Mental Health Awareness Month: My Experience with Selective Mutism

In honor of Mental Health Awareness Month, I thought I would share my experience with selective mutism, a childhood social anxiety disorder characterized by a child’s inability to speak and communicate in select social settings, such as school.

I only learned what this disorder was called about a year ago when I was scrolling through my Facebook feed one morning in bed and noticed a New York Times headline that caught my eye. I only had to read the first few sentences before I recognized my childhood self.

Not knowing what to do with myself, I sat on the edge of my mattress staring at the article and thought about who I could text with this news, but instead just ended up crying. I didn’t cry out of sadness. I felt a mix of excitement, relief, and validation knowing that nothing was fundamentally wrong with me as a person, but that this was something with a name that happened to me.

As I read more about selective mutism, the pieces started to fall into place. So many aspects of the disorder applied or still apply to me. I was a perfectionist afraid to make mistakes, embarrassed to eat in front of others so I often tried to hide in a bathroom during lunch periods, had/have anxiety in crowds, and was/am especially sensitive to sounds, light, and touch (Sensory Processing Disorder). As a child, I hated having to wear socks or underwear. They felt so uncomfortable on my skin that I would hide them in the house so my mom couldn’t force me to wear them. Thankfully, I’ve grown out of that phase, but still prefer loose clothing and low sound volumes.

Many kids with SM come from multilingual families or have been exposed to another language during their formative language development–my mother is German and I spent time with family in Germany as a child. It’s also common for kids with SM to suffer from depression as adults, as I do. And although I never received an OCD diagnosis, I wouldn’t be surprised if I had a mild case. I’d often do things like repeatedly pour beads out of their container and put them back in according to color and shape. Every school photo until later in high school shows me with a frozen, blank facial expression, a common characteristic of SM and a perfect visual expression of the fear that gripped me during social (one-way) exchanges.

2012-07-15 00.06.46

My blank expression typical of SM sufferers

There wasn’t much information available about SM during my childhood, but my mother was my lifeline and helped me through it as best as she could. She suffered from the same disorder as a girl and encouraged me to push my boundaries, but with a gentle touch. She may not have known at the time, but what she was practicing with me was behavioral therapy, a recommended treatment for SM and other mental health disorders. She guided me to take risks including entering the elementary school spelling bee which, looking back, was a huge feat.

I also had teachers, two in particular, who helped me through it. One of my teachers had the idea to keep a running journal since I couldn’t speak in class. He wrote in it then handed it off to me and I wrote back to him and brought it back to him in class. To this day, I feel more comfortable and my thoughts flow much easier when I write rather than when I speak.

Despite the isolation, loneliness, low self-worth, and lack of confidence that came with SM, I am strangely grateful for the experience. For better or worse, it shaped who I am as a person. As I get older I learn to appreciate who I am more and more, even if I need to remind myself daily. Without SM, I don’t know if I would be as compassionate and sensitive to others’ feelings as I am. I may not be as observant as I am or be able to examine a situation through anyone’s lens but my own.

It also made me realize something that keeps me going whenever I just can’t bring myself to get out of bed or someone hurts me deeply–I am much stronger than I thought and ultimately, I’ll be okay.

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