POTS and PANS+

POTS stands for Postural Orthostatic Tachycardia Syndrome, a condition that silently reshapes the lives of those who carry it.

But behind the diagnosis, there is PANS+ — Pain. Autonomic dysfunction. Neurological fog. Syncope & Systemic fatigue.

This poem is my voice, our voice — a reflection of the chaos, courage, and quiet resilience that comes with simply surviving the day.

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POTS and PANS+

The rise and fall of our chest becomes a chore.

Waking up alone takes 3 spoons out of 12.

How am I supposed to survive a day with just 9 left?

I have to have a bright future—

a path out of this darkness.

A way to bring myself joy out of the numb.

A way to feel warmth alongside loneliness.

To turn loneliness into solitude.

To turn the forest into an Amazon.

To fight the voices in my head

and replace them with His voice.

Well, that’s enough about me—let’s go back to us.

We strive so hard to have a life,

but it takes us 3× the energy it takes others.

The people. The rest of the world.

The ones who can never understand.

At some point, we all develop hate for them.

But we try to remind ourselves:

they’re just humans too.

You know the worst part?

We don’t just feel pain.

We forget peace, too.

We lose strength—physically,

psychologically.

We are drained,

but we get up—

only to fall again.

We go through hell, and hell again,

just to find a way out of this mess.

We lay in bed and cry ourselves to sleep

with our imaginary friend—

the only one who truly understands.

Because no one else does.

One minute, we’re happy.

The next—we’re numb.

One minute, we’re reading.

The next—it looks like a foreign language.

Until we finally speak up.

We tell them what we go through.

But,

“It’s all in your head,”

they say.

Until they find some of us

hanging from the ceiling.

Their hopes shattered—

just because no one believed us.

Just because they couldn’t understand.

But who are we to get angry?

We were once like them.

We just sit back,

watching,

reminding ourselves:

they have peace.

And we crave that kind of peace.

It seems like the only way to get some peace.

I’m running down a dark hallway,

people chasing me,

trying to end me.

And I get so tired, I let go—

but they won’t let me go.

They chew and bite at me

in all the places they can find.

But they don’t kill you.

They leave you begging

for death.

Begging for peace.

Then I wake up.

But it’s not a dream.

It’s just

what we go through.

Trying to take a break from it all.

“Get some sleep,” they say.

“Take a break.”

But do our minds ever sleep?

We try to go for a drive, take the edge off—

but once again, once we go up,

we come back down so hard

we finally get some sleep.

We wake again—

ready to deal with the day

with 9 spoons.

But remember—

it takes 2 just to smile

and say we’re okay.

7 left.

3 to shower.

4 to go.

1 to eat.

3 to throw up,

and clean up after ourselves.

And you realize—

it’s just 7:30 AM.

Shoot.

POTS and PANS+

Back again.

The throbbing pain.

“Have you finished working on this!?”

You hear—

but you can’t hear.

What you do hear

is a voice telling us

to take them out.

You feel it.

I know you do.

Because I feel it too.

I’m one of us.

For some, it’s night time in the day.

For others, winter all year long.

Some parts of us burn.

Others freeze.

But guess what?

We do it.

We finish it.

We get up.

We go.

To finally—finally—have some peace.

But just when we start letting go…

we’re suddenly being chased down

that hallway again.

A cycle.

A constant cycle.

You still think it’s all in our heads?

Pain. Anxiety. Nausea. Syncope +.

Tell that to the floor that catches us.

Or the ceiling we stare at—begging for silence.

But this is not the end.

This is just… Phase 1.

Pain. Autonomic dysfunction. Neurological fog. Syncope & Systemic fatigue