Fear doesn’t always announce itself.
Sometimes it’s quiet. Persistent. Sitting just beneath the surface of your day, humming while you try to live your life.

Living with a rare, incurable disease like dermatomyositis means living with the unknown. And the unknown is fertile ground for fear.

It’s the fear of what’s coming next.
The fear of what you’ll lose.
The fear that today might be the day your body changes again… not dramatically, not with sirens, but just enough to alter everything.

There’s a specific kind of fear that comes with a body that is slowly giving out on you. A fear that asks the same question every morning: Will today be the day I can’t get up?
Will today be the day I can’t make the 59 steps to the bathroom, even with my walker?

That fear doesn’t stay neatly contained. It follows you.

Before dermatomyositis, I took so much for granted. The ability to move without planning. To stand without calculating. To walk to the bathroom without it being a potential failure point in my day.

Even fear itself used to look different.

Before DM, my biggest fear during a power outage was keeping myself and my pets safe and warm. Now, that fear has shifted to something much darker and more immediate: What if I’m trapped in my chair?
What if I can’t transfer?
What if help can’t get to me?

It’s wild how quickly your definition of “emergency” changes when mobility becomes fragile.

There’s another layer of fear that doesn’t get talked about enough, the fear that comes when you’re doing everything the doctors tell you to do.

You take the medications.
You do the physical therapy.
You follow the rules, swallow the pills, grit your teeth, and hope.

And then… you don’t get better.

Or worse, you keep declining.

That’s a special kind of fear. The kind that comes with frustration, confusion, and self-doubt. You start asking yourself questions no one can answer:
Why isn’t this working?
What am I missing?
Is this just how it goes now?

It’s terrifying to realize that effort doesn’t always equal improvement, that compliance doesn’t guarantee stability.

Here’s the part that’s hardest to explain: you often don’t talk about any of this.

Not because it doesn’t matter, but because it matters too much.

There’s embarrassment in not being the person you once were.
There’s the awareness that everyone else has their own shit going on, and the fear of being “too much.”
There’s the desire to not let this disease consume your identity.

And then there’s the other side of it,  the relentless drive to keep going.

To show up.
To function.
To work.
To love.
To be you,  even as your body actively resists that effort.

You want to keep operating at the same level in your personal life and your profession. You don’t want anyone to think you’re less than capable. But behind the scenes, you’re performing constant mental gymnastics, calculating energy, pain, risk, and decline, all while trying not to miss a beat.

That balancing act is exhausting. And it’s lonely.

Fear doesn’t mean weakness.
It doesn’t mean you’ve given up.
It doesn’t cancel out resilience or gratitude or hope.

Fear is simply what happens when your body becomes unpredictable and your future refuses to be clearly defined.

And maybe, by saying it out loud, someone else will feel a little less alone in theirs.