Keywords

chronic illness, inflammatory arthritis, support networks,medication management, health transparency, empathy, friendship, diagnosis,patient experience, healthcare

Summary

In this episode of Inflammatory! the hosts reflect on how stress, relationships, and chronic illness shape everyday life. Including the realities of moving house while managing refrigerated medication, highlighting the extra planning people with inflammatory conditions must navigate. They revisit last week’s guest, Haffy, and her experience of being diagnosed with inflammatory arthritis while pregnant and what that means for decision-making and self-advocacy.

A key theme is frustration with NHS systems and the lack of easy access to personal blood test results, despite growing calls for shared decision-making in healthcare.

With February’s theme of love, friendship, and chronic illness, Debbie and Katy discuss how living with inflammatory arthritis affects relationships, including:

Key topics:

• Managing medications during a move can be stressful.

• Support networks are crucial for those with chronic illnesses.

• Transparency in medical data is essential for patient empowerment.

• Explaining chronic illness to friends requires honesty and openness.

• Empathy is key in understanding the challenges of chronic illness.

• It’s important to recognize true friends during difficult times.

• Chronic illness can change social dynamics and friendships.

• Patients should have access to their medical information.

• Living with chronic illness involves a continuous learning process.

• Finding a supportive community can greatly enhance the patient experience.

Sound bites

"Why can't we see our blood test results?"

"It's a new life. It's a new chapter."

Connect with us

• Website: inflammatoryarthritis.org

• Newsletter: Sign up on the website

• Socials: BlueSky, Instagram, Facebook, LinkedIn

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/

In this powerful and deeply personal episode of Inflammatory! Debbie and Katy are joined by Haffy, a clinical pharmacist, university lecturer, and mum of two, who shares her journey of being diagnosed with rheumatoid arthritis and undifferentiated mixed connective tissue disease in her late 20s.Despite her medical background, Haffy’s diagnosis was delayed, highlighting the challenges of being a young woman with inflammatory arthritis and the importance of self-advocacy. She opens up about pregnancy, motherhood, cultural expectations, navigating work, and finally finding the right treatment that transformed her quality of life.This is an honest, emotional, and inspiring conversation about resilience, trust in your body, and making the most of the good days.

Key topics discussed

• Early symptoms of inflammatory arthritis and delayed diagnosis
• Living with rheumatoid arthritis in your 20s
• Being dismissed due to age and “normal” blood results
• The emotional impact of misdiagnosis and missed test results
• Pregnancy, fertility, and treatment decisions with inflammatory arthritis
• Balancing motherhood, chronic illness, and a demanding career
• Cultural attitudes toward illness and “just getting on with it”
• The importance of support systems and finding your “village”
• DMARDs, treatment side effects, and finally finding the right medication
• Learning to pace yourself and protect your mental health
• Advocating for yourself within the healthcare system

Memorable takeaways

• You are the expert in your own body.
• Trust your instincts, if something feels wrong, keep pushing for answers.
• Chronic illness doesn’t stop at joints; it affects your whole life.
• Pregnancy decisions with inflammatory arthritis are deeply personal.
• The right treatment can be truly life-changing.
• Good support, family, work, and healthcare makes all the difference.

Resources and links

• 🌐 Visit: inflammatoryarthritis.org
• 📩 Sign up for the Inflammatory Arthritis UK newsletter
• 🎥 Watch the episode on YouTube
• ⭐ Rate & follow the podcast wherever you listen

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/

Keywords: inflammatory arthritis, AI in healthcare, personalized medicine, early diagnosis, chronic illness, patient care, healthcare technology, living with arthritis, health podcast, medical advancementsIn this episode of Inflammatory!, Debbie and Katy dive into the growing role of artificial intelligence (AI) in healthcare and what it could mean for people living with inflammatory arthritis. They talk openly about the promise of AI, from helping personalise treatment to supporting earlier diagnosis, while also reflecting on the very real challenges of living with a long-term condition.Alongside the tech talk, the conversation keeps coming back to what really matters: human connection. Debbie and Katy explore why empathy, understanding and being truly heard can’t be replaced by algorithms, no matter how advanced they become. They also touch on the everyday realities of chronic illness, including fatigue, invisible symptoms and the importance of learning to advocate for your own health.The episode wraps up with a fun quickfire round, where the hosts share their honest thoughts on AI, data and the future of healthcare.Key topics:

• How AI has been around for decades and why it’s now becoming more visible in healthcare
• Why personalised medicine matters so much for inflammatory arthritis
• The life-changing impact of early diagnosis
• Why human care and compassion must stay at the heart of healthcare
• Fatigue and other invisible symptoms that are too often overlooked
• How AI could reduce trial-and-error when prescribing medications
• The importance of speaking up and advocating for yourself
• Why AI data needs to represent all patients, not just a few
• Living in the moment with a chronic condition
• How AI could give healthcare professionals more time to focus on patients

A thoughtful, honest conversation about balancing innovationwith humanity and putting people first.

Sound Bites

• "You know your body better than anyone."

• "We need to advocate for our health."
• "AI predictions: trust or side-eye?"

Keep connected

Please do rate, follow and download the podcast andsubscribe to our YouTubechannel

Follow us on social media: Search Inflammatory Arthritis UKon Facebook, Instagram, Bluesky and LinkedIn

Sign up to our newsletter at https://inflammatoryarthritis.org/

Disclaimer: Debbie and Katy are not medicalprofessionals. 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 personalhealth 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 anylosses, 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.

· Formore information, head to https://inflammatoryarthritis.org/

Keywords: chronic illness, spoon theory, energy management, school absences, NHS online hospitals, parenting, inflammatory arthritis, healthcare, pets, community support In this episode, Debbie and Katy discuss the challenges faced by parents of children with chronic illnesses, particularly in relation to school absences and the perception of illness by educational institutions. They delve into the concept of spoon theory, which illustrates how individuals with chronic conditions manage their energy levels throughout the day. The conversation also touches on the emotional support provided by pets, the potential impact of NHS online hospitals on patient care, and the importance of community engagement in navigating these challenges.Key Topics covered:

• Parenting, illness, and January fatigue
• School absence and chronic conditions (including JIA)
• Individual Healthcare Plans (IHPs)
• Spoon theory and energy management
• Pacing, boundaries, and prioritisation
• Medication-related fatigue
• Pomodoro technique and life “project management”
• GPS theory of life and non-linear progress
• Social media comparisons and chronic illness
• Pets as emotional support
• Friendships and chronic illness (preview)
• NHS online hospitals and digital healthcare concerns

Helpful Resources & Stay connected

• Individual Healthcare Plans (IHPs) – via the Healthcare in Schools Alliance
  http://healthconditionsinschools.org.uk/

• Follow Inflammatory Arthritis UK on Facebook, Instagram, LinkedIn, and BlueSky

• Please rate and review the podcast — it really helps others find us 💛
• Manage your spoons, pace yourself, and remember: my pace, not yours

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/

Keywords: New Year, holiday experiences, illness impact, darts, self-care, resolutions, FOMO, JOMO, inflammatory arthritis, charity goals #MyPaceNotYours, Empowering patientsIn this episode, Debbie and Katy reflect on their holiday experiences, discuss the impact of illness on celebrations, and share their newfound interest in darts. They celebrate the one-year anniversary of their podcast, emphasizing the importance of self-care and the shift from New Year's resolutions to more sustainable intentions. The conversation also touches on the concepts of FOMO and JOMO, the challenges of managing inflammatory arthritis in winter, the goals for their charity in the coming year and their theme for January #MyPaceNotYours.They finish by talking about confidence in healthcare appointments, the importance of remembering that you are the expert in your own body, and how mutual respect between patients, parents, and clinicians is key.Topics covered in this episode:

• Christmas, New Year & managing fatigue
• Cold weather, flares & winter symptoms
• One year of Inflammatory Arthritis UK
• Pressure of New Year’s resolutions
• “My pace, not yours”
• Incremental change vs unrealistic goals
• FOMO vs JOMO
• Self-compassion & pacing with IA
• Confidence in healthcare appointments
• Being the expert in your own lived experience
• Advocacy, awareness & sharing IA stories

Get Involved:

• Visit: inflammatoryarthritis.org
• Sign up to the newsletter for podcast updates, events & research opportunities
• Follow Inflammatory Arthritis UK on BlueSky, Facebook, LinkedIn & Instagram
• Subscribe to our YouTube channel: Inflammatory Arthritis UK
• Please rate, follow & share the podcast, it really helps others find us 💙

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/

This week’s podcast episode didn't go entirely to plan so we decided to have a shorter relaxed end-of-year chat with quite a few laughs and festive outfits (you can watch the episode on YouTube!). Make sure you listen right to the end of the episode to hear our bloopers and outtakes, they’re too good (and too embarrassing) not to share.

What we discuss:

• How exhausting this time of year can be (even when good things are happening)

• Debbie celebrating her Nan’s 100th birthday 🥳 — including a very special card from the King and Queen

• The reality of podcast bloopers, outtakes, and why our intros take longer than the actual episode

• Christmas onesies, sparkly jumpers, and making an effort (even when you’re knackered)

• Sending love to those celebrating Hanukkah and to friends in Australia during a difficult time

• Being very unprepared for Christmas

• How hard it is to buy presents for kids and partners who “don’t want anything”

• Moving house stress and a Christmas tree that’s up… but not decorated

• Why New Year’s resolutions don’t really work for us anymore

• Introducing our January theme: #MyPaceNotYours

• How do you set goals when your body doesn’t always cooperate?

• A look ahead to February, where we’ll be talking about love, friendship, and chronic illness

• A huge thank you to everyone who’s listened, followed, messaged, and supported us this year

Stay connected:

• We’d love to hear your thoughts for #MyPaceNotYours

• Follow, rate, and review the podcast wherever you listen

• Follow us on social media (and thank you for helping us grow!)

• Sign up to our newsletter at inflammatoryarthritis.org for updates, research, and events

We will be back in January with new episodes (and a postponed guest!). Until then, take care of yourselves, rest when you need to, and go at your pace. 💛

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/

Keywords: Darts, Fitness, Running, Mental Health, Community, Podcast, Christmas, Health Challenges, Strength Training, Autoimmune Disease

Debbie and Katy wrap up the year with a warm, funny, and reflective catch-up. Katy shares her unexpected victory at a work darts tournament and recaps her chilly final 10K of the year, complete with a painful lesson in running gear. Debbie talks about flare-ups, stress, and picking up her daughter’s cold while trying to keep everything in balance.

Together, they look back on their favourite episodes, the importance of strength training, mental health, and how hard it can be to juggle fitness with chronic illness. They also celebrate listener feedback, their growing global audience (hello Australia and Norway!), and the power of lived experience within the inflammatory arthritis community.

The hosts chat about changing Christmas party trends, from darts to aquariums, and share some exciting plans for the podcast in the new year, including new guests, new trustees, and more community-focused content.

Key Topics

• Katy’s Flight Club darts triumph

• Running injuries, rest, and balancing multiple sports

• Debbie’s flare-ups, stress, and festive-season colds

• Strength training vs endurance and why it’s hard to balance both

• Reflections on mental health, vulnerability, and community support

• Spotify Wrapped listener stats

• Christmas party trends and alcohol habits

• New podcast plans and growing the charity’s reach

Episodes Mentioned

• Strength Training (with Matt)

• 1% Better

• Sound System

• You Are Not Alone (mental health deep dive)

• Sex & Relationships

• Our Journey Begins

• Can You Keep Your Humour?

• Alcohol Episode

• Guest episodes with James, Rachel, Adam, and Sarah

Follow us on social media: Bluesky, Facebook, Instagram,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/

James Hollens joins us on Inflammatory! to share his honest and emotional journey of living with two types of inflammatory arthritis, whilst keeping his sense of humour, it is a very funny and honest episode. He talks about the sudden joint pain that hit in his early twenties, the months of misdiagnoses, and the moment a rheumatologist finally recognised rheumatoid arthritis. At just 21, James had to face the shock, stigma, and mental toll of a lifelong diagnosis far earlier than he ever expected.

His story then takes us to China, where a new wave of intense back pain landed him in an emergency hospital and a suspected diagnosis of ankylosing spondylitis. Navigating a foreign healthcare system, language barriers, and a specialist shutdown during Chinese New Year made the experience even more daunting. Returning to the UK brought answers, faster treatment, and eventually a confirmed AS diagnosis, followed by a long recovery supported by biologics, physio, and major lifestyle shifts.

We also dive into the emotional side of chronic illness,from pandemic isolation to the mental health battles many patients face. James shares how lock-down volunteering grew into a thriving social media presence where he raises awareness, builds community, and spreads humour and honesty, including his popular “prick & pic” travel series. He closes with heartfelt advice to his younger self about shame, vulnerability, and finding support sooner.

Key Topics Covered

• Early symptoms and repeated misdiagnoses

• Receiving an RA diagnosis at age 21

• Living abroad and a second suspected diagnosis (AS)

• Navigating a foreign medical system and language barriers

• Returning to the UK for answers and treatment

• Recovery with biologics, physiotherapy, and lifestyle changes

• Mental health challenges and pandemic isolation

• How volunteering led to chronic illness advocacy online

• Travelling with medication & the “prick & pic” series

• Advice for his younger self:

  • don’t be ashamed

  • open up sooner

  • find community

  • care for mental & physical health

  • stop fighting yourself

Connect with James: Instagram: @JamesHollens

Connect With Us: Follow Inflammatory Arthritis UK and the podcast on: Instagram | BlueSky | Facebook | LinkedIn

💬 Please like, share, and comment to help us reach more people.
⭐ And don’t forget to rate and follow the podcast wherever you listen!

Coming Up

We have two more episodes before our festive break,including another special guest and our reflections on the past year—plus our favourite moments!

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/