Functional Neurological Disorder: A Life With Limits

April is Functional Neurological Disorder Awareness Day and the 13th is our annual awareness day. I was diagnosed with FND December 29th of 2023. I normally don’t write blog posts about chronic illnesses, much less the ones I have but FND is so unknown that I am making an exception. I was FND Aware before my diagnosis and by the end of this post you too will be FND Aware.

What is FND?

FND or Functional Neurological Disorder, is a condition where there’s a problem in how the brain & body communicate. Think of the brain as a computer. The hardware, or the brain, is fine, there is no structural damage like a tumor or stroke, but the software (different parts of the brain) are slow. It is as if the brain is running on Windows 10. 

FND can cause a myriad of symptoms including (but not limited to):

• Seizures (non-epileptic, but just as real)

• Paralysis or weakness

• Tremors and abnormal movement

• Speech, sensory, and vision problems

• Chronic pain & exhaustion

It’s one of the most common diagnoses in neurology clinics—yet also one of the most misunderstood.

People with FND are often dismissed, misdiagnosed, or told it’s “all in their head.” (Are we really to expect anything else?)

But FND is real. It’s recognized by neurologists. It’s disabling. And we deserve to be believed.

My Diagnosis:

In the fall of 2023 I started having really long absence seizures, much longer than they are expected to last (think 10 min long vs the typical 5-20 seconds). I was also experiencing episodes of leg weakness, numbness and temporary paralysis, all things that are not conductive to the life of an athlete. After countless EEGs that came up inconclusive, I received the diagnosis of Functional Neurological Disorder.

My life with FND:

For me, FND means living with seizures that don’t respond to my epilepsy medications. Ones that can come without warning and don’t show up on EEGs. 

It means days when my legs stop working; suddenly, unpredictably — and I need a wheelchair to get around.

One hour I’m walking. The next, I’m in a wheelchair, trying not to panic about how long it’ll last this time.

It means waking up and feeling like the whole room is spinning. Having your vision become blurry, as if everything is moving up and down or side to side. It means having “awake” syncope episodes. Imagine actually fainting but you’re conscious through the whole thing. You feel your legs give out from underneath you, you feel your body land on the floor and you see it happen in real time. You cannot stand up because of the syncope and that you have to have someone come and guide you to the bathroom because you cannot stay upright on your won.

It means navigating a world that assumes mobility is all or nothing, when really, mine shifts hour to hour.

It means canceling plans. Leaving rooms. Sitting out of the life I want to live because my body said “no” again.

I do everything I can to manage it. I track triggers. I get enough sleep. I plan my schedule like a chessboard, trying to stay three moves ahead of my nervous system.

And still—FND can knock the floor out from under me with no warning.

FND and Jiujitsu:

Living with FND means rethinking my relationship to jiu-jitsu, a practice that gives me strength and joy. A purpose.

Jiujitsu has been a near constant in my life for the past two years, much like how ballet was when I was a teenager. Everyday I have practice for 90 minutes. I do my hair, I put on my gi and lace up my ankle braces. I bow as soon as I enter the dojo. I line up at the wall, bow in with everyone and train hard. 

But living with FND means that every time I show up, it’s a negotiation between what my mind wants and what my nervous system can handle.

To fight with limits I never asked for.

Some days, I roll and feel fully alive in my body. I am kicking ass like Celaena Sardothien, Yelena Belova and Violet Sorengail. 

Other days, I sit on the sidelines, or watch during live rounds when my nervous system gives out.

I’ve had seizures before and after class.

I’ve had to sit out even when my soul was aching to keep rolling.

I’ve seized in my car. I’ve cried in the restroom.

I’ve had to explain, again and again, that this isn’t “just stress.” That I’m not fragile. That I’m trying. Trying to keep up with my able bodied teammates.

It means watching videos of my classmates on IG when they are able to attend class and I had to stay home due to yet again, another paralysis spell. 

It means having to watch my classmates get better and better while I progress so slowly, I don’t see any improvements.

It means watching them compete, longing to be on the mat too but knowing that it’ll never be something I can do.

It means knowing that even if I remain consistent, my peers at the same level as me might get to be a black belt before I do. 

It means learning how to be okay with all of that. 

And through it all, people ask: “But what’s really wrong with you?”

This is what’s wrong.

This is what it looks like.

It looks like resilience wrapped in exhaustion. Like hope balanced with fear.

It looks like rebuilding a relationship with my body every single day.

And still—I keep coming back, because this art gives me something FND tries to take: agency.

FND has reshaped how I move through the world.

Not just physically, but emotionally.

Living with FND has taught me to listen to my body in a whole new way—to slow down, soften, and advocate fiercely.

I’ve learned to self-advocate. To slow down. To rest without shame.

I share this because I know how lonely and confusing this diagnosis can feel.

If you’re out there living with FND: I see you.

You’re not imagining it.

You’re not alone.

Today, I raise awareness.

For every story that wasn’t believed.

For every body still learning how to function again.