Can you Live a Normal Life with Rheumatoid Arthritis?

Mar 27, 2021

Ask episode

Chapters

Transcript

Episode notes

In this episode Cheryl explains how Acceptance and Commitment Therapy (ACT) has been key for her to build a life she loves despite chronic illnesses. She also shares how she’s found a balance between ways to minimize pain and ways to live a good life despite pain. Additionally she urges listeners to ask, “Can I live a good life despite rheumatoid arthritis?” rather than “Can I live a normal life with rheumatoid arthritis?”

Speaker bio:

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 she say) FUN patient education and self-management resources.

Links to things discussed in the podcast episode:

Rheum to THRIVE membership - sign up today (registration closes on March 31)!
Articles mentioned in this episode:
- Summary of research article: “Rheumatoid arthritis: 80% of sufferers can now live a “normal” life
- JAMA article: Diagnosis and Management of Rheumatoid Arthritis: A Review
- Marcel the Shell with Shoes on (“Compared to what?”)
- Russ Harris: The Happiness Trap
- Acceptance and Commitment Therapy info page
- 8 Lessons Learned Postpartum - my blog post from 2014
- 10 years with RA - what’s the impact? - blog post from 2013
Cheryl’s Arthritis Life freebies:
- Free Handout: Cheryl’s Master Checklist for Managing RA
- Free Training: Arthritis Life Hack Crash Course
Cheryl’s Arthritis Life social media pages:
- Cheryl on Instagram
- Cheryl’s website: Arthritis Life
- Cheryl’s Tiktok: @ArthritisLife
- Arthritis Life Facebook Page
- Cheryl’s Twitter: @realcc
Free Facebook group to discuss the podcast and connect further with others: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support

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.

Show notes:

1:20 - Why I chose this topic for today’s episode.
3:00 - Does “normal” mean lack of severe joint damage? Research study showed 80% of people with rheumatoid arthritis can live a “normal life.”
5:00 - What is your definition of normal - compared to what?
7:00 Is a “normal life” the exact life I imagined for myself pre-diagnosis?
7:55 - Is a “normal life” one where I can experience things that are important and achieve meaningful goals and life experiences?
10:05 - Can you live a normal life with RA? It depends on what your definition is, and what your hopes and dreams are underneath your concept of normal.
10:35: You may not get the normal you wanted or expected, but can you find a NEW normal you can learn to love?
12:40 - There is no guarantee for anyone of a pain free life. Confronting that reality head on can free us from pressure and energy to try to achieve a perfectly pain free life, which is impossible for most.
15:00 - How my therapists taught me the futility of trying to avoid pain and anxiety.
15:45: “The hope is that you can still live a good life despite inevitable pain and suffering, that’s the hope, the hope isn’t that you can avoid it, because avoidance is not a long term sustainable strategy .”
16:00 - We can and should gather evidence based tools to manage and minimize our pain and function on a daily basis, however: “If we ONLY focus on the tools to MINIMIZE pain, the problem can be the expectation or belief that we attach to the idea that if we JUST have the right tools we are going to 100% be guaranteed to avoid all pain, and I do wish that were true, but realistically it’s just not true for most people because, pain, physical or mental, is an inevitable part of the human experience.”
17:15 - Difference between pain and suffering.
17:55 - I was dragged “kicking and screaming” into acceptance. If you are confused, you’re not alone!
18:45: True acceptance of the PRESENT moment is completely different than giving up or resignation.
20:10 - When we’ve done everything we can to reduce pain, instead of struggling with that, we can focus on: what can we still do in the present moment? What can I still DO that ’s important or valuable to me, DESPITE the pain? I eventually learned to let go of the illusion that if I just do the RIGHT THING I could ALWAYS avoid pain, and once I let go, I was set free.
21:30 - Balancing act between plan A (using tools to minimize symptoms) and plan B (tools to “workaround” symptoms and function despite them).
22:20 - We spend a lot of time running away from pain and running away from our disease, but what if we spent more time running TOWARDS things we can still do that are valuable?
23:05 - What I dislike about a “normal” life being defined as one without disease - feels ableist to me
24:15 - My old optimism: if I just find the right solution my pain will go away, RA will have no affect on my life. New optimism: me and people with it can still live rich, meaningful lives DESPITE discomfort.
27:15 - My new mission: finding a balance between controlling symptoms/minimizing symptoms *and* focusing on maximizing our quality of life despite it.
27:30 - Why I developed Rheum to THRIVE membership community and what it stands for.
28:45 - So many people get stuck in this mentality that they have to WAIT until their symptoms are fully controlled before attempting to thrive or live a full life, and I really encourage you to see what is still possible in your life. What can you still do and enjoy and accomplish despite your condition?
29:25: Can you live a normal life with RA? Depends on your definition of normal!
29:45 - The question I like to ask more than “can I live a normal life with RA:” Can I live a GOOD life with RA? Can I be of service to others, can I leave the world better when I leave it than when I found it? I think YES.