Obsessive-compulsive disorder (OCD) isn't just about washing your hands and checking locks —although that's definitely something I do; it's so much more than that. OCD is about constant urges and negative thoughts that even I don't really understand. All I know is that it's annoying As F***.
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What is it like living with OCD?
It’s 3 a.m. everyone in the house is asleep. But I’m not. I want to be. But I can’t.
I can’t because my mind won’t shut the fuck up. No matter what I do, I’m continually driving myself insane.
As if the intrusive thoughts, constant checking, unswerving need for symmetry, order, and perfection aren’t enough.
Because nothing ever is. I mean, my lists have lists and then some.
So you want to know what is it like living with OCD. Obsessive-compulsive disorder (OCD) isn’t just about washing your hands and checking locks —although that’s definitely something I do; it’s so much more than that. OCD is about constant urges and negative thoughts that even I don’t really understand. All I know is that it’s annoying As F***. Because a majority of my mental energy is spent fighting off those negative thoughts —making it extremely difficult to focus on basic, everyday tasks. So yeah, just because you’re a neat freak, doesn’t mean you have OCD.
Because living with OCD is not something to joke about or make light of. Because this shit can lead to all sorts of self-harming behavior. I’ve lived that shit first hand. I say it like that because common misperceptions of OCD tend to focus on the stereotype of being extremely organized, which is generally true. But, in reality, this misconception does nothing to improve your understanding of what is it like living with OCD?
It merely undermines the true nature of this nasty disorder and the toll it takes on those living with it.
It’s like someone else has control of my brain
What is it like living with OCD? It’s like I’m being forced to do an endless number of completely random, pointless chores I don’t even want to do. It’s exhausting and emotionally debilitating. Cheryl Little Sutton, a real ass chick living with OCD, describes it like this. “Picture standing in a room filled with flies and pouring a bottle of syrup over yourself. The flies constantly swarm around you, buzzing over your head and in your face. You swat and swat, but they keep coming.” The flies are like the obsessional thoughts —you can’t stop them, you just have to fend them off as they come.
The swatting is like a compulsion —you can’t resist the urge to do it, even though you know it won’t keep the flies at bay for more than a brief moment.” So yeah, it’s like you’re a broken machine. Thoughts go into your head, and instead of passing through, they get stuck on an endless loop of awful nothingness. It’s like you have two brains —rational and irrational, which are always fighting. For many, living with OCD is synonymous with hand-washing, organizing, color-coding, and cleaning.
But like I already said, associating OCD with those habits isn’t exactly wrong; it’s just that this focus neglects to include an essential piece of the puzzle.
Because it’s easy to look at those behaviors and think, “Oh, that’s not so bad. I’d love to have a clean room all the time.” Or, “I hate when my room is messy. I’m OCD too.” Because what you don’t see are the thought processes behind the compulsive actions. Because people living with OCD don’t organize that shit because it brings us joy. We don’t clean because it’s one of our hobbies. Because sometimes, people with OCD don’t clean or organize at all. This is because OCD can manifest itself in so many different ways.
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So what is it like living with OCD on a daily basis?
Well, here are four things I deal with every single day:
1. My intrusive thoughts control everything.
I think it’s safe to say that most people at times think something negative —either about themselves or people around them. You believe something to be real, and yet, in a few minutes later, it usually goes away. The thing about living with OCD is that those negative intrusive thoughts stay. Because they trick you, mess with your head, and are seriously convincing. For me, it’s worse at night. As the intrusive thoughts grow louder, I decide to get up. Because I can’t pretend I’m sleeping for any longer. It’s been hours, and the idea of getting some shut-eye is just that —an idea.
The thing is, it’s not just in the evenings. It’s all day every day. Let me break it down for you. Because the basis of living OCD is that intrusive thoughts control everything. So you obviously need to know what that means. Basically, intrusive thoughts are unwanted feelings or images that are typically distressing and/or disturbing in nature. These unwanted thoughts are known as obsessions —exactly like Sutton illustrates above. They’re called obsessions because they occur over and over again.
BUT IT DOESN’T END THERE.
Because intrusive thoughts usually result in some type of compulsion —a repetitive behavior or action a person uses to try to make his or her obsessions go away. They are anything that challenges the thoughts, rituals, and things you must do to feel safe. Some people may be terrified they’ll catch a chronic disease if they don’t wash their hands 72 times a day. At the same time, they’ll look down at their raw, scrubbed fingers knowing quite well that rationally their hands are clean. But that’s OCD for you. Because you can’t stop. Because another part of you (I call it my OCD brain) doesn’t honestly believe it.
2. That’s partly why I’m continually checking shit to the point of absurdity.
I have to check things. I have to check things over and over —even if I already checked it, I have to check again. I have to make sure I was right. Because if not, I’ll spiral. It’s like that feeling you get when you think you forgot something. Or, when you think you left your hair straightener on. But it’s not that simple. It’s annoying, but I feel like I have to do it anyway. Some people living with OCD also have to do certain things in specific ways —because if you don’t, you feel like something terrible will happen.
That’s why people compulsively clean, wash, check, repeat, or count certain things.
Here is an example
When I’m out and about, I have to check and count the items in my purse to make sure I didn’t leave anything behind, which is totally fine. In moderation, that’s called being responsible. But what if you just checked it a second ago. And a second before that. Everything was there the first time. But you have to check again. Oh. But then you take another step. So you have to count again too. Because it’s always something. It still feels like something is missing.
So I count, and I count, and I check, and I check until I want to scream. Because I don’t actually want to be checking and counting. But I have too —at least that’s what my OCD brain tells me to do. I will say, in the grand scheme of things that shit is merely a small minute instance. Because I have other things that I have to do. Things I don’t really want too, but it feels like I have too. Because there are times, I find myself unable to leave the house or do anything for that matter.
3. That’s because of my need for symmetry, order, and perfection.
Because I can’t leave the house until certain things are arranged in a certain way. Like the towels hanging in my bathroom. They have to be perfectly aligned. Same with the floor mats and countertops. Because if they aren’t all facing the same way, I will thoroughly clean everything until I can breathe. Because that’s what it feels like. But before leaving the bathroom, I’ll also check the shower and cabinet drawers. Looks good, I say. Check. Check. Check. I count, and I check, and I clean until I feel that it’s safe enough to move on.
But it’s not just the bathroom. I do this to every area of the house I have my things in. My boyfriend and I now try to make light of it. We call it “my rounds” as if I’m a doctor checking on her patients. Oh. But if there is any interruption, I have to start all over again. And when that happens, I sometimes get so overwhelmed that I fall to the floor. I sit in the fetal position or Indian style and try to meditate. I feel this way when someone touches and/ or moves my shit.
On the other hand, I use my need for symmetry, order, and perfection as a way to cope when I am triggered by a person, place, or thing. It’s like I can’t think about that bad something if I’m focusing all my energy on cleaning. Organizing. It’s helpful at times, but when it takes over, I’m even more triggered and annoyed. That’s when I have to stop. I have to tell myself that everything is OK. This too, shall pass. Nothing is actually wrong, Macey. It’s all in your head. Everything is clean, and you don’t have to worry about a thing.
©Tatiana / Adobe Stock
4. lastly, my lists have lists and then some.
“Phone, wallet, keys, insulin, meter. Phone, wallet, keys, insulin, meter.” That’s a little something I say to myself on repeat whenever I leave the house. Because like I said earlier, I have to list all of the items I’m carrying every time I move about. But then, I remember, “This is OCD telling me I have too. I shouldn’t be ritualizing.” So I stop (at least I try too). I stop, and I sit with a small surge of anxiety as I try to continue with whatever it is I was doing. This is known as list-making. And it’s a flavor of OCD I’ve had for years. The obsession is that I won’t remember “important” information and the compulsion is to list it repeatedly.
Truthfully, the information is usually unimportant and absolutely absurd. Months ago, when I was knee-deep in the trenches of OCD, I’d make physical lists on post-it notes or in my phone because listing it in my head wasn’t enough. I didn’t trust my memory. I’ve heard people call it “information hoarding.” Let’s say I have an upcoming trip to a place I’ve never been. I want to absorb as much of that culture as possible. So I make an itinerary. A list of locations and such that my traveling partner and I must go.
Must being the pivotal word here
My OCD brain tells me we have to follow that list intently or else. And don’t get me started on food shopping. Because I have multiple lists for that too. These days though, most of the time, I don’t mind having OCD. I’m definitely not embarrassed by it either—at least not anymore. Because today, I tell pretty much everyone I meet about it. I think it makes understanding my quirks a lot easier. Plus, it’s not all bad. I say it like that for a reason. Because I owe a lot of my success in business to OCD.
I mean, I can juggle enormous amounts of work with ease —thanks to my manic organizational skills. That’s where those lists come in handy. I also work exceptionally well under pressure —seeing that I’m used to living in a constant state of fear. Along the way, I learned how to shift my anxiety into energy. And I like to think I make decisions that are both informed and fast, which means I rarely miss out on an excellent opportunity. Most of the time, (somehow), I do, in fact, make the right decision.
The times I don’t, I’m able to analyze every misstep and file that knowledge away to help me improve my decision-making process in the future.
So yeah, my OCD brain is kind of like a computer. And what do you know? I love computers. I will say it’s not all good. I guess that’s where medication management and talk therapy come into play. Because OCD is highly treatable. I mean, yeah it’s a debilitating illness. But you can recover. You can live and love and enjoy yourself just like anybody else. So be messy and complicated and afraid. And then show up anyway. Because you don’t have to control everything. You don’t have to control anything. You just have to stop letting everything and anything control you.
So remember, to recover, you must first believe you can.
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