Arthritis Life

Episode 102 - What’s it Like to Live and Work with Axial Spondyloarthritis? Stella Levy’s Story

Episode Summary

Stella shares her journey of being diagnosed with axial spondyloarthritis at 15 years old, navigating various treatments, and other experiences while living with this chronic rheumatic condition. Stella and Cheryl discuss the complex dynamics of relationships, including with friends who may not fully understand the daily struggles and with medical professionals who sometimes overlook aspects of mental and emotional well-being. Stella reflects on the practical benefits of using mobility aids to maintain daily routines, and opens up about the discomfort of self-consciousness that initially came along with this. Cheryl and Stella delve into the concept of how adaptive equipment also serve as a visible identifier for others to acknowledge otherwise “invisible” conditions. They emphasize the necessity of advocating for oneself, seeking alternative treatment options when indicated, and embracing accommodations and aids when they improve one’s quality of life. They highlight the importance of self-acceptance and prioritizing health, as well as the influence of societal expectations and rights for workplace accommodations. Their conversation underscores the significance of having support networks, such as online in a Rheum to THRIVE group with individuals facing similar challenges as a source of empathy and empowerment. It is possible to experience joy in life despite the limitations of chronic illness, especially with a community that can support you in your own journey.

Episode Notes

Episode at a glance:

• Navigating Diagnosis and Treatment: Stella shares her journey of being diagnosed with axial spondyloarthritis at a young age and the challenges of finding effective treatments. Cheryl emphasizes the importance of advocating for oneself and seeking alternatives if a treatment is not the right fit.
• Using Mobility Aids and Devices: Stella and Cheryl discuss the use of mobility aids to help manage the impact that symptoms have on daily life. Stella highlights how using a cane helped her receive better care and awareness, while Cheryl mentions the benefit of finding tools that reduce the impact on joints and make tasks easier.
• Reclaiming Identity and Self-Expression: Personalizing mobility aids and turning them into accessories can help them feel more comfortable and reduce the stigma associated with them.
• Internalized Ableism: Their conversation brings up the topic of internalized ableism and emphasizes the importance of challenging these perceptions.
• Self-Advocacy and Communication: Stella and Cheryl discuss the necessity for advocacy when interacting with healthcare professionals. They encourage being thorough about symptoms, side effects, and concerns. Additionally, they recommend taking notes, bringing a friend or support person, and having a list of questions ready during appointments.
• Knowing Your Rights and Accommodations: Stella talks about obtaining a letter from her doctor to protect her rights in the workplace. Knowing legal protections for people with disabilities can be essential in navigating work environments and seeking proper accommodations.
• Finding joy despite limitations: Despite the challenges of chronic illness, Stella and Cheryl emphasize the importance of seeking joy, pursuing passions, and participating in activities that bring happiness, including using adaptations and coping strategies when needed.
• Community and Support: Stella and Cheryl discuss the value of being involved in a supportive community, such as Rheum to THRIVE where individuals with chronic illnesses can share experiences, insights, and mutual understanding.

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!

For full episode details including a transcript and video:

See the episode page on the Arthritis Life website.