Chapter 1: The Diagnosis Experience

The day I received my diagnosis of rheumatoid arthritis is etched in my memory.

Photo by LOGAN WEAVER | @LGNWVR on Unsplash

I was just 28, thriving in my career and filled with ambitions. My life was vibrant, filled with spontaneous adventures and an unyielding desire to succeed. However, everything changed the moment my doctor delivered the news: “You have rheumatoid arthritis.”

The rain outside matched the turmoil in my mind as I sat in the clinical office. The doctor detailed the implications of rheumatoid arthritis, while I recalled the persistent stiffness and pain I had brushed off as mere stress or aging. The notion of having an autoimmune disease was overwhelming.

Initially, I found myself in denial. “This can’t be happening to me; I’m too young for this,” I thought as I walked out with a prescription for methotrexate and a pamphlet filled with information. The only question that haunted me was, “Why me?”

I wish someone had informed me that grieving was part of the process—mourning the life I envisioned for myself and acknowledging the uncertainty of my future. Instead, I adopted a facade of strength, continuing to work and socialize while crumbling inside.

One evening, my best friend Sarah visited. She sensed something was off and, after a heartfelt conversation, I expressed my fears. “I’m scared, Sarah. I don’t know how to cope with this.” Her comforting words, “You don’t have to go through this alone,” marked a pivotal moment. I understood I needed to embrace support from those around me.

I wish I had realized sooner that I wasn’t alone in this battle. Requesting assistance is a sign of strength, not weakness. There were days I struggled to complete simple tasks like opening jars or buttoning my shirt. Though it was difficult, I learned to rely on my support network, including friends, family, and colleagues.

Then came the challenge of finding the right medications. The process involved a series of trials, often accompanied by harsh side effects. Some days felt like the side effects were more debilitating than the illness itself. I often pondered, “Why must I feel worse to eventually feel better?”

Here’s the part that might surprise some: I wish I had been told that conventional treatments aren’t the sole solution. While medication is frequently emphasized, I began exploring alternative remedies—acupuncture, CBD oil, dietary adjustments, and meditation. These practices didn’t cure me, but they offered a sense of control that was immensely comforting.

One significant realization came through my diet. Previously, I dismissed the idea that food influenced my symptoms. However, after thorough research and experimentation, I discovered certain foods exacerbated my condition. Eliminating processed foods, sugar, and dairy led to a noticeable improvement. Incorporating anti-inflammatory options like salmon, turmeric, and leafy greens became crucial.

Exercise was another contentious topic. My doctor suggested low-impact activities such as swimming and yoga, but I resisted. I loved running; it gave me a sense of freedom. I found a middle ground by modifying my routines, listening to my body, and knowing when to push myself or rest.

During one of my park visits, an older man noticed my struggle with stretches and asked, “Arthritis?” After I confirmed, he shared his 20-year journey with the condition. “Keep moving. It’s the best thing you can do,” he advised. His encouragement became my mantra, and on challenging days, I made an effort to move, even if just for a brief walk.

The emotional impact of RA is often overlooked. Feelings of isolation, depression, and anxiety regarding potential new symptoms can be overwhelming. I wish I had known the importance of prioritizing mental health. I began seeing a therapist who specialized in chronic illnesses, and she guided me through the emotional complexities associated with RA.

There were times I felt like a burden, especially when I had to cancel plans or needed rest when I wanted to be out enjoying life. I vividly recall a weekend trip I had eagerly anticipated. On the second day, I could barely get out of bed due to excruciating pain. I felt guilty for disrupting everyone’s plans. Yet, my friends surprised me by bringing the celebration to me, lounging in the hotel room with movies and good company. This experience reinforced that true friends don’t view you as a burden; they simply want to support you.

If I could revisit that time, I would advise myself to practice self-kindness and allow myself to experience pain and frustration without self-judgment. Self-compassion is vital. While we often discuss self-care in simplistic terms—like bubble baths or spa days—true self-care is much deeper. It involves forgiving yourself for days when getting out of bed feels impossible, acknowledging small victories, and understanding that you’re doing your best.

The journey with rheumatoid arthritis is ongoing, with no definitive endpoint or cure. Some days are more manageable than others, and moments of frustration persist, coupled with a longing for my previous life. However, I’ve also discovered newfound strength and resilience that I never knew existed.

To anyone recently diagnosed, I want to share this: You are not defined by your illness. While it is a part of you, it doesn’t encapsulate your entire being. It’s perfectly normal to experience bad days and to feel lost or afraid. But don’t lose hope. Seek support, explore all avenues, and, above all, practice kindness towards yourself. You possess more strength than you realize.

If you ever find yourself feeling defeated, remember: it’s okay to feel vulnerable. It’s alright to seek help and to take a break. Living with RA is a long-distance journey, not a sprint. Set your own pace, discover your rhythm, and keep moving forward. You have the capability to navigate this.

As I reflect on my journey, I recognize that RA has imparted lessons far beyond what it has taken from me. I’ve gained patience, resilience, and an appreciation for self-care. I’ve unearthed new interests and strengthened relationships. Most importantly, I’ve learned to embrace life fully, even while managing a chronic illness. To me, that is the ultimate triumph.

Chapter 2: Valuable Lessons Learned

The following video shares insights about navigating life with rheumatoid arthritis, highlighting essential tips and personal experiences.

In this next video, Jane Hogan discusses five critical lessons she wishes she had known upon her diagnosis, offering invaluable advice to those facing similar challenges.