The Worst Good News: What to do when Test Results are Normal but you Feel Awful? Joel Nelson's Story.

Topics include:

• Joel shares what it was like to grow up with juvenile idiopathic arthritis
• Joel explores the vulnerability of doctor patient interactions and the concern chronic illness patients often have of being perceived as hypochondriacs.
• Joel and Cheryl discuss the imperfections of our current health systems, and the fact that “No Established Cause doesn’t mean No Problem.”
• A group Pain Management program helps Joel rewire how he thinks about pain
• Cheryl & Joel share tips and exercises for mental wellbeing despite chronic illness

Speaker Bios:

Joel Nelson: Writer. Arthritis Advocate. Dad. Sharing my story of Juvenile Idiopathic Arthritis to raise awareness. Specialising in pain, parenting and mental health. Also writes for leading charities and organisations.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.

This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.

Episode links:

• Joel links:
  • Blog: https://joelvsarthritis.co.uk/
  • Joel’s Facebook: https://www.facebook.com/joelvsarthritis.
  • Joe’s Twitter: https://www.twitter.com/joelvsarthritis.
  • Joe’s Instagram: https://www.instagram.com/joelvsarthritis.
  • Joel’s Youtube Channel: https://www.youtube.com/channel/UCZrEJm2eWSSpXx8qMTjdgWA?view_as=subscriber
• Books and resources
  • The Happiness Trap book explaining Acceptance and Commitment Therapy concepts
  • Versus Arthritis nonprofit with helpful resources
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 
  • Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.
• Cheryl’s Arthritis Life social media pages:
  • Cheryl &  Arthritis Life on Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife 
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc 
  • Arthritis Life Youtube channel

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.

Here's the show breakdown:

1:00 - Introduction and Joel’s diagnosis story.

3:00-11:30 - Joel reads from his blog post, “No established cause doesn’t mean no problem.”

11:45 - Cheryl & Joel discuss the vulnerability of seeing new specialist doctors. Joel expands on his experiences with the neurologist who had not reviewed his medical chart.

15:15 - Cheryl & Joel discuss being worried about being perceived as a hypochondriac, and the challenges of filtering what information you share with a doctor / medical provider.

22:45 - Joel expands on his emotional response to the test results letter he received from the neurologist with his test results.  Cheryl & Joel discuss the imperfections of our current health system.

28:00 - Cheryl expands on how patients who have difficulty functioning in daily life deserve access to care, for example occupational therapy, even if there is “no known cause.”

30:00 - Joel explains what his GP (primary care) said after his neurological test results were normal. He went through pain management therapy which included disability adjustment training. He made a conscious choice to put his energy into adapting to it and making peace with it, yet continues living in fear that a neurological episode will happen again. 

35:30 - Joel talks about his Pain Management program, which included group therapy, individual therapy, occupational therapy, physical therapy, learning about pain and special wellbeing topics. It helps him “rewire how he thought.” 

40:00 -  Cheryl’s perspective about finding a balance between trying to heal or eliminate pain, and building our capacity to adapt to our life as it is, even including pain.

42:30 - Joel describes a helpful exercise from his pain management program: writing down the biggest issues with your current situation and recognizing that pain wasn’t necessarily the biggest problem, it was partly the spiraling thoughts around it. 

46:30 - Cheryl’s analogy for positive versus negative thoughts - like a radio station you can choose to fight them, try to constantly turn them up or down or drown them out, or we can just acknowledge that they are simply there, sometimes they’re helpful, sometimes not and I can continue going where I want to go despite them. 

48:00 - Joel’s realization that he might not be able to turn “off” the negative thoughts, but he can let them have less power over him. Example of his work as an IT manager and how he struggles with guilt when he takes time off.  

51:30 - Cheryl and Joel reflect on how having to say no and take sick days challenges your sense of self. Discuss the challenges of activity pacing when you are a parent.

55:00- Concluding thoughts - link between physical and mental health. Don’t be afraid to ask your medical providers questions and be involved with decision making.