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I’m Done Apologizing for a Disorder I Can’t Control

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I live with functional neurological disorder (FND), which means that I can have flares of extreme tremors that can prevent me from doing much of anything. When my tremors are at their worst, my legs, arms, and head shake uncontrollably. The tremors are uncomfortable for me, and, admittedly, they’re uncomfortable for other people to see. FND is an invisible illness that sometimes becomes extremely visible with my tremors. It can be largely absent for long periods of time, and can flare up for no reason.

There’s still so much stigma that’s attached to functional neurological disorder, because it blurs the line between a neurological and a psychological disorder. It’s still often referred to as conversion disorder, which is a diagnosis that was coined by Freud for people who were experiencing symptoms that couldn’t be found to have an organic origin. The name conversion disorder suggests that people who struggle with it are somehow subconsciously “converting” difficult emotions into physical symptoms. And because so many people, and doctors unfortunately, still don’t understand what FND is, I want to try to make myself as small as possible and hide myself away when my disorder becomes more visible. My fear is that I will somehow be discovered to have a neurological disorder that can have a big psychological component.

Much of the time when my tremors are bad, my tendency is to over-apologize for making other people uncomfortable. I will be in the midst of full body tremors and still be apologizing for other people having to witness the tremors. Recently I went through the biggest flare I’ve ever experienced with my functional neurological disorder. I spent a lot trying to do damage control with the people who saw my FND the most. I have apologized so many times for this disorder that is incredibly hard for me and has hugely affected my life this year. I felt like I wasn’t doing enough to try to stop my tremors, and that in and of itself made me a bad person. Because functional neurological disorder can have a psychological component, I felt like my flare was happening because I couldn’t handle my life.

April is functional neurological disorder awareness month, and for this awareness month, I’m daring to stop apologizing for the disorder that I cannot control.  So what if my disorder can be affected by stress, anxiety, or depression? That doesn’t make it any easier to deal with, and that doesn’t mean that I can control or stop my tremors. I refuse to hide myself away anymore when my disorder becomes more difficult or visible. I refuse to continue to apologize to make other people more comfortable. I am choosing to shout about my struggle with functional neurological disorder, because my hope is that with more people shouting about FND, there will be more awareness brought to the disorder. My hope is that when someone talks about FND, they won’t be met with blank stares or judgment. I am daring to take up space, because having functional neurological disorder doesn’t make me any less worthy.

Getty image by Westend61

Originally published: April 25, 2022
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