Arun: AS, Work & A Rare Side Effect

"When you have a health condition, it can feel really isolating."

Living with ankylosing spondylitis (AS) changed the course of Arun's life in ways he never expected. In this week's episode of Inflammatory!, Arun shares his journey from a successful career in finance to becoming a leading voice in disability policy and advocacy.

After developing AS in his twenties, Arun faced an incredibly rare side effect from a biologic treatment that left him unable to recognise loved ones, remember everyday tasks or continue working. At one stage he had to relearn basic activities, setting himself goals such as ordering a sandwich independently or navigating public transport again.

We discuss:

🔹 The early symptoms of AS and his diagnosis journey
🔹 The rare treatment side effect that changed everything
🔹 Living with cognitive impairment and rehabilitation
🔹 Managing health anxiety after serious medication side effects
🔹 Access to Work, workplace adjustments and staying in employment
🔹 Applying for PIP and navigating the appeals process
🔹 The hidden financial costs of living with a long-term condition
🔹 Why lived experience must be at the heart of policy decisions
🔹 Finding purpose, confidence and new hobbies after diagnosis

Arun also shares how gardening, pottery and disability advocacy helped him rebuild his confidence and discover a new direction in life, reminding us that while inflammatory arthritis can change our plans, it can also reveal strengths we never knew we had.

Memorable Quotes

"My goal last year was to go to Pret and order a sandwich by myself."

"I thought policy is the way that we can change lots of people's lives."

"Focus on what you can do, and what you can improve and change."

"Sometimes being kinder on yourself is really important."

Resources Mentioned

• Access to Work https://www.gov.uk/access-to-work
• Personal Independence Payment (PIP) https://www.gov.uk/pip
• Disability Policy Centre https://thedisabilitypolicycentre.org/
• Scope https://www.scope.org.uk/
• Inflammatory Arthritis UK https://inflammatoryarthritis.org/

Keywords

Ankylosing spondylitis, AS, axial spondyloarthritis, biologics, biologic side effects, rare medication side effects, inflammatory arthritis, disability benefits, PIP, Access to Work, disability policy, chronic illness, employment and disability, rehabilitation, brain fog, cognitive impairment, chronic illness advocacy, disability rights, living with ankylosing spondylitis, inflammatory arthritis podcast.

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/