Beyond Stiffness: My Life With Rheumatoid Arthritis
I was about 23 when I began experiencing joint pain.
At the time, I was working as an esthetician, giving massages, facials and pedicures, and the physical work left me aching after every shift. So much so that on the bus ride home, I’d cool my hot and aching hands on the windows. Unfortunately, it wasn’t just muscle soreness. I soon started experiencing joint pain, swelling in my hands, feet and knees, and extreme fatigue, among other symptoms.
This list of symptoms only grew longer after I had my son at 26. I now know this is common for women with rheumatoid arthritis (RA)—and that women, in general, are two to three times more likely than men to be affected by the condition—but for me, it was another three years before I was diagnosed. “It’s just hormonal” or “exercise more” were the frustrating responses I kept hearing. Meanwhile, my immune system was attacking my joints and body.
Importance of timely diagnosis
My delayed diagnosis with this life-altering yet overlooked condition fuelled my passion to become an advocate and raise awareness. It shouldn’t take so long for people to get diagnosed. Ironically, I had an aunt who lived with RA for decades. However, due to her age, deformed hands, immobility and constant pain, I always assumed it was osteoarthritis and common side effects of aging. The truth only hit home much later, at work, when the pain became unbearable and a co-worker mentioned RA as a possibility. That’s when the pieces clicked.
“Rheumatoid arthritis is a polysystemic autoimmune disease that can affect not just joints, but also the blood vessels, skin, lungs and heart. It can appear anytime in someone’s life,” says Dr. Stuart Wiber, MD, FRCPC, a Calgary-based rheumatologist who specializes in treating arthritis and other autoimmune or rheumatologic diseases. “A person’s immune system is automatic and has a memory. In rheumatoid arthritis, the immune system makes a mistake and thinks the body is something it needs to attack. And once it starts, it will never stop. The dysregulation of the immune system is complex and cannot be reprogrammed. There is no cure. This is very daunting for patients, but the disease is very treatable. Treatment has advanced tremendously in the last 30 years and the disease can be inducted into deep remission with good adherence and tolerance to medical therapy. Treating early and aggressively with medications shows the highest evidence for best acute and long-term patient outcomes.”
I’ve learned to accept that my case is severe, and the importance of timely diagnosis is why it feels so important to share my story.
“I felt really alone”
Back when I was first diagnosed, I had never spoken to someone with my condition. I remember feeling really isolated, when in reality, there are more than 375,000 of us living with RA in Canada. A lot of my advocacy is just to give people that opportunity to talk to someone who gets it.
In the nearly 10 years since I was diagnosed, I’ve learned how important it is to access peer support and to advocate for yourself. Today my care team includes my rheumatologist; my physiotherapist; an occupational therapist who helps me with strategies for daily tasks, including cooking and running errands; social workers; and others.
Now, I understand why it’s important to talk about these things. I used to feel shame about everything that was wrong with me. Today, I wear my disability as a patch on my battle vest. Hearing from patients saying, “I was just diagnosed and read what you wrote,” or caregivers who tell me, “I feel like I understand the condition now and can help my friend or spouse,” trumps everything.
This article was made possible with the support of AbbVie. All opinions expressed are those of the writer and interviewee, and readers should always seek personal medical advice from their doctor.