Summary

Inflammatory arthritis doesn’t just affect the person living with it, it reshapes the daily lives, emotions, plans, and futures of the people who love them. In this heartfelt episode, Debbie and Katy explore the hidden impact on partners, children, siblings, and wider family members. Drawing on powerful listener submissions, they discuss the emotional load, the financial strain, the invisible nature of the condition, and the resilience that families build together.

As Debbie notes, “our life revolves around how she feels that day… everything from plans to simple things like going for a walk dependso n pain levels.” And as one listener shared, “it’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

This episode is honest, validating, and deeply human, a reminder that chronic illness is always a family story.

Keywords

inflammatory arthritis, family impact, chronic illness,relationships, partners, care giving, fatigue, invisible illness, financial planning, resilience, emotional wellbeing, IA community, lived experience

Key Topics Covered

• The unseen emotional load on families
• The invisibility problem
• Daily life shaped by pain and fatigue.
• Financial and retirement planning challenges
• Identity, independence, and shifting roles
• Resilience and unexpected closeness
• Communication as the anchor
• Letting loved ones live their lives too
• The need for better support for families

Stand out Insights

• “Our life revolves around how she feels that day… everything depends on pain levels.”

• “Sometimes I don’t know whether to encourage her to push through or tell her to rest. I worry about getting it wrong.”

• “It’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

Useful Resources Mentioned

• Citizens Advice — guidance on benefits, employment rights, and financial planning
• PIP & Universal Credit — support options for people living with long‑term conditions
• IAUK Newsletter — updates on research, events, and community stories
• IAUK Social Channels — Facebook, LinkedIn, Instagram, BlueSky
• Email — info@inflammatoryarthritis.org

Stay Connected

Join the conversation, share your experiences, and help us shine a light on the realities families face. Sign up for updates at inflammatoryarthritis.org and follow us on social media.

This episode was funded by UCB, who had no involvement in the development of the content or any associated materials.

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 human conversation, Debbie andKaty sit down with Andy Kelly - physiotherapist, patient advocate, EULAR representative, and trustee of Inflammatory Arthritis UK to explore what it really means to live with psoriasis and psoriatic arthritis.

Andy shares his journey from first symptoms at university,through years of misdiagnosis, to navigating the emotional and physical realities of a fluctuating autoimmune disease. He opens up about stigma, parenting with a long‑term condition, the impact of flares, and the transformative role of psychological support after an incident at a local swimming pool left him in a bad place. He also reflects on his work in research, patient advocacy, and the growing movement to involve lived experience in shaping future priorities.

This episode is full of honesty, humour, and practical wisdom, from navigating treatment pathways to understanding fatigue, exercise, and self‑compassion.

Key Topics Covered

• Andy’s early symptoms and long road to a psoriasis diagnosis

• How psoriatic arthritis developed and why he didn’t recognise the signs

• The emotional impact of visible skin disease, including a painful experience at a swimming pool

• The role of dermatology–rheumatology joint clinics

• How psychological support helped him accept his diagnosis

• Starting biologics and navigating treatment options

• Living with flares: unpredictability, pain, fatigue, and the challenge of “looking fine”

• Parenting with a long‑term condition and supporting children who develop psoriasis

• Exercise, movement, and the realities of managing energy

• Andy’s work with BRITPACT, the Psoriasis Association, EULAR, and the James Lind Alliance

• Why patient involvement in research is changing the landscape

• The importance and difficulty of self‑compassion

  Standout moments:

• “Psychological support was a game changer — accepting what it was, accepting the diagnosis.”

• “You don’t look ill… but I’m in agony.”

• “Self‑compassion is the hardest thing. If you don’t slow down, it will make you.”

Resources & Links

• • James Lind Alliance https://www.jla.nihr.ac.uk/
  • Inflammatory Arthritis UK: inflammatoryarthritis.org

• Follow us on BlueSky, Instagram, LinkedIn, and Facebook

• Sign up for our newsletter for updates, stories, and community events

This episode was funded by UCB, who had no involvement in the development of the content or associated materials.

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, Debbie and Katy sit down with the brilliant and endlessly determined Charlie Robards, who was diagnosed with axial spondyloarthritis at just 18 - right as he was chasing his dream of becoming a professional sportsman. Now 50, Charlie reflects on three decades of navigating pain, ambition, parenting, relationships, and the emotional weight of a lifelong condition.What unfolds is an honest, funny, and deeply human conversation about resilience, identity, and the surprising places we find strength. Charlie’s story is a reminder that life doesn’t always go to plan, but it can still be full, joyful, and meaningful.“I am who I am, work with what you’ve got rather than fight to be something you’re not.”Key topics:

• Impact of being diagnosed at 18
• Sport as a lifeline
• Flares, pain & the hot/cold debate
• Weather, mood & mobility
• Talking to partners, friends & coaches
• Parenting with AxSpA
• Mental health & suppressed emotions
• Biologics & uveitis
• Writing Hitting AS for Six
• Advice to his younger self

Key words: Axial spondyloarthritis, AxSpA, ankylosing spondylitis, chronic pain, sport and disability, cricket, resilience, uveitis, biologics, flare management, men’s mental health, invisible illness, parenting with chronic illness, acceptance, pacing, inflammation, NASS, lived experience.Resources and links:

• Hitting AS for Six — Charlie’s book supporting NASS
• • National Axial Spondyloarthritis Society (NASS)
  • Inflammatory Arthritis UK (IAUK) — resources, stories, and support
  • Newsletter sign-up: inflammatoryarthritis.org
  • Find us on BlueSky, Instagram, Facebook & LinkedIn

  This episode was funded by UCB, who had no involvement in the development of the content or any associated materials.

  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/