Living with a rare, incurable disease teaches you quickly that language can be limiting, and that there’s no socially acceptable way to answer “How are you?” in under five seconds without lying, just a little.


There are things I don’t say, not because they don’t matter, but because they don’t always need an audience.
People ask how I’m doing, and most days I give them the answer that fits the moment. Sometimes that’s “I’m okay.” Sometimes it’s “hanging in there.” Sometimes it’s even “I’m doing.” All of those things can be true. None of them tell the whole story.


Part of the silence comes from not wanting to overload people. Everyone is carrying something, grief, stress, uncertainty, existential crises, and I’m deeply aware of that. I don’t want my diagnosis to dominate every room or every relationship. I don’t want dermatomyositis to become the headline that replaces everything else about me. I care deeply about the people in my life, and it’s more important to me that I am a place of respite and support in their lives.


There’s also a quieter reason: explaining takes energy. Real energy. The kind that has to be rationed.
Sometimes it’s easier to say less than to walk someone through the nuance, especially when the nuance doesn’t fit neatly or requires rigmarole that even I want to roll my eyes at.


One of the hardest things to explain about dermatomyositis is that better doesn’t mean fixed. “Better” in chronic illness terms is a wildly subjective metric. It can mean fewer symptoms, more function, or simply that today hasn’t humbled you yet.
I can be doing better and still decline later.
I can have progress and setbacks exist side by side.
I can feel hopeful without being cured.
There’s an uncertainty that comes with saying, “I’m doing better,” because if things worsen again (which is very likely) it can feel like you’ve somehow misled people.
Chronic illness doesn’t follow a redemption arc. There isn’t always a clear upward trend. Improvement can be real and temporary at the same time, and that doesn’t make it a lie.


I want to be hopeful. I am hopeful. Hope is how I keep showing up, to my life, my work, my relationships. I’m hopeful, just not in a “manifest it and it goes away” kind of way, ya know?
But I also want to be honest.
And sometimes those two things feel like they’re in tension with each other. There’s pressure, both internal and external, to stay positive, to focus on wins, to frame everything as progress. Positivity is comforting. Honesty is messier.


The truth is, I can hold both. I can believe in good days while preparing for hard ones. I can celebrate improvement without pretending the disease isn’t still there.
That balance doesn’t always translate well in conversation, so sometimes I choose quiet instead.


Silence isn’t denial. It’s discernment.
It’s choosing when, where, and with whom to share the heavier parts. It’s deciding that not every thought needs to be spoken, not every fear needs explaining. Some days, talking about it makes it feel bigger. Other days, it feels grounding. I’m still learning to tell the difference.
But even in silence, life is still happening.


There are still routines I love. Work that matters to me. Conversations that have nothing to do with illness. Moments of humor, dark and otherwise.
I still make plans. I still do my best marathons on Netflix and Hulu. I still live for a good playlist. I still care deeply. I still show up, mostly virtually, sometimes slower, sometimes with more help than I’d like, but present all the same.
Dermatomyositis is part of my life, but it’s not the only thing shaping it. And figuring out how to narrate all the moments is sometimes how I protect the parts of myself that still feel normal, capable, and whole.


Silence doesn’t mean I’m not struggling, (trust me, there are occasions I want to scream to the heavens or at anyone within earshot), but it doesn’t mean I’m not hopeful either.
It just means I’m choosing how I carry this. It’s about surviving with honesty, dignity, and room to still be myself.