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OCD isn’t just about cleanliness.
posted on Sept. 29, 2015, at 11:01 a.m.To much of the public, OCD isn’t a serious illness. It’s the butt of jokes (shows likeMonk have made a killing off of it), and when people don’t understand it, they often accuse sufferers of melodrama when it is, in face, torturous anxiety. That’s been my experience, at least. Any time I explain my symptoms to non-sufferers, they’re shocked to hear that my compulsions primarily take place in my head, and to learn that I’m one of the messiest people they’ll ever meet.
—Ciara Ross, Facebook
A common misconception is that OCD is just about cleaning things. I have absolutely ZERO interest in cleaning. I have some tics regarding organization, but I don’t go around and scrub the house clean. For me, OCD manifests itself through obsessive, pervasive thoughts about death. Thoughts that keep me up at night, that make my head spin, that cause me to break down into panic attacks because they won’t stop.
—Christopher Houston, Facebook
Not everyone with OCD has an organized life. In fact, some people with OCD suffer from all-or-nothing thinking that disrupts organization, like, My room is either going to be perfectly arranged or total chaos because I know I won’t be able to meet my own standards, or, My essay will be perfectly written or it won’t so I’m just going to delete it and get an F before it bothers me to no end.
One misconception I often hear is that I could “control” my condition if I really wanted. People think that OCD is just a series of habits that you can easily give up. But they don’t understand how these rituals can interfere with every aspect of your life, and how difficult they are to stop.
—J Manny Santiago-Hernández, Facebook
A common misconception people believe is that OCD always has visible traits. People are surprised that I don’t have tics or turn the lights in every room on and off. My OCD is a lot more obsession-heavy, with some pretty quiet compulsions. My thoughts are repetitive, and it’s hard for me to let go of certain ideas, but I don’t really react in visible ways.
—Lena Wilson, Facebook
I’ve had OCD since I was 9. At first, it did in fact begin with an obsessive fear of being contaminated. My rituals to relieve this fear evolved from constant hand washing to constant strained hand signals in which I imagined I was placing cleaning “jewels” all over my body. I think it progressed this way because you can’t exactly get up and leave class every two minutes to go wash your hands in third grade. Later on in life, I began having intrusive thoughts about demons, going to hell, getting possessed, and losing my soul to the devil.
It’s not about being clean. It’s about a series of thoughts and fears so disturbing, so polarizing to your character, that you have to constantly stop and perform some ritual to ease that fear.
—Robert Hoops, Facebook
I think one of the worst misconceptions is that OCD is just a “quirk” rather than an actual illness that usually requires long-term treatments.
One misconception is to think that because I have OCD, my tic/ritual will automatically apply to my interactions with other people. I’m a trichotillomaniac (hair puller) and people often think I want to pull their hair out like I do mine. That’s not how that works at all.
—Helen Boyer, Facebook
Just because you like your towels aligned a certain way, it doesn’t mean you have OCD. In recent years, I’ve heard the term become increasingly trivialized, used as a fashionable, pop-psychology term that people toss around carelessly. OCD is not something cute or funny. It does not look like Monica Geller from Friends. This awful, pervasive, invasive sickness should never be joked about.
—Soffy Gee Roo, Facebook
The aspect of OCD that I try to explain to people is the lesser-known “compulsive” side. This often comes with reoccurring and disturbing thoughts or urges. Even if you know you would never ever follow through with some of these urges, the fact that the ideas come to you at all is agonizing. The thoughts don’t go away and you can feel isolated and ashamed.
A lot of the time, the obsessive behaviors develop because they are a coping mechanism to get your mind off these thoughts.
The biggest misconception that people have about my OCD is the fact that I evenhave OCD. My compulsion is that I pull out my eyelashes. I also have compulsory behaviors that are hard to explain, like doing things a certain way because if I don’t then something bad might happen. But because I’m not constantly washing my hands or locking and unlocking doors a certain amount of times, most people tell me that I’m just quirky and that I don’t have OCD and should just stop pulling out my eyelashes. Just because someone looks fine on the outside doesn’t mean that everything is OK on the inside.
When you use OCD as an adjective and I stand up for myself, you say I am too sensitive. When you try to set me off because my response is funny, you make me feel pain. When you embrace stigma, you ignore the face and see the label, and when you listen to stereotypes, you add the task of explanation to my life.
There is a huge difference between liking things to be a certain way and having OCD. Someone who doesn’t have OCD may not like their room to be messy or their hands to be dirty, but they will get over it. For someone who actually has OCD, it may literally feel like the end of the world, and they cannot go about their day unless they “fix” whatever it is that is causing them such severe distress.
People sometimes think that those suffering from OCD don’t realize that their worries are often unreasonable. We know they are, but that doesn’t mean we know how to get these thoughts out of our head.
I think the biggest point people miss is how isolating OCD is. No one wants to hear about how you’re worried you’ll hurt someone or that your food is poisoned, no matter how many times you assure them you know it isn’t true and that you don’t want these things to happen. I’ve never told a friend I have OCD, because I’m afraid they’d go out of their way to avoid me. The stigma is too overwhelming. Often I can’t leave my room because I’m afraid I’ll perform a ritual in public and make people uncomfortable, which only makes the obsession/compulsion cycle worse.
One thing people never talk about regarding OCD is that, depending on how it manifests, living with it can be incredibly disorienting. Growing up I had no idea that the reason thoughts of violence kept popping into my head was because of OCD. I was terrified there was something wrong with me, and that I was destined to be some huge danger to the world.
It took about 15 years for me to learn that this was a symptom, and a fairly common one. I can’t explain the relief I felt. It still happens now and then, and it can still feel alarming for a moment, but recognizing it for what it is has made a world of difference.
—Arianna Rebolini, email
One misconception that just isn’t true is that people with OCD cannot live a full life and have meaningful relationships. With treatment, OCD can be brought under control. And as for relationships, you just have to find someone who can love you at your worst moments and is willing to stand by you.
Note: Submissions have been edited for length and/or clarity.
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