When the Body Breaks

Photo by MAK on Unsplash

When the Body Breaks.

Before I understood anything about chronic illness, I believed that my body would eventually calm, correct itself, and return me to the rhythm of my old life.

I thought discomfort meant recovery was taking longer than expected.
I thought fatigue was something a good night’s sleep could fix.
I thought pain had a beginning and an end—because that was the only template I had ever seen.

But illness does not always behave that way.

Sometimes the body falters quietly, without an event to point to, and without a clear moment when everything changes. Sometimes it opens a door you never meant to walk through, into a stretch of time where nothing feels familiar and yet nothing announces itself as an emergency.

This is what I call the long middle—
the place between not as bad as I once was
and not as good as I hope to be.

This story comes from the earliest days of that shift, before I had words for it, before I knew what chronic meant, before I realized I was entering a different kind of life.

It begins in the middle of an ordinary week, when I still believed the disruption was temporary, and when I had no idea how long it would take for the truth to surface.

When the body breaks, medicine knows what to do.

There is a protocol for the crash, the crisis, the wound. American medicine excels at the acute—at saving, stitching, and stabilizing.

But once the emergencies quiet down, the system falls silent too.

There is no handbook for the years that follow, for the body that does not die and does not get well.

When I first became sick in the late 1990s, I went searching for one.

I spent afternoons in public libraries, combing medical journals, flipping through indexes, trying to find language for this new terrain I had entered. I found tidy graphs and clinical papers that charted the onset of pain, the expected recovery, and the moment when a condition officially became chronic.

Twelve weeks, one journal said.
After twelve weeks, pain is considered chronic.

I remember staring at that sentence, my pulse thudding. I was already past it.

No one tells you what happens after that line. They only tell you that you have crossed into a category medicine does not know how to fix.

I felt a chill that had nothing to do with fever.

Short-term disability is familiar to most people.

It is the safety net for a broken leg, a surgery, something you are supposed to heal from. Long-term disability is different. Few people talk about it, and fewer understand what it feels like to need it.

The gap between your last paycheck and the first Social Security Disability payment can stretch for months.

I was terrified. Bills did not stop because my body had. Rent was due. The phone still rang. The mailbox filled with forms written in a language I did not yet speak.

I was not only losing my health.
I was losing my footing in a world that runs on momentum and employment.

When I thought of disability, I pictured survivors of catastrophic events—car accidents, spinal cord injuries, amputations. Or young people whose bodies had betrayed them through genetics, those waiting for a new heart, a kidney, a miracle.

What I did not know back then was that there is a whole world of us living with illnesses that cannot be seen.

Silent, invisible conditions that do not announce themselves but quietly rearrange a life.

Lupus.
Multiple sclerosis.
Fibromyalgia.
Dysautonomia.

Names that sound clinical but carry the weight of slow, ongoing loss.

No one warned me that the absence of visible evidence would make the burden heavier.

That invisibility could be isolating—not only from others, but from the version of myself I once recognized.

The public perceives disability through a narrow lens, and maybe that is where my own mindset came from.

I remember using a disabled parking space at the grocery store, my placard hanging from the mirror.

I had recently come home from surgery. The incision nearly circled my torso, stitched and draining, with pumps and tubing trailing like reminders of survival. That afternoon, I pushed myself to make one small errand, hoping to feel normal again.

By the time I reached the car, every step burned.

Then I saw it.

A scrap of torn paper tucked beneath my windshield wiper, scrawled in pencil:

This space is for handicapped people.
Unless your handicap is being stupid, you do not belong here.

I stood there in the wind, reading it again and again.

I could have lifted my shirt and shown them the angry incision, the stitches, the evidence that I was healing and broken at once.

But I did not.

I folded the note in half, slid it into my purse, and drove home in silence.

That scrap of paper said everything about how the world sees illness—
and how it refuses to see.

I used to think healing was about returning to who I was before.

Now I know it is also about learning to live inside a body that will never again be invisible to me, even if it is invisible to everyone else.

This was only the beginning.

What came next was not recovery.

It was the long middle—the quiet stretch where I learned what endurance really means.