How the Stigma Around Functional Neurological Disorder Affects Me

I hear the words, but have no idea what they mean. “You have functional neurological disorder (FND). Go away and you will be better within 12 months.”

Three years later, I’m still trying to understand FND; my symptoms have worsened to paralysis, slurred speech, weakness, dizziness, pain, blurred vision, seizures. I could go on, as the list is endless.

Will I get any better? Who knows? I’ve seen so many neurologists and each one has a different take on FND. Most think it’s all “in my head” and I’m putting it on. Like I’m that good of an actress! They send me away with different medications which do not work; I just struggle with side effects, so I stop taking them.

People ask what’s wrong. I try to explain it’s a problem with my nervous system sending and receiving signals, and I need to retrain my brain. So my friends and family think they are helping by telling me “you can do it, just think positively and you will walk or talk,” or “stop stressing and be more positive.” If only it were that simple. I try to smile, but deep inside I’m angry and hold back the tears as they don’t get it, they don’t understand. But how can they, when I don’t understand it either?

The stigma associated with FND haunts me every day; I won’t go to the emergency room or the doctor when I’m at my worst for the fear of them looking down at me, and thinking I’m faking my symptoms. So my partner and I end up arguing… well, I try arguing with hand signals, which is probably a funny sight. Many a time I’ve broken down in tears when she has called the ambulance, but I can’t respond. I’m just locked in a body that doesn’t work.

So I try to learn and research as much as I can about FND, to raise awareness to stop the stigma. Will I win this fight? Who knows, but I will keep on trying.

Editor’s note: Please see a doctor before starting or stopping a medication.

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Image via contributor/Michelle Tuttle – MCT Photography