Arthritis Life

Episode at a glanceIntroduction & definition of terms:What is stress, pain versus suffering, statistics on mental health and arthritis, common causes of stress with chronic illness (1:30 - 12:00)Cognitive behavior therapy for “thinking problems”:How “Catching ANTs” is a helpful tool for “thinking problems” (when your stress is caused by maladaptive thinking patterns) (12:30 - 20:45 )Mindfulness & “perpetual problems”Cheryl explains how true mindfulness of the present moment (even uncomfortable parts of the present) can help cope with perpetual problems from chronic illness (21:45 - 27:10).Acceptance and Commitment Therapy (ACT)Cheryl explains how acceptance and commitment therapy helps her devote energy towards present possibilities rather than wasting time trying to solve unsolvable problems (which can lead to unnecessary stress). (27:10 -43:00)Concluding thoughts: 43:00-endSometimes there is not a clear way to make your pain go away, no effective tool to “heal” your condition, and no way to convince someone else that  your invisible illness is real.While that might sound depressing at first, Cheryl explains that accepting this reality helped set her free (“The truth will set you free, but first it will piss you off” - Gloria Steinem). She explains how she learned this technique from #acceptanceandcommitmenttherapy. Speaker Bios:Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She’s passionate about helping others with rheumatoid arthritis live a full life, by using effective tools to manage 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.Episode SponsorThis episode is brought to you by Rheum to THRIVE, a 6 month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.  Join the waitlist today for the next group which starts in early October, 2021!Episode links:Sign up to access the video recording of this webinar (which includes the visuals I refer to)Reproductive Health and Rheumatic Disease Webinar:Cheryl will be moderating a free “Reproductive Health and Rheumatic Disease” patient webinar on September 14th 2021, sign up here http://www.rheum4you.org and learn more here https://simpletasks.org/Things mentioned in the episode:Find a therapist in the US - Psychology TodayCBT - resources for learning about common cognitive distortionsJohn Gottman marriage research: solvable versus perpetual problemsThe Happiness Trap by Dr. Russ Harris - explains Acceptance and Commitment TherapyPassengers on the bus metaphor - more detailsCheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelArthritis Life Program LinksJoin 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.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 at a glanceArt and arthritis: Maria shares how she participates in artistic hobbies like photography and artwork despite hand pain from rheumatoid arthritisDiagnosis journey: Maria’s diagnosis journey with rheumatoid arthritis in Venezuela and her emotional reaction to the diagnosis at age twenty oneManaging expectations: Maria and Cheryl discuss what it’s like to try to manage your expectations and plan your life when diagnosed with RA so youngCollege and international studies: The difficulties of managing rheumatoid arthritis while being a college student in the USA, including barriers to medicationSocial media: Cheryl & Maria reflect on the benefits and drawbacks of social media, both having been diagnosed prior to social mediaMaria moves to Australia: the scarcity of medication and resources in Venezuala leads Maria and her husband to move to AustraliaPregnancy and parenting with rheumatoid arthritis: Maria shares her journey with pregnancy and parenting her two girls with severe pain from rheumatoid arthritisRemission: Maria shares the happy news of her current remission and how that’s improved her quality of life.“Auch Revista” - Maria explains why she started this non-profit Spanish language magazine to share stories and tips for others living with chronic illnesses.Speaker Bios:Maria Gonzales has lived with rheumatoid arthritis since she was twenty one years old. Throughout the years she has lived on three continents with RA. She also graduated college and had two babies while managing rheumatoid arthritis. She has experienced everything from excruciating pain to a current remission. She enjoys sharing her journey with others and started the “Auch Revista” (translation: Ouch Magazine), a non-profit magazine for the Spanish speaking community living with chronic illness. 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.Episode SponsorThis episode is brought to you by Rheum to THRIVE, a 6 month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.  Join the waitlist today! Episode links:Maria’s links:Instagram @auch.revistaAUCH Revista - Spanish language magazine focusing on ways to help people with chronic illnesses Things we mentioned in the episode:Man’s search for meaning bookCheryl’s Arthritis Life free resources:Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupFree Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseMedical 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.Full Episode Details + TranscriptionFor a full transcription and more details about this episode, go to www.MyArthritisLife.net 

Even after getting diagnosed with bi-lateral pulmonary emboli, a necrotizing lung nodule and periodic paralysis, Kim was repeatedly dismissed as being “hysterical,” “just anxious” and having “nothing wrong” with her when it turns out her lung had collapsed, she had an air leak on her lung suture line and she also had rheumatoid arthritis.  Kim shares her experiences and perspectives with candor in hopes that no one who’s gone through similar experiences will feel alone.Episode at a glance:Kim’s journey going from 90 minute daily bike rides to not being able to walk due to a collapsed lung and other undiagnosed health issues.Kim’s multiple experiences with medical gaslighting, or being dismissed by medical providers, including being erroneously diagnosed with “conversion disorder” when she presented with lower body paralysis.Kim files a complaint with the hospital (who employed Kim’s original surgeon who told her “nothing’s wrong” when she in fact had a collapsed lung) and nothing happens.Kim and Cheryl discuss ways the medical system can be improved to avoid medical gaslighting in the future, including using systems like “risk management.”Kim shares what it’s been like to balance treatments for rheumatoid arthritis with hypokalemic periodic paralysis.Kim shares how she’s mentally coped with everything she’s been through.SUICIDE PREVENTION RESOURCE: If you are in the USA and you are in crisis, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.Kim and Cheryl discuss what it feels like to feel “trapped” in your own bodyKim & Cheryl discuss “thin privilege” and how people who are overweight face additional stigmas when seeking medical careKim & Cheryl discuss the “inconvenient truth” that so much of our health is influenced by luck rather than things we can control (like diet). Kim discusses equity versus equality and relates those concepts to healthcareKim shares “a day in the life” and what tools help her function on a daily basis.’Kim shares what brings her joy in life, including rescuing kittens.Kim provides an alternative to the 1-10 pain scale.Speaker Bios:Kim:Kim has experienced chronic intermittent pain since she was seven years old. She has been written off by doctors as being depressed, anxious, over exaggerating. Her severe pain experience has been in her head/neck/shoulders but more recently it has extended from her hips to her feet and from her shoulders to hands. In between her daily struggles with pain, she has experienced massive bi-lateral pulmonary emboli, a lung nodule that started necrotizing her lung tissue, hypermobile joints and most recently periodic paralysis. The necrotizing lung nodule was determined to be rhematoid in nature so that put her into the rheumatoid family and a working diagnosis of rheumatoid arthritis. Outside of illness, Kim is an academic librarian, an endurance cyclist, newborn foster kitten parent and lover of state and national parks. Cheryl: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 Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Join the waitlist today! Episode links:SUICIDE PREVENTION RESOURCE: If you or someone you know is suicidal, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.Kim’s contact information: Klooby2 -at- gmail.comCheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more 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 conditionArthritis Life Youtube channelMedical 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 at a glance:Suruthi’s diagnosis story of juvenile idiopathic arthritis (JIA) at age 3What it was like to be a small child with hip displasia and JIA, unable to walk for long periods of time, including social isolationThe challenges Suruthi faced in college with some “friends” and roommates not understanding her condition, accusing her of faking and ultimately bullying and shaming herHow Suruthi’s painful experiences and her volunteer work with “Versus Arthritis” in the UK led her to create her “Fight Rheumatoid Arthritis” instagram account and be more open about her storyHow Suruthi’s south Asian culture affected her experience of disability and chronic illnessHow and why Suruthi is pursuing a PhD in chemical engineering“A Day in the Life” for Suruthi todayWhat Suruthi wishes everyone knew about living with arthritis Speaker Bios:Suruthi, I am 22  and I have had Juvenile Idiopathic Arthritis since I was three! Having arthritis has impacted my life in many ways but I rarely saw people like me talking about it which is what led me to start my instagram account, fightrheumatoidarthritis.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 Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Episode links:Suruthi account:Instagram @fightrheumatoidarthritisCheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc For full episode details and links, go to: https://arthritis.theenthusiasticlife.com/2021/07/20/whats-it-like-to-grow-up-with-juvenile-idiopathic-arthritis-suruthis-gnanenthirans-journey-from-isolation-to-advocacy/ 

Episode at a glance:Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about itThe importance of disability representation beyond the cliche “inspirational” storyHow Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20sWhy Karol identifies as disabled, rather than a “person with disability” (including a discussion of the #SayTheWord, #TheWordIsDisabled movement)How both Cheryl and Karol have confronted their internalized ableismWhy Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseasesExcerpts from Karol’s award winning young adult novel “Cursed,” about a young woman with JIA who is “frank, funny and full of f-bombs.”The importance of disability prideSpeaker Bios:Karol Ruth Silverstein is a children's book author and screenwriter. She was diagnosed with juvenile rheumatoid arthritis at 13 and has identified as disabled since 21. Originally from Philadelphia, she now lives in West Hollywood with her two exceptionally fully cats. You can find her website at: https://www.karolruthsilverstein.com/ 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 Rheum to THRIVE, an online support group and educational program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 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.\For full episode links go to:  https://arthritis.theenthusiasticlife.com/2021/07/14/why-do-disability-pride-and-disability-representation-matter-with-cursed-novelist-and-jia-patient-karol-ruth-silverstein/

Episode at a glance:Introduction and Agenda Review (1:00)Definition of a Flare Up for rheumatic disease (which includes ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis) (6:30)What causes flare-ups, and why is it so important to discover our own unique flare triggers? (7:40)Focus on Pain: tools to prevent pain and reduce existing pain (25:00)Focus on Fatigue: tools to prevent and reduce fatigue (31:00)Focus on Stress: ways to decrease stress levels & cope with existing stress (37:00)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 SponsorRheum to THRIVE, an empowerment program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here! 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 I say) FUN patient education and self-management resources.Episode links:Resources discussed in this episode:Video recording of the “Build Your Rheumatic Disease Flare Up Toolkit” webinar (includes presentation slides)"Multiple Factors Associated With Fatigue in Rheumatoid Arthritis" research articleLink to my webinar about stress managementWhat is ACT - acceptance and commitment therapy: Information siteThe Happiness Trap - Book and online program from Dr. Russ Harris - explains Acceptance and Commitment TherapyApps for symptom tracking:Cheryl doesn’t have one favorite but some she finds helpful are: Symple, MyArthritis, OpenCare, Wave, MyRaTeam, MyVectra, Chronic Insights, RA Healthline, Arthritis Foundation Track & ReactRecommended episode: 8 Things everyone who loves someone with arthritis should knowFree Facebook group: Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupArthritis Life Program LinksRheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more 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 InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLifeArthritis Life Facebook PageCheryl’s Twitter: @realccArthritis Life Youtube channel

This episode includes discussions about:How to decide whether or not to have children while living with a chronic illnessTips for comfortable sex with chronic painFrequently Asked Questions about pregnancy with rheumatoid arthritis, including how to find out which medications are safeCheryl and Mariah’s experiences with childbirth and C-sectionsHow frequent is the postpartum flare-up and how can it be prevented?Advice for feeding a newborn with rheumatoid arthritis, including discussions about ergonomics, breast versus bottle feeding and “fed is best.”Practical tips for managing the physical and energy demands of new babies including diapering, clothing, baby wearing and more!This is part one of a two part series - later, Mariah and Cheryl will share tips for parenting toddlers / “big kids” and managing mental health as chronically ill parents!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.This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Episode links:Resources discussed in this episode: Mother To Baby - nonprofit resource for medication safety during pregnancy and breastfeedingPast episodes of Arthritis Life podMariah’s book review from rheumatology nurse practitioner Iris Zink Sex – Interrupted: Igniting Intimacy While Living With Illness or DisabilityHealtheVoices - patient advocacy conference Mariah attended Mariah’s links:Twitter & Instagram: @mamasforwardFacebook page: https://www.facebook.com/mamasforwardFacebook group: https://www.facebook.com/groups/mamasfacingforwardArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupJoin the waitlist for Rheum to THRIVE an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. For full episode details, including a detailed episode breakdown, go to: https://arthritis.theenthusiasticlife.com/2021/06/17/tips-for-pregnancy-and-postpartum-with-rheumatoid-arthritis/

Speaker bios in order of appearance:Kristen Brogan: Kristen has been living with rheumatoid arthritis and Sjogren's since 2018. She is a Board Certified Behavior Analyst and has a PhD in Cognitive and Behavioral Sciences, which she uses to inform behavioral chronic illness coaching that she provides for others living with chronic illness. In her free time, she enjoys writing, yoga, meditation, and spending time with her partner and their three dogs. Links: IG handle @WarriorsMoveMountains and my website which is www.WarriorsMoveMountains.WordPress.comEmma  is a 24 year old living with inflammatory arthritis in Ontario, Canada.Gittel is a 32-year-old daughter of immigrants from Central America, who was born and raised in downtown Los Angeles. She is a "forever teacher" who is no longer in the workforce due to her diagnosis of ankylosing spondylitis (among others). Currently, she is riding out the pandemic at her parents' and is learning to manage her illness as best she can---one moment at a time. She can be found on IG at @gittieMelissa McKenzie is a writer from Jamaica who can be found at @pennedbymelissa on Instagram.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.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=subscriberCheryl 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. You can find Cheryl at:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelUnity Schmidt: Born into a near-death experience, my journey with JRA became official shortly after my 1st birthday; activating my lifepath to move from chronic pain to purpose. As a life coach, author and teacher, I help my clients understand their energy, move through any blocks/challenges, and awaken their inner magic to reach their biggest dreams! Learn practical, magical ways to uplevel your life and choose your adventure with faery godmother life coaching, classes and my "SOS Energy Report" now available online.Healing with Unity on YouTubeUnity Schmidt: instagram.com/unityschmidtwww.HealingwithUnity.comMary (Mimi) Cross, age 27, diagnosed with rheumatoid arthritis 7 years ago, runs Inflammation Vacation and can be found on Instagram at @inflammationvacation.Ashley Shrum is a physical therapist living with arthritis who can be found on Instagram at @a.shrummerEffie Koliopoulos is a freelance writer and rheumatoid arthritis patient advocate. She created her blog Rising Above Rheumatoid Arthritis in 2016, after being inspired to share her story more publicly and connect with others after undergoing a total knee replacement.Currently residing in Chicago, she is working on her debut children’s picture book, enjoys creating video content for her YouTube channel and other projects. Effie’s BlogEffie’s InstagramEffie’s TwitterEffie’s Rising Above RA RAra Shop Designs (Merch): Effie’s Youtube Channel: RA and MyselfThis podcast is brought to you 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. Join the waitlist  today!Arthritis Life links:Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin 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.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:01:00 Kristen Brogan: “An Unexpected Rebirth” (Sjogren’s)05:00 - Emma (inflammatory arthritis)7:55 - Gittel (AS) - “Being at War with Myself (aka the Rocky Relationship with my Body)”12:50 - Melissa - “I am More than this Grief”18:00 - Cheryl Crow - “A Pleasure to Have in Class”27:00 - Joel Nelson - “The Arthritis Tease” and “The Invisible”30:10 -  Unity - Croon33:40 - Gittel - additional biographical info34:40 - Melissa - “Brain Fog” poem37:10 - Mimi Cross (Inflammation Vacation)38:15 - Ashley S “You Say You’ll Never but I do.”41:25 - Gittel - Second poem43:00 - Effie - reading from Brenda Klean-Sasser poem (2012) “100 Shades of Blue”

Topics covered in this episode include:Stigmas around disability within South Asian communities.Sukhjeen’s personal story with rheumatoid arthritis and how that led her to form the nonprofit Chronically BrownExploration of medication shaming.Lack of representation of people of color’s voices in online chronic illness communities.Discussion about how South Asian practices (like yoga, herbal remedies and turmeric) are sometimes bashed within the chronic illness community.Dos and Don’ts for when reacting to someone’s chronic illness or disability.What should medical professionals consider when treating someone of South Asian descent?Exploration of white privilege and microaggressionsSpeaker Bios:Sukhjeen Kaur is the Founder of Chronically Brown which aims to address the ableism in South Asian communities. Chronically Brown is a non-profit organisation dedicated to empowering South Asians with invisible & visible disability through education and support. Sukhjeen has lived with rheumatoid arthritis for 2 years.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 enjoyable 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. Episode links:Sukhjeen Kaur links:Facebook: https://www.facebook.com/ChronicallybrownIG: https://www.instagram.com/chronicallybrown/Twitter: @chronicbrown  https://twitter.com/chronicbrownWebsite: https://chronicallybrown.com/Resources and Articles mentioned in this episode:South Asian culture affects people’s experiences with chronic illness.  Medication shaming American College of Rheumatology - 2021 Photography contest for skin of color (due date - July 2021)“Not everyone with a chronic illness is a skinny white woman” graphic, which was inspired by “Invalid Art”Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin 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 InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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 Breakdown:1:00 - Sukhjeen shares her initial difficulty adjusting to her chronic illness due to lack of representation of people of color in online communities. She shares how she learned to accept her condition after connecting with others from her cultural community.5:30 - Sukhjeen explains how and why she formed the nonprofit Chronically Brown. She shares how she grew up in a predominantly white area and felt her cultural background was erased during her youth. The exclusion and stigmas for people of color with disabilities leads Sukhjeen to form Chronically Brown. 9:05 - What does “intersectionality” mean and how does that apply to a person of color living with a disability? What does it feel like to be excluded from both your culture and your disability community? 10:30 - Specific stigmas around disability within South Asian communities, including “What will people say?” Pressure to hide your chronic illness, not use mobility aids, “fix” or cure your illness, maintain an image of perfection and more examples. 15:00 - How Sukhjeen became comfortable being more outspoken about her experiences with disability. 20:00 - Sukhjeen explores medication shaming within South Asian communities and the chronic illness community at large. 22:00 - Exploration of how South Asian cultural treatments (like yoga or herbal remedies or turmeric) are sometimes bashed within the chronic illness community. The importance of the language we chose; “have you tried yoga” can be exclusive or derogatory towards South Asian communities.26:45 - Exploration of the phrase “herbal medicine” and how that often signifies nonwhite practices versus “Western medicine.” 28:35 - Recognition of the emotional and energetic labor that goes into educating others about culture. Recognition that not every South Asian person wants to speak about their culture. 30:30 - Sukhjeen explains her “Dos and Don’ts” when reacting to someone’s chronic illness or disability, and what to say when you don’t know what to say. Why is it so harmful when people say things like “you just need to push through it” or “my friend tried XYZ and they are cured, you should too.”35:15 - What does Sukhjeen want medical professionals to know about South Asian cultures and disability? 41:00 - Sukhjeen’s final message: the importance of including South Asians in all efforts around chronic illness and disability, and uplifting the voices of people of color.44:00 - Reflection on #DisabilityTooWhite. The importance of representation of people of color’s experiences. Cheryl’s reflection as a white person about the importance of recognizing your blind spots and subtle forms of racism and biases. 46:00 - Sukhjeen’s examples of racial microaggressions when filling her medication and a pharmacist delaying her medication due to his difficulty understanding her name.50:00 - Cheryl’s reflections on having white privilege, the importance of recognizing it and using it in a helpful way rather than taking advantage of it.51:30 - Where to follow up with Sukhjeen.

Topics include:Joel shares what it was like to grow up with juvenile idiopathic arthritisJoel 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 painCheryl & Joel share tips and exercises for mental wellbeing despite chronic illnessSpeaker 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=subscriberBooks and resourcesThe Happiness Trap book explaining Acceptance and Commitment Therapy conceptsVersus Arthritis nonprofit with helpful resourcesArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin 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 InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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.