- When I started having intrusive thoughts and compulsions, I didn't know what to do.
- I didn't think it was OCD because my anxieties didn't match anything I knew to be true about it.
When I started having debilitating intrusive thoughts in 2021, it felt anything but familiar. I'd always felt I could trust my intuition, but I started questioning everything I knew. I searched frantically for clarity, for the one right answer that would cancel out the uncertainty.
My obsessive-compulsive disorder symptoms didn't match up with anything I thought I knew about the condition. I had no compulsive need to wash my hands or check I'd turned off the stove. Now I know OCD typically attaches to what we cherish most — while for many that can mean physical health or safety, in my case it was my relationship.
My compulsions consisted of consulting friends, books, movies, and the internet to attempt to answer unanswerable questions: How do I know this relationship will last? How often is normal to see your partner? Is this obsessive train of thought anxiety or intuition?
While compulsive Googling ultimately fueled my anxious thoughts, it's also how I came across information about OCD and relationship OCD, or ROCD.
I found out that OCD can look many different ways and that I probably had it. Weeks later, I received a formal diagnosis from a therapist.
Based on my experience, here's what I want others to know about living with OCD.
OCD goes way beyond cleanliness
OCD often manifests as an obsessive urge to clean, tidy, or organize, but that doesn't tell the full story. "OCD can present in many ways that have nothing to do with organization," Ilisa Kaufman, a psychologist who founded Compulsion Control, said. "The majority of the clients in our OCD treatment program are not obsessed with neatness and organization."
For many people, it goes beyond those things. Chloe Zachary, a licensed clinical psychologist at TAP Clinic, said that "common themes are concerns about being responsible for causing harm, injury, or bad luck; having 'unacceptable thoughts' about doing something that feels embarrassing or immoral to you; preoccupation with symmetry; completeness or things feeling 'just right'; and, of course, germs and contamination."
OCD themes can switch, too. "OCD is all about not wanting to tolerate uncertainty — when it finds a new thing to insist we have to be certain about, it can latch onto this," Zachary said. For example, I've also experienced obsessions around disordered eating and, bizarrely, about feeling like I need to pee even though my bladder's empty.
Rituals aren't always visible
We often think of OCD compulsions as involving visible rituals, such as wiping door handles or relentlessly organizing objects. That's why when I started experiencing thoughts-based OCD symptoms, it took me a long time to understand what was happening.
"Some examples of invisible compulsions can be mental checking," Kaufman said. "For the subtype ROCD, the sufferer may compulsively replay how they felt about an ex and check to see if they feel that way about their current partner. Also, they may spend hours ruminating about whether or not the person they are with is right for them."
Compulsions are a misguided protection strategy
My obsessions can seem silly for people who don't have OCD — and, truthfully, they often seem silly to the rational part of myself. But there's a pretty understandable reason I obsess. In all subtypes of OCD, the person "is simply looking to protect themselves from getting hurt," Kaufman said. "However, the compulsions eventually lead to more doubt and mistrust, and the horrible obsessions become stronger and seem more real."
Alex Bishop, a registered professional counselor and ROCD specialist, described OCD as "heavily rooted in shame." As such, Bishop said, the person's thought process might sound something like, "I'm bad, and I need to obsess and make sure I'm not making a mistake." For me, an example of this would be believing I couldn't handle the grief I'd feel if my relationship ended because of one of the subjects of my obsessions — such as the fact that I like to relax and my partner prefers to be busy (the obsession being that this could mean we're completely incompatible).
Talking about my diagnosis isn't taboo
My friends and family seemed uncomfortable discussing my diagnosis with me at first. While I didn't mind talking about it, the fear of others' reactions stops many people from sharing their experience with OCD, which can be incredibly isolating and help perpetuate the idea that having OCD is somehow bad or shameful.
While I was put off by certain loved ones' reactions at first, as I grew to understand more about OCD, I felt better able to casually mention it in conversation and signal to others that it was OK to talk about it.
"Often individuals with OCD have a lot of shame about their symptoms, as these are thoughts or compulsions they don't like and don't wish to be having or doing," Zachary said. "The best thing families and friends can do is listen and validate their loved one and educate themselves on how to effectively provide support."
If you can, I'd recommend connecting with others who have struggled with OCD and can provide extra support. I joined communities on social media and spoke with friends who had dealt with similar struggles, and it continues to be an integral element of my healing.
Help is out there
I struggled deeply throughout 2021, but thanks to SSRI medication and gentle trauma therapy methods, I'm doing much better.
It's OK to work with different care providers until you find one who helps improve your symptoms. Kaufman cites her own unhelpful experience in traditional talk therapy in encouraging people "to question their therapy and therapist." Zachary said that "it's critical to work with a provider who is trained in treating OCD."
The most commonly prescribed therapy for OCD is a type of cognitive behavioral therapy called exposure and response prevention. While ERP made me more confused, it's been found to work for many people with OCD and is considered the gold standard for treating OCD.
Potentially helpful alternatives include Kaufman's "rock bottom, interruption, practice, and replacement" therapy, or RIP-R, and acceptance and commitment therapy. Anecdotally, Bishop has found success using internal family systems, a trauma-healing method. (While more research is needed on the effectiveness of such methods in treating OCD, researchers have described a link between trauma and OCD.)
There isn't a one-size-fits-all approach to healing, and you should feel empowered to stick with a method (or several) that supports your experience. Quitting ERP was the right decision for me — if you educate yourself on OCD and speak with trusted family members, friends, and qualified professionals, you'll be able to make the right decision for you.