Arthritis Life19 Jun 2025

Advocacy, Humor and Purpose: Seth’s Spondyloarthritis Story

Seth discusses the challenges and lessons learned from his condition, emphasizing the importance of self-advocacy and humor as coping mechanisms. He also reflects on the 25-year journey of Creaky Joints, which began as a simple idea to connect arthritis sufferers and has grown into a significant patient advocacy and support organization.

Cheryl and Seth also discuss the importance of patient voices in research and healthcare policy, the role of advocacy in improving healthcare systems, and the power of community and proper information. This episode highlights the power of advocacy, sharing our stories and remembering you are not alone in your arthritis journey!

Episode at a glance:

Seth’s Diagnosis Journey: Seth shares his early diagnosis at age 13 with Spondyloarthropathy and how it shaped his perspective.
Creaky Joints and Global Healthy Living Foundation Origins: How a simple idea to connect arthritis patients evolved into a major advocacy and support organization over 25 years.
Coping Strategies: Cheryl and Seth bond over the value of self-advocacy, humor, and mindset in managing chronic illness.
Patient Empowerment and Advocacy: Why patient voices matter in research, healthcare systems, and policy-making.
The Power of Community: Cheryl and Seth discuss how connection and reliable information support well-being.

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!

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Denne episoden er hentet fra en åpen RSS-feed og er ikke publisert av Podme. Den kan derfor inneholde annonser.

Episoder(224)

Living Well with Ankylosing Spondylitis: Lauren’s Journey from Patient to Occupational Therapist

Lauren shares practical insights on adapting meaningful activities (including caring for and training dogs!), conserving energy, finding realistic hope, and building a life around what matters to you....

24 Sep 30min

The Power of Community: 5 Real Patients Share Their Stories

Cheryl, Marisa, Alice, Gittel, Meg and Annette reflect on the profound impact of community, the invaluable educational components of the Rheum to THRIVE program, and the collective wisdom that has hel...

10 Sep 40min

Rheumer Has It: Axial Spondyloarthritis Myths v. Facts with Dr. Jean Liew

In this encore episode, Dr. Liew shares her personal journey to becoming a rheumatologist inspired by a friend's diagnosis. She then discusses the condition in detail, addressing common misconception...

27 Aug 17min

Real Life with Juvenile Arthritis: Three Kids Tell Their Stories

Along the way, they talk about the comfort of pets, the importance of finding friends who truly understand, why kids with invisible illnesses deserve to be believed, and the hope they've found through...

13 Aug 34min

Rheumer Has It: Romantic Relationships & Arthritis

Drawing from their own lived experiences, they discuss everything from when to disclose a diagnosis while dating to navigating rejection, communicating with partners, managing physical intimacy, and r...

30 Jul 36min

Can You Live A Normal Life with Rheumatoid Arthritis? (2026 Reflection + Encore Episode)

In this updated introduction, I share how my response to this question has changed, the importance of exploring internalized ableism, and why I think a better question is: Can I build a joyful, meanin...

16 Jul 54min

Rheumer Has It: Busting Medication Myths with Dr. Hazelwood: Encore Episode

Dr. Hazelwood emphasizes the importance of balancing risks and benefits and provides insights into how modern treatments can significantly improve quality of life. The episode emphasizes the safety an...

2 Jul 24min

Becoming Immune Confident with Sjogren’s & MCAS, with Dr. Kara Wada

In this empowering conversation, Cheryl and Dr. Kara Wada explore what it means to take charge of your health with conditions like Sjögren’s syndrome and mast cell activation syndrome (MCAS). Dr Kara...

18 Jun 1h 7min