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 believed
• Flu and COVID vaccinations
• Seasonal changes and symptom management
• Healthcare language and patient experience
• Patient advocacy and raising awareness
• Reflections on Simon's story
• Medication side effects and delayed diagnosis
• Living well, pacing and managing flares
• Resilience and achieving your dreams
• Supporting Inflammatory Arthritis UK through EasyFundraising

Key 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/