Inflammatory!

Inflammatory Arthritis UK

Inflammatory! We want everyone to understand what life is like living with a chronic fluctuating disease. The founders of Inflammatory Arthritis UK, Debbie and Katy, give a unique insight into their lives covering the realities of living with inflammatory arthritis (IA) in a positive and friendly way. They will discuss popular topics and answer questions with honesty based on their experiences navigating life with IA.  Whether you’re personally affected, supporting a friend or family member, or simply seeking understanding, Inflammatory! is for you.

  1. 19h ago

    Why is Inflammatory Arthritis So Frustrating?

    “From being believed in the consulting room to being supported at work, this episode explores why listening, understanding and partnership are essential for people living with inflammatory arthritis.” We Would Love Your Feedback Our podcast listener survey is now open. It only takes a few minutes to complete and helps us understand what you enjoy, what you'd like to hear more of, and the impact the podcast is having. Your feedback also helps support future funding applications. Complete the survey via our website: inflammatoryarthritis.org Episode Summary Debbie reflects on finally receiving a long-awaited steroid injection after seven months of waiting and contrasts the positive, collaborative experience with a much less supportive GP appointment. The discussion shines a light on the importance of being listened to, believed, and treated as an equal partner in your healthcare. The conversation also explores the wider challenges facing the NHS, from workforce pressures and staff shortages to the impact these issues have on both patients and healthcare professionals. While frustrations are real, Debbie and Katy discuss why kindness, understanding and better communication are needed on all sides. They also revisit last week’s powerful conversation with Arun, discussing employment, flexible working, disability support, and the importance of including lived experience in policy decisions. From workplace adjustments to the realities of navigating benefits and returning to work, they explore the barriers many people with long-term conditions continue to face. Plus, they discuss: Why being dismissed or told symptoms are "all in your head" can have lasting impacts.The challenges of self-advocacy, especially when you're unwell.How women’s pain and symptoms can still be overlooked.Why support networks play such a vital role in living well with inflammatory arthritis.New NHS App features, appointment notifications and prescription updates.The importance of checking medication delivery dates and staying on top of prescriptions.A recent visit to Parliament with the Arthritis and Musculoskeletal Alliance (ARMA) to raise awareness of musculoskeletal conditions and the need for greater political focus. Key words: Inflammatory arthritis, flare-ups, chronic pain, patient experience, being believed, healthcare communication, patient advocacy, self-advocacy, rapport, trust, mutual respect, NHS pressures, workforce shortages, steroid injections, costochondritis, women's health, invisible illness, workplace support, flexible working, support networks, lived experience, NHS App, prescriptions, medication management, ARMA, Parliament, musculoskeletal conditions, resilience, chronic illness.  Stay Connected Sign up to our newsletter for the latest podcast episodes, upcoming guests, events and community updates at https://inflammatoryarthritis.org/ Follow Inflammatory Arthritis UK on: Facebook, Instagram, LinkedIn, Bluesky, YouTubeDisclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Why is Inflammatory Arthritis So Frustrating?

  2. Oct 30

    Arun: AS, Work & A Rare Side Effect

    "When you have a health condition, it can feel really isolating." Living with ankylosing spondylitis (AS) changed the course of Arun's life in ways he never expected. In this week's episode of Inflammatory!, Arun shares his journey from a successful career in finance to becoming a leading voice in disability policy and advocacy. After developing AS in his twenties, Arun faced an incredibly rare side effect from a biologic treatment that left him unable to recognise loved ones, remember everyday tasks or continue working. At one stage he had to relearn basic activities, setting himself goals such as ordering a sandwich independently or navigating public transport again. We discuss: 🔹 The early symptoms of AS and his diagnosis journey 🔹 The rare treatment side effect that changed everything 🔹 Living with cognitive impairment and rehabilitation 🔹 Managing health anxiety after serious medication side effects 🔹 Access to Work, workplace adjustments and staying in employment 🔹 Applying for PIP and navigating the appeals process 🔹 The hidden financial costs of living with a long-term condition 🔹 Why lived experience must be at the heart of policy decisions 🔹 Finding purpose, confidence and new hobbies after diagnosis Arun also shares how gardening, pottery and disability advocacy helped him rebuild his confidence and discover a new direction in life, reminding us that while inflammatory arthritis can change our plans, it can also reveal strengths we never knew we had. Memorable Quotes "My goal last year was to go to Pret and order a sandwich by myself." "I thought policy is the way that we can change lots of people's lives." "Focus on what you can do, and what you can improve and change." "Sometimes being kinder on yourself is really important." Resources Mentioned Access to Work https://www.gov.uk/access-to-workPersonal Independence Payment (PIP) https://www.gov.uk/pipDisability Policy Centre https://thedisabilitypolicycentre.org/Scope https://www.scope.org.uk/Inflammatory Arthritis UK https://inflammatoryarthritis.org/Keywords Ankylosing spondylitis, AS, axial spondyloarthritis, biologics, biologic side effects, rare medication side effects, inflammatory arthritis, disability benefits, PIP, Access to Work, disability policy, chronic illness, employment and disability, rehabilitation, brain fog, cognitive impairment, chronic illness advocacy, disability rights, living with ankylosing spondylitis, inflammatory arthritis podcast. Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Arun: AS, Work & A Rare Side Effect

  3. Oct 23

    Why Don't you Believe Us?

    In this packed episode, Debbie and Katy discuss the frustration of not always being believed when living with an invisible condition and ask whether the true burden of inflammatory arthritis, particularly fatigue and the energy required to fight chronic inflammation, can ever be properly quantified. As always, the conversation is balanced with humour, including a light-hearted debate about the economic impact of "man flu". They reflect on Simon Stones’ recent episode around medication side effects, patient advocacy, and the importance of making the most of good days. This ties into World Arthritis Day's theme of Achieving Your Dreams, and a diagnosis may change your path, but it does not have to stop you achieving your goals. Key topics: Invisible illness and not being believedFlu and COVID vaccinationsSeasonal changes and symptom managementHealthcare language and patient experiencePatient advocacy and raising awarenessReflections on Simon's storyMedication side effects and delayed diagnosisLiving well, pacing and managing flaresResilience and achieving your dreamsSupporting Inflammatory Arthritis UK through EasyFundraisingKey words: Inflammatory arthritis, rheumatoid arthritis, juvenile idiopathic arthritis, axial spondyloarthritis, invisible illness, chronic illness, flu vaccine, COVID vaccine, vaccinations, patient advocacy, patient participation groups, delayed diagnosis, healthcare communication, DMARDs, medication side effects, fatigue, chronic pain, flares, resilience, self-advocacy, research, World Arthritis Day, achieving your dreams, wellbeing, mental health, living well with arthritis. Quotes: "Looking well doesn't mean you're well." "If a medication isn't working for you, it doesn't mean you've failed. It means the treatment isn't right for you." "You can do everything right and still flare. Sometimes we're trying to control the uncontrollable." "Why would we lie about being ill? We just want to be healthy." Resources: Inflammatory Arthritis UK: inflammatoryarthritis.org EasyFundraising: easyfundraising.org.uk NHS Vaccination Information: nhs.uk/vaccinations/ Follow Inflammatory Arthritis on social media: Facebook, Instagram, LinkedIn, Bluesky, YouTube Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Why Don't you Believe Us?

  4. Oct 16

    Louise Parker: Raynaud's

    In this episode, Debbie and Katy speak with Louise Parker, founder and director of the Raynaud’s Clinic in London and independent nurse consultant with 25 years’ NHS experience. Louise breaks down what Raynaud’s actually is, why it’s far more than “just cold fingers,” how environmental triggers have changed, the overlap with inflammatory arthritis, and why many people are living with unmanaged symptoms simply because they’ve never been asked about them. She also explains testing, treatment options, misconceptions, and when Raynaud’s can signal something more serious. Key Topics Covered What Raynaud’s isWhy it’s no longer just a winter condition, the rise of air‑conditioning and sudden temperature dropsEveryday triggers: supermarkets, cars, iced drinks, swimming, exercise, stress, adrenalinePractical day‑to‑day management: gloves, hand warmers, layering, heated clothing, keeping the core warmThe difference between “poor circulation” and Raynaud’sNatural therapies and medication optionsWeight loss, chemotherapy, and other factors that worsen symptomsThe overlap with inflammatory arthritis and connective tissue diseasesWhen Raynaud’s is benign vs. when it’s a red flagWhat happens at the Raynaud’s Clinic: thermal imaging, capillaroscopy, personalised management plansWhy patients often aren’t asked about Raynaud’s and why they should beKeywords: Raynaud’s, circulation, colour changes, microvascular, cold sensitivity, reperfusion pain, autoimmune, inflammatory arthritis, connective tissue disease, systemic sclerosis, lupus, vasculitis, capillaroscopy, thermal imaging, stress response, adrenaline, air‑conditioning triggers, weight loss, chemotherapy, management strategies, heated clothing, hand warmers. Quotes “Raynaud’s is an exaggerated response to the cold, you’re not just cold, you’re really cold.” “Supermarkets are freezing cold… even taking milk out of the fridge can trigger an attack.” “There’s a misconception that nothing can be done. That’s simply not true.” “If Raynaud’s appears out of the blue later in life, that’s a red flag worth investigating.” Resources and mentions Raynaud’s Clinic London raynaudsclinic.com: consultations, thermal imaging, capillaroscopy, personalised management plansInflammatory Arthritis UK (IAUK): newsletter, events, research opportunitiesInflammatoryarthritis.orgIAUK social channels: Facebook, Instagram, LinkedIn, BlueSkyIAUK YouTube channel to watch full podcast episodesDisclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Louise Parker: Raynaud's

  5. Oct 9

    Dr Simon Stones

    In this powerful and deeply human conversation, Debbie and Katy sit down with Dr Simon Stones, award‑winning medical communications specialist, internationally recognised patient advocate, and Chair of the EULAR PARE Committee. Diagnosed with juvenile idiopathic arthritis (JIA) at just three and a half, Simon shares his journey from childhood symptoms and difficult treatments to becoming one of the most influential voices in patient engagement. He talks candidly about growing up with chronic illness, the emotional impact of treatment, school experiences, his mother’s influence, and how lived experience became the foundation of his global advocacy work. Simon also reflects on grief, pacing, humour, relationships, and why he believes in doing things now rather than waiting for “one day”. This episode is full of honesty, warmth, and wisdom, a must‑listen for anyone living with inflammatory arthritis, caring for someone who is, or working in healthcare. Key Topics Early signs of JIA and the diagnostic journeyThe role of Simon’s mum and her own autoimmune conditionsOligoarticular vs polyarticular JIASevere treatment side effects and tablet phobiaSchool experiences, adaptations, and supportive teachersTransitioning from paediatric to adult rheumatologyDiscovering patient advocacy at 18The value of lived experience in research and policyInternational advocacy through EULARBalancing work, health, travel, relationships, and caring responsibilitiesGrief, perspective, and “doing things while you can”Humour, identity, and embracing differenceQuotes “I didn’t realise the value of lived experience as expertise, but it’s one of the most important things in the room.” “I would sooner be in a wheelchair than take that tablet. That’s how bad it was.” “We’ve got one chance at life. Make the most of it, regardless of what’s thrown at you.” “If people don’t accept who I am and what I need, they’re not the right people to be in my life.” “Don’t wait. If you have the opportunity to do something, just do it.” Resources Mentioned EULAR PARE Committee: European patient organisations working together to improve rheumatology careClinical Studies Groups (UK): patient‑partner involvement in researchInvolve Conference: UK public involvement in researchSimon’s Instagram: @simonrstonesFollow Inflammatory Arthritis UK on Facebook, Instagram, YouTube, Linkedin and BlueskySign up to IAUK newsletter at inflammatoryarthritis.orgKeywords: juvenile idiopathic arthritis, JIA, patient advocacy, lived experience, EULAR, childhood arthritis, autoimmune disease, chronic illness, polyarticular JIA, oligoarticular JIA, methotrexate nausea, transition to adult care, patient engagement, rheumatology, inflammatory arthritis podcast, Simon Stones Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Dr Simon Stones

  6. Oct 2

    Living with or Manage Inflammatory Arthritis Life?

    This week’s episode is packed. Debbie and Katy kick off with huge news - Inflammatory! has officially won Best Patient‑Led Health Podcast of 2026, and the community has grown to over 1,000 Instagram followers. From there, the conversation moves through pets, fatigue, school‑term chaos, NHS frustrations, medical procedures, and the emotional load of living with inflammatory arthritis. They also dive deep into language: why the word “manage” feels clinical, restrictive, and disempowering, and why “living”, “adapting”, and “being flexible” might serve the community better. Key Topics Celebrating the podcast’s award win and growing communityKaty’s new hamster, Winter, and the joy of small petsSeptember fatigue and the “back‑to‑everything” overwhelmDebbie’s eye appointment, dry eyes, and the confusion of NHS systemsReceiving difficult results via the NHS app at the worst possible timeHow non‑IA medical procedures can unexpectedly trigger inflammationImmunosuppression, recovery time, and navigating painThe emotional impact of stress on long‑term conditionsWhy Debbie dislikes the word “manage” and what alternatives might empower people moreReflections on recent guests Luke and Raj: movement, nutrition, resilience, and lived experienceSchool experiences, bullying, and the importance of awareness for young people with IAUpcoming guests: Raynaud’s, vasculitis, CPPD, and more stories that need to be heardTakeaway You don’t have to “manage” your condition, you get to live your life with it, adapt, and grow. And you’re part of a community that learns together. Key words inflammatory arthritis, chronic illness, JIA, Axial SpA, scleritis, dry eyes, immunosuppressants, arthritis flare, NHS app, patient advocacy, lived experience, autoimmune disease, arthritis awareness, chronic pain, fatigue, gut health, nutrition, Raynaud’s, vasculitis, CPPD arthritis, rheumatology, podcast award, health podcast, IAUK, community supportLinks & Resources Follow us on Instagram, Facebook, LinkedIn, BlueSky & YouTubeSign up for our newsletter: inflammatoryarthritis.orgNew IA Stories blog: Julie Timms on CPPD arthritisPrevious episodes with Luke and Raj Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Living with or Manage Inflammatory Arthritis Life?

  7. Sep 25

    Luke Belfield: His JIA Story

    In this inspiring episode, Debbie and Katy speak with Luke Belfield, the first known person with Juvenile Idiopathic Arthritis (JIA) to swim the English Channel. Diagnosed at 13 after years of pain and uncertainty, Luke shares how sport, resilience, and remission shaped his journey from struggling to walk to completing marathons, Ironmans, and a 36.66‑mile Channel swim. He opens up about stigma, bullying, mental health, and the power of finding community and offers hope to young people and families navigating JIA today. Key Topics Luke’s diagnosis journey: swelling, misdiagnosis, steroids, and finally JIALosing football, losing confidence and rebuilding identity through movementWhy swimming became his mission to inspire children with arthritisTraining for the Channel: tides, cold water, jellyfish, and a surprise sharkPain, resilience, remission, and learning to listen to his bodySport as medicine: movement, stretching, and building tolerance to inflammationMental health tools: chess, juggling, meditation, inspiration from othersNutrition and lifestyle: Luke’s “non‑negotiable” anti‑inflammatory breakfastThe importance of role models and community for young people with JIAWhat he’d tell his 13‑year‑old selfWhat might be next: ultra‑distance triathlons and giving back to the communityKey Words: JIA, Juvenile Idiopathic Arthritis, childhood arthritis, inflammatory arthritis, chronic illness, remission, arthritis stigma, invisible illness, English Channel swim, endurance sport, open‑water swimming, arthritis and sport, physio, stretching, strength training, arthritis flare, arthritis nutrition, stress, sleep, mental health, JIA awareness, arthritis advocacy. Quotes “My mission is to inspire and share my story to spread hope.” “Sometimes it’s not the power of the curse, it’s the power you give the curse.” “If gym is for the body, meditation is for the mind.” “Find a role model with JIA. Message them. Chances are they want to help.”Connections: Luke Belfield on Instagram: @arthritiswimmerLuke Belfield on YouTube: @arthritiswimmerFor more stories, support, and community: Inflammatory Arthritis UK, visit inflammatoryarthritis.org podcasts, resources, and lived‑experience advocacy. Follow us on social media search for Inflammatory Arthritis UK on Facebook, Instagram, Blue Sky, LinkedIn and YouTube. Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Luke Belfield: His JIA Story

  8. Sep 18

    Dr Raj Amarnani

    Dr Raj Amarnani joins Debbie and Katy to share his unique perspective as someone who not only lives with Axial SpA but also treats Axial SpA patients in his clinical practice. He reflects on developing symptoms at age 11 “lower back pain, alternating buttock pain, out of the blue” and navigating a six‑year diagnostic delay that reshaped his teenage life, forcing him to stop sport and unexpectedly leading him to new passions, including magic. Raj discusses the relief and validation of finally receiving a diagnosis, how those formative experiences shaped his communication style as a clinician, and why empathy, language, and continuity of care matter so deeply. The conversation then explores physical activity, fear, fatigue, pacing, physiotherapy, hydrotherapy, nutrition, and the complexity of pain, alongside practical advice for getting the most out of short clinical appointments. Raj also shares insights into personalised medicine, future developments in rheumatology, and how he supports patients who prefer non‑pharmacological approaches, offering a thoughtful blend of lived experience and professional expertise. Key Topics Childhood onset AxSpA and its impactNavigating school and teenage life with painLosing sport and discovering new interests (“I joined the Magic Circle…”)Relief and validation after diagnosisHow lived experience influences clinical practiceEvidence for physical activity in inflammatory arthritisFear, fatigue, pacing and barriers to movementHow patients can prepare for short clinical appointmentsHydrotherapy, physiotherapy, and adapting exercisePain complexity and differentiating types of painNutrition and emerging researchPersonalised medicine and future developmentsPatient preferences around medicationTreating people as individuals, not just conditionsKey quotes “I’m a firm believer that when one door closes, other doors open.”“I used to be a very sporty kid… and essentially overnight all of that stopped.”“There’s that validation,  gosh, I’m not making this up.”“Fatigue is one of the hardest barriers… even EULAR hasn’t fully cracked it.”“Pain is such a complex area — so multifactorial.”“Treating the actual person, not just the condition, matters so much.”Key words: Axial SpA, AxSpA, AS, juvenile onset, diagnosis delay, fatigue, pain, pacing, physical activity, exercise prescription, hydrotherapy, physiotherapy, personalised medicine, rheumatology, nutrition, patient communication, chronic illness, MSK medicine. Contact Us Follow Inflammatory Arthritis UK on Facebook, Instagram, Blue Sky, LinkedIn and YouTube Sign up for our newsletter: inflammatoryarthritis.org Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

    Dr Raj Amarnani
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About

Inflammatory! We want everyone to understand what life is like living with a chronic fluctuating disease. The founders of Inflammatory Arthritis UK, Debbie and Katy, give a unique insight into their lives covering the realities of living with inflammatory arthritis (IA) in a positive and friendly way. They will discuss popular topics and answer questions with honesty based on their experiences navigating life with IA.  Whether you’re personally affected, supporting a friend or family member, or simply seeking understanding, Inflammatory! is for you.

Information

  • Creator
    Inflammatory Arthritis UK
  • Years Active
    2025 - 2026
  • Episodes
    73
  • Rating
    Explicit
  • Copyright
    © Inflammatory Arthritis UK
  • Show Website
    Inflammatory!

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