▶ Watch: Kaleigh AxSpA Story, and how she takes it five minutes at a time.
A candid conversation hosted by Brenda Dauder, Executive Director of the Canadian Spondyloarthritis Association.
About the Conversation
In this video, Canadian Spondyloarthritis Association executive director Brenda Dauder speaks with Kaylee, a young adult recently diagnosed with axial spondyloarthritis (axSpA). Kaylee shares her years-long journey from unexplained lower back pain and fatigue to finally getting a diagnosis, and the emotional impact of living with an invisible, chronic illness. She talks about how the disease has affected her work, hobbies, mental health, and identity—but also how support, self-advocacy, and self-compassion have helped her adapt. Through her story, she offers validation and practical encouragement to others who are newly diagnosed or still searching for answers.
Highlights from Kayleigh’s Story
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Symptoms started early and were misunderstood
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Chronic lower back pain began around age 19–20 while working as a PSW
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Pain and fatigue were dismissed as “just sciatica” or normal wear and tear
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Years of appointments, physiotherapy, and medications with little relief
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Diagnosis brought both clarity and reality
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Took 4–6 years to finally receive an axial spondyloarthritis (axSpA) diagnosis
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Diagnosis felt validating—proof the pain was real
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Also bittersweet, knowing it’s a lifelong condition at a young age
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Impact on work and everyday life
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Symptoms affected her ability to work, leading to job loss during a stressful time
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Now has to choose work that fits her physical limitations
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Daily tasks require pacing—some chores get done, others wait, and that’s okay
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Adapting hobbies to her new reality
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Had to let go of high-impact goals like learning to snowboard
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Still enjoys art but adapts by alternating sitting/standing and taking breaks
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Deals with finger swelling by modifying how she holds her stylus or pen
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Learning to listen to her body
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Pain, stress, and emotions are closely linked—pushing through leads to flare-ups
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Now prioritizes rest without guilt, recognizing that fatigue is a signal, not a weakness
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Support makes a difference
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Her partner and family help validate her experience and encourage self-advocacy
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Being invited to share her story shows that every experience is worth being heard
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A story bigger than one diagnosis
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Kaylee’s journey reflects what many with invisible illnesses face
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Spondyloarthritis isn’t rare—more than half a million Canadians live with it
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Community, education, and persistence are key to living well with chronic disease
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Advice from Kaylee
Kaylee reminds us that living with a new diagnosis can feel overwhelming, but you don’t have to face it all at once. Her message is rooted in self-advocacy, patience, and learning to listen to your body. Here’s what she wants others to know:
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You deserve better than constant pain.
Keep pushing for answers and treatment that help—your comfort and quality of life matter. -
Listen to your body without guilt.
If you need rest, take it. Pain and fatigue are signals, not failures. -
Break the day into small steps.
When tasks feel overwhelming, focus on just the next five minutes. Small actions build progress. -
Adapt instead of giving things up.
You may need to do things differently, not stop doing them altogether.
Her biggest takeaway? You’re stronger than you think. With support, persistence, and self-compassion, it’s possible to build a life that works with your condition—not against it.