Living Between Seizures and Silence

My Journey with Epilepsy and FND: Struggle, Discovery, and Hope
(by Roni – April 2025)

When Seizures Were Only the Beginning

For years, epilepsy defined my life—or so I thought.

The seizures were frightening but manageable at first. I adapted to their unpredictability. I learned to live between the storms.

But slowly, my body began to betray me in ways even seizures could not explain.

Sudden paralysis. Weeks without speech. Total physical shutdowns that left me trapped inside my own skin.

All the while, the tests came back “normal.” Doctors were puzzled—or dismissive. Friends slipped away. I lost my job. I lost my voice. I lost pieces of myself.

Yet the seizures continued—violent, relentless—layering fear upon fear. I wasn’t just living with epilepsy anymore. I was fighting an invisible, unnamed war on two fronts.

A Life Shrinking in Silence

There were whole seasons when I couldn’t walk.

I would lie in bed, fully awake but unable to move my legs. I would open my mouth to speak—and nothing would come out. Most recently, in March 2025, I lost my voice for 22 full days.

Neurologists, MRIs, EEGs, new medications—hope after hope collapsed under the weight of unanswered questions.

No one could explain why my hands stopped working. Why I collapse without warning. Why my body refused to obey me.

I began to feel invisible—screaming inside a silence no one could hear.

As a single mother, the guilt was unbearable. How do you explain to a child that you can’t walk or talk—and no one knows why?

But even on the days I could barely move, I fought. For her. For myself.

Finding a Name: FND

In March 2025, after another traumatic collapse, I turned to what I had left: my own determination.

I devoured medical journals. I watched patient stories. I compared symptoms, notes, clues.

And on April 3, 2025, I found the missing piece.

Functional Neurological Disorder (FND).

At last, there was a name for the nightmares that had no diagnosis. FND explained the unexplained: the paralysis, the speech loss, the collapses.

I wasn’t crazy.
I wasn’t imagining it.
It was real.

FND doesn’t replace my epilepsy—it stands beside it, complicating it. Two disorders intertwined, demanding different approaches, different forms of care.

But now, at least, I had a map.

How I Fight Back

Living with both epilepsy and FND is exhausting. Some days, survival feels like a full-time job.

But I have built my own set of weapons—small, sacred tools that keep me standing:

Prayer and dua: Trusting that healing comes from Allah, while taking every step I can.
Patient communities: Finding people who say, “Me too,” and mean it.
Self-education: Knowledge gave me back my voice—literally and figuratively.
Faith, resilience, and my daughter’s love: My deepest reasons to keep going.
Medication discipline: Because caring for my body is an act of hope.
Psychological support: Because mental health is survival.
Relentless optimism: Progress, no matter how small, is still a victory.

I am still learning. Still falling. Still getting back up.

A New Mission: Turning Pain Into Purpose

I no longer see my story as just survival. I see it as a mission.

Too many people with epilepsy and FND are dismissed.
Too many are told, “It’s all in your head.”
Too many are silenced.

I want to change that.

I want to become an advocate, a voice for the unheard. I want to join research, conferences, media efforts—anything that shines a light into the darkness we live with.

As you suggested, I plan to connect with organizations like FND Hope and FND Action to add my voice to the growing call for awareness, care, and respect.

Thank you, Jon, for offering a space where stories like mine can be told.

If you are reading this and feel invisible, know this:

You are not alone.

Your pain is real.

Your voice matters.

In Gratitude,
Roni