Whenever I’m having a terrible day, I try to remind myself of something positive. One I often go back to is the amount of time it took for me to get diagnosed. It was remarkably swift. It took just two months from the onset of symptoms for my doctors to have an answer.

I was diagnosed with dermatomyositis, under the umbrella of antisynthetase syndrome, which also brought along Sjögren’s disease, interstitial lung disease, Raynaud’s disease, and rheumatoid arthritis. I went from being in the best shape of my life to having a collection of rare, incurable diseases in just a matter of months. And considering it typically takes four to five years to diagnose a rare disease, the time it took – or I guess, the lack thereof – is something I’ll always be grateful for.

In a way, I was lucky because my symptoms were so visible: my face and legs were swollen, and I was struggling with basic mobility. Back then, I thought maybe the swelling itself was causing my limitations, rather than my muscles being actually under attack. Having a diagnosis so quickly brought some relief—finally, we had an answer, and it meant we could begin to fight it. But there wasn’t time to absorb what this all meant for my life. As soon as I got diagnosed, I was thrown straight into treatment mode. I had my first infusion within a couple of weeks, and from then on, my life has been dominated by appointments, treatments, and trying to stay on top of the latest research to give myself the best chance.

 

Treatment itself has been a maze. Because there’s no medication approved explicitly for dermatomyositis, my doctors and I had to throw everything we could at it. I started with steroids and then moved on to infusions with IVIG, Rituxan, and even chemotherapy. It was challenging to determine what worked because we were trying so many things simultaneously. Over time, it’s become clear that my body responds best to a mix of IVIG, Rituxan, and steroids, though the side effects can be significant. I’m thankful to have a dedicated care team; I get my infusions at a cancer center, and the nurses there are phenomenal. They make those long, exhausting days feel a little lighter.

What I think most people don’t realize is how much time managing a chronic illness takes. It’s like a full-time job. My infusion days alone are full-day affairs—starting with a pickup at 6:45 a.m. and often not wrapping up until mid-afternoon. And it’s not just infusions; it’s doctor’s appointments, follow-ups, and constant adjustments. I’ve found ways to make this time less of a burden by working on things that keep me focused and positive, but at the end of the day, my illness dictates a lot of my schedule, my energy, and even my ability to engage fully with the life I want.

What’s been especially hard about this journey is the feeling that it hit just as everything I’d been working toward was finally coming together. I was in the healthiest place of my life, with big goals and dreams in my reach, when this diagnosis came out of nowhere and upended everything. Suddenly, all the things I’d worked toward felt like they were slipping away, like my future was put on pause indefinitely. There’s a frustration that comes with knowing you didn’t do anything to deserve this—it just happened, changing everything in an instant.

 

Connecting with others who have dermatomyositis has been a real mix of emotions. For the first year and a half, the support I found was entirely virtual, which helped, but it didn’t quite feel complete. Finally, in September, I got to attend a myositis conference and meet people in person who understood what I was going through. It was incredibly validating but also eye-opening. I saw just how differently this disease affects each of us; some have severe lung issues, while others face limitations like mine. Witnessing that range of experiences evokes a complex mix of emotions. On one hand, I feel grateful that my journey hasn’t been as severe as it could be, but on the other, I feel a sense of guilt and worry, knowing this disease is unpredictable. There’s always that lingering uncertainty.

I wish more people understood the realities of living with a chronic illness. It’s not just an inconvenience; it shifts everything about your life. The dreams you had, the goals you set—they all get put on hold, and your day-to-day reality becomes a balancing act of managing symptoms, treatments, and the unpredictable nature of how you’ll feel from one day to the next. For me, having accessible healthcare and knowing my treatments are covered is a huge relief. It takes some of the weight off my shoulders, allowing me to focus a bit more on healing and adjusting to this new normal.

I’m still learning to navigate this journey, finding ways to live meaningfully despite the constraints that dermatomyositis brings. It’s not the path I would have chosen, but it’s the one I’m on. Day by day, treatment by treatment, I’m figuring out how to move forward, carrying both the weight of this disease and the resilience it’s helping me discover.