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What It Was Like to Grow Up With OCD

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Editor’s note: This piece goes into detail of the thoughts of a person with OCD and may be uncomfortable if you struggle with the condition. It is based on one person’s experience with OCD.

I was always really quiet. When I began writing about my earlier experiences, my parents were shocked. They’d had no idea of the existence of the constant rituals and obsessions that filled my childhood.

I began the compulsions when I was in third grade. I had a thing where everything had to be “even.” If I bumped my left foot, I would have to bump my right foot in the exact same place. But that wasn’t fair to the right foot because the left one went first. So then I would again tap the right foot in the same place and the left one. This was seen as “symmetrical” in my head. But sometimes while tapping the other foot to make it even, I would tap it in the wrong place and have to finish the first set, then do a second one in the second place I’d tapped. And if I messed up again, I’d have to keep track of it all in my mind as it added up and try to finish every ritual lined up in my head.

Letters, numbers, days of the week, and months of the year have colors. If anyone says or draws something that contradicts that, it bothers me. In second grade a teacher was discussing with the class that months of the year can have colors associated with them. She asked what colors could be associated with September (the current month). I raised my hand and said blue and white. She laughed and said September was too early for snow and winter colors. I was confused. What did snow and winter have to do with September being blue and white? Everyone else said colors like orange and red, which I still cannot understand. I know September makes them think of autumn. But I honestly in my head cannot visualize September being anything but blue and white. September being orange is just… wrong. So wrong.

When I was little, I counted everything. Stripes on a rug, window panes, squares in the sidewalk. I counted every single letter and the ‘holes’ in them too (like the loops in an O, P, Q, R, etc.). But they always had to count to an even number. I would change whether or not I counted the dot of an I or the loop of a certain letter to make sure the count was even. I would sometimes count the letters in a word or sentence 10 times before moving on to get it just right.

Eventually, I realized the counting was just plain ridiculous. Why am I wasting so much time on this? I began to coach myself to stop counting and blinking. I abolished the counting, but the blinking remains with me to this day. I would set a time limit and count to that, trying not to blink to a rhythm. I never got more than five seconds. I used to joke with myself in my head that I was running an, “Anti-Blinking School.” I had a whole commercial I would run in my mind, usually during circle time at school. I worked on this for some time before finally giving up and moving on to counting. With the counting I was more successful. I would stare at a word for a set amount of time without counting the letters and loops. Within a year I had completely stopped counting letters and patterns. And then I forgot about it, until now as I’m writing this.

I have lots of facial tics, mainly with my mouth and my eyes. I blink a lot, usually in special rhythms. I do weird things with my mouth, stretching it and opening my jaw very wide. Most of my tics have a rhythmic, almost musical beat to them. When thinking in my head (which I do often of course) I-have-to-clack-my-teeth-to-ge-ther-with-ev-ery-syll-a-ble. My breathing, eye movements, clicking sounds I make with my mouth, my footsteps, the way I scrape my feet on the sidewalk, blinking, and lots of other things are only a small part of them. I consciously think about them every moment. Most people don’t really pay attention to things like that. Especially things like breathing – it’s something you can do on purpose, but if you’re not thinking about it, it happens naturally. But I’m always thinking about my breathing.

I can shift earbuds out of my ears without using my hands. I’ve never tried, but I like to imagine I’d be good at the game of getting the Oreo from your forehead to your mouth with your face. My tics are like trying not to blink – you can do it for a while, but eventually you have to give in. My face muscles get sore by the end of the day. If I’m walking I get dizzy from my eyes darting around so fast. If it happens at night I can’t sleep because my eyes are darting around under my eyelids. I absolutely demolish my fingers nails (most of them have been picked at well beyond the quick). The tics goes through spells – weeks with nothing and then a day of headaches from doing it so much.

I never really minded or even noticed my tics until middle school when people began to ask me, “Why do you make those sounds?” “Why do you always do that thing with your face?” “Why is your eye twitching like that?” “Do you have something in your eye?” I began to think it was weird and that I should stop. But I couldn’t. I try my hardest not to let them bother me, but I’ll be honest, they do. It’s embarrassing. I have a lot of insecurity about my tics, especially my facial ones. Sometimes I’m brave. I respond, “It’s a tic.” To which they reply, “Oh, I see,” and never mention it again. Other times, I’m weak, and embarrassed. “Oh, I’ll go grab a tissue to get that eyelash out of my eye…” I rub the tissue against my eyes and try to relax my muscles and stop ticking. Lots of negative thoughts float around through my head. Why did you say that? That’s not true, that was a lie! Why did you just lie to that person? …because I’m embarrassed. I panicked. Why? You know it’s nothing to be ashamed of. I know, but it’s so unattractive. It bothers people, I can tell. It would bother me… Stop being such a baby. I return, usually ticking slightly less but still enough for them to give me a follow up question. “Still got that eyelash?”

But once, I had a friend ask me about my facial tics (many people do), and when she realized it was probably rude of her to ask she covered it up in a way that actually made me think of the whole thing differently. I watched her try to copy the movements I was doing with my mouth and eyes. With one of the tics I wink and lift one corner of my mouth and not the other, which my family says is a superpower.  “Wow, I can’t even begin to do that. That’s impressive!” she said. It made me feel like my tics were a special talent.

Nowadays my obsessive-compulsive disorder manifests itself in different ways. Sometimes it’s little things, like how I never seal an envelope until the last minute because I am always afraid the letter is somehow no longer in the envelope (but who writes letters anyway, right?). Other times it’s in the form of sudden, unexplainable feelings of guilt and anxiety. If my mind turns to earthquakes, my heart starts to race and I feel like the ceiling will collapse on me at any moment. I can be sitting eating a normal dinner and all of a sudden feel extremely nervous and panicky, and I shake all over. But I go inside anyway. I go to school. Because I know being inside is an absolutely necessary part of life (not to mention warm in the winter and cold in the summer, and it’s cozy and has electricity, and I need to charge my phone…).

No matter how many times I shower I always think I’m gross and dirty. I can still be wet from a shower and all of a sudden I think I smell like sweat again. I always smell like that (to me). I ask my mom and she says I smell fine. But not to my nose. Even in the shower, I can be scrubbing away and still smell, so I scrub harder… But from what others say it’s all just in my head. Every time I get out of the shower, I get an overwhelming feeling of guilt, like I just did something terrible. I tremble, I shake, my stomach tingles. I have no idea why. When you have OCD, you cannot always trust that something that makes you feel guilty is bad because you can just be sitting in class or chilling on the couch and then have a sudden, random, overwhelming feeling of guilt, for no reason. I can feel guilty while doing perfectly OK things and feel like I am doing something terrible. So I cannot trust that feeling guilty means I am doing or not doing something good or bad. And it’s not guilt for specifics. I never doubt whether or not something I am doing is good or bad. It’s just the typical landmark of OCD – I feel guilty, but I don’t actually think that I am guilty.

To people who don’t understand OCD, I can seem like a person who argues. A lot. Really, I hate arguing, but I can’t help it. That’s because, to a lot of people, my arguing just doesn’t make sense. If I am arguing with someone about something, they would usually assume I want to “win” the argument. But in reality, all I want is for them to understand what I am saying. If they give up and say, “All right, you win, you win!” I will proceed to explain to them why I “lost” and why they “won.” It’s like the OCD needs me to press its point that they don’t understand what the OCD is saying. It needs to press its point that it is saying something different than they are, and it has to keep changing its argument to make sure it always differs from theirs, proving we’re not saying the same thing. And during the whole thing I just want it to stop and be over. It goes on and on and on. It feels like they usually don’t understand because they usually cannot understand why anyone would want to argue if they didn’t want to win. But that’s just it: I don’t want to argue. I don’t want to win.

If someone says something I feel is “wrong,” I just… have to correct it. If I get the feeling someone doesn’t understand me (which happens often), I repeat what I said over and over and over, until the person is ready to scream in frustration. Thing is, I want to scream in frustration more than they do. I just get hooked if I feel like someone needs to understand something, and I can’t stop, even though I really don’t care about it at all.

A perfect example was when as a teenager a friend was discussing rules for a sleepover. “Try not to make too big of a mess, or you’ll have to help us clean up in the morning,” they began. I immediately blurted, “Well, if we made the mess, wouldn’t it make sense for us to clean it up?” They looked at me funny.  “…Anyway, just try not to make a big mess–” “But if we made a mess, wouldn’t you want us to clean it up, instead of helping you clean up our mess?” They gave me a bemused look. “Um… if you want to clean up my house tomorrow, you go right on ahead…” I just felt so frustrated. No, I really don’t want to clean your house… But you said it wrong, I had to show you… And then, my natural reaction, Please don’t make me clean your house…

This is how I feel in one of those moments (as said by me in an outburst once): “When they think they understand but they really don’t, and I’m telling them what the problem is but they aren’t believing me, so they keep repeating what they think is the problem, which isn’t the problem, but they think it is, because they’re not believing me when I tell them what the problem really is.”

I feel like people must think I’m really irritable. I am what “normal” people must see as being, “stubborn.” There is a key difference, however. A stubborn person refuses to give in because they believe they are right and don’t want to admit when they are wrong. I do not want to argue at all but can’t stop. Worse, I’ll argue the most bizarre and ridiculous points to keep it going. A lot of people seem to actually think I care about all the stuff I’m picky about. I seriously pick apart others’ grammar, yet I use terrible grammar and slang all the time myself. I guess they usually think that in my head I believe the words I am spewing out and that if I am told what I did “wrong” I can then fix it. For example, they probably think it will be like informing me that the color I’ve been calling blue my whole life is actually green. I could fix that. I could from that point forward remember that that color is green. Easy fix. But with my OCD, no. I knew exactly how to respond. I wanted to respond the polite way, very much. The problem was that I just… couldn’t.

When it comes to my OCD, though, I am actually pretty lucky. I have a lot to be grateful for. My OCD is very helpful. I have a great memory. I get good grades. I put almost ridiculous amounts of thought into every single word anyone else says and analyze it (which isn’t particularly good in itself but it shows the concentration I can have). I can’t stand procrastinating on my homework. I’m organized. My OCD gives me the ability to work hard and understand complex and abstract topics that I enjoy. It lets me see the world the way I do. I think of my OCD as a superpower that is sometimes too strong for me. I just need to keep funneling my OCD into good.

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Thinkstock photo by Lumina Stock

Originally published: December 30, 2016
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