I didn’t know I had OCD. Here’s why the stereotypes are so harmful.

Eight years ago, I was misdiagnosed with bipolar disorder.

I didn’t completely fill those shoes, but after spending so many years struggling, I was just relieved to have a label — any label — to help me make sense of things. And when none of the medications seemed to work, they told me I was borderline. While I had a nagging feeling that wasn’t exactly right, either, I didn’t know what else it could be.

I was passed around the mental health system, with clinicians throwing their hands up, unsure of why I wasn’t responsive to any of the therapy or medication they offered me.

At one time, I was on seven different psychiatric medications, and yet I was still reporting that I felt deeply hopeless and anxious.

When I was hospitalized a second time, included among my discharge papers was a handout about personality disorders, emphasizing that if I wanted to get better and would just work hard at it, I could “recover.” The suggestion that I was being difficult and simply not trying hard enough made me nauseous.

Through it all, not once did I consider that I might have obsessive-compulsive disorder.

Why would I? My clinicians were so focused on how moody and unhappy I was, they were totally unable to see the forest through the trees. But that’s a harsh reality for people with OCD — one study showed that half of people with obsessive-compulsive disorder cases were misdiagnosed.

Half. Imagine going to the doctor for a serious illness and the odds of your doctor diagnosing you correctly is the equivalent of flipping a coin.

I still consider myself lucky comparatively. Someone who would later become one of my closest friends stubbornly believed that my clinicians were wrong. This friend had OCD, too, and immediately noticed the similarities between us.

At their urging, I started doing research, and I realized two things: (1) Everything I thought I knew about OCD was wrong, and (2) I definitely, definitely had obsessive-compulsive disorder.

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Photo by Catt Liu on Unsplash

This turned out to be a critical realization. Because I’d been misdiagnosed for so long, my clinicians had yet to try prescribing antidepressants for fear it would “make me manic.” The one classification of drug I needed most was denied to me for six years.

The type of therapy that was most effective, too, was the complete opposite of what I’d been receiving.

While reassuring someone with anxiety and challenging their assumptions can be helpful, reassuring someone with OCD about their obsessions can actually make them worse. Reassurance-seeking can be a compulsion for many people struggling with the disorder, and enabling those compulsions will fuel the obsession behind them.

In other words? This diagnosis was the difference between me getting better, and me getting much, much worse.

Unlike my previous misdiagnoses of bipolar and borderline, receiving my OCD diagnosis was a huge relief.

It fit in ways nothing else had before. At the same time, it was disturbing to think about how many years it took and how much emotional pain I had endured along the way.

But I don’t think it was just my clinicians’ faults, either. It’s not a disorder that’s well-understood by the vast majority of people.

I’m still amazed that I didn’t catch on sooner; it wasn’t a disorder that was completely unfamiliar to me. In fact, my paternal grandfather had struggled with OCD for most of his life. It got me thinking about how I could’ve missed something that now seems so obvious.

I’d already heard the stories — his need to have his home impeccably, impossibly, even irrationally clean; his repeated, time-consuming hand-washing; his counting every step as he paced back and forth and his insistence on walking a particular number of steps. I’d once heard that because of his extreme phobia of germs, he’d tear up and flush his junk mail down the toilet so that he didn’t have to touch the trashcan (how he preferred the toilet to the trashcan, I’ll never understand).

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Photo by Vadim Sherbakov on Unsplash

I couldn’t have OCD, I thought. I wasn’t washing my hands over and over again. My room was a mess. I didn’t count my steps. Case closed.

But what most people don’t understand is that obsessive-compulsive disorder isn’t defined by a set list of obsessions or compulsions, but rather, the mechanism that keeps people stuck in that cycle.

The simplified version is something like this: A person with OCD has a doubt that provokes anxiety (“What if I get sick from touching the trash can?” “Does having this thought mean that I’m secretly evil?” “What if I lose my mind and push this person onto the train tracks?”), and to alleviate that anxiety, they engage in a specific behavior to help alleviate the anxiety.

And it might help with the anxiety at first, which our brains really, really like. If something helps us, our brains are inclined to repeat it. But over time, for people with OCD, it takes more and more compulsive behavior to achieve the same effect, which fuels a harmful cycle.

Because we can never know anything with complete certainty, we keep returning to the compulsions to try to alleviate the anxiety.

I can’t know that I won’t get sick, for example, if I touch a trash can, but I can wash my hands to make myself feel better. I don’t know that my partner loves me right in this moment, but I can ask them.

For someone with OCD, this might result in washing their hands more and more, and asking their partner the same annoying questions time and time again to get reassurance.

Certainty is just a feeling. It requires a basic level of trust that most of us have and develop based on experience (I don’t know there isn’t a unicorn in the other room, but I’m pretty sure, based on the number of times I haven’t seen one).

But people with OCD lack that trust around certain issues (because brains are that way, sometimes), which causes us to obsess. We try to conjure up that feeling of safety and certainty with compulsions.

When someone spends a lot of time spiraling in and out of obsessions like this, that’s OCD — and often times, that person might not even realize it.

The tricky thing is that compulsions might not even be perceivable by other people. Some compulsions are entirely mental. Examples of mental compulsions can include repeatedly reassuring oneself, repeating special words or numbers, counting and re-counting, making mental lists, or reviewing thoughts or conversations.

I’ve heard OCD referred to as the “doubting disease,” and that’s really the best way I can think to describe it.

It’s the runaway train of “what if,” and then the absurd amount of time spent trying to resolve that doubt (fun fact: the doubt is never resolved). OCD just isn’t satisfied with 99.9% certainty, though, and will become consumed with the tiniest fraction of doubt, even directly in the face of logic or reason.

At times, I’d become obsessed with the idea that I might harm people, that my cat might die if I left a window open or that I might poison him by accident, that I wasn’t really transgender, that I’d made up my mental illness, that I’d fallen in love with my psychiatrist, that I might lose control and blurt out slurs or offensive statements, that I was secretly violent, that I might stab myself with a knife if I held one, and on and on and on (seriously, the list doesn’t end).

My brain would latch onto any terrible fear or anxiety I had, and then spend an inordinate amount of time obsessing about it, trying to convince or prove to myself that my doubt was or wasn’t unfounded (sometimes I imagine that my brain is like a courtroom, trying to sort out if a crime has been committed or not).

Thoughts are just thoughts, of course, but people with OCD tend to assign a lot more significance to some thoughts than most people do. It’s the way our brains are wired.

The reality is, then, that it’s not the content of the obsessions that matters. It’s the pattern of obsessing and then seeking to resolve the doubt — mentally or behaviorally — that defines OCD, and the extent to which it interferes with our lives.

Limited representation around just how many ways you can have OCD leads to a lot of confusion around what it actually looks like.

The truth is, OCD isn’t as obvious as people think it is.

There are as many obsessions and compulsions as there are people with OCD; no two people with the disorder will have it in exactly the same way. As a society, though, we’re still stuck on this idea that it’s a disorder that’s easily recognized by being quirky, frequently washing your hands, and organizing your bookshelf by color.

I had no idea I had this disorder. So when my clinicians told me I had a mood disorder, I figured it made enough sense. Not perfect sense… but enough.

While my brain ran on this hamster wheel of “what if,” my clinicians saw someone who was moody and agitated. And rather than asking about the content of my thoughts and how I was coping (or in this case, not at all coping), they focused on how those thoughts made me feel.

Of course, that exhausting mental hamster wheel made me feel like shit. Mood disorder it is! Oh, the mood stabilizers aren’t helping? Right. Personality disorder.

But underneath those moods, my brain was tormenting me. And until we addressed the obsessions, I was never going to get better.

It’s not exactly surprising, then, that clinicians are only accurately diagnosing half of us.

Because I’d heard of OCD in everyday conversation so many times, I’d just assumed it was a disorder that must be easy to understand and recognize. That couldn’t be further from the truth, though. It’s a complex, highly individual disorder, and it requires specialized care that many of us just aren’t receiving.

I was hospitalized twice, put on countless medications that would never help, misdiagnosed multiple times, and shamed by medical professionals who believed that my struggles were, in part, a lack of willpower.

And horrifyingly, I was given treatments that made me worse, and were never designed for someone with my particular struggles.

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My cat, Pancake, really enjoys this book (and so do I!).

I’m extremely fortunate to now have a (totally amazing) therapist that is very familiar with my set of challenges, a psychiatrist who has prescribed medications that have made my life infinitely better, and most importantly, a framework to understand why my brain does the things that it does.

I can’t explain the level of relief that I feel now, no longer viewing my brain as an enemy but, instead, a complicated organ that’s just doing its best to handle the doubt that we all experience to an extent.

We all have obsessions and compulsions from time to time, and OCD is really a disorder of degree, not difference — and knowing this has helped me become a lot more compassionate towards myself.

In that way, I realize that OCD isn’t necessarily an “illness,” as it is a particular difference that we see in brains like mine. And we’re lucky enough to have some great tools to work with to alleviate some of the distressing stuff that comes along with it — for me, antidepressants, exposure therapy, and trauma work have helped immensely.

I had always assumed that I knew what OCD was. But I really had no idea.

It’s not just the hand-washing, stove-checking, lining-up-your-shoes disorder. It’s not quirky or fun — it’s difficult and it can be scary. The more we push this stereotypical narrative, the less likely it is that the majority of people living with OCD will get the care and support that they deserve.

It took me eight years to get the answers I needed. And too many of us are out there, still waiting.

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8 thoughts on “I didn’t know I had OCD. Here’s why the stereotypes are so harmful.

  1. TheDreamingPanda says:

    Thank you for this amazing post! I was misdiagnosed with depression and ADHD for six years before finding out I had OCD––and seventeen-year-old me was the one who thought to Google “OCD” and figured it out. I had pure-O/mental compulsions, too. No professional ever asked if I had repetitive unwanted thoughts. I could’ve been spared years of suffering! Thanks for helping spread awareness, and I’m glad you’re doing better.

    Liked by 1 person

  2. bobcabkings says:

    Now, I’m wondering how many people I saw in clinical work who were diagnosed, particularly, with Bipolar, or Borderline, or maybe even Paranoid Schizophrenia (another “what if?” problem), or some other anxiety disorder (especially if we throw in some PTSD along with it) may have actually, or primarily had OCD. It is true that the dominant image of OCD in society is someone like the TV character Adrian Monk (however well played by Tony Shalhoub). Thanks, as always for your insights.

    Liked by 1 person

  3. dSavannah says:

    Brains are dumb.

    I’m glad you’ve finally got the right dx and right help.

    And I am very familiar with drs not being able to diagnose you. Only in my case, it’s physical. (Just search #MillionsMissing.)

    We need to do better. We must.

    Liked by 1 person

  4. jrose88 says:

    Do you have any advice for what to do instead of offering reassurance? My partner has OCD and does a lot of reassurance-seeking, and I’ve read that it can be not the best but he insists that I provide it when I’ve mentioned my concern. I wish he would talk to his therapist about it, but there he likes to focus on his FtM transition and not so much on the OCD. It’s all very complicated, I’m not sure what to do.

    Like

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