Introduction
When I was diagnosed with rheumatoid arthritis (RA) at 32, it felt like the ground had been ripped out from beneath me. I was already living a busy life as a stay-at-home mom, focused on raising my kids and providing a stable home. My world was full of the hustle and bustle of motherhood, and I didn’t have time to think about myself. The last thing on my mind was chronic illness, let alone something as life-altering as rheumatoid arthritis.
But there it was—my new reality.
As if the diagnosis itself weren’t hard enough to process, I quickly learned that this disease wasn’t just a random occurrence. It was genetic. I had inherited rheumatoid arthritis from a family I barely knew—a birth family I had been removed from as a baby. Growing up in foster care, I had no connection to them, no real memories of my birth-mother, and yet here I was, dealing with the legacy of her illness.
This is the story of how I came to terms with that diagnosis, how I’ve managed to live with rheumatoid arthritis for over three decades, and how my understanding of genetics and family history has evolved over time.
The Moment of Diagnosis
I was sitting in the doctor’s office when the words “rheumatoid arthritis” came out of his mouth. It was September, and just a few months earlier, I had met my birth-sister for the first time. During that conversation, we had touched on family health history, and she had casually mentioned that our birth-mother and an uncle had both struggled with arthritis.
At the time, it didn’t seem like a significant piece of information. Arthritis was something I associated with older people, something far removed from my life as a young mom. I couldn’t have known that this seemingly offhand comment would soon feel like a prophecy being fulfilled.
I remember sitting there, stunned. How could this happen to me? I was only 32, far too young for this. My thoughts immediately went to my children. How would I take care of them? How would I manage a household if my body was betraying me like this?
But beyond the practical concerns, there was something else brewing inside me—anger. I was furious that this disease had found its way into my life, and even more furious when I learned that it was genetic. Growing up in foster care, I had been separated from my birth family for almost my entire life. I had no memories of my birth-mother. How could I be carrying this disease that belonged to a family I barely knew?
Coming to Terms with Genetics
It wasn’t long after my diagnosis that I began to understand the role genetics played in my rheumatoid arthritis. My doctor explained that RA can often run in families, and in my case, it was clear that I had inherited it from my birth-mother’s side. But knowing that didn’t make it any easier to accept.
For most people, family history is something they grow up with. They know about their parents’ health struggles, their grandparents’ conditions, and the risks they might face as they age. But for me, as someone who grew up in foster care, I had none of that. My birth-mother was a stranger to me. I had spent my entire life removed from her, yet here I was, living with the genetic legacy she had unknowingly passed on.
At first, I struggled to wrap my head around it. It felt unfair, like I was being punished for something I had no control over. I didn’t know my birth-mother, didn’t even remember her, and yet I was stuck dealing with the consequences of her health. It was like a connection had been forced upon me, one I had never asked for.
Over time, though, I began to shift my perspective. Yes, rheumatoid arthritis was something I had inherited, but it didn’t have to define me. I couldn’t change the fact that my genetics played a role in my diagnosis, but I could change how I chose to live with it. Slowly, I began to accept that this was part of who I was, and I started to learn everything I could about managing my condition.
Navigating the Challenges of RA
The first few years after my diagnosis were the hardest. My rheumatoid arthritis was aggressive, and despite trying every available treatment, I kept getting worse. My mobility decreased, the pain was constant, and there were days when getting out of bed felt impossible. I was angry, frustrated, and scared for the future.
During this time, I leaned heavily on my family. My husband and children became my rock, helping me in ways I hadn’t anticipated needing. I also began seeking out support from others living with RA. I found comfort in knowing that I wasn’t alone, that others were facing similar struggles and finding ways to push through.
But it wasn’t just about surviving day to day—I wanted to thrive. I refused to let RA dictate every aspect of my life. I started exploring different treatment options, alternative therapies, and lifestyle changes that could help me manage my symptoms. I experimented with diet, exercise, and stress management techniques, all in the hopes of finding a balance between living with RA and still enjoying my life.
Finding Hope Through Treatment
In 1999, after years of failed treatments, I was given the opportunity to participate in a clinical trial for a new biologic medication. It was a double-blind placebo study, and I was hesitant at first. But the risks seemed worth it, and I felt I had nothing left to lose.
That decision changed everything.
After my first injection, I woke up the next day and felt like a new person. The pain had lessened, my mobility had improved, and for the first time in years, I felt like I had some control over my body again. That biologic treatment became my lifeline, allowing me to manage my rheumatoid arthritis and regain a sense of normalcy in my life.
It was a turning point, not just physically but emotionally as well. For so long, I had felt trapped by my disease, angry at my genetics, and helpless to change my situation. But now, with the right treatment, I realized that I could live a full life despite RA. It wasn’t about being cured—there’s no cure for RA—but it was about finding a way to live well with the disease.
Embracing My Story
As the years have passed, I’ve come to terms with the role genetics has played in my life. Yes, I inherited rheumatoid arthritis from a birth family I never knew, but that doesn’t mean it has to define me. Instead, I’ve learned to see it as just one part of my story.
Over time, I’ve also reconnected with my birth family in new ways. Meeting my sister and learning about our shared history was just the beginning. I’ve continued to build relationships with my birth relatives, and in doing so, I’ve come to understand more about the genetic legacy I’ve inherited—not just the health challenges, but the strength, resilience, and courage that also run in my family.
I now see my diagnosis as part of a larger journey, one that has shaped me into the person I am today. Rheumatoid arthritis is still a daily reality for me, but I’ve found ways to manage it and live a full, meaningful life. I’ve also dedicated myself to helping others on the same journey, which is why I started my blog, Joyce’s Arthritis Connection. Through the blog, I aim to create a space where people with RA can come together, share their stories, and support one another. Living with rheumatoid arthritis can be incredibly isolating, but it doesn’t have to be. We can find strength in community.
Moving Forward
Looking back, I’m amazed at how much I’ve grown since that initial diagnosis. What started as a source of anger and frustration has become a journey of acceptance, resilience, and empowerment. My genetics may have predisposed me to rheumatoid arthritis, but I’ve learned that it doesn’t have to control my life.
If there’s one thing I’ve learned, it’s that living with RA is a marathon, not a sprint. It requires patience, persistence, and a willingness to adapt. There will be good days and bad days, but through it all, there’s hope. With the right treatment, the right support, and the right mindset, it’s possible to live a full and happy life with rheumatoid arthritis.
For anyone reading this who’s struggling with a new diagnosis or feeling overwhelmed by the challenges of living with RA, know that you’re not alone. There is a community out there, and there are people who understand what you’re going through. I encourage you to visit Joyce’s Arthritis Connection and become part of that community. Together, we can navigate the challenges of RA and find ways to live our best lives, despite the obstacles.
If you would like to read about my Childhood Journey click here.