Summary

In 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.

Takeaways

Gratitude 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.

Keywords

gratitude, 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.

Summary

In 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.

Keywords

chronic 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.

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 illness
• Managing ME/CFS from diagnosis to creating routines
• Using books to cope emotionally
• Writing a book while having chronic fatigue

00:46 Sue’s diagnosis and how she manages her symptoms  

13:03 Parenting with a chronic illness

25:02 COVID-19’s impact on chronic illness 

30:35 Books as a form of escapism and connection

42:00 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.

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 years
• How Kyrianna uses her portraits to help represent other’s chronic conditions
• The communities Kyrianna has built, from a college support group to an artist collective
• Kyrianna’s favorite tools for art and chronic pain

00:00 Intro to Kyrianna 

10:45 Kyrianna’s self portraits 

24:42 Kyrianna’s Support group 

33:40 Animus

45:57 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.

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 disabilities
• How Monica learned to advocate for herself
• Lack of media representation influencing abled people’s perspectives of disabled folks
• How Monica’s family functions around disability

00:42 - Monica’s history and relationship with her disabilities

13:06 - How Monica found her voice *Trigger Warning: Mention of SA* 

31:40 - Media representation

45:09 - Monica’s family

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.

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 infrastructure
• How Nick navigates societal limitations to achieve his goals
• Disability representation in the media
• Knowing how to realistically offer help to disabled folks

00:42 - ADA, Title IX, and disability access in schools

20:08 - How Nick makes and achieves opportunities 

28:40 - Media and disability

40:42 - How to respectfully be concerned about someone else’s needs

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.

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’s
• The importance of self-advocacy, especially in the workplace 
• Tim’s podcast why he shares stories of those with invisible illness 

00:47 - Tim's diagnosis 

06:31 - How and why Tim applies self advocacy

15:41 - Why Tim started his podcast

22:42 - Invisible condition etiquette

31:00 - What HR can do better for employees with invisible illness

39:31 - Tools Tim uses to care for his Crohn’s outside the home

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.

Monica Michelle is joined by artist and disability advocate Sunny 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: 

• Sunny’s complex disorders and how she copes with them
• Everything 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 group

00:45 - What VR/AR offers for chronically ill and disabled folks

11:57 - Sunny’s conditions and how she copes with them

17:55 - Features that make VR games accessible or inaccessible as well as different games and their play experiences

37:13 - The social aspects of virtual gaming

51:32 - What opportunities VR has for the future

1:04:49 - 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.

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 lens
• How community impacts the mental health of those with chronic illness
• How Julia and Monica find positives and negatives in the internet spaces for chronically ill and disabled folks
• The politics of how government, businesses, and celebrities influence the chronic illness community 

00:32 - Julia's diagnostic journey

07:02 - Julia’s work reporting on the online community of chronic illness 

16:32 - The effect of Internet communities on chronically ill and disabled folks

26:46 - How Julia’s illness impacts her work, both in what she writes about and how she manages her lifestyle

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.

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.

00:34 - Kevin’s work as a physiotherapist specializing in the experience of pain 

06:44 - The Hexagon Model for managing your life’s needs

14:00 - Putting aside the idea of a “quick fix”

19:45 - Kevin’s personal experience with pain and how he uses it with patients

28:44 - 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.