A powerful narrative about the realities of living a RARE life and the power of reconciling grief and gratitude

Written by Amy Gietzen

I wake before the sun most days—not because I want to, but because my body decides it’s time. Pain pulls me out of sleep before my mind has even caught up. I stretch carefully, the way you’d handle something fragile and cracked, always wondering if today will be the day a piece of me finally breaks.

This is my life with scleroderma. Some mornings it’s stiff joints. Other days it’s my lungs refusing to take in enough air. And yet, the heaviest part isn’t always my body—it’s my heart. Grief lingers there, whispering: this is forever.

I grieve the girl I used to be. She laughed without hesitation, made plans freely and didn’t second-guess whether her body could carry her through the day. That version of me is gone, and sometimes I feel like I’m mourning a ghost that no one else can see. But over time I’ve learned that grief and gratitude can live side by side. I can miss who I was and still find joy in who I am becoming.

After breakfast—-and the long line of pills I’ll never escape—I sit by the window with my journal. It’s my survival tool. Today I scribble: I’m tired of being strong. I just want to be. The words look small on the page, but letting them out makes space inside me for something else: purpose.

That purpose shows up in my advocacy work. Even on the hardest days, I remind myself that my story matters. I speak to rising healthcare students about life with scleroderma, not just the science of it but the humanity behind the disease—the grief, the resilience, the messy reality of living with something rare and chronic. Every time I share, I hope I leave them with more empathy than they walked in with. That gives my struggle meaning.

The rest of the day is a balancing act. Answering emails, returning calls, trying to keep up with the world’s pace while my body drags me down like quicksand. But I remind myself—I am still in the world. I still get to connect with people, share my story and use this illness to shine light for others who walk a similar path. That thought steadies me.

By afternoon, I’m drained. I rest on the couch and let the quiet surround me. Not defeat—release. People like to say “stay positive”, but for me, mental health isn’t about pretending everything’s fine. It’s about being real with my sadness and also remembering that it doesn’t cancel out my joy. I can cry, and still laugh later. I can hurt, and still love fiercely.

As night falls, I reminisce, sadly. I whisper the names of friends I’ve lost to this disease. Their absence aches, but I carry them with me. My grief isn’t just personal—it’s collective, stitched together from the stories of warriors gone too soon. Each name is a reminder: life is fragile, yes, but it’s also precious.

When I crawl into bed, I’m still in pain, but I’m also grateful. Grateful that I made it through another day. Grateful for the friends who check in, for the small victories, for the fact that hope has never fully left me—even on the hardest days. Living with scleroderma doesn’t mean being fearless. It means carrying grief in one hand and gratitude in the other, and somehow finding the strength to keep moving forward, one step at a time.

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