SPECIALISTERNE NETWORK

International Specialisterne Community

Specialisterne Foundation

Specialisterne Foundation is a non-for-profit organization that works to enable one million jobs for people with autism and similar challenges. The foundation owns Specialisterne Denmark and the Specialisterne concept and trademark.

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People like to talk a lot about OCD, but not necessarily for what it is. They like to talk about the quirky aspects of how they imagine OCD to be, without really stopping to understand it. You often hear people saying things like, “I really like to keep things clean and organized. I’m so OCD!” These kinds of statements only perpetuate misconceptions and stigma and gloss over the difficulties people with OCD face.

 

In reality, for so many of us with OCD, keeping things neat and orderly is only a very small part of the overall picture, with many of us being just as messy as anyone else. People who are simply “neat freaks” like to have things tidy. Conversely, for many of us with OCD, we keep things orderly not because we just like to be organized, but because we’re compelled to. We literally cannot relax unless things are a certain way, out of fear of something terrible happening.

 

What people don’t really want to talk about is how you need to flip the light switch on and off 38 times before leaving a room. Or how if something touches a certain part of your body in a particular way, you have to touch each side of your body seven times for four repetitions, or your family pet will surely die, because that’s no fun, right? It would be too exhausting for them to think about, but not nearly as exhausting as it is to actually live it.

 

It’s not like, oh, I’m a little bit anxious and that’s that. It’s more like, I have these horrendous thoughts that I’m convinced will come true unless I go through these rituals, leaving me to be completely burned out by the end of every day. It’s pure torture, to put it mildly.

 

I think a big part of why people only tend to talk about this surface level, quirky OCD of their imaginations, is that OCD can be kind of scary and overwhelming when it’s actually laid out on the table. It’s not only scary to think about, but when you have OCD, it can honestly be triggering to talk about. It can leave you feeling really exposed and can magnify the feeling that the obsessive thoughts may come true if said aloud. 

 

But, I want to talk about it. I want to give other people insight into what life can be like for those of us with OCD, and that there’s a real person living behind these struggles. I feel strongly that as hard as it is, people need to be vulnerable if the narrative is to ever change and the stigma is to be lessened.

 

I can’t even write an article like this one without backspacing and rewriting many of my words a ridiculous amount of times because the way I typed them the first time wasn’t “right.” When I was younger, I used to rewrite all of my homework out multiple times. Even if it was pages long and I was almost done with it, if I made a mistake and had to erase something, I would need to start over. I was convinced if I didn’t, something awful would happen, like my parents getting into an accident.

 

Many people with OCD have mental compulsions, so you can’t even tell we’re performing any sort of ritual. When we do have visible compulsions though, they can make us look odd and irrational, and they can also take a toll on those we’re closest to. For those of us with OCD, we know our compulsions aren’t rational. I know that repetitively checking that everything in my house is unplugged each night and counting as I do it isn’t going to keep my house from burning down in my sleep, and yet, I have to do it. My brain doesn’t give me an opt out button. 

 

Everything takes much longer than it should, and I have to consciously plan my days around how much time I think my compulsions might take up. If I don’t perform a compulsion, I will dwell on it in the back of my mind all day, even if I’m able to move past it in the moment. Each of these things are really only the tip of the iceberg when it comes to my OCD, and the pandemic has only amplified everything.

 

This has been the single most difficult period of my life, in terms of my OCD. Imagine spending your life thinking if you didn’t do x, y, and z, all of these terrible things might happen (like people tragically dying) and then millions of people are literally dying globally and it’s plastered all over the news and social media daily.* Not to mention the germ factor. I’m notoriously a ‘germaphobe’. My OCD is heavily intertwined with cleanliness. In fact, my OCD was seemingly initially kick-started around the time my kindergarten teacher talked to our class about handwashing, and something in my brain just went into overdrive. 

 

For years, I would compulsively wash my hands for what amounted to hours a day, until they were red and bleeding. Feeling like contaminants are everywhere as being a real threat during this pandemic is not helping matters. For instance, I know that compulsively wiping down my groceries each week isn’t logically going to prevent a catastrophe, and yet, every week you will find me spending hours of my life wiping them down and then showering until I feel “right.”

 

I’ve experienced these things, and more, every single day of my life since I was 5 years old. For twenty-five years, I’ve been debilitated by this looming, overwhelming sense of anxiety. It’s there when I wake up, it’s there when I go to sleep, and often, it’s there in the middle of the night too. It’s just always there, and it always will be. 

 

So please, think twice before you flippantly say things like having a picture hanging crookedly on your wall will trigger your OCD, or you talk about how you’re “so OCD” for wanting things to be clean or organized a certain way. OCD isn’t pretty, and it’s not a choice. It’s tremendously difficult to live with and it isn’t something to be joked about.

 

 

 

*I recognize that millions of people die annually from a variety of illnesses and horrible events, and am not trying to say this is something new or a worse phenomenon than those tragedies.