Getting out of bed can feel like an enormous task when your joints are stiff and every movement sends a jolt of pain through your body. That sense of weight, both physical and emotional, is something that has become part of my daily life. Each morning, there’s a battle in my mind. Should I stay in bed, where I am safe and still, or should I get up and face the pain head-on? For many people who have never lived with a chronic condition like rheumatoid arthritis, it might seem like a simple choice—just rest, take it easy, let your body recuperate. But for me, staying in bed was never an option.
From the very beginning of my diagnosis, I knew that laying down and letting the disease win wasn’t the way I could live my life. Over the years, people have said things like, “You could have just stayed at home,” or “No one would blame you if you just crawled into a corner and let the disease dictate your life.” Some even said it with a hint of judgment, as if they wouldn’t have blamed me for giving up but almost expected it. But that wasn’t me. There was always this voice in my head, a defiant part of me that refused to give up, no matter how loud the pain screamed.
I didn’t want rheumatoid arthritis to define me or to be the reason I became isolated, passive, and detached from the world. I knew that if I allowed that to happen, I wouldn’t just lose my mobility, but I’d lose a piece of my soul—the part that thrives on connection, on being useful, on contributing to something bigger than myself. And that was something I couldn’t bear.
Yes, I was angry. I still get angry sometimes. Living with arthritis, especially in the early years when I was struggling to find treatments that worked, felt like carrying an invisible burden that never left me. And it wasn’t just the physical toll; the emotional toll weighed even heavier at times. There were moments when I was furious with my own body for betraying me, for making everything harder—from simple things like tying my shoes to more meaningful tasks like taking care of my children. I was often overwhelmed with a deep sadness, too, feeling like I wasn’t the mother I should have been, that I wasn’t giving my sons the experiences and the active, playful mom they deserved.
It’s hard to explain that kind of sadness, especially to people who aren’t going through it themselves. They see the surface—you’re tired, you’re in pain—but they don’t always see the emotional battle raging inside. The guilt. The fear. The frustration. I remember countless days when I’d try to hide it all, to put on a brave face for my boys because I didn’t want them to feel sorry for me or to think they needed to take care of me. I was their mother, after all, and I was supposed to take care of them, not the other way around.
But even as I tried to hide my pain, I knew my emotions impacted them. Children are more intuitive than we give them credit for. They could sense when I wasn’t okay, no matter how hard I tried to reassure them. I’d tell them, “I’m fine. Mommy’s just a little tired today,” but deep down, I knew they could see through my words. And that made me feel like I was failing them even more.
Eventually, I realized that the best way I could be there for my sons wasn’t to pretend everything was fine, but to show them that even in the face of adversity, we can still move forward. I needed to learn everything I could about living with arthritis, not just for myself, but for them too. I wanted to teach them that life doesn’t stop just because things get difficult. You find ways to adapt, to manage, and most importantly, to keep going.
That’s when I started getting involved with arthritis organizations. Initially, it was more about seeking answers for myself. I wanted to understand the disease better, to connect with others who were going through the same thing. But as I became more involved, I realized that these organizations were more than just a resource for information—they were a lifeline to the wider community of people living with arthritis, and they offered something I desperately needed at the time: connection.
There’s something incredibly powerful about hearing someone else’s story and recognizing pieces of yourself in their words. I would sit and listen to people talk about their own struggles, their fears, and their triumphs, and I realized that we were all fighting our own personal battles, even if they looked different on the outside. Some people were dealing with the same type of arthritis I had, while others had different forms, but the core of our experiences was the same: the constant balancing act between hope and despair, pain and resilience, isolation and connection.
In a way, listening to others helped me heal. It shifted my focus from the heaviness of my own life to the broader picture of what it means to live with chronic illness. It reminded me that while we all carry individual burdens, we are not alone in this fight. Every person I met had a story, and every story was a testament to the human spirit’s ability to endure, to adapt, and to keep pushing forward despite the odds.
The work I did with arthritis organizations wasn’t just about helping others—it was about helping myself, too. It gave me a sense of purpose at a time when I could have easily fallen into despair. It reminded me that even though my body might be limited in some ways, my capacity to connect, to give back, and to be a part of something larger than myself was limitless. I wasn’t just living with arthritis anymore—I was living with intention, with a drive to contribute to the larger conversation about what it means to live with this disease.
Over the years, I’ve gained a deep appreciation for the dedication and commitment of the people involved in arthritis advocacy. Whether they are doctors, researchers, volunteers, or people living with arthritis themselves, there’s a common thread that ties us all together: the desire to learn, understand, and grow. We know that living with arthritis is a lifelong journey, and the only way to make that journey more bearable is to share what we know, to support one another, and to keep pushing for better treatments, better care, and ultimately, a cure.
Through my work with these organizations, I’ve met some of the most resilient, inspiring people. People who have taught me that living with arthritis doesn’t have to mean living a smaller life. It doesn’t have to mean retreating into a corner, as some had suggested to me in the past. It can mean reaching out, connecting, and building a life that is rich in meaning and purpose, despite the challenges.
Yes, there are days when getting out of bed still feels daunting. There are days when the pain is overwhelming, when my body feels like it’s working against me, and when I just want to give in to the exhaustion. But on those days, I remind myself of the people I’ve met, the stories I’ve heard, and the strength we all carry within us. I remind myself that even though living with arthritis can be incredibly difficult, it can also be a catalyst for growth, for connection, and for finding purpose in places we never thought to look.
And I remind myself that I am more than this disease. I am a mother, a friend, a part of a larger community, and I have something to offer the world, even if my body sometimes feels like it’s holding me back. The strength I find in myself and in others is what keeps me going, what pushes me to get out of bed each day, and what reminds me that there is always something worth fighting for.
In the end, living with rheumatoid arthritis has taught me that while we can’t always control the challenges we face, we can control how we respond to them. We can choose to let them define us, or we can choose to define ourselves in spite of them. And for me, that choice has made all the difference.