A Personal Journey of Resilience, Support, and Advocacy
Chapter 2 of the Empowered Healing Series
Link to Chapter 1: https://calmcorecozylayers.wordpress.com/2025/03/17/calm-core-cozy-layers/
💜 A Story Close to My Heart 💜
“Some battles are visible. Others are fought quietly, behind closed doors.”
Over the past year, I’ve navigated life with systemic sclerosis, a rare autoimmune disease that affects not just the patient but also the people around them—especially caregivers.
I wrote this personal piece to share what it’s like to live with a condition that few talk about and to shine a light on the quiet strength of those who support us along the way.
This is the first in a series of personal narratives I’ll be sharing, and I’d love for you to read and tell me what you think.
AN AI-GENERATED IMAGE THAT ECHOES THE RESILIENCE, SUPPORT, AND QUIET STRENGTH
Living with a rare autoimmune disease isn’t just about the physical symptoms—it’s the emotional weight too, the kind that’s hard to explain to anyone who hasn’t been through it. You often feel like you’re walking this road alone. These conditions don’t get much attention, so the research is thin, and treatment options? Often unclear or just not available. For many, getting a diagnosis takes years, and even then, symptoms can be unpredictable—good days, bad days, and no real warning in between. You end up becoming your own advocate, whether you’re ready for it or not. But through all that, one thing really matters: the people who show up. Caregivers—family, close friends, sometimes a nurse who actually listens—they make the path less overwhelming. They help carry the load when the system doesn’t have answers.
I know this journey firsthand. I was diagnosed with limited systemic sclerosis about a year ago, but my symptoms began long before that. For five years, I experienced Raynaud’s phenomenon, a condition where my fingers and toes would turn white and blue in response to cold or stress. At first, it was just a dry mouth. Annoying, sure—but easy enough to brush off. I told myself it was nothing serious. But as time went on, it got worse, and eventually I couldn’t ignore it anymore. Then, in May of last year, everything changed. I was in New York at the time, and between the freezing weather and a few things I ate that didn’t sit well, my body just seemed to spiral. Out of nowhere, I started having intense stomach issues. By the time I got back home to Michigan, the pain had gotten so bad that I ended up in the ER. They told me it was GERD—acid reflux, basically—but that didn’t explain everything. Not long after, I started feeling this deep ache in my joints, and I knew something bigger was going on. A follow-up with my rheumatologist confirmed it: systemic sclerosis. The diagnosis caught me off guard. My world didn’t exactly fall apart, but everything shifted. That was the moment I realized I had to approach my health differently. I couldn’t control everything, but I could take ownership of what I could.
Today, as I write this, I am celebrating my 200th consecutive day of practicing yoga. Not that I am completely cured, but yoga and strength training have given me a way to rediscover myself and reclaim agency over my health. Most days, I rely on small routines that keep me grounded. One of them is doing breathing exercises—nothing fancy, just a few minutes here and there using an app I like. It helps calm my nerves and supports my lungs, especially on harder days. I also carve out time—usually an hour or two—for gentle yoga and specific hand stretches. They’ve become a part of how I manage stiffness and stay flexible, even when my body doesn’t always cooperate.
Food and sleep have become non-negotiables too. Lately, I’ve really started to see how much my eating and sleep habits shape how I feel. I didn’t always pay much attention, honestly. But these days, I’ve learned to check in with myself more often. If something feels off, I try tweaking little things—meals, rest, whatever helps. It’s not some perfect routine, but it’s something that grounds me.
Living with a chronic illness? It’s messy. There’s no tidy fix. The rough patches don’t disappear. But those small daily habits—little rituals, really—give me a bit of footing. A small way to feel like I’m doing something to help myself keep going.
If I’m being honest, what’s helped me the most hasn’t been a treatment plan or some structured routine. It’s been the people—my people. My family, my close friends—they’ve shown up in the kind of quiet, dependable ways that don’t make headlines but mean everything. Just being there, without needing to be asked.
And then there’s my husband. He’s walked through all of it with me. The easier days, the tough ones, and those moments when I’ve barely had the energy to speak. He never tries to fix what can’t be fixed. He’s just there. Present. Steady. The kind of calm that anchors you when everything else feels shaky.
That kind of love? It doesn’t come with instructions or expectations. It simply stays. And sometimes, that’s exactly what gets you through—just being held, quietly, until you’re ready to take the next step.
The Emotional Side of Systemic Sclerosis
When I first heard the words “systemic sclerosis,” everything changed. It wasn’t just a diagnosis—it felt like a line had been drawn between the life I knew and whatever came next. Suddenly, I had to rethink how I saw myself, how I moved through the world, and how I connected with my own body.
Those early days weren’t easy. Accepting that things were different now took time. I wasn’t ready for how quickly my day-to-day life would shift, or how much of my identity I’d have to rebuild in the process.Simple tasks weren’t always so simple anymore, and I had to rethink how I lived my daily life.
There were moments—honestly, stretches of time—when I felt frustrated and down. Sometimes I even tried to pretend things hadn’t changed. That feeling of losing control over my own body was scary, and at times, it hit me hard.
But over time, something began to change. I began to realize that, while this condition shaped a lot of my daily life, it didn’t have to become my whole identity. I wasn’t ready for what this illness would bring. It pushed me in ways I didn’t expect. But along the way, I began to uncover pieces of myself I hadn’t noticed before. I found a kind of strength—not loud or dramatic, but quiet, steady—the kind that shows up when things feel overwhelming.
Over time, I started tuning in more closely to what I needed, not just physically, but emotionally too. I began taking better care of myself, not out of fear, but out of respect for what my body was going through.
Adding Joy to the Journey
Something I didn’t expect to learn through all of this is just how much the small, joyful moments can carry you. I started keeping a little gratitude notebook—not anything fancy, just a place to jot down one good thing from each day. Some days, it’s something simple, like a bit of relief from discomfort. Other times, it’s a kind message from a friend or making progress in yoga when I didn’t think I could.
I’ve also leaned into things that help me feel more like myself—trying out new recipes in the kitchen, laughing with my family, or even just rewatching a favorite show. These aren’t huge events, but they help. They give me something to smile about on days when everything else feels hard. It’s been one way of finding happiness that isn’t tied to whether or not my symptoms are flaring up.
As I started paying more attention to these small joys, I also realized how important it was to be around people who really get what this kind of journey feels like. That’s what led me to a support group—not because I had all the answers, but because I needed a space where I didn’t have to explain everything. Just being understood without saying much at all—that’s been a kind of healing, too.
Finding Strength in Support Groups
A few months ago, I found myself walking into a support group meeting here in Michigan for people living with systemic sclerosis. I wasn’t sure what to expect, honestly. But looking back, it’s one of the best steps I’ve taken. The group meets once a month, and those meetings have become a kind of anchor for me.
There’s something really comforting about being surrounded by people who just understand. You don’t have to explain your pain or justify your exhaustion—they’ve lived it too. Just listening to others share their stories, how they’re getting through the hard parts, what’s worked for them—it’s been a huge relief.
Two mentors in the group—Sheri Harworth Hicks and Mary Alore—have stood out in the best way. They’ve been through this long enough to offer advice that actually lands. They’ve helped me sort through medical stuff, emotional stuff, even just day-to-day adjustments. They’re generous with their time and with their empathy, and I feel lucky to know them.
It’s not just me who’s benefited either. My husband has come to understand the condition in a whole new way, just by being around others in the same boat. He doesn’t feel quite so alone in it now. That’s made a real difference—not just for me, but for him as well. I see him stepping into the caregiver role with more confidence and less guesswork.
Being part of this community has changed how I see the bigger picture, too. So many of us have similar experiences—years of waiting for a diagnosis, limited access to specialists, uncertainty around treatments. The system isn’t always built for people with rare conditions, and you feel that. Which is why awareness, and even just talking about it, matters more than people realize.
The Caregiver’s Journey
Taking care of someone with a rare illness goes way beyond giving meds or driving to appointments. It seeps into every corner of life—meals, moods, money, even sleep. And the truth is, a lot of that work goes unnoticed. It’s unpaid. It’s exhausting. And it asks a lot—mentally, emotionally, physically—from the person doing it.
I see it every day in my own home. My husband’s been everything from my sounding board to my advocate, and even the person who remembers the little things when I can’t. He’s the one who holds it together when I’m falling apart. It’s not easy for him. I know that. He doesn’t always say much, but I can see the weight he carries.
And that’s exactly why caregiver support matters. They need help, too—whether it’s someone to talk to, a moment to themselves, or just knowing they’re not invisible in all this. Giving them space to breathe doesn’t just help them—it helps the person they’re caring for, too. When caregivers are supported, the whole household feels it. It’s a team effort, even when one person’s health is at the center.
Conclusion: A Call for Compassionate Change
Living with a rare autoimmune disease—or being the one who’s caring for someone going through it—is something you can’t really prepare for. It sort of hits you in waves. Some days, you feel strong. Other days, just getting through feels like the win. It’s draining, unpredictable, and yeah, it can be incredibly frustrating. Nothing about it is neat or easy. But underneath all of that, there’s this steady thread of love that keeps you going, even when everything else feels like too much.
Caregivers, especially, don’t get talked about enough. They’re the ones keeping everything going in the background—managing meds, juggling appointments, making sure we feel seen and safe when the rest of the world doesn’t always understand. And often, they do all this while quietly setting aside their own needs.
Honestly, the system doesn’t always support them—or us. But we find ways to cope. Sometimes it’s sharing a laugh, or finding a sliver of peace in a tough day. For me, connecting with a support group was a big step. Just knowing others get it made me feel a little less alone. And carving out a few moments of self-care—whatever that looks like—helps keep things from spiraling.
💬 I’d really like to hear from others walking this road. Whether you’re a caregiver, a patient, or just someone who cares about rare disease advocacy—how has this journey shaped you? What’s helped, and what do you still need? Let’s have an honest, supportive conversation in the comments.
–Nitya
🌟 Ready for the next layer?
👉 Read Chapter 3:
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