World AS Day 2025 - Making the invisible visible: Kelly Fraser’s story

This Saturday, 3 May, people around the world will come together to recognize World AS Day and raise awareness of axial spondyloarthritis (axSpA). It will be an important opportunity to shine a light on the experiences of those living with this disease and amplify the need for earlier diagnosis, better support and greater understanding.

My own journey with axSpA began in my late teens. The onset of symptoms was sudden, and the pain was intense, particularly in the mornings and during periods of inactivity. I sought help immediately but, despite my self-advocacy, it took seven years to receive a formal diagnosis.

My age and gender were significant barriers, and initially clear scans made it even harder for healthcare professionals to recognize what I was experiencing. I remained invisible. So often we associate axSpA with back pain but, for many years, I have suffered terribly with pain in my cervical spine and where the ribs join the breastbone. The delay to my diagnosis had a significant impact on my emotional well-being and for years I doubted the validity of my pain. Even after diagnosis, it took many years for me to fully accept my condition as part of my life. Through therapy and finding a physician who treats the person, not just the condition, I’ve been able to honor and respect the needs of my body.

Living with axSpA has had a profound impact on my daily life. For years I found it almost impossible to lie down, so sleeping was a real challenge. During disease flares I was unable to dress independently, turn my head to drive my car, lift heavy bags or pull on heavy doors. At my worst, I couldn’t even press on a knife and fork to cut my food. I found it difficult to enjoy anything. The more uncomfortable I became, the less present I was. Simple things like sitting at a restaurant table or going to the cinema were a big challenge.  

Over time I have found new ways to manage my condition. Yoga Therapy has significantly reduced my frequent and prolonged disease flares. Step by step, my Yoga Therapist has supported me to replace old, unhelpful patterns held in the body, breath and mind with new ones. She designs a personalized daily practice which has become a ritual that continues to sustain me. Fatigue continues to be a challenge for me, but I have found that early sleep helps, so I avoid late nights. I also keep a positive diary to focus in on small moments of joy and pleasure.  

One of the most important lessons I have learnt through my journey is the power of self-advocacy. Nobody knows your body better than you do, so never doubt your own truth. When someone says they are in pain or struggling, they should be heard and trusted. Compassionate care, where the person is seen beyond their diagnosis, can make a life-changing difference.

Support also means education. For friends and family members who want to support, take the time to learn about axSpA rather than placing the burden of explanation on those living with it. Empathy, flexibility, and listening are vital.

Every day is AS Day to me, but World AS Day specifically is a chance to amplify awareness of axSpA globally and help reduce the delay in diagnosis. Days such as this help bring patient voices to the forefront and spark a global conversation that can help transform the future for people living with this incurable disease.  

The featured author was compensated for their participation. The content of this article has been reviewed by UCB.