Hey there! It’s Disability Pride Month and we’ve got a few upcoming features highlighting four different people’s experiences with their disabilities/chronic illnesses. Up first, we’re talking mental health—specifically obsessive compulsive disorder (OCD).

Olivia Zayas Rayan (she/they), 27, has been living with OCD her whole life. But her experience with the mental health condition changed a lot in the past few years, especially when she started exposure and response prevention (ERP) therapy. Here’s her story in her own words, as told to editorial director Reina.

I’ve been having OCD symptoms my entire life. I don’t really know if I could pinpoint an age or a year, but I was diagnosed with it formally when I was around 12. My experience of OCD as a youth, unfortunately, as with many people with OCD, goes hand in hand with my experience of having an eating disorder. And so I think that’s really the biggest thing that I can always point back to. And apart from that, when I was a kid, I remember always feeling really guilty and ashamed and scared all the time. That is something that I do remember very early on.

Trying to describe OCD to someone who doesn’t have it can be challenging, but here’s an example. We see a lot of TikToks about people having intrusive thoughts, but I realized recently that those thoughts—in people without OCD—are easily pushed aside. For me, it’s different. I was in a high rise building, with the window open because we were smoking weed and I suddenly had the thought, “What if I throw a lighter out the window?” Instead of dismissing it, I began thinking that I must have this thought because I’d done that before or that I really wanted to do it. I basically went into physical distress sitting on the couch next to the window because I thought that I was going to throw it down and that might hurt someone, and I couldn’t be trusted to be next to the window because I’m going to do it. I had to then go through every time I’d ever been near a window with a lighter, trying to remember if I’d ever thrown it out before. The problem is that I can never really verify if I have or haven’t. That uncertainty is huge with OCD—and that’s a more lighthearted example.

Going back to my younger years, I was also diagnosed with depression and anxiety, which is what most of my therapists focused on. As I got older, I was doing cognitive behavioral therapy (CBT) to try to feel better and stop engaging in self-harm, as well as to process some trauma. And OCD was always on the back burner for these issues, even though I now understand them as OCD symptoms. It wasn’t until pretty recently, when I began dating my current partner Gabby—who did a lot of research on OCD—that I started to really internalize how OCD applied to me and how much I was suffering because of it.

I’d had a particularly triggering experience during lockdown, and Gabby (through her research and involvement in a support group for loved ones of people with OCD) realized that my response (intense shame and fixation) to it was different to what people without OCD would do in the same situation. And that prompted her to sit me down and say, “Look, there’s this website, NOCD, that does ERP. It can make OCD manageable.” And once we had that conversation, I had the realization of just how intense that triggering situation had been and how much my OCD experience was impacting me and my partner—I had never had that experience of someone really seeing it before.

So now, I do ERP with NOCD. Once I started with my therapist there, we went through a diagnostic introduction to really get a handle of where my fears and my obsessions are. They go through the numerous subtypes of OCD and I landed on a few different subtypes that really resonated with me. Afterward, we started trying to identify my triggers, and the underlying fears, which you then rank based on the level of distress you feel when you think of them. Then, you come up with ideas for exposures that may help you face that fear. If that sounds horrible, it’s because it is. But it’s effective.

When you do ERP, you’re building your tolerance to the fear, because the ultimate goal is that you’re able to have these fears and you’re able to sit with the uncertainty. I have a very hard time with Harm OCD as one of the subtypes, which is the fear that you’ve caused harm to someone or that you could have hurt someone. One of the exposures I did was to tell my therapist (who I really like) that he was a bad therapist and just an awful guy. He  sat there and took it and then told me, “Okay, that makes me really sad.” And it was the worst, but it’s all meant to help you bit by bit. And they’re big on data at NOCD, so we track my progress, too.

If anyone feels seen by these stories or thinks they may have OCD, I’d say that you don’t have to suffer. OCD is exhausting and we see the level of pain we experience as normal, but it doesn’t have to be that way—we have to really try to build tolerance to uncertainty because it doesn’t have to cause this much suffering. That’s my big revelation.