7 Things to Know if You’ve Just Been Diagnosed With OCD
I normally hate using OCD as an adjective, but I think it’s ok this way: Wanna be OCD friends?
I ask because I have OCD, too, and hanging with someone else who just gets it can make all the difference, just in the way it can for physical health conditions.
I ask because you’re probably a little nervous—perhaps even feeling like you’re stuck on an island of your own making. You’re not. It’s not your fault.
I also ask because, even though 10 of your existing pals probably just told you they’re “so OCD, too,” they probably aren’t (only 1.2% of U.S. adults actually have obsessive-compulsive disorder).
Related: The Essential Guide to Obsessive-Compulsive Disorder
Though they likely mean well, these people are typically mistaking organized throw pillows, a color-coordinated kitchen, and tidy home offices with MoMa desk accessories for OCD. When a former boss once told she was “so OCD, too,” what she meant was: I can’t stand a mess on my desk.
Ironically, I often have the messiest desk. Years ago, when I left my job at Allure to go to Women’s Health, it was only after cleaning out my office that I discovered 20 bottles of champagne under the mountains of products and press releases (“thank yous” from brands we had covered in the mag). And yet, I have OCD. How could this be?
Because OCD is not about being neat or tidy because you love being neat and tidy. If being neat and tidy is your jam, it ain’t OCD. The way neat and tidy would play out in someone diagnosed with OCD might go something like this: You compulsively clean your desk and office because you’ve got an obsessive fear of getting seriously ill; or of getting your BF sick through cross-contamination from bacteria on your desk rubbing off on your clothes and transporting to your couch; or of worry that a cluttered desk could somehow cause harm to people you love (“magical thinking”: if I don’t do X, then unrelated Y might happen).
So yeah. Wanna be OCD friends? At the very least, let me answer a few Qs and assuage some of the fears you might be having after being diagnosed with OCD. I’ve been there, done that—and I’ve collected a bunch of coping strategies you’re gonna want. Let’s start with seven things you need to know.
#1. What you’re feeling is normal
Perhaps you’re comforted by a diagnosis of OCD because you finally know WTF is going on. That’s normal.
You might be freaking out. Also normal.
Maybe it’s both/and: You feel both a sense of relief at knowing there’s a name for what you’re experiencing…and worry or fear about what’s to come. Normal? Indeed!
So before we go further, give yourself a break for having emotions. The last thing you need right now is to pile shame on top of stress.
#2. It’s ok if your OCD is more taboo than checking
We’ve clarified the neat/tidy stuff. Next up: checking and hand-washing. Yes, OCD can focus on both of these. I used to be a checker of sorts—staring at the direction of the screw on a wall plate above a light switch, memorizing which way it was twisted in with a head-nod as acknowledgement, before I could turn off the light—and I have contamination OCD that focuses on blood (and any type of red smear).
But OCD has less-talked-about manifestations—intrusive thoughts, excessive rumination, and fear of harming others, for three—and the not-talking can make you feel worse.
Related: How to Manage Your Intrusive Thoughts
“OCD is the most complicated thing,” says therapist Alegra Kastens, LMFT, founder of The Center for OCD, Anxiety, and Eating Disorders in NYC. “If we look at a massive pizza of OCD, contamination makes up a small slice, and people don’t understand the rest of the pie.”
In fact, one study published in the journal PLoS One found that people often didn’t recognize their behaviors as symptoms of OCD because they didn’t fit into the most “common” subtypes.
Why is it that OCD often gets portrayed as checking or washing? (Think: Monk.) Kastens, who herself has OCD, believes it’s because with contamination obsessions, the compulsions—avoiding touching things, excessive sanitizing—are physical. Mental compulsions can’t be seen.
With POCD (unwanted fears of becoming a pedophile) or harm OCD (unwanted thoughts of violence toward yourself or others), for example, the compulsions people deal with are “invisible,” Kastens explains. “And then, you add on the layer of shame and stigma that people with very taboo obsessions have.”
#3. You are not your thoughts
OCD thoughts are ego-dystonic, which means they are antithetical, distressing, and repugnant to your values and who you are as a person. This is one of the most important things to remember, particularly if your version of OCD involves thoughts about harm.
As therapists have told me repeatedly, thoughts are just thoughts. Their content is meaningless. OCD can try and trick you into believing otherwise, but it’s your actions that make you the person you are.
#4. Some of your personality “flaws” might be OCD symptoms
Is it me or the OCD? It’s hard to know where your OCD starts and your personality ends. After two decades with OCD, I’ve only recently realized that some of my most annoying behaviors might be linked to the conditions.
My latest research has uncovered two studies explaining a few of the things for which I regularly berate myself. One found an association between OCD and negative thinking, and a new one links OCD with emotional dysregulation.
GOTTA READ: Emotionally Reactive? 4 Types of Therapy to Tame Your Outbursts
I know it’s not healthy or accurate to blame OCD for everything. This isn’t a global out-of-jail-free card for your actions—you need to own the bad stuff you’ve done! But there’s power in knowing when OCD is legit associated with certain behavioral traits, because that means they can be changed.
Take my raging guilt complex. I still feel guilt—like, on the daily—for stuff that happened 12 years ago, even when I’ve made amends. Or, in other cases, even when the hand-wringing thing is a one-off comment the person likely doesn’t even remember me making.
I always thought the guilt was due to growing up Catholic. And then, I was scrolling Insta and saw a therapist talking about real-event OCD. Mind. Blown.
“With real-event OCD, a person essentially becomes very fixated on a past event, and it’s beyond feeling guilty about something. It tends to be an excessive amount of guilt and even shame,” says Kastens. “A lot of people with real-event OCD feel shame that’s very unhealthy. It’s not just the event you’re fixating on—there’s some kind of doubt or some kind of story that you’re buying into about that event.”
In this way, the guilt itself becomes an obsession, with ruminations the compulsion. “If guilt is troubling to us, then our minds will try to figure out what to do with it, and when our minds get hooked on it and stuck on it, then it has that perseverative quality,” says clinical psychologist Naomi Torres-Mackie, Ph.D., head of research at The Mental Health Coalition. “When OCD is tied to a reality-based event that’s truly happened in the past, that tie to guilt makes a lot of sense.”
The real event is the trigger. “People think, ‘It can’t be OCD because I really did that thing.’ Yes, the event is real, but what’s irrational is the thing the person is buying into. And that’s what we can work on resolving.”
On the guilt front, “I would treat it like any other rumination and feature of OCD, which would mean we would work on cognitive restructuring and addressing the underlying thoughts,” says Dr. Torres-
GOTTA READ: How to Be Alone But Not Lonely
Mackie. So when a globalizing thought arises—for me, it’s “I feel guilty about X event and can never redeem myself; I’m a bad person”—your therapist can help you come up with a more helpful thought to practice.
Since a phrase like “can never redeem myself” can quickly lead to helplessness or hopelessness, Dr. Torres-Mackie suggests an alternate thought, such as “Sometimes I do things I regret, but I’m a work in progress.”
#5. You do not have to live in a heightened state of OCD forever
There is treatment! And it’s been shown to work. Beyond cognitive restructuring, which falls under the broader cognitive behavioral therapy (CBT), there’s exposure and response prevention (ERP), the gold standard for OCD treatment.
The idea is that, by exposing yourself to what you fear, you begin to realize that it won’t lead to the feared consequence. Eventually, you fear it less, and ultimately take away its power over you. It sounds scary. But you do it in baby steps.
So, for example, I’m inexplicably terrified of a certain skin rash. Years back, when someone who had that rash brushed up against a faux fur Old Navy coat I was wearing, I thought I’d never don that adorbs coat again. But my OCD doc suggested I use it as an “exposure,” which I did (somewhat hysterically—we took pics), sitting at home with the coat on my lap. I started with a minute, worked up to five, then ten…you get the picture.
Do beware general talk therapy, however, which Kastens says “can ultimately serve as one big compulsion if the therapist is not trained in evidence-based treatment for OCD. The client comes in and brings up an obsession, and the therapist becomes a co-compulsor, and you spin and spin and spin, ruminating out loud with the therapist offering repeated reassurance. You’re not getting out of the obsessive-compulsive cycle, you’re maintaining it.”
#6. It’s ok if you need medication
Therapy doesn’t always cut it on its own. Didn’t for me. Paxil’s been really helpful, and I have friends who take Prozac and Zoloft.
There’s no shame in taking meds. Nada. If you’re self-flagellating, think of it this way: If you’d been diagnosed with diabetes, would you criticize yourself for needing insulin? For eczema, would you debate whether using an Rx skin cream would make people think less of you?
#7. Remember: You aren’t alone
A few weeks ago, I interviewed comedian Taylor Tomlinson about what it’s like having bipolar disorder. In one of her Netflix specials, she’s got a bit about being told, right after being diagnosed, that Selena Gomez also has bipolar. “And I was like, ‘That does make me feel better. She is very pretty. Okay, I’ll be bipolar,’” Tomlinson jokes.
There’s comfort in numbers—and faces. A few cool celebs who have spoken publicly about having OCD: Camila Cabello, Jessica Alba, Charlize Theron, Amanda Seyfried (did you see her in The Dropout? GENIUS).
For everyday info and inspo, tune into Kastens and the nonprofit Made of Millions on social. Both make TikTok-y videos about OCD, diving into every aspect with wit, compassion, and a modern POV. They’re just two of my OCD friends. And you’re very welcome to sit with us.
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