Art, Advocacy, and Adaptation: Carrie’s Journey with Difficult to Treat Axial Spondyloarthritis

She discusses how she’s learned to adapt to life’s changes, uncover tools to improve her quality of life, and embrace creativity as a way to thrive. For instance, she shares how her power wheelchair allows her to explore her surroundings while conserving energy, and how her Spoonie Coloring Book brings joy and meaning to her daily life through art.

Carrie and Cheryl also dive into topics like self-acceptance, disability representation in media, and the role storytelling plays in processing challenges. With humor and vulnerability, they reflect on what it means to live a fulfilling life despite chronic illness, offering encouragement and inspiration for anyone newly diagnosed.

This episode is a heartfelt reminder that, while the journey may not go as planned, it can still be meaningful and empowering.

Episode at a glance:

• Carrie's Diagnosis and Treatment Journey
• The Power of Acceptance: Balancing grief for what’s lost with hope for what’s possible and finding empowerment in small, daily actions that improve quality of life.
• Life on Wheels: Carrie shares how her power wheelchair helps her conserve energy and enables her to explore her environment in ways she wouldn’t if she had to walk.
• The Importance of Art and Creativity: Living with rheumatic disease and adapting to life's changes and embracing creativity, such as publishing a coloring book for spoonies, as a means to thrive.
• Books, Media, and Disability Representation: Discussion of favorite authors, including Jenny Lawson and Lisa See, and their openness about health challenges; highlighting the importance of disability representation in books, movies, and other media.
• Encouragement for Thriving with Arthritis: "Keep on going" mindset and recognizing the value of being present and finding meaning in the life you have.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!

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