Coming Out, Again: How an Oddball Disorder Sent Me Back to the Closet
Last week I discovered that there’s a name for a problem I’ve had since I was 11. I’ve learned that other people have the same problem, and quite a few have it way worse than I do. I found out that my “quirk”—one that close friends have lovingly tolerated, others have derided—isn’t just my own, solitary, rather embarrassing character flaw, but something very real.
I have Misophonia—literally, “hatred of sound,” but that’s kind of misleading. I couldn’t live without my Beatles bootleg collection or my vintage Martin guitar, so I must love sound too. Here is misophonia in a nutshell: certain normal sounds that people make, invariably quite soft sounds, register in my brain like a hundred nails on a chalkboard. Open-mouth gum-chewing, for example, or aimless whistling can torment me, as well as some visual stimuli. My thinking short-circuits if someone habitually shakes a foot anywhere in my field of vision. But because I’m otherwise a rational, relatively normal person, I have a cache of coping skills: I never leave the house without an iPod (a portable refuge), I have a list of handy reasons I may need to step away quickly, and sometimes I just have to suck it up, which is incredibly difficult. On a plane, I’ll barely notice the engine roar, but I’ll be completely unhinged by the guy ten rows back who doesn’t know that Kleenex can bring his chronic sniffing to a halt. In those moments, strangers would have no way of knowing that I’m desperately eyeing the escape slide, but my partner now reads my body language like Sherlock Holmes and scans the crowd curiously to find the ordinary thing that has hijacked my brain.
I know, it sounds ridiculous. Or you might be thinking, “But everybody hates it when people pop their gum. It’s just gross.” Yes, it’s gross (and bad manners), but is it profoundly upsetting to everybody? Even before I had a name for it, I’d try to explain it to friends. If they didn’t casually dismiss it, they’d breezily offer, “I’m like that too! It’s so annoying when people don’t blow their noses.” Again, let me explain. If there isn’t a good chance that you’ll either start crying or suddenly need to “use the restroom” because someone won’t stop smacking lunch, you don’t have misophonia. Then there’s the worst response of all: I should just get over it, as if my maddening neurosis were a choice. Fortunately, to those I’m closest to, it exists as Abby’s amusing, at times exasperating, little eccentricity. They accept me, thank heavens. I don’t talk about it with anyone else; I just deal as best I can. After all, it’s not cancer.
However, now that I know I’m not alone in this, I’m coming out, albeit with great trepidation that in so doing, I’ll lose all credibility as a serious person. I might seem…crazy. Or worse, silly. I’m coming out because as I learn about other people’s struggle with misophonia, I see nothing silly about it. In fact, the condition itself is rarely the biggest problem; lack of understanding by loved ones is. To other people, this sensitivity makes no sense. They downplay it, reject its existence, or resent being inconvenienced or challenged by it.
As a lesbian, this all seems oddly familiar. I’m not suggesting that having a mental health issue is equivalent to being LGBT, but we humans do have a habit of condemning or dismissing things we don’t understand. The result is that too many of us are painfully isolated because of it. A reporter friend recently told me that the more he meets people in his work, the more he understands that what is insignificant to one person means everything to another. We’re all just one hormone surge, one neuron ping away from experiencing the world totally differently from the person next to us. It reminds him to summon compassion before judgment, to see commonality in our very difference.
For me, I’m taking my new diagnosis as a humble reminder of what it’s like to feel so different. It’s been a long time since I had coming-out jitters. It’s probably good for me.
Abby is a civil rights attorney-turned-author who has been in the LGBT rights trenches for 25+ years.