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Masking Who You Really Are When You're Neurodiverse

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I performed onstage for the first time when I was 15. I don’t remember the part I played, but I do remember the feeling of being onstage, of being accepted by the audience, of being understood, of being someone else. I continued performing onstage through high school and college, but what I didn’t realize until much later was that I spent my entire life performing offstage, as well.

I am neurodiverse with sensory processing disorder (SPD), obsessive-compulsive disorder (OCD) and social anxiety disorder (SAD) diagnoses, which makes it difficult for me to function in society, but I hide, or mask, my pain, so I’m more accepted by others. So I’m less different. Playing a role. Because of my neurological differences, every sound, smell and touch causes me to have a primitive reaction: I fight, flee or freeze. This makes most environments feel unsafe and overwhelms me to the point that I feel disoriented, confused, sick. But I pretend I’m OK and often disassociate with my body to cope. Leaving myself. Losing time. I also have a difficult time processing movement, time and temperature, which keeps my arousal level at a dangerous high and means I will eventually come crashing down. But I hold it in until I get home, and we all know how agonizing it feels to hold something in.

Due to my processing, it is often difficult for me to think and to speak, to function in an acceptable way, which makes it hard for me to interact with others. But being taught from an early age what is considered acceptable behavior, and that my natural behavior is often deemed unacceptable, I push myself to meet the needs of others and, in turn, neglect my own. I try to act right, to put my mask on and to go on for another performance. But what I didn’t realize until recently, at 37, was that I was acting and my daily performances were destroying my life, causing me to have frequent meltdowns and to feel depressed for days. Hating myself for my differences. Preventing me from seeing my gifts. Feeling “crazy.” Wanting it all to end.

My differences have affected every job and every relationship I’ve ever had, for there is only so long I can keep the mask on before it slips off. Then people see the real me — my sullen-looking face, my indirect or prolonged eye contact, my dimmed lights and need for quiet, my inability to speak or to interact, my avoidance of foods and social situations, my panic attacks and meltdowns — and they don’t like me anymore. I’ve been reprimanded for the things I do to help myself process at past jobs and misunderstood in relationships. So I’ve learned to conform and to keep the mask on, which eventually leads me to having meltdowns and to feeling suicidal. It’s a vicious cycle.

A former boss once asked me, “Where’s the charismatic girl I hired?” two weeks before firing me for not fitting in. Another told me I wasn’t smiling enough and my attitude needed to change, or else. Another wrote me up for my facial expressions. And I found myself in situations like this at every job I ever had. I am often just as misunderstood in personal relationships too. I was recently out to lunch with a group of people, and they chose a booth in the middle of the restaurant before I got there. Not only do I like to choose where I’m sitting to avoid any possible triggers, but where we were sitting, I felt my seat rise a little from every passerby. Because I am so sensitive to movement, with each bump of my seat, I felt myself becoming more and more overwhelmed.

Panic arose in me, and I felt the meltdown approaching. I practically ran to the bathroom (which, thankfully, was empty) and started hyperventilating. Then, I began breathing deeply, in and out, until I felt back in my body. One of the people I was with came in and told me they were moving seats, which made me feel some relief, but I also felt they would be upset with me. So I went back out feeling shame. Which is the worst thing to feel. Later, I would find out that when I got up from the booth, I made a scrunched up, angry face and began swearing. I punched my leg. I had pushed myself and it was showing. The mask had slipped off. One of the people I was with saw this and apparently said to the others, exasperated, “Did you see her do that?” As if I had done something wrong. Moments like that make me wish the mask was always on, tightly secured, so I don’t have to feel bad about what people see. So I can protect myself. What I go through to exist in their world is already hard enough. Sometimes it’s just easier to put on a mask and a show.

For over 20 years, I desperately sought help. I went to countless doctors and therapists and healers. I changed diets, jobs and environments. I even moved cities and states trying to outrun myself, but none of it worked. And then, I decided to become my own patient, attempting to solve the mystery of what happens to me, and I began to understand my neurodiverse self for the first time in my life. I began to see I’m not alone. That there are others like me. That I’m not “crazy” — my brain simply processes differently — and I started to learn how to help myself and to see my gifts. Like my ability to tap into my intuition. To have premonitions. To see signs from the universe and to know how to interpret them. To see things many don’t see.

I eventually found others like myself on Twitter, which helped me embrace my neurodiversity rather than fear it. I started to comprehend I had been trying to conform to a neurotypical lifestyle. And that was part of why I felt so “crazy” most of my life. I now understand that the neurodiverse cannot and should not be forced to conform to neurotypical ways. It is dangerous for us, because we are so often forced to mask that our true selves come out screaming. We are debilitated by the mental, emotional and physical pain that trying to conform to neurotypical ways brings us. And then we are expected to interact in ways that don’t suit our needs. Forcing us to perform. To act. And we know that even the best stage performers need a break. For without it, the show will not go on.

And that’s why the #TakeTheMaskOff Campaign was so important for the neurodiversity movement. So we will unite to show our true selves. I’ve just kept my mask on for so long I’m having a hard time taking it off. It confuses others when I take it off because they are so used to me having it on. I feel exposed. Vulnerable. Like I have some explaining to do. Like I have to apologize. Sometimes, it just feels easier to go back to the mask and to the pain with which I am familiar. Demasking is unfamiliar. And I don’t do well with the unfamiliar.

But I know it’s time to fight for our neurodiverse rights. Just like other diverse groups before us, we need to educate others about who we are and to keep fighting to not have to perform. And to not back down until we are understood. And to be accepted without our masks on. So the world can finally begin to see who we truly are.

Follow this journey on the author’s blog.

Photo by Chris Ralston on Unsplash

Originally published: December 30, 2018
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