Jessica Woodville | Memoir & Musings

by Jessica Woodville

They don’t tell you about the grief that comes after the diagnosis.

Not the grief that came before—when your body was breaking and no one believed you.

Not the rage that burned when your symptoms were chalked up to stress, anxiety, trauma, hormones, or your tone.

Not the heartbreak of being passed from specialist to specialist like a problem no one wanted to solve.

No, this grief is different.

It arrives after the validation.

After the results.

After the chart finally reflects what you’ve been screaming into the void for years.

It’s quieter, this grief.

But it cuts deeper than I expected.

Like an echo of every version of myself that I lost while waiting to be seen.

They call it an answer.

But no one tells you it will come too late.

No one warns you that a name

can feel like both a key and a tombstone.

When the diagnosis comes—finally, officially, undeniably—it lands like a strange kind of gift. You want to cry from relief. You want to shove the labs and scans in the face of every provider who doubted you. You want to believe this is the turning point.

And maybe it is.

But first,

you grieve.

You grieve the years you spent chasing legitimacy in a system built to gaslight people like you.

You grieve the life you might’ve lived if someone had just listened sooner.

You grieve the relationships that didn’t survive your unraveling.

You grieve the person you were before you had to become fluent in your own suffering.

You grieve the cost of surviving a system designed to delay your healing.

The emotional toll. The financial drain.

The thousands of dollars wasted on every specialty and fad fix insurance barely touched.

The supplements, the diets, the false hope.

The moments you convinced yourself maybe it really was in your head.

Some days, I scroll through old photos of myself—not to miss who I was, but to mourn what she didn’t know. That girl didn’t know how long the battle would last. She didn’t know how many doctors would shrug. How many friends would quietly disappear. How many times she’d have to advocate for care while barely able to stand.

I want to go back and tell her:

You’re not crazy. You’re not exaggerating. You’re just sick, and they can’t—or won’t—see it.

They say you should be happy to have answers.

And I am. But I’m also tired.

I’m also hollowed out by the fight.

I’m also still holding the pieces of a life I didn’t choose to lose.

Grief and gratitude can coexist. That’s the part no one talks about.

Yes, I’m grateful for the name.

But I’m grieving everything it cost me to get it.

I lost years to this body.

I lost relationships. Opportunities.

Entire seasons blurred by symptoms that were treated like footnotes instead of flashing red alarms.

Now that I have a name for it—autonomic dysfunction, adrenal insufficiency, mast cell activation, whatever combination fits the day—I’m supposed to move forward.

But what if forward still hurts?

What if forward means learning how to live in a body that still flares, still crashes, still bears the imprint of trauma and neglect? What if forward means learning how to grieve while still needing to advocate?

This grief doesn’t scream. It hums beneath the surface.

It whispers in the quiet moments—

When the house is still, and I remember who I was before the fight began.

Before I became fluent in symptoms.

Before my calendar filled with appointments instead of dreams.

Before survival became my full-time job.

There is no parade for the medically vindicated.

No refund for the lost years.

No reparations for the misdiagnoses, the ER visits, the records full of red flags and wrong assumptions.

Just your life, now—with a name.

Still hard. Still sacred. Still yours.

And still worthy of mourning.

Because you deserved better.

And I did too.

I don’t need anyone to tell me I’m strong.

I already know—I had to be.

What I need is space to feel it all.

To grieve the time I won’t get back.

To let the sorrow sit beside the relief.

To say: I’m glad I finally have an answer.

And I’m so, so sad it took this long.

If you’re here too—grieving after the fight—know this:

You are not alone.

You are not ungrateful for feeling this way.

And it is not weakness to mourn what was stolen while you were trying to survive.

We can hold both things at once:

the joy of finally being seen,

and the ache of how long it took.

That is what healing really looks like.

One breath, one truth, one hard-won diagnosis at a time.