Havana, ooh, na-na

Before I met him, I had never heard of Havana syndrome.  Not once. It was a completely new term for me.  I remember sitting across from him at brunch when he first shared his story.  But he didn’t just tell me what happened.  He let me see what it cost him.  He bared it all.

At the time, I thought I was simply learning his story.  I listened.  I asked questions.  I tried to imagine what it would feel like to lose not just your health, but the very version of yourself you had spent a lifetime becoming.  I understood it intellectually.  What I didn't know was that understanding and knowing are two very different things.

Wilson was a high-functioning special operator.  He designed missions and intelligence operations.  He lived for the challenge, the pressure, the impossible problems.  It gave him purpose.  It gave him identity.

He was the kind of man little boys pretend to be when they play soldier in the backyard, except he actually became him.   He was a badass whether his country ever knew it or not.

He lived it.  He breathed it.  It wasn’t just what he did.  It was part of how he understood himself.  He had spent a lifetime becoming someone who was finally more than enough in his own eyes.

And then, just like that, it was all gone.

The cruelest part wasn't the illness itself.  It was how the world received it.

After suffering for months with nose bleeds, headaches, vision changes, nausea, and exhaustion, Wilson found himself fighting a mysterious, poorly understood, controversial illness, one many dismissed as a conspiracy theory.

He didn’t know what was happening to him.

The man who once designed missions, solved impossible problems, and operated under extreme pressure suddenly couldn’t trust the one thing he had always depended on, himself.

Once a highly functioning hero, he was now a veteran struggling to navigate ordinary civilian life inside a body and brain that no longer felt familiar.

The symptoms weren’t just physically debilitating. They changed everything.

His nervous system.
His emotional capacity.
His energy.
His ability to show up.
His sensory tolerance.
His stress response.
His moods.

There were days when getting out of bed felt impossible.  His skin felt like it was on fire.  The pain was so unbearable that eating and drinking became a battle.  And maybe the cruelest part was that while he was trying to understand what was happening inside his own body, the outside world was still debating whether it was even real. 

What I didn’t know sitting across from him at that brunch that day was that months later, I would find myself standing somewhere painfully familiar to what he was describing.

Different illness.

Different cause.

Same terrifying question:

What happens when the person you have always trusted yourself to be suddenly becomes someone you don't recognize?

And maybe even more terrifying:

What happens when the people who know you best stop recognizing you too?

What if the greatest casualty of invisible illness isn't your health... but your identity?

What happens when your symptoms become louder than your character?

I wish I could tell you I noticed it immediately.  I didn’t.  Because that’s the cruel thing about volume.  If someone walks into a room and turns the dial from 3 to 10 all at once, everyone notices.  You cover your ears.  You leave the room.  You say, “Something is wrong.”

But that’s almost never how it happens.  The volume turns slowly  3… 4… 5… 6…  Your brain adapts.  Before long, ten feels normal.  The same song is playing.  The lyrics haven't changed.  The melody hasn't changed.  But now you're shouting.  You misunderstand each other.  You become frustrated.  You can’t even hear your own thoughts clearly.  At some point, someone walks out of the room.  Not because the song changed.  Because it became impossible to hear anything else.

For me, hormones didn’t change the song, they raised the volume; they turned it up so loudly that it distorted my emotional awareness, my ability to communicate, my ability to understand myself and ultimately, my ability to love people well.

“Why am I reacting this way?  Why can’t I find the off switch?”

My body stopped feeling like a place I could trust. 

Sleep changed. 

My nervous system stayed on high alert.

Some days, the lights were too bright.  

On other days, the wind was too loud.

Emotions arrived with an intensity that made no sense to me.  I wasn't choosing them.  I was genuinely trying to survive them.

The most frightening part wasn't that my mind became loud.  It was that, for a while, I could no longer tell which thoughts belonged to me and which belonged to the noise.

It took me months to understand that my values didn't disappear.  My character didn't disappear.  My love didn't disappear.  They were simply drowned out by a nervous system turned all the way up.  Every thought and every decision was being made in a room where the volume was at 10.  The confident, calm, grounded woman I had spent forty-two years becoming hadn't disappeared.  She had simply become impossible to hear.  Ultimately, my symptoms became louder than my character.

I don't think hormones created a different person.  I think they amplified everything until I could no longer hear myself underneath the noise.  Fear was always part of me.  So was insecurity.  So was loneliness.  So was courage.  Hormones didn't invent any of those emotions.  They simply turned up the volume until fear drowned out courage, loneliness drowned out connection, and insecurity drowned out trust.  The emotions weren’t new.  Their volume was.

By the time I realized what had happened, the loudest casualty wasn't my health.  It was my closest relationship.

Somewhere along the way, the volume had become so loud that two people who loved each other deeply could no longer hear one another.  The song never stopped playing.  We just couldn't make out the lyrics anymore.

Sometimes that's what invisible illness steals first, not love, but clarity.  Two people stand in the same room, each trying desperately to say, "Can you hear me?" never realizing the music has become too loud for either of them to hear.

Now, I can see that I wasn't asking the questions I thought I was asking.

I thought I was asking,
"Can you reassure me?"

What he heard was,
"You aren't enough."

I thought I was saying,
"I'm scared."

He heard,
"You're failing me."

I wasn't reacting to him.

I was reacting to the volume.

The irony wasn't lost on me that the one person who had taught me how invisible illness could steal your identity became the one person who couldn't recognize mine.  I had never mistaken his symptoms for his character.  It wasn't because he loved me less. It was because the volume had become too loud for both of us.

But what I couldn’t see then was that he was still fighting for himself too.  Invisible illness doesn't just distort the way you experience yourself.  Left unchecked, it distorts the way other people experience you too.

Invisible illnesses ask us to do something profoundly uncomfortable.  They ask us to believe someone's experience before we fully understand it. Suffering doesn't need perfect explanations to deserve compassion.

Months later, I did the only thing I knew how to do.  I tried to let him hear the song again.  I don't know how every story like this ends.  Some relationships survive the distortion.  Some don't.

When the volume finally settled, underneath all the distortion, the song had been there the entire time.

And so had I.

There is one huge difference in my story that I can't ignore. My illness ended. The hormones settled. The medications changed. The surgery removed the pellets. My mind slowly became recognizable again. The volume came back down until I could hear myself think.

I got my life back.

That isn't everyone's story.

For millions of people living with invisible illnesses, whether it's Havana syndrome, traumatic brain injury, chronic pain, autoimmune disease, ME/CFS, or countless others, there is no neat ending. There is no moment when the fog suddenly lifts and life returns to normal. They wake up every day carrying bodies and brains that no longer cooperate, while the world quietly expects them to function as though nothing has changed.

I only visited that reality briefly.

They live there.

In some ways, that makes me incredibly fortunate.

I was given something many people never receive: a way back.

But before I found my way out, I caught a slight glimpse of what life can become when your own mind feels foreign, when the people around you can't see what's happening, and when your character is judged by symptoms you don't recognize as your own.

My struggle was only temporary. Yet it forever changed the way I understand people whose suffering isn't.

I don't pretend to know what it's like to spend years, decades, or even a lifetime inside an invisible illness.

But I no longer have to imagine how isolating it can be when your greatest battle is the one no one else can see.