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How the Medical System Is Betraying People Living With Functional Neurological Disorder

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Maybe it happens after a life-shattering traumatic event, maybe it happens spontaneously. But it happens — symptoms begin crawling into your life, and slithering into the cracks.

You find yourself having seizures, exhausting or agonizing spasms, or may even end up paralyzed. Suddenly, your life is no longer what it was. So you do what you’ve been trained to do ever since you were young — you turn to medical professionals, ask them for help, and, as you do, the same questions echo over and over again.

What’s going on?
Is it dangerous?
Can anyone help?
Is there a cure?
How long will this go on for?
Will it impact my life expectancy?

The people around you are concerned. They see your suffering. Maybe it’s the stranger on the street who sees you collapse, or your family or friends. Maybe it’s the paramedic who drives you to the hospital, his face ashen as he says he’s never seen such bad neurological symptoms in someone that young before.

You arrive at the hospital, and the endless testing begins. Blood draw after blood draw. Scan after scan. Hold your arm this way. Follow the light. Walk in a straight line. Lift your leg when I push down.

Then the results come back, or maybe the doctor suspected all along. They tell you there is nothing wrong. Maybe they even accuse you of faking and get angry with you.

Then they tell you that you are free to go home. But you’re not free. You’re confused, so incredibly confused. And to top it all off, you’re left with an impossible dilemma: there is something wrong, but they’re telling you there’s nothing wrong.

The people around you are similarly confused. But medical professionals surely know what they’re talking about, you think, so you assume they must be right, and you try to push yourself. Tell yourself it’s all in your head.

That’s when it gets worse. Your symptoms begin to escalate and they won’t stop. You’re terrified and you’re rapidly deteriorating.

You see a neurologist then, and they tell you you have functional neurological disorder (FND). Maybe they explain it well and refer you to get help, maybe they don’t. Perhaps they refer you on to see a psychiatrist, or a physical therapist.

You’re then told to stop thinking about your symptoms. To ignore them. To act like they don’t exist. Your leg is paralyzed, but you’re told to move it anyway. Your spasms are exhausting and endless, but you’re told to not let them affect you. Your driver’s license is taken away due to seizures and so you lose your job, yet some still think you’re “doing it on purpose.”

Support systems begin to fall away, confusing the term “functional” for “voluntary.” They think you must be able to snap out of it, and when you can’t, they begin to desert you.

Or…you isolate. Prevent anyone from knowing about what you’re really going through. Shut yourself away in a room and give up on ever having support. So just like that, in a matter of months, you lose your independence, your quality of life, your belief in yourself and in your own experience, your family, your support networks, your friends… and your mobility.

On top of all of that, professionals are often unfamiliar with the disorder and treat you with contempt, so you no longer even feel safe turning to a psychologist. Throughout this entire process, you’re isolated, alone, afraid, helpless and disbelieved.

If FND is truly a combined physical and psychiatric disorder, caused by already present trauma or extreme distress, this diagnostic process, along with the sheer amount of misinformation and half-hearted explanations, has to singlehandedly be one of the greatest failures of psychiatry and neurology in the modern age.

It is a process that compounds and amplifies trauma. Indeed, it is also a process that is traumatic in and of itself, especially if the person has a history as a survivor of domestic violence or trauma, and has already been gaslighted throughout their life.

Maybe recovery would have been possible, had the system taken those with FND seriously and treated them with compassion and respect. But if FND is a psychiatric and physical fracture of the mind, the diagnostic process is the failed plaster that ends up setting the bone incorrectly for life.

Alternatively, if FND is an entirely physical disorder, with a yet-to-be discovered cause, this process is harmful in an array of other ways, gaslighting people with FND into trying to summon past traumas in the midst of an already present crisis, and causing them to doubt themselves.

Either way, it is crystal clear that the medical system needs to do better when it comes to patients with FND.

There needs to be clear explanations, ones that stress the validity of symptoms as real and involuntary. There also needs to be compassion and empathy for the devastating consequences this disease can have, along with medical transparency and a sense of professionalism that speaks about a patient in the same way, whether it’s in front of them or behind their back.

This, in my opinion, is how we heal:
By being heard.
By being believed.
By being respected.
Through clear communication.
And through funding for further research into this complex disease, and the endless search for a cure.

Originally published: August 21, 2019
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