THE LONG MIDDLE

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The High Cost of Disappearing

A quiet reflection on how chronic illness doesn’t just change the body — it slowly reshapes belonging, visibility, and the way you move through the world. This piece explores what it costs to fade from the spaces you once occupied, and what it takes to remain present when disappearance feels easier.

Mary Monoky

8/4/20252 min read

The High Cost of Disappearing

Chronic illness takes so much from the body.

But what it takes from your life?

That’s harder to name—and even harder to grieve.

It starts quietly.

You miss a lunch.

Cancel a dinner.

Turn down a weekend trip because your body just… can’t.

At first, people understand.

They say, “Of course. Rest.”

They say, “We’ll catch you next time.”

But “next time” keeps moving.

And eventually, the invitations stop coming.

You don’t know when it happens—

that shift from included to forgotten, from central to optional.

You just look around one day and realize:

You’re no longer part of the rhythm.

And the ache of that?

It’s not just loneliness.

It’s erasure.

People don’t mean to disappear you.

They’re busy. They’re overwhelmed.

They don’t know what to say.

Or maybe your reality makes them uncomfortable—

a mirror they’d rather not look into.

But you feel it.

In the silence.

In the empty inbox.

In the group photo you weren’t asked to be in.

It’s not just that you’re missing out.

It’s that you’re being missed less and less.

That is the high cost of disappearing.

Not the flare-ups or the fatigue or the medical bills—

but the way illness unthreads you from the fabric of your own life.

And still—

Here you are.

Still offering love.

Still seeking joy.

Still becoming.

You may be on the edge of things now,

but that doesn’t mean you’ve vanished.

You are not gone.

You are not forgotten.

You are not broken.

You are simply carrying something most people can’t see—

and doing it with more courage than they will ever know.

Let’s start telling the truth about what it costs to be ill—and what it takes to stay connected.

If this resonated with you, share it. Tag someone.

Reach out to the friend you’ve been meaning to check on.

And if you’re living it—

if you’ve been quietly carrying the weight of disappearing—

you’re welcome here.

This is a space for reappearing.

For reclaiming voice, story, and connection.

We’re still here.

Together.

This story lives in Compass Point 4 — What Has Meaning Now?