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- I am Autistic. - June 17, 2020
I’m so OCD is going to be a recurring article theme. Obsessive Compulsive Disorder is my primary diagnosis and I’ve noticed that there are many circulating misconceptions and misunderstandings of the disorder. I’ll be writing about different compulsions and areas within OCD’s jurisdiction, in the hopes that discussion of it will help foster understanding and compassion.
“Oh, I have that too! I pick at my nails all the time.”
There’s nothing unforgivable about those sentences. The people who say that to me are usually just trying to forge a connection through a shared quirk, or make me feel at ease in a moment I likely appear to be uncomfortable, or validate their own understandable frustration with a bad habit of theirs. I’m guilty of those things, myself, in other ways. Despite my understanding of it, those sentences nip at me every time I hear them. I wish I knew more people who had Excoriation disorder. Excoriation, or picking as I usually call it, is rare and uncomfortable, and by nature it alienates the sufferer from their non-picking contemporaries.
Excoriation disorder, or dermatillomania, is characterized by the sufferer’s inability to stop picking at their own skin. A few key elements of the disorder separate it from a layperson’s nail habit (and other body-focussed repetitive behaviors). Among other things, the picking must cause significant, function-impairing distress and persist despite repeated attempts to stop. Like any disorder, the thing that really sets it apart from a slump, bad habit, or personality trait is the degree to which it hurts and the degree of helplessness that’s involved. There is a suspected strong relationship between OCD and dermatillomania, with picking often conceptualized as a compulsion.
I’ve suffered from dermatillomania since eighth grade. In the two years preceding the dawn of my disorder, I suffered from trichotillomania, which describes the inability to stop pulling one’s hair out. My hair part- split down the middle- was almost two inches wide, for I’d pulled out nearly every strand of hair along it. I’d sit for hours atop my bed, plucking blonde strand after blonde strand from my scalp before glancing briefly at it and tossing it behind my bed. Balls of hair accumulated under my bed, and my dog was once spotted munching on one, much to my humiliation (and his delight). There was little to no pain involved, and with each pluck! came the most brief, intimate sense of relief that was quickly replaced by an insatiable desire to do it again. My eyes would glaze over and I would pluck deep into the night, every night. I was twelve. This is the glamor of OCD.
Come the end of seventh grade, my interest in maintaining my looks spiked and I was too ashamed of my bald patch to continue the habit. I bought droves of makeup, begged my mother to take me shopping at Hollister and Forever 21, and renounced trichotillomania! I wish it had been that simple. My OCD didn’t stop, or even lessen. I immediately replaced my hair plucking with something more concealable and insidious. It started with my upper arms, outward facing. I’d keep my nails long and sharp so I could dig them into my skin, forming perfect circles, making just the right scratch, achieving just the right pick. Come the middle of eighth grade, I was glancing down to my arms dozens of times a day, sneaking in a quick pick to tide me over, and when night fell, I’d almost always be found huddled on my bathroom floor, lights bright and blaring overhead, scratching and picking away. I didn’t wear tank tops, and if I did, I’d apply face concealer to my most obvious, often still raw, picked spots. I was fourteen. This is the glamor of OCD.
My picking quickly spiraled into something worse than just spots on my upper arms. As I entered high school, nearly every spot on my body was fair game. The most popular locations were my upper chest, outer arms, face, shoulders, and knees. Some days I’d be able to limit my quick picks to a dozen or so occasions and simply an hour spent in the bathroom nightly, but if I had a lot of homework, had a nasty fight with my parents or sister, was particularly worried about a social event or relationship, I could spend up to four hours in the bathroom, my shirt spotting with blood, eyes glazed over, music playing and the shower’s steam clouding the mirror over the counter. My bathroom “sessions” stole away time that would otherwise have been spent sleeping or doing schoolwork. These sessions would end deep into the night, and I’d be exhausted and miserable, but I’d be satisfied in a way I didn’t understand. If I didn’t pick for long enough, my body would begin to buzz, so to speak, and the itch would grow until I satisfied it. After “snapping out of it,” I’d douse myself under the showerhead for ten minutes or so before dashing to bed, able to sleep soundly only then. This is the glamor of OCD.
Throughout my high school years, the amount of time I’ve poured into stopping myself from picking and into concealing my picking would be astronomical, if a tally was kept. I’ve bought nearly a dozen bottles of body makeup, many dozens of cheap, CVS stockings, boxes upon boxes of one-inch-by-one-inch band aids. I bought the paid version of the app Facetune to blur out my spots from any picture I would post on Facebook or Instagram. I’ve spent hours perusing the internet for a fashionable, long sleeved swim shirt to conceal my upper body from others in the summer. I’ve basked for many dozens of hours in the hot summer sun, not a drop of sunscreen on me, in an effort to “burn off” my picking spots. Nothing stuck. I’m perpetually scared of the judgement of people around me, especially in the warmer months. I’ve fielded questions like “are those bugbites?” (yes, damn mosquitoes! I’d eagerly say) and “eww, is that some kind of disease?” (yes, damn spattergroit! I should have said). This is the glamor of OCD.
I’ve tried nearly every method I or anyone around me can think of. I wore gloves, taped my fingernails, clutched onto hand-held games (none worked; I’d put the game down, take the gloves and tape off). My parents took me to a specialist at Yale who couldn’t make a dent in it. My psychiatrist put me on a fringe medication that had been shown in a study or two to possibly reduce picking urges. I kept my bathroom door cracked while my parents timed me- fifteen minutes maximum- in the shower, at night. I recruited my friends and family to exclaim “picking!” when they noticed me doing it. One year, I religiously got a very mild spray tan every three weeks based on a theory that if I just wanted clean skin more, as I might when I’d spent good money on a flawless glow, I would be less likely to engage. I didn’t understand that my behavior had nothing to do with what I wanted. If it did, I’d never have started it. I was powerless.
In his book Brain Lock, author Jeffrey M. Schwartz presents a few dozen cases of OCD patients he has treated throughout his career. Each case was different, but one of the threads that ran through them all was a deep sense of shame. The OCD sufferer knows full well that their behavior is ridiculous, unnecessary, a distraction, that it is unsettling for others to watch. Though they desperately want to, they can’t stop performing their rituals. The brain composition of the OCD sufferer is chemically different than that of a neurotypical brain. OCD is not a lost cause, and therapy and medication have been proven to have profound healing effects upon it. It is, however, far more complex than “just stop!” It, and both of the “mania”s, are so much more than just a bad nail habit.
I still struggle with dermatillomania. It’s much less severe than it has been at multiple points in my life, and I understand it far better than I ever have. However, it’s a chronic disorder, and there is a chance I’ll be struggling with this compulsion, to varying degrees and perhaps in different capacities, for the rest of my life.
For me, recognition of what my disorder is goes a long way. I’ve only ever met two other dermatillomaniacs, which speaks to how rare it is. As goes for the other criticisms of the trivialization of OCD, the simple acknowledgement that the disorder exists and is extremely difficult- compassion, in essence- goes a long way. As weird as it seems to you, compulsions are many times more scary for the person who’s chained to them. If you couldn’t relate to my story, I hope it at least helps you reach a better understanding of the various futilities that the people around you engage with. We all want to feel as if we’re in the driver’s seat of our actions, and some people’s brains aren’t wired to feel that way.
We all want to feel as if we’re in the driver’s seat of our actions, and some people’s brains aren’t wired to feel that way.
If some part of my story resonates with you, and/or you suspect you may suffer from a “mania” or OCD, bring up your concerns to your doctor! Social media, socialization and general insecurity make this disorder particularly difficult to speak up about, but doing so is the first step towards ridding yourself of it. Unlike some disorders, OCD is very treatable, or at least manageable.
One way I’m taking control back is by eliminating my habitual Facetune blurring of the pictures I post. It’s a scary leap for me, but it says to my followers, and most importantly to myself, that I’m not ashamed. I used to be, and I may be in the future, but right now I know I’m doing the best that I can. I’m tackling my picking compulsion with my doctors, a medication targeted towards OCD. I’m experimenting with replacement behaviors and reading as far deep into my ailment as possible. As I do those things, I slowly but surely wrestle back control from OCD. If there’s any physical ailment, disfigurement, or similar that you wear, give posting it, unedited, a try! You can always take it down, but I’m willing to bet you’d feel a bit more powerful if you let it out.