The Conditions for Recovery Podcast: Hope, Agency and Chronic Illness

When Alexandra Stenson was diagnosed with Fibromyalgia she was told her life was over and that she just needed to learn to live with pain and limitations. She thought "that's not for me" and started a journey of figuring out how her life could be better. She now says she is healthier and happier than she was before becoming disabled.“Let's look at what's possible. Let's not sign you off and leave it there. Let's go, how well could I feel? How great could my life look? What could I do? Not I can't do that anymore.”In this episode of The Conditions for Recovery Podcast, Alexandra Stenson shares her journey following a 2018 car accident from being told her life was over to finding a way to live happily and healthily alongside persistent pain.Alexandra was diagnosed with fibromyalgia and hypermobility after a period of uncertainty. She faced disheartening advice, medical dismissal and the harsh reality of navigating an invisible condition where people kept telling her she "looked fine".Alexandra brings her experience as a pain support group facilitator to share practical, empowering strategies for managing long term conditions.Alexandra’s insights into holistic wellness, mindset shifts and peer support will resonate with many people living with chronic conditions.In this episode, we discuss:Alexandra’s Journey To A Fibromyalgia Diagnosis: Navigating invisible symptoms, imposter syndrome and the frustration of being told "you look fine".Overcoming "Your Life Is Over" Medical Messaging: Why standard acceptance and expectation management advice feels like resignation, can lead to downward spirals and how Alexandra decided to focus on “Operation Get Better”.Redesigning Life With A Comprehensive Toolkit: Combining nutrition, sleep, functional medicine and lifestyle changes alongside conventional care.Reclaiming Personal Agency: Transforming the phrase "no one is coming to save you" into an empowering call to action and the importance of choosing to pursue wellness every time that you can.Recognising The Role of Time and Patience: Realising that flares are temporary and how catastrophising makes them worse.The Power of Peer Support and Community: How co-facilitating a pain support group created a collective hive mind for sharing tools and mutual understanding.Connect with Alexandra:LinkedIn: Alexandra StensonConnect with the Show:Links: www.paincoaching.co.uk/links Follow: @SpecialistPainPhysioOther resources:Books that Alexandra found life changing:Designing Your Life: For Fans of Atomic Habits by Bill Burnett & Dave EvansThe Miracle Morning (Updated and Expanded Edition): The 6 Habits That Will Transform Your Life Before 8AM by Hal ElrodThe Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der KolkBOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE:https://www.paincoaching.co.uk/consultationDisclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.

“That’s when I went from just existing to beginning to live.”In this episode of The Conditions for Recovery Podcast, Ann Livingstone shares her journey from living through six decades of persistent pain, fatigue and opioid dependency to taking back control of her life and finding a new sense of purpose.For 60 years Ann experienced physical injuries, medical dismissal repeatedly framed by clinicians as "what do you expect?" and years of zombifying pain medication before being warned during a hospitalisation that organ damage from her drugs could kill her before the pain did.Ann now uses her experience as a pain advocate, founder and director of Community Pain Hub Somerset CIC, Live Well with Pain facilitator and Footsteps Festival organiser to champion early intervention and community peer support.Her insights into navigating non linear recovery, rejecting both toxic positivity and narratives of inevitable decline and finding moments of wellness within illness will resonate with anyone living with persistent pain or long term health conditions.In this episode we discuss:Ann’s 60-Year Journey with Pain: From childhood accidents and medical dismissal to reaching a crisis point with pain medication.The Turning Point During COVID-19: How volunteering during COVID-19 restored her sense of value, contribution and purpose.The Case for "Upstreaming" Pain Care: How offering early support and education can prevent people from falling into years of isolation and suffering.Community Pain Cafes & Peer Support: Ann's innovative idea to create accessible community hubs attached to GP surgeries that focus on whole person support alongside diagnostic tests.Moving Beyond Toxic Positivity & Inevitable Decline: Why both simplistic cure narratives and the wilderness of hopelessness are equally harmful.Navigating Non Linear Recovery: How major life events and grief impact physical symptoms and why experiencing a flare up is never a personal failure.Connect with Ann:Community Pain Hub Somerset: https://communitypainhubsomerset.org.uk/Footsteps Festival: https://footsteps-festival.co.uk/Connect with the Show:Links: www.paincoaching.co.uk/linksFollow: @SpecialistPainPhysioBOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE: https://www.paincoaching.co.uk/consultationDisclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.

"When you live with pain, the first thing you want is your pain gone. The pain might lessen, it might not but let’s figure out how to get back into life and have that energy."In this episode of The Conditions for Recovery Podcast Amber Kyliuk who has lived with persistent low back pain for 12 years shares her story of figuring out what she could do next once conventional treatment had failed.Amber was teaching a yoga class for people living with back pain but couldn’t improve her own pain with the standard advice so she began delving more deeply into pain science.Amber now works with other people experiencing pain and she’s back to living life enjoying many of the activities she loves such as cycling, skiing, hiking and strength training.Amber shares insight that only people who bridge the gap between clinician and person living with pain can.In this episode:Pain Is Real Tests Are Just One Part of a Bigger Picture: Persistent symptoms are genuine, disruptive and life changing regardless of what your scans or tests show.The Way We Talk About Pain Can Help or Harm: Language shapes beliefs and oversimplified messages can cause self doubt or blame.Recovery Needs to be Individualised: One size fits all healthcare is a missed opportunity. Care always needs to respond to the person, not just the diagnosis.Living Well Matters More Than Chasing Perfect: The goal is not just reducing pain but rebuilding confidence, function and a meaningful life alongside it.Small Steps Build Lasting Change: Noticing cues early, pacing and doing the work gradually prevents huge variability whilst supporting long term recovery.Unfortunately, due to pretty heavy technical issues the quality dropped on the section of the recording from 28:23 - 41:42. During this segment, we also discussed:Shifting from traditional treatments to understanding mind body approaches.The common mistake of pathologising normal discomfortHow emotional stress can trigger real pain without causing physical tissue damage.How small victories help you get your life back through confidence building.Connect with Amber:Website: https://criticalmovementyyc.caSubstack: https://criticalmovementyyc.substack.comPain Literacy Course: https://critical-movement-yyc.systeme.ioConnect with the Show:Links: www.paincoaching.co.uk/linksFollow: @SpecialistPainPhysioBOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE: https://www.paincoaching.co.uk/consultationDisclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.

“I’d rather sit with a Doctor who says “I don’t know what’s going on” than not to believe me and say that I was trying to avoid work or I was making it up.”In this episode of The Conditions for Recovery Podcast globally recognised patient advocate and educator Virginia McIntyre shares her story of being dismissed with accusations of over reaction and just not wanting to work to an “awesome life” full of purpose, participation and community.Virginia was a high functioning, career focussed Super Mum who ran marathons and had an active social life until a workplace injury and subsequent surgery led to years of chronic pain which stopped her in her tracks.She endured many disappointing, dismissive interactions with healthcare professionals who wouldn't listen to what she was saying about her pain and trust her story.She began to see positive improvement once she started to work with people who specialised in persistent pain. She is now President and Executive Director of the People In Pain Network, Chair of the Canadian Pain Society People with Lived Experience Committee, Co-host of The Action on Pain Podcast and member of the Pain Canada National Advisory Committee. She’s also enjoying being a grandmother and back to running just not quite as far.Her journey with pain is one which many will relate to and her insights into how she has been able to rebuild her life are invaluable.In this episode:Your Pain is Real: The power of being genuinely believed by healthcareLosing Trust in Healthcare Professionals: Being trapped in the wilderness of dismissalImproving Early Access to Specialist Services: Before people spiral into loss of hope, identity, and relationshipsThe Need for Better Pain Education for Healthcare ProfessionalsThe Role of Purpose and Participation in RecoveryThe Benefit of Community Support: Often dismissed as sh*t life syndrome competitions but can be the missing pieceRecognising your Agency in your Own Health Journey: When there is no simple, medical solution, then what?Drowning Out the Noise of Unhelpful Communities: Not all support groups are created equalBeing Open to Opportunities: Trying something that might be helpful does not commit you for lifeIndividualised Care: Pain is complex and individual and the approaches we take need to mirror thatRebuilding Identity and Self Worth After a Chronic Pain DiagnosisConnect with Virginia:LinkedIn: https://www.linkedin.com/in/virginia-mcintyre-8867a247/Action On Pain Podcast available on all major platformsPeople In Pain Network: www.pipain.comConnect with the Show:Links: www.paincoaching.co.uk/linksFollow: @SpecialistPainPhysioBOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE: https://www.paincoaching.co.uk/consultationDisclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.

“You can’t focus exclusively on one part of your body or mind and neglect the rest.”In this episode of The Conditions for Recovery Podcast Carolyn Sullins, PhD shares her journey from decades of medical gaslighting and misdiagnosis to feeling back in control of her symptoms and her life.Carolyn now has a diagnosis of Functional Neurological Disorder but it took a long time to reach that outcome. Along the way she faced a huge amount of dismissal, stigma and self doubt.Carolyn brings her expertise as a researcher to the table to help to increase understanding and support for others living with FND.Even though Carolyn does not live with persistent pain her insights and experiences will be recognisable to many people with long term conditions and I know that this episode will be exceptionally valuable to many more people than just those with FND.In this episode, we discuss:Carolyn’s long journey to an FND diagnosis: The stigma and self doubt that came with being misunderstood.Why symptoms can be real, life altering and vary significantly without showing up on standard scans or tests.How collaborative, individualised physical rehabilitation helped Carolyn regain confidence and function.Why Stress, Trauma and Mental Health Matter: Without being used to dismiss someone’s physical experience.The Need to Move Beyond One Size Fits All Healthcare: Listening to people as whole individuals.Connect with Carolyn:LinkedIn: https://www.linkedin.com/in/carolyn-sullins-phd-3b89582a/Substack: https://drsullins.substack.com/Connect with the Show:Links: www.paincoaching.co.uk/linksFollow: @SpecialistPainPhysioOther resources:Neuro Symptoms: https://neurosymptoms.org/en/FND Hope: https://fndhope.org/BOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE: https://www.paincoaching.co.uk/consultationDisclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.