolution, the importance of empathy, and how to navigate power imbalances in relationships. Lisa also delves into her writing process, the significance of finding meaning in chronic illness, and practical tools for writing and publishing. The discussion emphasizes the need for understanding, communication, and the ability to adapt in relationships affected by chronic illness.TakeawaysConflict increases intimacy if done right.Healthy conflict means knowing your partner better.Stop fighting when you're already mad.Impulse control is key in managing conflict.Power imbalances can affect relationships with chronic illness.Empathy must go both ways in relationships.Finding meaning is crucial in the grieving process.Values can guide actions despite chronic illness.Writing can be a therapeutic process.Use tools that work for your energy levels.TitlesNavigating Relationships with Chronic IllnessThe Art of Healthy ConflictSound bites"Empathy needs to go both ways.""Intimacy is very broad.""Weighted blankets are so comforting."Chapters00:00 Introduction to Chronic Illness and Relationships02:55 Navigating Conflict in Relationships06:02 Impulse Control and Managing Emotions09:07 Power Imbalances in Relationships11:54 Empathy in Chronic Illness Relationships14:57 Core Skills for Managing Chronic Illness17:42 Finding Meaning and Values in Relationships20:55 Personal Discoveries Through Writing23:55 Building Empathy Through Curiosity24:15 Exploring Virtual Reality and Empathy25:39 Relationships and Support in Chronic Illness28:05 Intimacy and Chronic Illness30:30 The Writing Process and Tools for Writers38:58 Publishing Insights and ResourcesTranscript
Navigating the Patient Journey with Author Brenda Snow
41:00|SummaryIn this conversation, Brenda Snow shares her personal journey as a patient diagnosed with multiple sclerosis and discusses her book, 'Diagnosed: The Essential Guide to Navigating the Patient Journey.' She emphasizes the universal experience of navigating chronic illness, the importance of grief and acceptance, and the need for strong doctor-patient relationships. Brenda also highlights the significance of maintaining one's identity while caregiving and the power of storytelling in healing. The discussion concludes with advice for aspiring writers and the importance of sharing personal narratives.Chapters00:00 Introduction to Brenda Snow and Her Journey02:49 The Universal Patient Experience06:48 Navigating Grief and Acceptance12:41 The Doctor-Patient Relationship20:42 Identity and Caregiving26:12 Finding Growth in Adversity31:56 The Power of Storytelling35:40 Advice for Aspiring Writers
The Untold Risks of TMS: Jordan Hanson's Journey
01:00:05|KeywordsTMS, transcranial magnetic stimulation, brain injury, mental health, medical gaslighting, patient advocacy, chronic illness, technology in healthcare, self-care, mindfulnessSummaryIn this conversation, Jordan Hanson shares her personal journey with transcranial magnetic stimulation (TMS), a procedure intended to treat mental health issues. She discusses the initial excitement about the treatment, the subsequent negative effects she experienced, and the challenges of navigating the medical system. The conversation highlights the importance of patient advocacy, community support, and the role of technology in managing health. Jordan emphasizes the need for awareness and understanding of the risks associated with TMS and the importance of self-care and mindfulness in coping with chronic illness.TakeawaysTMS is a procedure that uses magnetic fields to stimulate brain activity.Jordan experienced significant negative effects from TMS, including brain injury symptoms.Medical gaslighting is a common issue faced by patients seeking help.Community support is crucial for those dealing with chronic illness.Technology, including AI, can assist in managing health and communication.Self-care and mindfulness are essential for coping with chronic illness.Advocacy is important to raise awareness about the risks of TMS.Family planning can be complicated by health issues and uncertainties.Understanding the impact of chronic illness on daily life is vital.The journey of healing is ongoing and requires patience and support.TitlesThe Hidden Risks of TMS: A Personal JourneyNavigating the Medical Maze: Jordan's TMS ExperienceSound bites"I was called headache girl for a year.""I want to share my story to help others.""I have to protect myself and my energy."Chapters00:00 Introduction to TMS and Jordan's Journey01:13 Understanding the Impact of TMS on Life01:28 Introduction and Background on TMS04:20 Understanding Trans-Cranial Magnetic Stimulation (TMS)07:23 The Experience of TMS Treatment10:20 The Impact of TMS on Daily Life13:09 Medical Gaslighting and Patient Advocacy16:13 The Journey to Recovery and Diagnosis19:14 Community Support and Sharing Stories22:18 The Decision to Create a Documentary25:13 Advocacy and Future Goals36:11 The Need for Scientific Understanding in TMS40:42 Coping with Chronic Illness and Disability44:52 Navigating Family Planning Amidst Uncertainty52:54 Leveraging Technology for Brain Injury Support59:42 Personal Growth Through Adversity
Epilepsy, UK Health System VS US, and How We Can Do Better: Conversation With Célestine Laurin
01:20:40|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
Raven: Paranormal Romance Writer, Sirens, Disability in the Media, and Training Service Dogs
52:33|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.
Tessa Lynn Hodge: CA District 23, Rural Healthcare, and Mental Health
53:55|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
Joyce Griggs: How to Advocate for Yourself Before, During, and After your Appointment
50:25|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
Citizens United & the Disability Vote: Reclaiming Our Democracy Witch Alexis Claiborne
01:14:51|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
Aggressive Systemic Mastocytosis: Life, Advocacy, and Resilience: author Rachell Largent Phillips
52:48|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