It’s estimated that roughly 2% of people in the U.S. live with obsessive-compulsive disorder (OCD). I’ve been one of them since I was 7 years old. Although many people categorize us all as neat freaks or germaphobes, our experiences can vary so widely that they’re practically incomparable. Yet we all fall under a giant diagnostic umbrella called OCD.
I want you to truly understand what it feels like to live with this illness on a daily basis, although it’s difficult to put into words — and even with the right words, it’s still hard to convey. But let’s give it a shot.
Note: This article is a recollection of the author’s personal experience and should not be used to diagnose or treat any condition.
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1. Intrusive thoughts
From the moment you wake up, your thoughts don’t quite feel like your own. That’s because, a lot of the time, they’re not. Everyone has random thoughts that come and go, but don't really reflect who they are. For some people, it can be difficult to let some of those thoughts go. These are called “intrusive thoughts.” Intrusive thoughts can be different for everyone, but they are rarely pleasant. For someone living with OCD, these thoughts can be anything from “if I don’t wash my hands exactly six times after using the bathroom, I’ll spread bacteria everywhere and cause illness” to “my mother will die on her drive to work today if I don’t touch the corner of my nightstand the right way 54 times to start my morning routine.” These ideas are often terrible to think about, ever, much less first thing in the morning. Those of us with OCD might understand that these thoughts and rituals are irrational, but that doesn’t keep them from entering our heads and making us feel compelled to act on them, even when that gets in the way of our daily functioning. That’s one reason why OCD is categorized as an illness.
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2. Wishful thinking
These are hopeful thoughts we use to counteract intrusive thoughts. Or at least that’s what we imagine them to do. They usually play out in the form of a prayer, a wish or a chant — anything you can do to counteract the terrible thought.
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3. Crippling anxiety
All of this might be more manageable if it weren’t accompanied by debilitating anxiety. I’m talking about the kind of anxiety so bad it hurts, when all you can do is sit quietly or fall to your knees and hope it goes away soon. The kind that makes you not able to think about anything other than your intrusive thoughts, even when someone is talking to you about an important matter.
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4. Unavoidable triggers
Anything can trigger intrusive thoughts, even good situations. For example: You just got a raise at work and you know deep down you deserve it. But now that this very good thing has happened, it comes with the feeling that something terrible will follow — something so terrible you might think you can’t imagine it, but then your mind finds a way to do that for you, too. Often it has to do with a death of a loved one, the loss of someone or something close to you, or an accident so terrible you can’t stop repeating the bloody images in your head. Again, you definitely don’t like these thoughts, nor do you know where they come from, but you’re willing to do just about anything to make them go away.
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5. Behaviors
OCD affects many people in many different ways. Counting, checking, cleaning, organizing, hoarding and avoiding are just a few.
Obsessive counting, also known as arithmomania, can invade your life at any moment. It can be as minor as always turning up the audio volume to an even number or as peculiar as only buying groceries in quantities of five. Some people count objects while they walk, some count their steps. If it sounds tiresome, that’s because it is. I feel exhausted just thinking about all the things my mind has made me count over and over again until it felt just right. Case in point: You may have noticed this article is a numbered list.
Checking seems innocent enough. Everyone checks to see if they’ve turned the stove off, closed the windows and locked the door before leaving for work. But what if you check 5 times, 18 times or even 32 times? What if you can’t leave for an hour or even two because you feel the need to keep checking the same thing over and over again? Personally, I’ve driven all the way back home a few times to make sure our cat hadn’t run out of the apartment. I’m talking about a 30- to 45-minute drive to make sure I’d done something that I knew I had. But the thought of him roaming around lost in the hallway consumed me so completely that I could not function.
Cleaning is probably the obsession most often associated with OCD, even though a lot of people with OCD can still be really messy. Someone with no idea what it feels like to have this illness might notice your cleaning behaviors and say “you’re so OCD,” which can feel dismissive and insulting on many levels to someone living with it every day. Cleanliness is usually an obsession related to feeling dirty or a fear of bacteria, but it can even be caused by feelings of guilt. While it’s normal to want a clean home, it is not normal to scrub the floors so hard you have trouble getting up afterward or to wash your hands until they blister and bleed. Someone who shows this behavior can believe the only way to prevent their intrusive thoughts from becoming reality is to clean until those thoughts have been conquered.
Organization can be much like cleanliness, but has more to do with symmetry. Some people with OCD have trouble coping with things that are not in perfect order. Exactly how those things should be ordered can be defined very differently from person to person, of course, because something that seems organized to one person may not to another. This particularity is not always related to being “clean,” so it’s not quite in the same category as cleaning behaviors.
Hoarding also falls under the big, colorful umbrella of OCD. Hoarding can be triggered by multiple events or circumstances; some people experience tragedy and can’t help but use hoarding as a coping mechanism. This can seem related to post-traumatic stress disorder (PTSD), but when you’ve dealt with OCD your whole life, the intrusive thoughts go with it. I’ve never had an easy time throwing things away, but there was a point where it got extreme — after my home burned down. Everyone offered our family their old stuff and we took EVERYTHING. Seems like a natural response, right? For the most part, it was. But then I started collecting bottles, boxes, plastic packaging, corks, paper and more. It got to the point where we needed to shimmy against the wall to go down the hallway to the kitchen. Eventually I worked through it, but not without a lot of effort that sometimes made my skin crawl.
Avoidance from participating in life can be a way for people with OCD to cope with their intrusive thoughts. For instance, if you’re constantly imagining being in a life-threatening car accident, you might avoid going to your best friend’s birthday party when that would require you to drive.
Safety behaviors, also known as compulsions, are actions that help those with OCD to cope with intrusive or obsessive thoughts. Exactly how a safety behavior manifests is usually specific to the person’s intrusive thoughts and surroundings. Sometimes a safety behavior changes to adjust to new surroundings, even if the intrusive thought remains the same. For instance, the number of times someone touches an object might stay the same, but the object might be different from room to room.
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6. Categories/subtypes
There are also different OCD categories or subtypes. Three examples are sensorimotor OCD, harm OCD and contamination OCD. These are not mutually exclusive, meaning someone can experience more than one type of OCD at a time. This is sometimes called “overlapping OCD.”
Sensorimotor OCD involves an over-awareness of your bodily functions. It can affect different people differently, but fixating on any bodily function can be physically and mentally detrimental. Someone with sensorimotor OCD might, for example, think about and focus on their heartbeat so much that they actually start to believe it’s beating too fast or irregularly. They might even become convinced that if they don’t keep telling their body to keep breathing, it will stop. It’s a horrifying mind-made prison to live in.
Harm OCD involves intrusive thoughts that are violent or harmful, which the sufferer believes will become reality. People living with harm OCD find ways to counteract these frightening thoughts in the hopes they can keep them from coming true. This is often done through safety behaviors and small physical acts, like touching an object a certain number of times or checking over and over again that the front door is locked, until they feel these thoughts can’t hurt them anymore.
Contamination OCD, or contamination obsession, is when a person fears that someone is trying to poison them. This can be extremely difficult to live with on a daily basis — trust goes out the window a lot of the time. In some situations those with contamination obsession won’t leave their food unattended and, if they do, they’ll throw it out rather than trying to overcome their irrational fear.
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7. Treatment
Finding what’s right for you can be difficult, but when one treatment does work, it’s so rewarding. Here are three styles of treatment that have worked for others living with OCD: exposure and response prevention (ERP) therapy, medication, and psychiatry/psychology.
ERP therapy forces a person to face the fears that trigger their compulsive responses due to intrusive thoughts. This kind of therapy can be difficult at first and very unpleasant for the person living with OCD, but has been proven effective when properly performed.
Medications made specifically to treat OCD exist, believe it or not. It’s important to talk to your doctor to find out which of these, if any, would be right for you and your body. This route is not for everyone. I know lots of people who would prefer not to take medication every day. On the other hand, I also know a fair number of people who do take medication and have completely changed their lives. Just remember, whatever you and your doctor find to be the safest and most effective treatment for you, be sure to use it continuously. It won’t work if you give up!
Psychiatry/psychology is the classic option for treating most mental illnesses, including OCD. It’s a great option, particularly for those who want to talk about and work through their issues. Talking with your doctor or therapist allows you to find the underlying problems stemming from your illness. Sometimes just knowing where your OCD came from can change your entire perspective and you can begin to heal.
Above all, and I cannot stress this enough: Please, please, please don’t be afraid to seek help wherever you can find it. Whether that’s talking to a professional, a friend, or a family member, remember that we are here for you. There is no such thing as “recovering” from OCD, but there are ways to subdue the intrusive thoughts and control the compulsions. Take it from someone who has lived it — there is hope, and it does get better, but only if you get the help you need.
