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 realities of recovering from surgery, 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: Suicidal thoughts can be distressing, you can find help here: 

·       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

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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/