Welcome

 My Journey with Rheumatoid Arthritis: Finding Strength Through Uncertainty

A Life-Changing Diagnosis

Thirty years ago, I sat in my rheumatologist’s office for the first time, and her words still echo in my mind: “Your RA is very severe, affecting all your joints, from your jaw to your toes.” It was a moment that catapulted me into an unfamiliar world, where my hands were stiff, swollen, and sore, and my feet had already begun to show signs of changes, with claw and hammer toes. Even walking became a challenge, but the reality of my situation went beyond the physical pain.

The Impact on Family and Future Plans

At that time, my husband and I were planning for the future, hoping to have another child—a girl, perhaps. However, my rheumatologist cautioned me that the medications I would need to take could make pregnancy impossible. The rapid changes in my health forced us to shift our focus. We had to come to terms with the unpredictable nature of living with a chronic disease. The plans I had made, like returning to work once my youngest son started school, had to be reconsidered. My diagnosis affected not just me but my entire family, and together, we had to navigate this new reality.

The Early Stages of Treatment

In the beginning, my rheumatologist and I met every six weeks. Each appointment was thorough—she would examine all my joints for redness, swelling, stiffness, alignment issues, and any bony changes. The medications I started taking were a far cry from the Tylenol I had been using to manage headaches. Suddenly, I was on a regimen that included a wide array of arthritis medications, some of which required six weeks to two months to determine their effectiveness. Alongside this, I underwent regular bloodwork to monitor the ongoing issues with my arthritis.

A Sudden Change in Care

After several months, during what I thought would be a routine appointment, my rheumatologist informed me that this would be our last visit. She was leaving her practice to pursue arthritis research. The news left me feeling overwhelmed. How could I move forward without the person who had been guiding me through this challenging time? She advised me to let my GP know where I wanted my medical files sent.

Seeking New Support

Fortunately, I had been involved in the Arthritis Society’s self-management program for some time, and it had become a lifeline for me. When I asked for recommendations for a new rheumatologist, one name kept coming up. Based on what I heard, I told my GP who I wanted to see next. My new rheumatologist was incredibly knowledgeable and compassionate. She took the time to examine all my joints, checking for redness, swelling, joint changes, pain, and stiffness.

During one of our appointments, she told me that I had the most severe case of RA she had ever encountered. But by then, I had learned enough through the Arthritis Society that I felt confident in describing my symptoms and managing my condition.

Becoming a Patient Partner in Arthritis

The Arthritis Society had been so beneficial to me that I decided to give back by teaching their self-management program. The experience equipped me with a vocabulary to describe my condition and helped me better understand my arthritis. After an assessment with my new rheumatologist, she asked if I would be interested in joining a group of patients living with arthritis to become a Patient Partner in Arthritis. This role would involve extensive training to educate healthcare professionals on how to better care for their patients—knowledge imparted by those who live with the disease themselves.

It was an opportunity I couldn’t pass up. Not only did it allow me to share my experiences, but it also empowered me to help others navigate their own journeys with rheumatoid arthritis.

Reflections on the Journey

Looking back, the journey hasn’t been easy, but it’s taught me the importance of resilience, education, and community support. Living with RA is unpredictable, but with the right resources and a strong support system, it’s possible to lead a fulfilling life. My experience is a testament to the power of staying informed, advocating for yourself, and finding strength in the face of uncertainty.