Arthritis Life

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

Episode Summary

In this episode, Carrie shares her inspiring journey of living with “difficult-to-treat” axial spondyloarthritis while building a new life in Taiwan after growing up in Canada. She opens up about her struggles with treatment-resistant symptoms, her experiences trying various medications, and how these challenges motivated her to create My Several Worlds, a blog dedicated to patient advocacy. Carrie has also collaborated with nonprofits to help others become empowered self-advocates.

Episode Notes

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:

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!