Georgina first started experiencing stiffness, back pain, and general discomfort in her early twenties. Throughout her thirties and forties, she dealt with chronic pain and stiffness in her spine and neck, along with severe Achilles tendonitis, plantar fasciitis, and enthesitis in her ribs, elbows, knees, and hips. She tried NSAIDs, physiotherapy, and countless other treatments, but nothing made a significant difference.
She also has Crohn’s disease, which went undiagnosed for a long time. Over the years, she was referred to three different rheumatologists in the UK and Canada before finally seeing a fourth specialist. After decades of living with SpA symptoms, she was finally diagnosed with AS in 2020 at the age of 52. Looking back, Georgina believes early detection would have made a huge difference in her quality of life.
Challenges on the Path to Diagnosis
Over the years, Georgina heard dismissive comments like:
“It can’t be that bad.”
“Women don’t get AS very often.”
“Your X-ray looks fine, so you don’t have it.”
The first time she had uveitis, she was told it was viral, even though she had decades of AS symptoms, a family history of the disease, and tested positive for the HLA-B27 marker.
Life After Diagnosis
Not being diagnosed for so long had a huge impact on Georgina, both physically and emotionally. But since finally getting diagnosed, her life has changed for the better. It hasn’t been an easy road, and she still has bad days and flare-ups, but things have improved significantly.
Starting biologic treatment shortly after her diagnosis made a huge difference. Her symptoms eased enough that she could even think about exercising again, something that had felt impossible for years. Before treatment, Georgina had to give up many activities, but now she’s slowly reclaiming them and even trying new ones. Being able to do these things after so many years of limitations still feels surreal and overwhelming at times. After spending decades feeling like her body was working against her, it’s incredible to finally experience what it can do. Last year, she participated in a 3km open-water swim race, something she’s incredibly proud of. After so many years of limitations, this was a huge achievement, and Georgina is excited to do it again this year.
When Georgina was first diagnosed, she was in rough shape—constantly in pain, stiff, and exhausted. Now, she manages her condition with a mix of biologic treatment and low-impact activities like dance, yoga, swimming, pilates, and nordic walking.
One of the biggest game-changers for Georgina has been Yoga for AS. It has transformed how she manages her symptoms, helping her build strength, flexibility, and overall well-being. Thanks to these improvements, she’s not only returned to activities she loves but also discovered new ways to move and stay active, particularly pilates and dance.
Emotional Challenges
The hardest part for Georgina was not being diagnosed for so long. She rarely talks about her condition because, like many people with invisible illnesses, she’s been ignored or dismissed too often. Axial spondyloarthritis is complex. Symptoms vary widely, and disease progression is unpredictable. Most people don’t realize that things like eye inflammation, Crohn’s disease, sacroiliac pain and stiffness, and tendonitis can all be connected.
Georgina understands the depression and fatigue that come with chronic pain, stiffness, and exhaustion. Connecting with supportive communities, like her local support group and the Yoga for AS community, has been a game-changer. It’s invaluable to have a space where people truly understand your struggles without needing constant explanation.
Advice for the Newly Diagnosed
Georgina believes a diagnosis is the beginning of your journey, not the end. When she was diagnosed, she already knew about AS because her father had it, but for many people, it comes as a complete shock. The upside is that it finally provides answers, sometimes after years or even decades of unexplained symptoms, so you can start managing the disease more effectively.
The key is having access to good information. Finding reliable sources is essential, and Georgina highly recommends the Canadian Spondyloarthritis Association website for accurate information, support groups, and resources to help navigate life with SpA.
Hope for the Future
Knowing that effective medications exist, and that awareness of SpA is growing keeps Georgina going. That’s why she shares her story, to help others get diagnosed sooner and avoid the struggles she went through.
She also feels incredibly fortunate that the first biologic she tried worked well for her. Georgina knows that’s not the case for everyone, and she hopes to see more treatment options, greater awareness, and better diagnostic tools become available in the future.
Supporting Others
As a support group leader, Georgina facilitates both virtual and in-person groups for people with all types of SpA. These groups provide a safe space to share experiences, offer emotional support, and exchange practical tips for managing the condition.
Having lived with AS for decades, Georgina knows how isolating it can be. Her goal is to help others navigate the challenges of living with SpA and find the support they need.
A Journey of Resilience and Hope
Georgina’s three-decade journey to diagnosis reflects the challenges many face with autoimmune conditions, particularly women whose symptoms are often dismissed or misunderstood. Today, as she swims, dances, and leads support groups, Georgina embodies resilience and hope. By sharing her experiences, she is turning her years of struggle into a beacon for those newly diagnosed. Her message is clear: while the road may be difficult, with proper diagnosis, treatment, and community support, there is life beyond the limitations of spondyloarthritis.