Invisible Not Broken A Chronic Illness Podcast

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An Irreverent interview podcast for people with chronic illness, invisible illness, disability, and chronic pain. Be Kind. Be Gentle. Be A Bad Ass, and don't forget to share this episode with another spoonie.

Monica Michelle


    • May 21, 2025 LATEST EPISODE
    • monthly NEW EPISODES
    • 49m AVG DURATION
    • 221 EPISODES

    4.5 from 89 ratings Listeners of Invisible Not Broken A Chronic Illness Podcast that love the show mention: disabilities, chronic illness, monica, illnesses, invisible, compassion, struggles, alone, raw, relate, understand, helps, human, important, issues, learning, listening to this podcast, experience, humor, definitely.


    Ivy Insights

    The Invisible Not Broken A Chronic Illness Podcast is an incredibly informative and uplifting podcast that provides a platform for individuals with chronic illnesses to share their experiences. The hosts, Monica Michelle and Kyros Starr, tackle important topics related to chronic illness with empathy, humor, and authenticity. Through interviews with a diverse range of guests, they shed light on the challenges faced by those living with chronic illness and provide valuable insights into their daily lives.

    One of the best aspects of this podcast is the variety of perspectives that are presented. Each episode features a different guest who shares their unique journey with chronic illness, allowing listeners to gain a deeper understanding of the wide range of conditions and experiences within the chronic illness community. The conversations are dynamic and interesting, covering a lot of ground and providing valuable information about various conditions.

    Additionally, the hosts themselves bring a refreshing honesty and realness to the podcast. They are unafraid to discuss the difficult and controversial aspects of healthcare and chronic illness, while also maintaining kindness and consideration for differing opinions. Their humor and raw storytelling make for an engaging listening experience that is both informative and entertaining.

    While there are many positive aspects to this podcast, one potential drawback is that it may not appeal to everyone due to its focus on chronic illness. Those who do not have personal experience with chronic illness may not find it as relatable or engaging as those who do. However, for those living with chronic illness or seeking to learn more about it, this podcast is an invaluable resource.

    In conclusion, The Invisible Not Broken A Chronic Illness Podcast is a must-listen for anyone interested in gaining insight into the world of chronic illness. With its informative discussions, diverse range of guests, refreshing honesty, and genuine compassion for those living with chronic illness, this podcast offers a unique perspective that is both empowering and encouraging. It serves as a reminder that no one should face their struggles alone and provides hope for those navigating life with chronic illness.



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    Latest episodes from Invisible Not Broken A Chronic Illness Podcast

    Choosing Your Service Dog With Tara Moriarty

    Play Episode Listen Later May 21, 2025 67:07


    SummaryIn this conversation, the speakers discuss the complexities of choosing and training service dogs versus puppies, emphasizing the importance of temperament, the challenges of finding suitable dogs, and the training process. They share personal experiences and insights on navigating the world of service animals, including the significance of socialization and public perception. In this conversation, the speakers discuss various aspects of puppy training, focusing on capturing natural behaviors, creating a conducive learning environment, and the importance of crate training. They also touch on navigating dog parks, the need for services for disabled dog owners, establishing routines, and essential commands for service dogs. The conversation emphasizes the significance of understanding puppy development and the challenges that come with training during different growth stages.Keywordsservice dogs, puppies, training, temperament, challenges, public perception, potty training, socialization, choosing a dog, service dog training, puppy training, dog behavior, crate training, service dogs, dog parks, routines, commands, dog owner services, puppy development, positive reinforcement Hosted on Acast. See acast.com/privacy for more information.

    Founder of #NotJustFatigue: Activism from Bed Elizabeth Ansell

    Play Episode Listen Later May 12, 2025 59:41


    Chapters00:00 Understanding ME-CFS: A Complex Illness05:09 The Journey to Diagnosis: Misunderstandings and Challenges10:03 The Role of Caregivers: Support and Understanding14:53 Creating Community and Advocacy from Bed19:53 The Emotional Landscape: Grief, Rage, and Resilience35:41 Creating a Resource for ME-CFS Awareness40:19 The Role of Technology and Social Media43:34 Coping with Severe Illness and Loneliness47:30 Finding Joy in Small Moments55:54 Advocacy and the Fight for Recognition01:00:02 Closing Thoughts and Future Aspirations:From coping with severe illness to finding joy in small victories, this episode is a raw, honest, and ultimately hopeful look at resilience, advocacy, and the urgent need for change. If you've ever felt unseen in your health journey—or want to better understand those who are—this is a conversation you don't want to miss.

    Author Interview Jess Graham : Childhood Invisible Illness. Service Dogs, Writing a Book, and what about God?

    Play Episode Listen Later Apr 2, 2025 58:24


    SummaryIn this conversation, Jess shares their journey of writing the book 'Being Sick Enough', which explores themes of invisible illness, childhood trauma, and the complexities of living with chronic conditions. The discussion delves into the challenges faced as a sick child, the misunderstandings surrounding invisible illnesses, and the process of writing personal stories while navigating relationships and self-acceptance. In this conversation, the speakers delve into the complexities of navigating trauma, the importance of meditation, and the intersection of medication and wellness. They discuss the significance of honest conversations about medication, the balance between solitude and community, and the role of spirituality in personal healing. The dialogue also touches on societal challenges and the need for empathy, as well as practical travel tips for those with chronic illness.Keywordsinvisible illness, chronic illness, trauma, writing, personal stories, mental health, self-acceptance, authenticity, healing, Jess, trauma, meditation, wellness, medication, spirituality, empathy, chronic illness, travel tips, community, solitude Hosted on Acast. See acast.com/privacy for more information.

    Author Interview Maggie Bushway: Memoir writing, Advice for Parents, and the Joys of a Weighted Blanket

    Play Episode Listen Later Mar 3, 2025 36:25


    SummaryIn this conversation, Maggie Bushway shares her experiences as a child with brain cancer and the impact it had on her life, family, and friendships. She discusses the importance of autonomy in medical decisions, the role of writing in processing emotions, and the challenges of managing chronic illness while pursuing her passion for writing. The conversation also touches on the dynamics of friendship during illness, the journey of writing a memoir, and the balance between social life and work amidst health challenges.TakeawaysMaggie felt included in her medical decisions, which empowered her.Autonomy is crucial for children facing health challenges.Friendship can provide both support and normalcy during illness.Writing serves as a powerful tool for emotional expression.Reading her father's blog helped Maggie process her past.Maggie's early writing experiences laid the foundation for her memoir.Journaling can be a helpful starting point for aspiring writers.Managing chronic illness requires careful scheduling and prioritization.Finding humor in difficult situations can aid in coping.Creative expression can take many forms, including fiction. KeywordsMaggie Bushway, childhood illness, memoir, writing, chronic illness, friendship, family dynamics, emotional processing, creative expression, support Hosted on Acast. See acast.com/privacy for more information.

    Interview With Service Dog Trainer: Tara Moriarty

    Play Episode Listen Later Feb 3, 2025 45:00


    SummaryIn this conversation, Tara Moriarty discusses her journey into the world of service dogs, the challenges of finding and training them, and the importance of understanding their role in supporting individuals with disabilities. The discussion covers the costs associated with obtaining a service dog, the various training methods, and the misconceptions that the public holds about service dogs and their handlers. This conversation delves into the distinctions between service dogs and emotional support animals, emphasizing the legal definitions and roles of each. It explores the challenges faced by service dog owners, including the need for proper training and support systems. The discussion highlights the importance of planning for the future care of service dogs, especially for individuals with degenerative conditions. Additionally, it covers the process of finding the right dog and trainer, advocating for positive reinforcement training methods, and the significance of using food as a motivational tool in dog training.Chapters00:00 Introduction to Service Dogs and Their Importance03:13 The Cost and Accessibility of Service Dogs06:07 The Journey into Dog Training08:52 Understanding Dog Behavior and Training Methods12:06 The Need for Service Dogs: When is it Time?14:59 Choosing the Right Breed for Service Dogs17:45 Public Misconceptions About Service Dogs25:50 Understanding Service Dogs vs. Emotional Support Animals29:08 Navigating the Challenges of Service Dog Ownership31:55 Preparing for a Service Dog: Key Considerations34:22 Finding the Right Dog and Trainer38:53 The Importance of Positive Reinforcement in Training44:57 Innovative Training Techniques and ResourcesTakeawaysService dogs can be very expensive, ranging from $20,000 to $40,000.Nonprofits may offer lower-cost options, but availability is limited.Training a service dog can be a complex and costly process.Understanding dog behavior is crucial for effective training.Positive reinforcement is a more effective training method than punishment.Many people consider getting a service dog too late in their journey.The right breed for a service dog is less important than temperament.Labradors, Goldens, and Poodles are commonly recommended breeds.Public misconceptions about service dogs can lead to challenges for handlers.Emotional support is not a task that qualifies a dog as a service dog. Service dogs are task-trained to mitigate specific disabilities.Emotional support animals provide comfort but lack legal recognition as service animals.It's crucial to have a plan for the care of a service dog as health conditions change.Choosing the right breed is essential for first-time service dog owners.Positive reinforcement is key to effective dog training.Finding a qualified dog trainer can significantly impact training success.Service dog tasks are tailored to individual needs and circumstances.Proper training and socialization are vital for service dogs to function in public.Planning ahead for a service dog's future is necessary for responsible ownership.Using food as a reward can enhance training and strengthen the bond with your dog.Keywordsservice dogs, dog training, psychiatric service dogs, emotional support, dog behavior, training methods, cost of service dogs, choosing a service dog, public misconceptions, service dogs, emotional support animals, training, positive reinforcement, disability, dog ownership, service dog tasks, finding a trainer, dog breeds, service dog laws Hosted on Acast. See acast.com/privacy for more information.

    Tisha Foster: Glamour, Motherhood, Faith, and Chronic Illness

    Play Episode Listen Later Jan 9, 2025 53:13


    SummaryIn this conversation, Tisha shares her journey of living with chronic illness, emphasizing the importance of gratitude, community support, and the struggles of public perception. She discusses her experiences with autoimmune disorders, the challenges of diagnosis, and how she has reframed her relationship with her illness, focusing on empowerment rather than battle. In this conversation, the speaker shares their experiences of parenting with a disability, discussing the challenges of communicating their condition to their children and the emotional toll it takes on family dynamics. They explore the journey of finding purpose while being bedbound and the therapeutic process of writing a book about their experiences. The discussion emphasizes the importance of support systems, the need for understanding in educational settings, and the resilience required to navigate life with a disability.TakeawaysGratitude can be a powerful tool for coping with chronic illness.Public perception often overlooks the struggles of those with invisible illnesses.Community support plays a crucial role in mental health and resilience.The journey to diagnosis can be long and fraught with challenges.Reframing the narrative around illness can lead to empowerment.It's important to check in on loved ones, even those who seem happy.Sharing personal stories can help others feel less alone.Wearing heels can be a form of self-expression and empowerment.Language matters when discussing illness and identity.Writing can be a therapeutic way to share one's journey. Talking to children about disabilities requires different approaches based on their age.The emotional impact of a parent's illness can lead to complex family dynamics.Creating a game out of challenges can help children cope with difficult situations.Parents often feel guilt for not being able to participate in typical activities with their children.Support from family and friends is crucial when dealing with chronic illness.Living with a disability can lead to feelings of isolation and despair.Finding purpose and joy in life, even from bed, is possible.Writing about personal experiences can be a healing process.It's important to advocate for accessibility in schools and public spaces.Resilience and community support are key to thriving despite adversity.Keywordsgratitude, chronic illness, public perception, diagnosis journey, living with illness, mental health, autoimmune disorders, personal stories, resilience, community support, disability, parenting, mental health, communication, writing, resilience, family dynamics, bedbound life, emotional support, personal journey Hosted on Acast. See acast.com/privacy for more information.

    Musician Ann-Britt Celebrating New Music, Creativity and Chronic Illness, and Creating New Goals

    Play Episode Listen Later Oct 28, 2024 53:21


    SummaryIn this conversation, Monica Michelle and Ann-Britt discuss their shared experiences with chronic illness, particularly Ehlers-Danlos syndrome. They explore the challenges of living with a chronic condition, the importance of community support, and the therapeutic role of music in coping with illness. Ann-Britt shares her journey from being an active musician to adapting her life around her health challenges, including the use of a wheelchair. They also touch on the differences in healthcare systems between Denmark and the USA, emphasizing the need for better understanding and support for those with chronic illnesses. In this conversation, Monica Michelle and Ann-Britt discuss the challenges of traveling with a disability, the emotional journey of adapting to life changes due to chronic illness, and the importance of setting boundaries. They explore generational differences in self-care, the concept of diminished normalcy, and the emotional ties to home. Ann-Britt shares her musical inspirations and the themes of her upcoming album, highlighting the beauty in small moments and the power of creativity in the face of adversity.Keywordschronic illness, Ehlers-Danlos syndrome, mental health, creativity, music therapy, wheelchair use, healthcare systems, Denmark, USA, community support, chronic illness, accessibility, self-care, personal growth, music, life changes, boundaries, emotional health, travel experiences, generational differences Hosted on Acast. See acast.com/privacy for more information.

     Author of “Finding A New Normal: Living Your Best Life with Chronic Illness”: Suzan Jackson

    Play Episode Listen Later Sep 23, 2024 49:39


    Monica Michelle is joined by author Sue Jackson.Sue lives with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Lyme disease.In this episode, Monica and Sue discuss: Sue's pathway to diagnosis Parenting with chronic illness and parenting a child with chronic illnessManaging ME/CFS from diagnosis to creating routinesUsing books to cope emotionallyWriting a book while having chronic fatigueTIMESTAMPS00:46 Sue's diagnosis and how she manages her symptoms 13:03 Parenting with a chronic illness25:02 COVID-19's impact on chronic illness 30:35 Books as a form of escapism and connection42:00 The challenges of writing and the importance of routines with chronic illness The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Using Self-Portraits to Represent Chronic Pain

    Play Episode Listen Later Sep 4, 2024 60:29


    Monica Michelle is joined by artist Kyrianna Bolles.Kyrianna lives with chronic pain.In this episode, Monica and Kyrianna discuss: Kyrianna's struggle to be accommodated for her pain throughout school yearsHow Kyrianna uses her portraits to help represent other's chronic conditionsThe communities Kyrianna has built, from a college support group to an artist collectiveKyrianna's favorite tools for art and chronic painTIMESTAMPS00:00 Intro to Kyrianna 10:45 Kyrianna's self portraits 24:42 Kyrianna's Support group 33:40 Animus45:57 Kyriannas favorite support tools The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Dory's Corner: New Podcast intro with Host Nick Clemmons

    Play Episode Listen Later Aug 12, 2024 60:25


    Monica Michelle is interviewed by consultant and content creator Nick Clemmons. Nick recently started the blog Dory's Corner with Invisible Not Broken. A companion podcast hosted by Nick will be released soon.Nick lives with Sickle Cell Disease. Monica lives with Ehlers-Danlos Syndrome, POTS, MCAS, and Fibromyalgia.In this episode, Nick and Monica discuss:Monica's diagnostic history and her relationship with her disabilitiesHow Monica learned to advocate for herselfLack of media representation influencing abled people's perspectives of disabled folksHow Monica's family functions around disabilityTIMESTAMPS00:42 - Monica's history and relationship with her disabilities13:06 - How Monica found her voice *Trigger Warning: Mention of SA* 31:40 - Media representation45:09 - Monica's familyThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Disability Access in the Education System and How to Support Disabled Folks' Needs with Nick Clemmons

    Play Episode Listen Later May 5, 2024 54:05


    Monica Michelle is joined by consultant and podcast host Nick Clemmons.Nick lives with Sickle Cell Disease.In this episode, Monica and Nick discuss:The ways disabled folks are often forgotten in education infrastructureHow Nick navigates societal limitations to achieve his goalsDisability representation in the mediaKnowing how to realistically offer help to disabled folksTIMESTAMPS00:42 - ADA, Title IX, and disability access in schools20:08 - How Nick makes and achieves opportunities 28:40 - Media and disability40:42 - How to respectfully be concerned about someone else's needsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Vulnerability, Resiliency, and Advocacy with Tim Reitsma

    Play Episode Listen Later Apr 15, 2024 47:06


    Monica Michelle is joined by consultant and podcast host Tim Reitma.Tim lives with Crohn's Disease.In this episode, Monica and Tim discuss: Tim's resiliency through managing his Crohn'sThe importance of self-advocacy, especially in the workplace Tim's podcast why he shares stories of those with invisible illness TIMESTAMPS00:47 - Tim's diagnosis 06:31 - How and why Tim applies self advocacy15:41 - Why Tim started his podcast22:42 - Invisible condition etiquette31:00 - What HR can do better for employees with invisible illness39:31 - Tools Tim uses to care for his Crohn's outside the homeThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Tech and Disability: What VR Offers the Disabled Community with Sunny Ammerman

    Play Episode Listen Later Mar 19, 2024 70:27


    Monica Michelle is joined by artist and disability advocate Sunny AmmermanSunny lives with Septo-optic dysplasia, panhypopituitarism, Optic Nerve Hypoplasia, and is missing a membrane in the brain called the "septum pellucidum".In this episode, Monica and Sunny discuss: Sunny's complex disorders and how she copes with themEverything VR provides from accessible gaming, social platforms and the potential for better online education.Various VR/AR games and their gameplay Sunny's VR support groupTIMESTAMPS00:45 - What VR/AR offers for chronically ill and disabled folks11:57 - Sunny's conditions and how she copes with them17:55 - Features that make VR games accessible or inaccessible as well as different games and their play experiences37:13 - The social aspects of virtual gaming51:32 - What opportunities VR has for the future1:04:49 - Sunny's VR support group The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Reporting on Chronic Illness and Disability with Journalist Julia Metraux

    Play Episode Listen Later Feb 26, 2024 39:16


    Monica Michelle is joined by Journalist Julia Metraux.Julia lives with vasculitis, mild to moderate hearing loss, and has experienced long COVID.In this episode, Monica and Julia discuss: Julia's diagnosis with vasculitis and how it influences her journalistic lensHow community impacts the mental health of those with chronic illnessHow Julia and Monica find positives and negatives in the internet spaces for chronically ill and disabled folksThe politics of how government, businesses, and celebrities influence the chronic illness community TIMESTAMPS00:32 - Julia's diagnostic journey07:02 - Julia's work reporting on the online community of chronic illness 16:32 - The effect of Internet communities on chronically ill and disabled folks26:46 - How Julia's illness impacts her work, both in what she writes about and how she manages her lifestyleThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Author of “Pain: The Ultimate Mentor,” Physiotherapist Kevin Hunt

    Play Episode Listen Later Feb 5, 2024 31:29


    Monica Michelle is joined by author & physiotherapist Kevin Hunt.Kevin lives with chronic pain.In this episode, Monica and Kevin discuss: Kevin's philosophy of pain management as a physiotherapist who experiences chronic pain. The Hexagon Model, a life-management tool for focusing on what's important to you.Kevin's idea behind his new book.Using pain as a guide.TIMESTAMPS00:34 - Kevin's work as a physiotherapist specializing in the experience of pain 06:44 - The Hexagon Model for managing your life's needs14:00 - Putting aside the idea of a “quick fix”19:45 - Kevin's personal experience with pain and how he uses it with patients28:44 - Kevin's book, “Pain: The Ultimate Mentor”The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Author of “Through the Pain: The Silent Suffering & Triumph of a Personal Trainer”: John K. Frazier

    Play Episode Listen Later Jan 16, 2024 28:35


    Monica Michelle is joined by author & personal trainer John K. Frazier.John lives with ankylosing spondylitis.In this episode, Monica and John discuss: John's work as a physical trainer and authorChronic pain comparisonsPersonal triumphTIMESTAMPS00:50 - John's business & diagnosis07:19 - Chronic pain olympics09:31 - Talking about & hiding a diagnosis15:09 - Personal triumph18:24 - Staying in the present23:29 - The superman complexThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    The Creative Process, Self Worth, and Dating with Disability: Laura Mustard

    Play Episode Listen Later Jan 2, 2024 31:08


    Monica Michelle is joined by musician Laura Mustard.Laura lives with VATER syndrome.In this episode, Monica and Laura discuss: Laura's inspiration for her upcoming musical EP.How Laura's illness impacted her recent relationship & self-image.Laura's creative process, new music, and social media pressure.TIMESTAMPS00:30 - Laura's new EP / Monica's recent COVID experience05:32 - Relationships with chronic illness11:20 - Image and self acceptance with disability15:32 - Laura's creative process and current projects20:05 - Pursuing creativity despite social media attentionThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Author of “The Girlfriend's Guide to Lupus”: Amanda Chay

    Play Episode Listen Later Dec 19, 2023 30:43


    Monica Michelle is joined by author Amanda Chay.Amanda lives with Sjögren's and Lupus.In this episode, Monica and Amanda discuss: Amanda's book & diagnosisOutlooking on work & writingNavigating chronic illness with kids & familyTIMESTAMPS00:26 - Intro + The Girlfriend's Guide to Lupus02:17 - Amanda's diagnosis10:09 - Amanda's outlook on writing17:11 - Navigating chronic illness with kids & family23:29 - Labels and roles26:24 - Flare reads & closing remarksThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Author of “Compass Points the Way”: Alexis Kline

    Play Episode Listen Later Dec 4, 2023 23:14


    Monica Michelle is joined by author Alexis Kline.Alexis lives with Dysautonomia.In this episode, Monica and Alexis discuss: Being a sick teenagerHaving an isolated diagnosisProductivity workflowsTIMESTAMPS00:28 - Alexis's diagnosis & dog07:18 - Sick teenager road map10:00 - Alexis's book & workflow16:25 - Having an isolated diagnosis20:50 - Wildlife photography, purchases The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Author of “From the Sidelines to the Finish Line”: Emily Falcon

    Play Episode Listen Later Nov 20, 2023 36:47


    Monica Michelle is joined by author Emily Falcon.Emily lives with ALCAPA.In this episode, Monica and Emily discuss: Growing up sickPost-surgery supportHaving a public bodySelf-motivation and adventuringTIMESTAMPS00:28 - Being a sick kid & Emily's book title07:28 - Mortality10:16 - Portrayal of disability in media12:21 - Post-surgery support19:23 - Having a public body23:43 - Self-motivation29:46 - Emily's tips for adventuresThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    A 26-Year Search for the Right Diagnosis: Micaela Hoo

    Play Episode Listen Later Nov 7, 2023 35:19


    Monica Michelle is joined by writer and entrepreneur Micaela Hoo.Micaela lives with Lyme disease, bartonella, babesia, mold toxicity, parasite overgrowth, candida overgrowth, Hashimoto's disease, and Morgellons disease.In this episode, Monica and Micaela discuss: Micaela's diagnosis storyHealthcare insuranceTIMESTAMPS00:24 - The start of Micaela's diagnosis journey14:42 - Gastroparesis & Micaela's research16:52 - Healthcare insurance, wait times, and bad docs21:52 - Micaela's research pays off25:52 - Medical closure29:33 - Micaela's businessesThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Patience, Productivity, and the “Push Through Pain” Mindset: Rita White

    Play Episode Listen Later Oct 25, 2023 28:46


    Monica Michelle is joined by physical therapist Rita White.Rita lives with Ehlers-Danlos syndrome, Mast Cell Activation syndrome, and POTS.In this episode, Monica and Rita discuss: Rita's work as a physical therapistToxic productivity mentalityHappiness from self-understanding and patienceTIMESTAMPS00:38 - Rita's diagnosis and job04:58 - “pushing through the pain”14:10 - handling bad days & Rita's business19:28 - productivity and patience26:16 - favorite purchases under $100 & closing remarksThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Navigating Work, Relationships, and Parenting with Epilepsy: Sara Staggs

    Play Episode Listen Later Oct 2, 2023 32:09


    Monica Michelle is joined by author Sara Staggs.Sara lives with epilepsy.In this episode, Monica and Sara discuss: Being a full-time creative with a disabilityPregnancy & parentingDisability disclosureChronic illness in mediaTIMESTAMPS00:30 - Sara's writing process06:03 - Sara's diagnosis & college09:44 - Pregnancy & parenting13:37 - Disability disclosure in dating and parenting19:17 - Characters with chronic illness24:36 - Seizure first aid and life with epilepsy27:37 - Favorite purchases under $100The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com#epilepsy #epilepsyawareness #author #UncontrollableBook #SaraStaggs Hosted on Acast. See acast.com/privacy for more information.

    Talking TV, Reading, Happiness, and Parenting with Dione Bullard

    Play Episode Listen Later Sep 18, 2023 36:47


    Monica Michelle is once again joined by musician, chef, and activist Dione Bullard.Dione lives with End Stage Renal Disease.In this episode, Monica and Dione discuss: Favorite TV showsFavorite booksMoments of delightParentingTIMESTAMPS02:20 - Platonic11:42 - Somewhere Boy14:09 - More favorite shows21:38 - Favorite books26:17 - Appreciating moments of delight30:42 - Parenting through guided experienceSeries mentioned in this episodeAvailable on Apple TV+PlatonicSiloFoundationDickinsonAvailable on HuluSomewhere BoyThe Righteous GemstonesBewitchedAvailable on NetflixBridgertonGlamorousDAHMEROtherI Am a Virgo - Available on Prime VideoOur Flag Means Death - Available on (HBO) MaxThe Life and Times of Total Made GraceThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Adulting on Disability Income, Reflecting on Privilege and Prejudice: Cosmo

    Play Episode Listen Later Sep 4, 2023 38:12


    Monica Michelle is joined by activist Cosmo C.Cosmo lives with porphyria, Ehlers-Danlos syndrome, and fibromyalgia.In this episode, Monica and Cosmo discuss: PetsLARPingDisability income and surviving on itPrivilege and PrejudiceTIMESTAMPS00:33 - Cats and LARPing12:05 - Adulting on disability income22:01 - Privilege and prejudice31:19 - Deadlines, speech, and steroidsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Resilience & Self-Advocacy in Health, Music, and Culinary Arts: Dione Bullard

    Play Episode Listen Later Aug 22, 2023 41:42


    Monica Michelle is joined by musician, chef, and activist Dione Bullard.Dione lives with End Stage Renal Disease.In this episode, Monica and Dione discuss: End Stage Renal DiseaseSelf Advocacy as a PatientDion's Music & CookingTIMESTAMPS06:17 - Dion's diagnosis14:44 - Music career & food21:42 - Self advocacy26:05 - Disparities in care of dialysis centers31:27 - How to speak with healthcare professionals35:22 - Distilling down our purpose in life37:11 - Favorite apps and culinary toolsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Chronic Pain, Opioid Hysteria, and Tech Tools for Advocacy: Kim Luke

    Play Episode Listen Later Aug 7, 2023 41:50


    Monica Michelle is joined by activist Kim Luke.Kim lives with multilevel spondylosis, POTS, and fibromyalgia.In this episode, Monica and Kim discuss: Kim's storyPain clinic negligenceDisability tech & advocacyTIMESTAMPS00:51 - How Kim started10:54 - Kim's work16:03 - Pain clinic negligence19:33 - Healthcare in politics27:08 - Recommendations for teaching and advocacy31:47 - Disability Tech Business Idea36:04 - The flat effect40:12 - Pillows!The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Fighting for Disability in Law, in the Entertainment Industry, and in a Pandemic Society: Julia Irzyk

    Play Episode Listen Later Jul 17, 2023 35:32


    Monica Michelle is joined by lawyer, author, comedian, and activist Julia Irzyk.Julia lives with Lupus, Osteoarthritis, Degenerative Disk Disease, and Fibromyalgia.In this episode, Monica and Julia discuss: The state of COVID-19 in 2023Julia's new book, "Disabilities and the Law, 4th Edition"The entertainment industryAccess to pain medicationTIMESTAMPS00:56 - COVID-1909:10 - Masks in healthcare environments16:31 - Wheelchairs, flipping them, and HIPPA18:21 - Julia's new book23:03 - COVID-19 in the entertainment industry24:57 - Access to pain medicine33:26 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Charcot Marie Tooth Disease, Scoliosis, and Accessible Tech: Lisa Weiner

    Play Episode Listen Later Jul 3, 2023 33:35


    Monica Michelle is joined by activist Lisa Weiner.Lisa lives with Charcot Marie Tooth Disease and Scoliosis.In this episode, Monica and Lisa discuss: Growing up with CMT and ScoliosisDealing with bracesLiving and moving around San Francisco with a chronic illnessFinding community resourcesDiscovering simple tools that can help with daily activitiesTIMESTAMPS0:37 - What is Charcot Marie Tooth Disease?4:42 - Lisa's experience growing up with CMT19:07 - Braces are no fun24:47 - Center for Independence of Individuals with Disabilities20:30 - CMT Association Awareness Month31:55 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    EDS Author of Floppy - Tales of a Genetic Freak of Nature at the End of the World: Alyssa Graybeal

    Play Episode Listen Later Jun 20, 2023 40:28


    Monica Michelle is joined by award-winning author Alyssa Graybeal.Alyssa lives with Ehlers-Danlos Syndrome.In this episode, Monica and Alyssa discuss: Alyssa's new bookMonica and Alyssa discuss being a sick kid with creativityPacing your work in a hustle-driven cultureEmergency rooms & technologyThe benefits of talking about your storyTIMESTAMPS1:10 - Floppy – Tales of a Genetic Freak of Nature at the End of the World4:40 - Alyssa talks about being a creative sick kid8:21 - Pacing, hustle culture, and self-gaslighting14:25 - Building the confidence to come back home to your body16:55 - Finding your career20:02 - Alyssa's art space22:23 - Emergency rooms26:22 - Technology32:43 - The benefits of talking about your story36:55 - Alyssa's cats40:25 - Favorite booksThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

    Disabled Dungeons and Dragons NPC Cards & Miniatures: Dale Critchley

    Play Episode Listen Later May 15, 2023 40:57


    Monica Michelle is joined by Dale Critchley. They discuss his revolutionary Kickstarter campaign in making disabled D&D NPC Cards and Miniatures.Dale is hard of hearing and has ADHD.Limitless Champions Kickstarter CampaignTIMESTAMPS1:35 - Dale's Story Behind the Project11:40 - Developing the Various Types of Miniatures14:15- Representing Your Own Experience15:55 - The Importance of Representation17:26- Understanding Someone's World of Disability22:18 - Exposure and Lack Thereof25:50 - Connecting with People While Developing the Project29:52 - What's Bad about Pity36:00 - The Disabled/Villan Trope39:00 - Final ThoughtsThe full transcript is located on the episode page at invisiblenotbroken.com. Happy listening! Hosted on Acast. See acast.com/privacy for more information.

    Death with Dignity, the Right to Die: Kathryn Trueblood

    Play Episode Listen Later May 1, 2023 42:13


    Monica Michelle is joined by Kathryn Trueblood. Kathryn lives with Crohn's disease and Graves disease. In this episode, Monica and Kathryn discuss: John Abraham's when we decide how someone else should die we are playing godCompassion and ChoicesCovid end of life and choicesTIMESTAMPS1:11 - Kathryn and Caretaking 4:55 - Neurological Disease and Vsed6:22- Dealing with Differing Viewpoints9:34 - Nursing Home Care11:54- Emotional Support17:28 - Making Your Own Choice21:50 - Catholic-owned Hospitals29:24 - Resources for Grief41:00 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comThank you for listening. Hosted on Acast. See acast.com/privacy for more information.

    Why Robots Are Our Friends and Navigating the Work World with Visual Impairments, Panhypopituitarism, and Optic Nerve Hypoplasia: Sunshine Ammerman

    Play Episode Listen Later Apr 17, 2023 39:57


    Monica Michelle is joined by artist and activist, Sunshine Ammerman. Sunny lives with Septo-optic dysplasia, panhypopituitarism, Optic Nerve Hypoplasia, and is missing a membrane in the brain called the "septum pellucidum".In this episode, Monica and Sunny discuss: National Organization for Rare Disorders(Un)Well Netflix DocuseriesWorking a Physical Job with a Chronic IllnessApplying for DisabilityCreating ArtHow to Utilize Robots and GadgetsThe Wellness IndustryTIMESTAMPS0:46 - Working with NORD - the National Organization for Rare Disorders 3:28 - Sunny's Story and (very) rare disease8:45- Being an Artist with a Chronic Illness11:34 - Winning a Disability Case14:20- Keeping a Calendar + Utilizing Robots30:48 - Being “Inspiring”38:07 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    M.S., Mental Health, the Fitness Industry: Marnie Bothmer

    Play Episode Listen Later Apr 3, 2023 35:39


    Monica Michelle is joined by fitness coach, Marnie Bothmer. Marnie lives with multiple sclerosis (MS).Marnie's linksMarie's WebsiteMarnie's InstagramIn this episode, Monica and Marnie discuss:Being a Fitness Coach with a Chronic IllnessMarnie's Diagnosis StoryMedical BillsTrusting your own JudgementADHDGrowing Up ReligiousTIMESTAMPS2:10 - Marnie's Story 6:15 - Being a Fitness Coach with M.S.8:37- Living Inauthentically9:54 - Diagnosis Shock15:34- Healthcare and Finances20:08 - Navigating the Traumatic Medical World26:49 - Navigating the Pressure of Faith and Religion31:07 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Ethical Eating and Motherhood While Managing Chronic Pain: Allison Samon

    Play Episode Listen Later Mar 20, 2023 36:09


    Monica Michelle is joined by health coach and nutritionist, Allison Samon. Allison lives with unexplained chronic knee, back, and butt pain.Allison's linksInstagramFacebookAllison's WebsiteIn this episode, Monica and Sarah discuss:Pregnancy and MotherhoodEthical Eating + SustainabilitySuburban FarmingUniversal DesignTIMESTAMPS1:02 - Allison's Story 4:13 - Pregnancy + Motherhood15:10- Societal Expectations17:35 - Ethical Eating + CPG Brands21:02- Suburban Farms24:39 - Universal Design28:23 - Sustainability + Documentaries34:36 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Navigating Creativity with MCAD, Interstitial Cystitis, and Fibromyalgia: Sarah Bigham

    Play Episode Listen Later Mar 6, 2023 34:44


    *This episode was recorded back in 2020Monica Michelle is joined by artist and author, Sarah Bigham, who began writing about her experiences and painting, using dissolved medications and supplements as watercolors. Her creative endeavors are a distraction from the pain of several recent diagnoses and have been the silver lining of her medical journey.Sarah lives with:Mast Cell Activation SyndromeInterstitial CystitisVulvodyniaFibromyalgiaSarah's linksSarah's BookSarah's WebsiteIn this episode, Monica and Sarah discuss:Combating the medical and wellness worldAccess to more information online via news, social media, etcActivism and DisabilityTapping into creativity through writing and painting while disabledSelf-care as self-loveTIMESTAMPS01:00 - Sarah's Story5:39 - The Wellness Movement8:12- ‘Bad' Words13:59 - Social Media & the News: Pros and Cons19:03- Covid and Chronic Illness21:51 - Pandemic Upsides27:00 - Creativity and Chronic Illness32:26 - Self-care as Self-love33:40 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Accessible Travel and Disability Blogging: Carrie-Ann Lightley

    Play Episode Listen Later Feb 20, 2023 29:05


    *This episode was recorded back in 2020Monica Michelle is joined by Carrie-Ann, who runs an accessible travel blog sharing accessibility reviews, disability travel guides and wheelchair travel tips​.Carrie-Ann lives with:Cerebral PalsyCarrie-Ann's linksCarrie-Ann's WebsiteTwitterIn this episode, Monica and Carrie-Ann discuss:Traveling in and around Europe and the preservation of the historic architecturePlanning out a trip and researching the accessibility for the disabledVarious resources to use while planning a trip (including Google, Facebook groups, TripAdvisor)Experiences with air and train travel with a wheelchairFreeWheel wheelchair attachmentThe rewards of travelingTIMESTAMPS01:13 - Traveling in Barcelona and around Europe4:51 - Planning out a Trip8:03- Resources for Planning a Trip10:03 - Airline + Train Travel15:15- Places that are Extremely Difficult to Travel To17:00 - Shorter Trips21:05 - Building a Sanctuary at Home23:20 - Airbnb Experiences vs. Travel25:15 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Living your Authentic Self with Chronic Illness: Michelle Irving

    Play Episode Listen Later Feb 7, 2023 39:07


    Monica Michelle is joined by Michelle Irving, a mentor for women around the world teaching them how to create a life filled with love, meaningful work and deep personal power.Michelle lives with:Autoimmune Hepatitis (AIH)Migraine Associated Vertigo (MAV)In this episode, Michelle and Monica discuss:how to ask for help and supportbecoming and living your authentic self and how to respond to others as your authentic selfdating with a chronic illnessthe parallels between chronic illness and Persephone, of Queen of the UnderworldTimestamps01:02 - Michelle's Story7:52 - Asking for Help11:00- Becoming Vulnerable and Authentic16:10 - Responding to Advice from Others23:00- Queen of the Underworld27:20 - Building the Skills and Foundation to Live Your Truth30:15 - Dealing with the Death of Self33:30 - Dating with a Chronic Illness36:57 - Final ThoughtsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Raw Advocacy for Racial and Disabled Disparities: Tinu Abayomi-Paul

    Play Episode Listen Later Jan 23, 2023 50:49


    Monica Michelle is joined by disability activist and founder of Everywhere Accessible, Tinu Abayomi-Paul, creator of the popular hashtag #EverywhereAccessible. She is a survivor of Cancer and Chronic Pain, and she is a black woman. *This episode was recorded back in 2020 but is still very topical today. In this episode, Monica and Tinu discuss:Affirmative Action: The Guidelines address what appears to be a conflict between the statutory prohibition against considering race, sex, and national origin in making employment decisions, and the need, often through affirmative action, to eliminate discrimination and to correct the effects of prior discrimination. First Nation Missing Girls & Laws / Father of GynecologyAdviceBe clear, ask with an idea in mindHow to use and share your privilege to leverage helpHow do we give people the rodCompany ActivismColor BlindnessHow to amplify inclusion ridersWhat we can do to push the Black Voice forward: Create a day on the 13th to support Black artists, makers, and storytellers. On the 13th, companies should take the time to listen to their workers about what is needed within their companies.Use Your Local LibraryGetting Medical & Mental Help while BlackHow Tech Workers can helpA Day for Black money to Black artistsDisability Access and Political ActivismThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Navigating the Medical World as a Woman Living with a Mysterious Illness: Sarah Ramey

    Play Episode Listen Later Jan 9, 2023 49:08


    Monica Michelle is joined by author of The Lady's Handbook For Her Mysterious Illness, Sarah Ramey.Sarah Ramey lives with:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)Complex regional pain syndrome (CRPS) Postural orthostatic tachycardia syndrome (POTS)VulvodyniaMast cell activation syndrome (MCAS) *This episode was recorded back in 2020 but is very much still topical today. In this episode, Sarah Ramey and Monica discuss: being denied painkillersnon-traditional medicine and being forced to embody the female ‘warrior' archetypethe lack of empathy in the medical worldnavigating specific illnesses within a world of cancer and other leading illnessesbreaking the gender norms, emotional intelligence, and moreTIMESTAMPS01:53 - Sarah's Story8:17 - Being Denied Painkillers12:00- Forced into Becoming a Wellness “Warrior” with Non-Traditional Medicine17:00 - Feeling Bad for Your Symptoms19:00- Empathy in the Medical World23:13 - “WOMIS” - A Woman with a Mysterious Illness25:31 - Chronic Fatigue Syndrome within a World of Other Issues29:01 - Working From Home33:49 - David Bowie's Labyrinth and the Parallels 38:40 - Breaking the Gender Normative 48:06 - Final ThoughtsShow notes and the full transcript are located on the episode page. Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Sex Self Esteem and Body Awareness

    Play Episode Listen Later Dec 19, 2022 38:35


    Monica Michelle is joined by Dr. Phillips, award-winning psychotherapist and sex therapist. Dr. Phillips offers a safe, empathetic, and warm environment to help clients achieve their goals. Dr. Phillips has experience in treating LGBTQIA populations, depression, sexual challenges, anxiety disorders, trauma, bipolar disorder, substance use disorders, chronic pain, chronic illness, disabilities, and disease. As a dedicated psychotherapist, certified substance abuse counselor, and certified sex and couple's therapist, Dr. Phillips uses holistic approaches by treating the whole person and not just the symptoms. Clients who are in non-monogamous, swingers, polyamorous, and/or kink relationships are welcomed.This episode was recorded back in 2020 but is very much still topical today. In this episode, Dr. Phillips and Monica discuss: BDSM & coping with paindefining your sexualitygrief and chronic illnessredefining your pleasure zonesself-fulfillment and masturbationthe importance of therapycheck-ins with partners, and more.Timestamps, show notes, and the full transcript are located on the episode page. Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

    Disabled Tech Reviews: Best Car to Buy for Wheelchair Users

    Play Episode Listen Later Nov 7, 2022 18:01


    Note: This is my opinion only. I have Ehlers-Danlos, POTS, MCAD, and Fibromyalgia.If you just want a quick answer: Subaru Outback 2023Hi everyone!Welcome to the new series: Disabled Tech ReviewsThe list of “special” and “luxury” items are not so for those of us in chronic pain. I have a budget that for my personal sit-in gets laughed out of existence.The general list used to be:SafetyMPGEnough space for kidsA CD playerAh, the simple life that at the time I thought was untenable. Now with Ehlers dances so advanced I must at the very least have my power wheelchair available I have found sedans are just crossed off the list. They might have the ability with a master's thesis in Jenga to be able to fit the wheelchair but even if this was possible my cane will not fit as well in case I have a wild flight of optimism that I might be able to walk. Those of you in the know please feel free to roll your eyes or laugh the knowing laugh of those of us who will absolutely have the cause of death written optimism she knew better but thought she could anyway.Ok so even without the wheelchair I might have the body of a middle age woman but my ligaments are more that fossilized posits not you found at the bottom of a bag covered in debris. What I am saying is sedans are low to the ground. Getting in and out of them is my Everest.So sedans and sports cars are out. Minivans while intriguing do not have the space without a massive amount of engineering. Trucks! I LOVE trucks I have wanted one my entire life but the securing in the bed and walking around let's just say I was too worn out after a quick try to even think of driving. But the electric trucks have frunks! Ah yes, the frunk. I LOVE the lightning. The F150 is the car I dream of as I remember the boys in high school dreamed of having a Lamborghini, and for the cost, it is just as likely I will ever own one. If you can afford it please let me know how amazing it is as a wheelchair user. I promise no dark jealous thoughts will be cast your way only slightly simmering resentment.So an SUV it is. This should not have been limiting but let me give you my list if I am ever to consider driving:SafetySpace for wheelchair, child, canes, GIANT BEASTIE wolf, a small but active hamster disguised as a pug, and groceriesA door that opens wide enough I do not have to pivotBlind spot AI to help me stop if my leg seizes and lane departure warning. Basically, any safety feature that will save me if my body decides to just not (this is where luxury gets redefined. I have no issue paying extra for sunroofs, seat material, or sound systems. These are in fact LUXURY. Back in the day, Volvo invented a 3-point seat belt. It saves lives. They gave the plans away. For safety. The ability to survive should not be a luxury. This is my hill it has a pre-dug grave and a soap box I am not moving from it.)This started with plug-ins or PHEV there were 3 on the market I wanted none to exist in real life despite the company's best advertising efforts. Thank you all. We probably won't be on the cutting edge of any tech but we will do our best to review what we have to make our lives as autonomous as possible from kids care (fluff feather and human) to feeding yourself, to self-care apps, to VR, to the tech we use to run Invisible Not Broken. Please feel free to reach out.Head over to www.invisiblenotbroken.com for more podcasts and blogs about life while disabled.Remember to Be Kind. Be Gentle. And of course, be a Bad Ass. Hosted on Acast. See acast.com/privacy for more information.

    Interview With Social Security Disability Revealed: Why it's so hard to access benefits and what you can do about it. Author Spencer Bishins

    Play Episode Listen Later Aug 12, 2022 47:16


    Interview With Social Security Disability Why It Is So Hard to Access Benefits Author Spencer Bishins Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.

    Noah: Spina Bifida* Reading & Empathy* New House ADA* Airlines & Wheelchairs

    Play Episode Listen Later Jul 2, 2022 67:07


    Noah: Spina Bifida*Scifi Fantasy & Escape* Reading & Empathy* New House ADA* Airlines & Wheelchairs Noah and I chat about some of my favorite topics from airlines and wheelchairs* Dr Who and other sci fi shows and how they handle disability* Universal Design * School and disabled Access * Reading Fiction and Building EmpathyInvisible Not Broken is a chronic illness and disability podcast Invisible Not Broken with Monica MichellePlease share with friends and your community Subscribe to our newsletter and the podcastName*Noah MussayPronounshe/himWebsite and handles you want published*@NoahMussay (Twitter), @JulieWestEvents (Twitter I run for work)What is the name of your disorder, When did it present?Spina Bifida. It presented fairly early in my mom's pregnancy, so I was born with it. I also have Arnold Chiari Malformation, hydrocephalus, and scoliosis.What do you want people to know about your daily life?My daily life is relatively unextraordinary. I work. I play video games, I read, and I obsess over Big Brother and Doctor Who. My disability does affect my daily life, and I definitely worry about how I will deal with the struggles it presents when I'm on my own, but I genuinely like my life.What frightens you?I'm frightened by the fact that there are bigger hurdles that I have to face as a disabled person, and although I have a great support system, I sometims fear that I can't rely on myself for that support, and I don't have the benefit of hindsight to know that I can make it work on my own.What is your favorite purchase under $100Mobility aid: My grabber, which I use to grab things that fall or are too high. Less serious answer: Last summer, I purchased an audiobook, which is an in-depth analysis of Season 3 of Big Brother.Anything you want to cover or promote?I definitely think talking about my adoescence would be interesting. I was never an outgoing child, but I had friends in elementary school. Then, in fifth grade, I had a medical situation arise that made it, so I had to be pulled out of school for the rest of the year. When I got returned to school the following year, I felt different and closed off, and it became very hard for me to make friends, and I became a bit resentful that nobody seemed to want to be my friend. It made for a very isolating middle school through high school experience. See acast.com/privacy for privacy and opt-out information.

    A Conversation With Cosmo: Autism, Porphyria, Long Haul Covid, Media & Disability, & More

    Play Episode Listen Later Jun 11, 2022 98:32


    A FEW THINGS WE TALK ABOUT IN THE EPISODECONTENT WARNING: WE DISCUSS RIGHT TO DIE ON THIS EPISODE. IF YOU ARE ANYONE YOU KNOW NEED HELP PLEASE REACH OUT TO THE CALL THE NATIONAL SUICIDE PREVENTION LIFELINE1-800-273-8255ORTEXT GO TO 741741 TO REACH A TRAINED CRISIS COUNSELOR THROUGH CRISIS TEXT LINE, A GLOBAL NOT-FOR-PROFIT ORGANIZATION. FREE, 24/7, CONFIDENTIAL.NEURODIVERGENCE AUTISM AND ADDGAMING AND CHRONIC ILLNESSUS HEALTH POLICIES INHIBITED BY LEADERS IMAGINATIONS AND BOWING TO TEMPER TANTRUMSPROBLEMS WITH SOME DISABILITY GROUPS & NON PROFITSWHO CAN TELL WHO'S STORY COMEDY, CANCELLING, AND SERIOUSLY STEPHEN KING WHY WON'T MY BREATS POUT?SHARED HIGHSCHOOL TRAUMAWHAT ALL OF US STAY AT HOME DISABLED PEOPLE DO ALL DAYLONG COVID PATIENTS AND THE ADJUSTMENT PERIOD OF CHRONIC ILLNESSDISABILITY AND FRIENDSHIPSWHY HOLD MUSIC SHOULD BE BANNED FOR MENTAL HEALTH.Name*Cosmo CPronounsFey/FemWebsite and handles you want published*Twitter: @MaelstromMinded Twitch: @TheMaelstromMindWhat is the name of your disorder, When did it present?Acute Hepatic Porphyria (Variegate Porphyria, 14) Fibromyalgia (14) CPTSD (very young but unsure) Dissociative Identity Disorder (8-9, but realized it at 18) Endometriosis (13) PCOS (13) POTS (14) Autism and ADHD (Figured those out at 22 and 28) EDS (birth) I may have forgotten some See acast.com/privacy for privacy and opt-out information.

    Laura Mustard: VATER Syndrome Singing Through It COVID and Performance Art Disability and the Media

    Play Episode Listen Later May 23, 2022 59:53


    Invisible Not Broken is back with singer songwriter Laura Mustard!We talk art, writing, and music with chronic illness and disabilityCute Dogs Artists Supporting ArtistsDisability in the mediaWhy starving artist is a privilege issueRereading old journals the trauma and the content miningwww.lauramustard.com https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard https://twitter.com/mustardlaura @mustardlaura DISORDER INFORMATIONWhat is your disorder?VATER Association and Latex AllergyAt what age did your disorder present?Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over timeWhat was your life like before your disorder?It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy See acast.com/privacy for privacy and opt-out information.

    Roundtable - Setbacks and Chronic Illness with Jason and Monica

    Play Episode Listen Later Jun 2, 2021 48:25


    Monica (Explicitly Sick), Jason (Discomfort Zone) Jason from Discomfort Zone and Monica Michelle from Explicitly Sick have an open chat about what it is like to have a setback on your chronic illness protocol. Monica Michelle who has Ehlers Danlos had a setback this week while using the Ehlers Danlos Protocol, The Muldowney Method. Jason had a set back with a knee injury. They discuss frustrations and tools to get back. Redefine what success is. How Elizabeth Gilbert's book Big Magic applies to chronic illness and disability. Why Smart Crutches are the best. Whether to financially invest in one's setback with money, time, or effort._____PLEASE SHARE

    Roundtable - Ableism (Part 1) with Monica, Eva and Jason

    Play Episode Listen Later Apr 1, 2021 65:27


    Ableism comes in all shapes and sizes AND we experience it both internally and externally. Monica (Explicitly Sick), Eva (Humancare), and Jason (Discomfort Zone) talk about how they have experienced and dealt with ableism personally as well as give advice on what could work for others…plus other stuff around chronic illness and crap :pTRANSCRIPT HERE (it's not fab, but hopefully it does the job, sorry!)Finding the people that won't tell you you're crazyAll about mobility aids and our perceptions of them vs. the perception of othersgadgets that help us (ex: reMarkable tablet - not a paid promo, just love it!)“Do I deserve this?” - what we ask when we spend money on ourselvesGaslighting Travel adaptationsAbleism in healthcareEquitable vs. Fair (“everyone gets the same” vs. “everyone gets what’s needed”)3 last pieces of advice (1 hour in)“Taking care of yourself is not losing ground ex) if you decide you need a wheelchair, you are not taking a step back, you are not losing power. I wish someone told me that a decade ago” - Monica“Battle ableism first starts with how you receive things yourself. there is a lot you can do internally that will help you battle that in your outside world.” - Eva“Gaslighting is tough - especially with family and personal relationships. There are certain times when it can be really intense, and at times you need to give yourself distance from that person… it may be the right decision to cut them out of your life… [at the same time] it’s often people who are incredibly well-intentioned and good people…so take that into consideration.” - JasonStay tunes for Ableism - Part 2! (Which will include Dr. Lee)How have you experienced ableism - internally and externally? Let us know what works for you in our Facebook Group!**ALSO, BIG ANNOUNCEMENT!Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at contact@invisiblenotbroken.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence._____PLEASE SHARE

    Roundtable: Weathering the Storm with Monica and Jason

    Play Episode Listen Later Feb 25, 2021 59:29


    Chronic illness is a marathon and not a sprint! Monica (Explicitly Sick) and Jason (Discomfort Zone) talk about how they cope with chronic illness and other life bullshit:Finding the people that won't tell you you're crazyPets that both comfort and injure MonicaMeditating when you can't sit stillDenial! YES, denial is a perfectly legitimate coping response, and never let anyone tell you otherwise :)Do you have coping strategies that you'd like to share? Let us know what works for you in our Facebook Group!**ALSO, BIG ANNOUNCEMENT: Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at contact@invisiblenotbroken.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence._____PLEASE SHARE

    Announcement from HumanCare: Call for stories!

    Play Episode Listen Later Feb 15, 2021 4:34


    Hello Humancare community. I have a very special announcement. I am finally launching a new collaborative segment of the podcast, a project I've been dreaming of putting out there for years now, and it requires your participation to come to life: Humancare Stories. An awareness and conflict resolution project. The Humancare Stories segment will be a collection of anonymously contributed stories from listeners like you, about negative interactions experienced within the context of healthcare – whether that be an interaction with a patient, provider, loved one, or stranger. For example, submitted stories could be about a disheartening dialogue with a doctor, an offensive conversation with a romantic partner, or even an infuriating exchange with someone in a waiting room. Essentially any person-to-person interaction related to one’s health journey. After the submission of a story through voice recording, these stories are validated and dissected before being published on the Humancare podcast. (All submissions, will be reviewed although only a select few stories will be chosen to be published.) For those that are, these episodes will begin by playing the original recording of the story. Then as the host, I will analyze “what happened” from both a factual and experiential viewpoint. From there, I will present to you, the listeners, thought-provoking reflection questions paired with insights from a board of advocates, as well as tools and suggested resources – all of which aim to stimulate a potentially different way of looking at the story told that best serves both parties involved. The purpose is to be both supportive and proactive. It isn’t about choosing sides. It isn’t about being right or wrong.It’s about shedding the labels. It’s about removing the ego. It's about seeing one’s self as human, seeing that other person as human – as awful as the interaction may have been - and finding a common ground as two humans. I am looking to encourage listeners, like you, to adopt tools to mentally, emotionally and physically prepare you for similar situations in your lives going forward. I hope to provide you with alternative options in terms of actions and reactions so that you can feel a greater sense of control going forward. I believe that if we individually shift our approach to these often angering, upsetting, frustrating interactions, that we can collectively and collaboratively shift the broken relationship dynamics within healthcare as a whole. Again, it isn’t about choosing sides. It isn’t about blame or shame. No one wins in these interactions. No one. The way we approach these difficult conversations need to change.You know it. I know it. We all know it. At the end of the day, relationships in the context of healthcare are between two humans just like any relationship. And that’s ultimately the purpose of this project: to humanize healthcare first through humanizing our stories.If you are open to sharing your story with the community, text “I want to share my story” to 585-484-0232. From there I will send you the submission requirements. While I will need to be in contact with you to receive your recording, all stories will be published anonymously. Thanks again for being supporters of the Humancare podcast and our mission to humanize healthcare. See acast.com/privacy for privacy and opt-out information.

    Roundtable – 2020 in Review (WTF): with Monica, Eva, Jason and Dr. Lee

    Play Episode Listen Later Jan 30, 2021 73:21


    2020 IN REVIEW (WTF)Eva (HUMANCARE), Monica (EXPLICITLY SICK), Jason (DISCOMFORT ZONE) and Dr. Lee (SEX & CHRONIC ILLNESS) digest the good, the bad and the super f*ing ugly, upsetting "wtf" moments of 2020...but not without some positive flair!We also talk about silver linings, learnings and what's to come in 2021! ____JOIN OUR FACEBOOK GROUP, YA’LL! WE’RE A HOOT :P_____PLEASE SHARE

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