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How Conversion Disorder Has Taught Me to Live Through the Unexpected

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I used to think sharing my life with severe anxiety was hard, but now I think it was all just practice, a gentle but realistic warm up for this new thing I share my life with. It’s called functional neurological disorder/conversion disorder.

In a nutshell, it’s a rare condition that usually is triggered by a physical or psychological trauma and leads to very real (sometimes severe) physical symptoms. Basically, messages from my brain stop getting to parts of my body. It’s a completely unconscious process and something I have very little control over… but seriously wish I did.

I was diagnosed with the disorder five years ago, shortly after our first baby was born. We were just a few days home from the hospital, and my husband woke me up so I could give our newborn a nighttime feeding. I sat there in the rocking chair, confused at what I was feeling. I couldn’t move. I couldn’t think. I couldn’t even lift my head enough to look at my husband in the eyes. The most I could do was part my lips enough to mumble, “Something’s not right. Something’s not right.”

I said it over and over, thinking somehow the words were going to bring me back to myself and save me.

An ambulance ride and 12 hours in the Emergency Room later, I received the diagnosis.

And then they sent us home – my body not much better off than when I got there and with absolutely no clue of how to get better.

When things aren’t going right with your body, and you’re finally given the reason why – a diagnosis – you want to know everything about it. How can I treat it? How can I prevent this from happening in the future? You want answers, and you want them as fast as you can get them.

But answers seemed to be in short supply.

Instead, I was left out on an island with nothing but a label and the reassurance it wasn’t going to kill me. Even Google seemed to just shrug its shoulders and stare blankly back at me.

Most of my doctors had heard of the disorder, but few understood it and even fewer had any experience with it. More often than not, I was the one taking on the role of educator — never speaking from knowledge, just experience.

Over the next three months, my body regained its strength little by little. I began caring for our baby boy one responsibility at a time, and I reached for healing. What I didn’t realize then, that I do now, is healing is rarely granted “overnight” and doesn’t always come in the form of a cure.

Even though recovery seemed slow but steady, my anxiety became absolutely debilitating. Out of total desperation, I took the only step I knew to take and started seeing a new psychologist (for the fourth time in my life). Besides being miserable, I was a mom and a wife and I needed to be OK! And thank goodness for that strong motivation, because the work was hard. I met with the psychologist weekly, sometimes more and began what I call “mental training.”

He told me in one of our first appointments, speaking more of the generalized anxiety disorder (GAD) than the conversion disorder, “There’s no cure for what you have. What you can do is learn to manage it.” Brutal honesty.

So like a loyal marathon runner listening to her coach, I trained with the end goal in mind: control over my body and, well… life.

But conversion disorder wouldn’t have it. Like an annoying fly tirelessly buzzing around the room, it refused to leave me alone.

An overloaded week put me flat in bed for days. Staying up just a little too late left my body so weak I couldn’t even get to the bathroom on my own. An unexpected spike of pain or rush of worry sent my body into uncontrollable, seizure-like shaking. Major overwhelm – in any form – left me so sick and miserable, it felt like I was dying all over again.

I spent four years on this island called conversion disorder. And let me tell you, it’s a lonely place to be.

A few months ago, when my right leg and arm mysteriously became weak and eventually useless, we couldn’t help but wonder if this condition that was now a part of our lives was playing a role. The thought ran through our minds more than once but always ended up being tossed in the “Definitely Can’t Be That” pile. What was happening to my body was just so different from last time.

It was a moment of surprise – and frustration – when the doctor at the ER said so matter-of-factly: conversion disorder.

Just when you think that nagging fly is finally giving it a rest, he appears out of nowhere. He’s got the whole house to occupy but he insists on flying in front of your face, buzzing around your ear, and walking with his dirty little legs all over your lunch.

Four years of intense mental training, sacrifices for health’s sake, and heavy duty battling… and it all came crashing back down on me. An avalanche both inescapable and crushing.

In a moment like that, I find myself with two options.

1) Curl up in a ball and cry. Forever. (Because at that point, I’m pretty sure I have enough tears to last that long.)

Or 2) Curl up in a ball and cry. Then blow my nose, grab a shovel and start digging myself out.

It may have been the fact I was sitting in a hospital bed, unable to get up on my own free will. Or it may have been two summer’s worth of camping overnighters and zoo trips I’d already missed out on. Or perhaps it was something else entirely that made this decision an easy one.

So with what could only be recognized as God-given strength, I looked at conversion disorder straight in the eyes, ready to put it in its place.

I had no idea how to do it or where this decision was going to take me. All I knew was this time, I was bringing my fly swatter.

Follow this journey on Simplicity Avenue.

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Thinkstock photo via KatarzynaBialasiewicz

Originally published: July 12, 2017
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