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

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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

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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

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