Arthritis Life

After discovering that episode 14 is the most downloaded of all my Arthritis Life Podcast episodes, I decided to release it with some additional insights from my perspective now. I also provide some updates after facilitating support groups for over 250 people in the last three years.

This episode includes a deep dive into how rheumatoid arthritis affects more than just joints – it affects people’s whole bodies, and whole lives. I reflect on the five things I wish I had known when I was first diagnosed, way back in 2003. I hope that these reflections help you feel less alone and more grounded as you try to manage the best life possible with inflammatory arthritis!

Episode at a glance:

• #1 – Rheumatoid Arthritis affects more than just joints.
• #2 – RA affects your social life in difficult ways (such as misconceptions) and positive ways (such as connections with a chronic illness community)
• Tips for using websites and social in productive ways
• #3 – Gray areas are the norm for autoimmune disease
• #4 – Living with chronic illness will affect your mental health.
• Cheryl’s experience with allowing herself to grieve her health
• Medical gaslighting.
• #5 – Managing RA is a job but you can learn how to do it!

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:

Go to the episode page on the Arthritis Life website.

Emily explains what post-exertional malaise is, and highlights the challenges associated with diagnosing and managing ME/CFS. Emily emphasizes the need for personalized care and the critical role of patients in advocating for their own health. This conversation underscores the significance of creating strong support networks for people living with ME/CFS, as well as the broader chronic illness community. They also highlight the value of sharing personal stories to raise awareness and bring about policy changes.

Episode at a glance:

• Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness.
• Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.
• Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource.
• Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.
• Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.

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!

Speaker Bios:

Emily Taylor

Vice President of Advocacy and Engagement at Solve ME, Emily brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years’ experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies.

She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

For full episode details including a detailed transcript and video:

Coming soon on the Arthritis Life Website.

Cheryl and Brianna discuss the challenges and the benefits of sharing your chronic illness story publicly on social media, including how they deal with both positive and negative feedback from a growing audience. They also discuss the positive impact of finding support and inspiration online.

Brianna shares her involvement with the Arthritis Foundation and the Lupus Foundation, highlighting the importance of giving back and helping others in the community.

The role of support groups, camps, and patient advocacy organizations in providing a sense of community and connection for individuals living with chronic diseases is highlighted. Cheryl and Brianna also discuss the value of adapting and accepting one's condition to live a fulfilling life. Finally, they emphasize the importance of acceptance and adaptation in thriving with rheumatic diseases.

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 video and transcript

Go to the episode page on the Arthritis Life website for full details!

This is a follow up to episode 45: “What’s it like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis?” Paulina, Jenny, Ali, and Ananthi share what’s changed and what has stayed the same with their medications, including whether they’re still on methotrexate. They also reflect on how they’ve navigated the ups and downs of chronic illness life and share how grief and joy can co-exist. They also highlight the importance of finding a supportive community with shared experiences. They also discuss their choices around how much to share on social media about their experiences.

Paulina, Jenny, Ali, and Ananthi each share wisdom that has guided them along this nonlinear journey; encouraging self-care, advocating, celebrating small victories, and approaching life one day at a time. They conclude with a discussion about how to balance acceptance and adapting with a “fixing” mindset.

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:

Go to the episode page on the Arthritis Life website.

In this episode, Maggie shares valuable insights from life with axial spondyloarthritis, sjogren’s, osteoarthritis, hypermobility, migraine, and POTS. She also shares her treatment journey which she divides into a “discovery phase, treatment phase, and tinkering phase.”

Maggie and Cheryl discuss practical advice for managing multiple chronic illnesses, including the importance of social support and finding joy in daily experiences. They also discuss their best coping skills for times when managing your health feels like “orchestrating a circus.” Ultimately, Maggie and Cheryl discuss the importance of savoring life's moments and adapting to new ways of living, rather than trying solely to return to a pre-illness lifestyle.

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 video and transcript:

Go to the episode page on the Arthritis Life Website.