Dear Person Who’s Just Been Diagnosed With OCD…

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.

“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.

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 shitty crap 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.” 

Let’s play it out. The real event is the trigger. “Let’s say I called someone a bitch in 8th grade,” Kastens offers, by way of example. “The obsession is, ‘What if they die by suicide because I said that?’ This obsessional story and doubt. 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-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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