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Beyond Awareness Days
Awareness days come and go, but life with inflammatory arthritis shows up every single day, especially when your hospital appointments disappear into the system. In this episode, Debbie and Katy talk candidly about the reality of being “lost in the system”, from missed biologic reviews and last‑minute phone calls to the emotional and practical fallout when admin goes wrong. Alongside the chaos of real life, surgery recovery, grief, family pressures and the mental load of chronic illness . They also explore the many awareness days and weeks in May, from Axial SpA to mental health, fibromyalgia, auto‑inflammatory conditions, and International Nurses Day and why awareness shouldn’t be limited to a calendar date. Life with IA is every day, and so is the need for understanding, compassion, and community. Key Topics The reality of hospital admin and biologic funding renewals Navigating unexpected appointment changes Surgery recovery, anaesthetic effects, and medication timing Grief, family responsibilities, and emotional load Mental health and long‑term conditions The importance of self‑compassion Awareness days in May: what they mean and why they matter Axial SpA, auto‑inflammatory conditions, fibromyalgia, and arthritis awareness The role of nurses and consultants in IA care Misdiagnosis and overlapping symptoms Why awareness should extend beyond awareness days Keywords inflammatory arthritis, IAUK, biologics, rheumatology, Axial SpA, psoriatic arthritis, fibromyalgia, auto‑inflammatory disease, mental health, chronic illness, grief and illness, patient experience, arthritis awareness month, nurses day, long‑term conditions, self‑compassion, lived experience, inflammatory podcast Awareness Days & Weeks Mentioned Mental Health Awareness Week Axial Spondyloarthritis Awareness Day — 2 May Fibromyalgia Awareness Day — 12 May International Nurses Day — 12 May Auto‑Inflammatory Awareness Day — 20 May Arthritis Awareness Month (US) Mental health support: If you are struggling or need help with your mental health,below is where you can find support: · Samaritans https://www.samaritans.org/ 116 123 always open · Mind https://www.mind.org.uk/ 0300 102 1234 Open 9am to 6pm weekdays · Shout https://giveusashout.org/ Text Shout to 85258 open 24/7 Episodes referenced: Episode 5 You are not alone : Mental health discussion Interviews with Rachell Smith, Adam Newton, James Hollens and Charlie Robards Episode 56 with Dr Rosemary Hollick Episode 52 with Andy Kelly good practice of mental health services Connect with us: We love hearing from you, your stories, your experiences, your questions.Follow, like, share and comment to help us reach more people living with inflammatory arthritis. Instagram Facebook LinkedIn Bluesky Newsletter: sign up at inflammatoryarthritis.org If you'd like to share your lived experience, email us at info@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/
