Getting the right diagnosis changed my life
Like so many Canadians, Marilyn Walsh had her life plans derailed by the devastating effects of arthritis. Fortunately, a proper diagnosis and treatment helped correct years of pain and suffering, and now Marilyn is devoted to helping others.
Marilyn, a resident of Hamilton, has a passion for the medical field. She graduated from Mohawk College’s nursing program, but unfortunately the career she loved was short-lived thanks to the onset of ongoing back pain and stiffness that made simple daily tasks almost unbearable. She sought help but it wasn’t until she was 35, after 12 years of living with the pain and mystery of her condition, that Marilyn would finally receive a correct diagnosis: ankylosing spondylitis (AS), an aggressive form of inflammatory arthritis that primarily targets the spine.
At the time of her diagnosis, Marilyn’s condition had deteriorated so much that she could barely move her head. She also had severe pain and swelling in numerous other joints throughout her body. She moved like the Tin Man from the Wizard of Oz, but there was no ‘oil can’ in sight. Every breath felt like her ribs were breaking.
While much of the damage done to her body over those years is irreversible, hearing that she had an incurable chronic disease still came as somewhat of a relief.
“As odd as it sounds, that was one of the best days of my life because it meant that after all those years of suffering and having my mental health and credibility questioned, I had the validation that I did, indeed, have a significant physical condition and could, therefore, begin proper treatment.” It also meant Marilyn could start putting together a concrete action plan to build her coping skills and regain some of her mobility and quality of life.
There was a long way to go: prior to her diagnosis, there wasn’t an aspect of Marilyn’s life that wasn’t affected by arthritis. The inability to work impacted her standard of living, and left her feeling isolated from the world and people outside her home. Even sitting for long periods was difficult, which made typical social engagements like dinner or a movie very difficult. From the start of her day to the end, ordinary activities most people take for granted were extremely challenging. Through it all, she also found that people can be judgmental and insensitive when they don’t understand someone’s special needs. The fact that her disease was largely invisible to others made them question her integrity and credibility. It was difficult to live with, but it did teach her to become much more understanding of other people’s challenges.
With an accurate diagnosis finally in hand and a more targeted treatment plan that included biologics, Marilyn’s quality of life received a sudden and lasting boost.
Now in her 50s, Marilyn’s condition has improved to the point that she has been able to fuel her passion for the medical field, volunteering as a patient advocate and demonstrating basic musculoskeletal examinations to medical students. Marilyn also sits as a board member and branch leader for the Canadian Spondylitis Association (CSA), where she represents, supports and educates people living with AS and other forms of spondyloarthritis. She is also very active with the Arthritis Society, participating in the Walk for Arthritis each year since 2011. Additionally, because life happens regardless of what you’re going through, Marilyn balances her disease and all this activity while being the sole caregiver for her elderly parents.
“Arthritis won’t stop me from living life,” says Marilyn. “I sacrificed a great deal when I was younger, but now that my condition is stable I strive to give back to my community and enjoy time with friends. Most importantly, I support my elderly parents who were there to support me during some very trying years. I am very grateful to have the ability to do these things at this point in my life.”