#lovingwhileill

There is a strange kind of grief in falling deeply in love while your body is becoming unfamiliar to you.

You finally find someone who makes you want to imagine a future, and suddenly the future becomes the very thing you are most afraid to imagine.

I want to think about ordinary things.

Waking up beside you.

Making coffee.

Driving somewhere with no real destination.

Arguing over what to watch.

Falling asleep against your chest.

Building a home that feels quiet and safe.

I want to imagine years.

But sometimes my body will not let me think beyond the next appointment.

The next test.

The next scan.

The next unanswered question.

The next morning I wake up and wonder what new part of me will hurt.

Loving you should feel like opening a door.

Instead, some days, it feels like standing in the doorway with one hand reaching toward you and the other holding myself together.

I am trying to love you while my body is asking me to survive.

And I do not know how to explain how exhausting that is.

There are days when I am so tired that even speaking feels heavy.

Days when eating hurts.

Days when my stomach turns against me after only a few bites.

Days when nausea, vomiting, weakness and pain make the smallest things feel impossible.

Days when my heart suddenly races as though I am running from something, even when I am lying still.

Days when I stand up and the room changes shape.

Days when my balance feels uncertain, my vision blurs and one of my legs does not move the way I expect it to.

There are days when the pain begins in my abdomen and spreads into my flank, my back, my chest or places I cannot clearly name.

Sometimes it is sharp.

Sometimes it is pressure.

Sometimes it is heat.

Sometimes it is simply the terrifying awareness that something inside me does not feel right.

I have spent so much time trying to understand what is happening within my own body that I am afraid there will be nothing left of me for you.

That is one of the hardest things to admit.

I am afraid my health will make me difficult to love.

I am afraid you will grow tired of hearing that I do not feel well.

I am afraid you will stop believing me when the doctors cannot give me one simple answer.

I am afraid my appointments, exhaustion, pain and fear will slowly become the third person in our relationship.

Always present.

Always demanding attention.

Always taking something from us.

I worry that one day you will look at me and no longer see the person you fell in love with.

You will see medications.

Hospital bracelets.

Unfinished meals.

Canceled plans.

A body that needs too much rest.

A woman apologizing because she cannot stand long enough, travel far enough, eat normally enough or promise how she will feel tomorrow.

I hate how often illness makes me apologize for existing.

I am sorry I am tired.

I am sorry I am hurting.

I am sorry I cannot go.

I am sorry I need help.

I am sorry this is frightening.

I am sorry I do not have better answers.

I am sorry my body keeps interrupting the life I want to live with you.

But none of this is what I wanted.

I did not choose the pain.

I did not choose to lose so much weight.

I did not choose to become afraid of food.

I did not choose the dizziness, the weakness, the racing heart, the chest pain or the feeling that my own body is becoming a place I cannot safely rest.

I did not choose to spend my days wondering whether the veins around my kidney are compressed, whether my organs are receiving what they need or whether the next doctor will finally listen.

I did not choose to have my life divided into symptoms and specialists.

I did not choose to become fluent in medical words simply because I was desperate to be understood.

Nutcracker syndrome.

Pelvic congestion.

SMA syndrome.

Thyroid disease.

Anemia.

Endometriosis.

MCAS.

Words that sound clinical in a report but feel completely different when they are living inside a human being.

A diagnosis on paper may only take one line.

Living with it takes everything.

It takes sleep.

It takes strength.

It takes appetite.

It takes money.

It takes time.

It takes confidence.

It takes the version of you who once believed your body would simply carry you wherever you wanted to go.

Sometimes I miss her.

The girl who did not measure her life in test results.

The girl who could make plans without wondering whether she would be able to stand, eat, breathe or stay awake.

The girl who trusted that if something was wrong, someone would find it and help her.

Now I know that being sick is not only about symptoms.

It is also about fighting to be believed.

It is hearing that everything looks fine while knowing you are not fine.

It is being sent home with the same body that frightened you enough to ask for help.

It is watching numbers, scans and reports become more important than the person sitting in front of them.

It is learning that sometimes you must beg for the care you thought would be offered freely.

And through all of this, I love you.

That is the beautiful part.

That is also the terrifying part.

Because now I have something to lose.

Before you, I could pretend that whatever happened to me would only happen to me.

Now I imagine your face beside a hospital bed.

I imagine you trying to be strong while I am afraid.

I imagine you wondering whether I will get better.

I imagine the exhaustion of loving someone whose body keeps becoming a question no one can answer.

And I do not ever want my illness to become your prison.

I do not want you to feel responsible for saving me.

I do not want you to believe that loving me means carrying every fear I have.

I do not need you to fix what the doctors have not fixed.

I do not need you to have answers.

I need you to believe me.

I need you to remember that I am still here beneath all of this.

I am still the woman who laughs too hard.

The woman who dreams about impossible things.

The woman who sees meaning in stars, oceans, numbers, animals and strange little signs.

The woman who loves with her whole soul, even when her body has very little strength left to offer.

Illness has changed the way I live, but it has not changed the way I love.

If anything, it has made love more urgent.

When your body teaches you that nothing is guaranteed, you stop loving halfway.

You stop saving words for another day.

You stop assuming there will always be more time.

You learn to say, “I love you,” while the moment is still warm in your hands.

You learn that intimacy is not only romance.

Sometimes intimacy is letting someone see you when you are weak.

It is allowing them to sit beside you when you cannot pretend to be okay.

It is trusting them with the parts of you that feel frightened, ashamed or broken.

It is letting them hold your hand without asking them to pull you out of the darkness.

I am learning that being loved does not require me to be healthy every day.

It does not require me to be convenient.

It does not require me to hide my pain so no one feels uncomfortable.

Real love does not only arrive for the beautiful parts.

It stays present in the uncertain ones.

It sits quietly in waiting rooms.

It remembers which foods you can tolerate.

It notices when you are becoming dizzy.

It brings water.

It does not make your illness the center of your identity, but it does not ask you to pretend it is not there.

It says, “You are still you.”

That is what I need to hear sometimes.

Because there are nights when I feel as though my body has swallowed my entire identity.

I look in the mirror and see the weight I have lost.

I see exhaustion beneath my eyes.

I see someone who has spent too long fighting.

I wonder whether you see those things too.

I wonder whether you notice how hard I am trying to remain soft when life keeps asking me to become hard.

I wonder whether you understand that sometimes my distance is not rejection.

Sometimes I am simply exhausted.

Sometimes I become quiet because I am frightened by what I am feeling.

Sometimes I pull away because I do not want you to see how much pain I am in.

Sometimes I believe that hiding my suffering is an act of love.

But silence does not protect love.

It only makes suffering lonelier.

So I am trying to tell you the truth.

I am afraid.

I am afraid of my body.

I am afraid of being dismissed again.

I am afraid of needing treatment I cannot access.

I am afraid of becoming worse before someone finally understands.

I am afraid that I will let you down.

I am afraid that you will build dreams around me that my health will not allow me to fulfill.

I am afraid you will love me deeply and still discover that loving me hurts.

But I am also hopeful.

Because when I imagine the future now, I do not only see hospitals.

I see you.

I see us finding joy inside days that are not perfect.

I see us learning that a meaningful life does not have to look like everyone else’s.

I see quiet mornings.

Gentle hands.

Plans that can change without becoming disappointments.

Love that is flexible enough to hold both hope and uncertainty.

Maybe I cannot promise you the kind of future people write into wedding vows without thinking.

I cannot promise that my body will always cooperate.

I cannot promise that I will never need help.

I cannot promise that every test will come back with good news.

But I can promise that what I feel for you is real.

I can promise that I will keep trying.

I can promise that I will tell you the truth when I am scared instead of disappearing inside myself.

I can promise that I will not measure my worth by how healthy, productive or easy to care for I am.

And I can promise that I will never forget that you are a person beside me, not a cure I am entitled to.

You are not responsible for rescuing me.

But your presence reminds me that I am worth fighting for.

Your love does not heal my body.

It gives me somewhere gentle to place my fear.

Maybe that is what love truly is.

Not saving someone from every terrible thing.

Not promising that pain will never come.

Not pretending the future is certain.

Maybe love is simply looking at someone in the middle of the unknown and saying:

I still see you.

You are more than what is happening to you.

You are not a burden because you need care.

You do not have to become smaller to keep me.

I do not want you to love me because you feel sorry for me.

I want you to love me because I am still alive inside this body.

Because I am still curious.

Still passionate.

Still difficult.

Still funny.

Still dreaming.

Still capable of giving something beautiful.

My body may be fighting me, but my heart is not empty.

It is overflowing.

With fear.

With grief.

With hope.

With all the things I want to experience beside you.

I do not know what will happen.

I do not know which treatment will help, which doctor will listen or which answer will finally make the pieces come together.

I do not know whether healing will look like returning to who I was or becoming someone entirely new.

But I know this:

I do not want fear to make me refuse the love I prayed for.

I do not want illness to convince me that I am undeserving of tenderness.

I do not want to leave you before you have even chosen to leave me simply because I am afraid of becoming too much.

So I will not make that choice for you.

I will let you love me honestly.

Not as someone untouched by pain.

Not as someone who can promise an easy life.

But as I am.

A woman still learning her body.

A woman carrying more questions than answers.

A woman who has survived things that should have made her stop believing in love.

A woman who is still here.

Still breathing.

Still reaching toward you.

I love you.

Not because I believe love will cure me.

Not because I expect you to carry me through every moment.

I love you because even while my body feels uncertain, something in my soul becomes quiet when I think of you.

I love you because you remind me that my life is not only a collection of diagnoses.

It is also connection.

Desire.

Faith.

Laughter.

Long conversations.

Tenderness.

Dreams.

Love.

My health may change the shape of our story.

But it does not make the story less beautiful.

Maybe our love will have to learn patience.

Maybe it will have to become stronger in quiet ways.

Maybe some days it will look less like adventure and more like lying beside me while I wait for the pain to pass.

But love does not become smaller because it must become gentle.

Sometimes gentleness is the greatest form of devotion.

And maybe I do not need to know how many years are ahead of me to know what I want to do with the life I have now.

I want to love you without apologizing for my body.

I want to let myself be loved without believing I must earn it through strength.

I want to stop treating every uncertain tomorrow like it has already been taken from us.

Today, I am here.

Today, I love you.

Today, my heart still knows how to hope.