05/26/2023
In recognition of the Canadians affected by axial spondyloarthritis (AxSpA), we’re sharing Dr. Élie Karam’s story.
—
“It’s just a sprain. It’ll go away. It’s nothing.”
I thought I simply had a back sprain from playing squash. I dismissed the painful inflammation that began to spread from my back to my neck and shoulders. I became frustrated and annoyed at the limitations these flares placed on me. I couldn’t perform at my best. Sometimes I couldn’t be intimate with my wife. Sometimes I couldn’t do surgery. Essentially, I felt like an old man, even though I was in my early thirties and the prime of my life and career.
The ironic part was that I was an orthopaedic surgery resident surrounded by experts in the musculoskeletal field. And yet, for two years, we all missed the diagnosis. I have non-radiographic axial spondyloarthritis (nr-AxSpA), a form of axial spondyloarthritis (AxSpA). Ankylosing spondylitis (AS) is another form of AxSpA. AxSpA is a chronic, progressive disease that causes joint inflammation, leading to back pain and stiffness. In its most severe form, one may experience fusion of the spine. Because of my own personal and painful experience, I began to consider: “If I missed my own diagnosis and suffered for two years, it must be unbearable for others who may find themselves battling this invisible disease for close to a decade before receiving a diagnosis.”
People living with AxSpA spend an average of seven to nine years from symptom onset to diagnosis. That’s completely unacceptable. We must do better!
For those living with chronic pain from AxSpA, my advice is to journal everything. Journal your pain. Journal your symptoms. Then, when you meet with your rheumatologist and they ask how many days in the last month you were incapacitated by pain, you can provide an objective answer, even if you happen to be feeling okay on that particular day.
I can’t stress enough the importance of acknowledging that living with AxSpA is hard. Have compassion for yourself, but also empower yourself with knowledge and advocate for yourself. An earlier diagnosis and treatment of AxSpA can help prevent fusion of the spine.
It’s possible to live very well with this disease and to manage chronic pain. As a physician, experiencing this disease first-hand really changed my perspective on chronic pain and the patient journey, and I encourage people to advocate for themselves.
A good first step is to go to sparthritis.ca, where you’ll be able to find a wealth of validated information by top experts in the field as well as great tools and resources. Others are here to help you on your journey. You are not alone.
***
The information presented here is intended for educational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider for personalized guidance regarding your health.