The Things We Learn in the Dark

What chronic illness reveals about the body, the systems that fail us, and the light we find along the way.

There are places you cannot visit unless your body takes you there.

Places without street signs.

Places without maps.

Places where time moves differently and the smallest things become enormous.

A shower.

A grocery store.

A flight of stairs.

A doctor's appointment.

A dinner with friends.

A night of sleep.

Standing up.

Breathing.

There are worlds hidden inside these ordinary things.

I live in one of them.

And I am okay.

That may be the strangest part to explain.

I am not waiting for someone to rescue me.

I am not sitting around asking the universe why it chose me.

I am not looking for a silver lining.

I have made peace with the fact that this is the body I inhabit and this is the life I am living.

But making peace with something does not mean pretending it isn't brutal.

And chronic illness can be brutal.

Quietly.

Expensively.

Systemically.

Beautifully.

Terrifyingly.

Sometimes all at once.

The body as oracle

My body has become an oracle I never asked for.

It speaks in heartbeats.

In dizziness.

In inflammation.

In pain.

In exhaustion.

In reactions to things other people don't even notice.

It speaks through POTS.

Through MCAS.

Through hEDS.

Through a nervous system that has learned the landscape of danger.

And through the strange, ancient persistence of EBV—a virus carried by so much of humanity, yet one more thread in the mystery of what happens when a body becomes chronically overwhelmed.

I don't believe EBV is some single demon hiding at the center of the labyrinth.

I don't believe every illness has one neat explanation.

The body is more mysterious than that.

It is an ecosystem.

A constellation.

A conversation between genetics and environment, immune function and infection, hormones and nervous system, history and circumstance.

We are not machines with one broken part.

We are living systems.

And sometimes the system becomes exhausted from holding too much.

I did not call this in

This is where I want to say something very clearly.

I believe in energy.

I believe in consciousness.

I believe in the extraordinary intelligence of the body.

I believe trauma can live in the nervous system.

I believe our thoughts matter.

I believe our environments matter.

I believe healing can happen in places science has not yet learned how to measure.

And still:

I did not manifest my chronic illness.

I did not think it into existence.

I did not vibrate incorrectly.

I did not fail at spirituality.

I did not call it in.

And please don't tell me that everything happens for a reason.

There are moments when that sentence lands like a stone.

Not because I am bitter.

Because I understand suffering differently now.

When someone is terrified, exhausted, broke, isolated, and sick inside a body they can no longer predict, telling them that they created this experience can become another wound.

"Everything happens for a reason."

"Your soul chose this."

"You called this in."

"Raise your vibration."

"Release your resistance."

"Your body is reflecting your beliefs."

Maybe those ideas are meaningful to you.

They can be meaningful to me too—in the right context.

But spirituality without compassion becomes another weapon.

If your spiritual framework requires a sick person to be responsible for their suffering, I am not interested.

I don't need my illness to be my teacher.

I don't need it to be my karmic assignment.

I don't need to be grateful for it.

I can find meaning without declaring that the suffering was necessary.

There is a difference.

A profound one.

The terror of not knowing your own body

One of the deepest fears of chronic illness is not pain.

It is unpredictability.

You don't know what tomorrow will bring.

You don't know which food will betray you.

Which building will make you sick.

Which medication will cause a reaction.

Whether you will wake up functional or flattened.

Whether you can make the appointment and still have enough energy to parent afterward.

Whether standing in line will make your heart race.

Whether the thing you did yesterday will cost you three days.

Your body becomes a weather system.

And you become the meteorologist.

Constantly checking.

Constantly interpreting.

Constantly calculating.

How much energy do I have?

How much can I spend?

What will this cost me tomorrow?

Can I afford to go?

Can I afford not to?

Is this symptom new?

Is it dangerous?

Is it POTS?

MCAS?

EBV?

Hormones?

Trauma?

Something else?

The healthy world gets to be spontaneous.

The chronically ill world is made of calculations.

And then you enter the healthcare system

This is where the personal becomes political.

Because there is something deeply wrong with a healthcare system that asks sick people to become their own case managers, researchers, advocates, insurance negotiators, schedulers, historians, and diagnosticians while they are already struggling to stand upright.

You become an unpaid medical professional specializing in yourself.

You learn acronyms.

You read journal articles at two in the morning.

You carry folders.

You track symptoms.

You remember dates.

You research specialists.

You learn which doctor will listen.

You learn which doctor will not.

And if you are a woman, you may also learn how quickly your physical symptoms can be translated into a psychological explanation.

Anxiety.

Stress.

Hormones.

Depression.

Trauma.

Too sensitive.

Too emotional.

Too complicated.

There is a particular kind of violence in being told that your body is a problem with your personality.

It makes you question yourself.

It makes you wonder whether you are exaggerating.

Whether you're difficult.

Whether you're imagining it.

Until you begin apologizing for symptoms you did not choose.

The systemic toll

This is not simply a story about illness.

It is a story about capitalism meeting a human body.

A body that cannot produce indefinitely is considered defective.

A parent who cannot work full-time is economically vulnerable.

A person who cannot afford treatment is told to try harder.

A person who cannot afford housing without mold is told to move.

A person who cannot afford a specialist is told to find one.

A person who cannot tolerate an environment becomes socially isolated.

And the people with the least resources are often asked to perform the most extraordinary amount of labor just to survive.

There is paperwork.

There are waitlists.

There are prior authorizations.

There are deductibles.

There are specialists who don't take your insurance.

There are treatments that are theoretically available but practically inaccessible.

There are appointments you cannot attend because you cannot afford to miss work.

There are appointments you attend anyway and then spend the next week recovering.

There is childcare.

Transportation.

Medication.

Supplements.

Testing.

Physical therapy.

Therapy.

Environmental remediation.

Safer housing.

Air filtration.

Lost wages.

And the infinite invisible tax of being sick.

The cost of becoming sick is not contained in the medical bill.

It is everywhere.

Washington rain, mold, and the shrinking world

Here in Washington, we live in a beautiful place.

Green.

Wet.

Moss-covered.

Mist rising off the trees.

Rain tapping against windows.

There is magic here.

But moisture can also become a nightmare when the place you live is making your body sick.

And when you begin reacting to buildings, your world can become very small.

You start noticing smells other people don't notice.

Water stains.

Humidity.

Carpet.

Basements.

Bathrooms.

HVAC systems.

You wonder about every hotel room.

Every rental.

Every friend's house.

Every office.

Every restaurant.

You start calculating.

Can I stay here?

Can I breathe here?

Will my body punish me tomorrow?

And there is something almost primal about fearing the place that is supposed to protect you.

Home is supposed to be the cave.

The sanctuary.

The place where the nervous system finally lets down its guard.

What happens when the cave doesn't feel safe?

You become nomadic without necessarily moving.

Your nervous system is always looking for somewhere safe to land.

And that is exhausting.

Isolation is not a side effect

Isolation is not a footnote.

It is one of the central injuries of chronic disease.

You cancel enough times and people stop inviting you.

You explain enough times and people stop asking.

You decline enough restaurants, trips, parties, weddings, concerts, vacations, sleepovers, dinners, and spontaneous adventures that eventually your social world becomes very small.

Not because you don't love people.

Because your body has become expensive.

Expensive to move.

Expensive to feed.

Expensive to house.

Expensive to treat.

Expensive to accommodate.

Expensive to understand.

And sometimes people don't know how to love something they cannot fix.

So they disappear.

Sometimes slowly.

Sometimes all at once.

There is no dramatic breakup.

Just fewer texts.

Fewer invitations.

A birthday you aren't invited to because everyone assumes you can't come anyway.

A friendship that becomes a memory without anyone ever deciding it should end.

This is one of the quiet tragedies of chronic illness.

The world keeps moving.

People keep going to dinner.

They get on airplanes.

They buy houses.

They change careers.

They have babies.

They dance.

They make plans six months ahead.

And you are over here trying to figure out whether you can stand long enough to cook dinner.

Nobody is wrong.

And nobody is okay.

Love doesn't escape the illness

Partnership becomes its own ecosystem.

Illness enters the bedroom.

The finances.

The parenting.

The grocery list.

The sex life.

The vacations.

The future.

The division of labor.

The dreams.

There is the person who is sick.

And the person who loves them.

And sometimes both are terrified.

There can be resentment.

Not because love isn't real.

Because exhaustion is real too.

There can be guilt.

There can be grief for the life you imagined.

There can be tenderness so deep it hurts.

There can be days when love feels like a hand on your back.

And days when illness feels like a third person living in the house.

A silent roommate who never pays rent.

Parenting from the edge of capacity

And then there are children.

Children don't care that your autonomic nervous system is dysregulated.

They need breakfast.

They need shoes.

They need snacks.

They need someone to find the missing thing.

They need comfort.

They need you.

And sometimes you have almost nothing left.

Parenting while chronically ill is a particular kind of alchemy.

You are trying to raise another nervous system while trying to regulate your own.

If you are neurodivergent, you may already be navigating a sensory world that can feel like standing beneath a waterfall of information.

If you are a trauma survivor, you may be simultaneously trying to break patterns you inherited while your own body is exhausted.

You are healing and parenting and surviving at the same time.

There are days when you do not feel like the mother you imagined you would be.

And yet your child may remember something completely different.

The way you listened.

The way you apologized.

The way you told the truth.

The way you taught them that rest is allowed.

The way you showed them that a body can have limits and still be worthy of love.

Perhaps that is another kind of medicine.

Not perfection.

Presence.

Nervous system regulation as sacred practice

This is where I come back to the nervous system.

Not because regulation will cure everything.

It won't.

Not because chronic illness is "all in the nervous system."

It isn't.

But because after enough years of illness, uncertainty, dismissal, financial stress, environmental fear, medical trauma, and isolation, the nervous system deserves care too.

Regulation, for me, is not becoming blissed-out and serene.

It is coming home.

To the breath.

To the body.

To the present moment.

To sound.

To vibration.

To the earth.

To the possibility that for thirty seconds, nothing needs to be solved.

A hum.

A hand over the heart.

Bare feet on the floor.

A long exhale.

A slow stretch.

Sunlight on the face.

A child's laughter.

The sound of rain.

These are not cures.

They are offerings.

Little candles lit inside the dark.

The economics of being alive

Sometimes I think this is what people don't understand.

Chronic illness is not just a health problem.

It can become a housing problem.

A marriage problem.

A parenting problem.

A career problem.

A friendship problem.

A transportation problem.

A food problem.

A financial problem.

A mental health problem.

A spiritual problem.

A systems problem.

And when all of those problems arrive at once, the human being standing underneath them can disappear.

Not literally.

But socially.

Economically.

Professionally.

Relationally.

You become harder to accommodate.

Harder to employ.

Harder to insure.

Harder to invite.

Harder to understand.

And then society has the audacity to ask why you're depressed.

Why you're anxious.

Why you don't seem like yourself.

Of course I don't.

Look at what you have asked a human nervous system to carry.

And still, there is magic

This is not a story about despair.

I am not interested in making illness my identity.

There is too much life here.

Too much beauty.

Too much mystery.

Too much music.

Too much love.

I have learned things about slowness I could never have learned while running.

I have learned to listen for the nearly inaudible.

The shift in breath.

The tightening of the jaw.

The first flicker of overwhelm.

The subtle yes.

The sacred no.

I have learned that the body is not an obstacle to spirituality.

It is the temple through which we experience it.

Even when the temple is cracked.

Even when the plumbing is broken.

Even when the alarm system won't stop ringing.

Even when the walls have been damaged by water.

Even when the sanctuary doesn't feel safe.

There is still something holy here.

For the people who want to help

You don't need to understand chronic illness to care about it.

You don't need to understand POTS.

You don't need to understand mast cells.

You don't need to understand connective tissue disorders.

You don't need to have an opinion about EBV.

You don't need to know what CIRS stands for.

You don't need to become an expert.

You need to give a shit.

That's it.

Give a shit that people are being priced out of healthcare.

Give a shit that women are still fighting to have their pain taken seriously.

Give a shit that disabled people are expected to navigate systems designed without them in mind.

Give a shit that housing can become a health hazard.

Give a shit that chronic illness can make a person's world smaller until their living room becomes their entire universe.

Give a shit about the parent who is exhausted.

Give a shit about the friend who keeps canceling.

Give a shit about the partner who is quietly drowning beside them.

Give a shit before someone becomes desperate enough to prove their suffering to you.

You don't have to fix us.

You don't have to save us.

You don't have to say the perfect thing.

Just don't add another layer of shame to a life that already contains enough.

Bring soup.

Watch the kids.

Drive someone to an appointment.

Sit on the floor.

Send a text that doesn't require a response.

Believe people.

Vote for systems that make healthcare accessible.

Care about housing.

Care about disability.

Care about women.

Care about the invisible labor required to remain alive in a body that doesn't cooperate with the world.

Care.

Because someday it may be your body.

Or your mother's.

Or your partner's.

Or your child's.

And when that day comes, I hope the world is softer than it is now.

A small ritual for coming home

When the body is tired, we don't need another demand.

We need an altar.

It can be the corner of a bed.

The floor.

A bath.

A patch of sunlight.

Sit or lie down.

Let the earth hold you.

Put one hand over your heart.

Place the other wherever your body wants tenderness.

Take a breath that doesn't need to be deep.

Listen.

Not for a message.

Not for a diagnosis.

Just listen.

Hum softly on the exhale.

Let the vibration move through your throat and chest.

Again.

And again.

Then whisper:

I am here.

My body is here.

We do not have to solve everything tonight.

If movement feels good, make one slow circle with your wrists.

One with your ankles.

Roll your shoulders.

Stretch your arms toward the ceiling.

Then let them fall.

No achievement.

No goal.

Just relationship.

Your body speaking.

Your body listening.

Your body being allowed to exist without having to perform.

A loving-kindness prayer

for the chronically strong

May I be kind to this body.

May I stop asking it to be something it isn't.

May I remember that illness is not a moral failure.

May I remember that needing help is not weakness.

May I remember that rest is not laziness.

May I remember that my worth has never been measured in productivity.

May I have safe shelter.

May I have access to care.

May I have enough money.

May I have enough support.

May I have people who understand that cancellation is not rejection.

May I have relationships spacious enough for illness.

May I have doctors who listen.

May I have systems that do not require me to destroy myself proving that I am sick.

May I have moments of safety.

May I have moments of joy.

May I have moments when I forget to be afraid.

May my nervous system learn that not every moment is an emergency.

May my child learn that a body can be imperfect and still be worthy of love.

May I release the shame that was never mine.

May I release the stories that told me I created my suffering.

May I keep the spirituality that makes me softer, not smaller.

May I keep the mystery.

May I keep the music.

May I keep the magic.

And when the world tells me that I should be grateful for the pain, may I remember:

I don't have to be grateful for the wound to be grateful for the life.

I can love my life without loving what happened to my body.

I can make meaning without calling suffering necessary.

I can be at peace without pretending that the system is okay.

I can be whole without being well.

And perhaps that is the deepest mystery of all.

That a body can be breaking in places—

and still carry a soul full of light.

That a nervous system can be frightened—

and still learn the language of safety.

That a life can become smaller—

and still become deeper.

That the path can be nothing like the one you imagined—

and still contain beauty.

Not because everything happens for a reason.

Not because we called it in.

Not because we were meant to suffer.

But because we are alive.

And being alive is strange and terrible and exquisite.

A fragile miracle.

A wild, unfinished song.

And we are still singing.

From my chronically strong heart to yours.

xx, S