When Your Worst O.C.D. Fear Comes True (You're Not Alone)

When Your Worst O.C.D. Fear Comes True (You're Not Alone) (Photo: Jutta Kuss/Getty Images)

San Francisco, CAI had always been a calm kid, but when I was in third grade, I started to have panic attacks, worrying the worms in science class were poisonous. I spent weeks going to a specialist to get tested and had to skip many days of school.

Thus began my journey of Obsessive Compulsive Disorder or O.C.D., therapy and medication. 

I’m now 21 and have seen many therapists in my years. I feel control over my O.C.D. But when the coronavirus hit, I started to feel less control over my thoughts and worries, as germs and diseases are my biggest fear.

The first time I was introduced to “exposure therapy” was when a therapist in fifth grade told me that in order to get over my fear of mushrooms, she would dump a bucket of them on me. I told my parents she was insane and I’d never go back.

Thankfully, I learned from licensed marriage and family therapist Sarah Carr that exposure therapy doesn’t have to work like that. It can happen at your own pace, and you can feel support every step of the way. It can also come from a place of understanding your values. Carr uses cognitive behavioral therapy and commitment and acceptance therapy to help those who feel that anxiety and O.C.D. are getting in the way of their well-being to live how they want to. I talked to her about how her approach works during this pandemic.

This interview has been edited for clarity and length. 

Rosie Reider-Smith: How exactly did you get started with doing exposure therapy? What led you towards this specialty? 

Sarah Carr: So I started doing exposure therapy for my first practicum in my master’s program. And I really just loved it. I loved the clients I was working with and the variety of presentations I was able to see. Even though we were treating O.C.D., it can look so many different ways. I found that people were very motivated and wanted to get better. And it was very active and engaged.

RRS: And when you were really starting to work with those with O.C.D. doing exposures, did you find kind of common ground for what different O.C.D. thoughts were?

SC: One of the commonalities that I often see with people, whether it’s contamination or other worries they are struggling with, is a fear or difficulty tolerating uncertainty. And I think what is very prominent right now, the level of uncertainty that we are all facing with this pandemic. So some of the people that I’m working with, they are really appreciating that they have been working so hard already on exposures and uncertainty. And so they actually feel really prepared to deal with uncertainty in ways that other people don’t.

RRS: In a normal, typical setting [outside the pandemic], can you walk through what, from a client point of view, exposure therapy looks like? 

SC: In a typical setting, we would collaboratively work together to identify things that set off the O.C.D. or things that people are avoiding that they don’t want to be avoiding. We would work really closely to create a bunch of different exercises that we could practice, and then changing their responses. And because I use a lot of acceptance based work, I think it’s really important to connect values and what’s important to people, which is a little different than traditional exposure and response prevention. And then we just go through systematically and start wherever the person is most willing, and we build off of where they’re willing. And we want things to be challenging but not overwhelming.

From my perspective, I really just see myself as a coach and someone that’s helping people to learn skills and alternative responses when they experience stress and anxiety, or they’re faced with uncertainty. Because even though I have ideas, at the end of the day, everyone I work with is really the expert of their own experience and their life.

RRS: During this time, what [does] exposure therapy look like, when you are not doing it together [in person]? Like our work together, we would go to Whole Foods and touch mushrooms and things like that. So I’m just kind of wondering how you as a practitioner have shifted to fit the needs of those in the program in a way that works during this time. What’s different?

SC: It really depends on the O.C.D. So there’s some people I’m working with and their exposures look exactly the same as they did before, and they have nothing to do with germs or contamination. For example, someone I’m working with right now has more of a “just right” O.C.D., where he needs to move his body or touch things a certain way. We are actually doing the same exact thing using video that we would otherwise. And it’s actually better because a lot of what sets off his O.C.D. is actually at home. 

And then for folks that are struggling with more contamination-type of things, again, it really depends. So if it’s in response to coronavirus, then what we are really doing is, we are looking at following the C.D.C. [Centers for Disease Control] guidelines and not going in excess of that. What we are trying to cut back are repeated rituals. So if someone has touched something and then they wash their hands for 20 seconds, we are working on not doing it again until they become contaminated. 

RRS: What advice do you have for those with O.C.D. going through this time? Something that I’ve struggled with is, if I’m doing this behavior, is it because it actually is the right safety behavior? Or is it just my O.C.D. making me think that I have to clean this or I have to do this in a certain way?

SC: Yeah, and I don’t think there’s a fully right thing. There’s uncertainty even in what we would call the right thing, because at the beginning, the guidelines were evolving on a day-by-day basis. 

If I were giving advice, I would say to be limiting the amount of media that you’re taking in. For some people, that might mean checking the news or following an update once a day. For some people, that might be every other day. And then just having a really clear plan around what are the C.D.C. guidelines.

RRS: This is a question that comes up a lot in my house: “Rosie, we know that this is essentially your biggest nightmare come true. So how can we support?” One thing I’ve tried to make very clear is, I don’t want people talking about what they read in The New York Times or on Facebook. It just instills more and more anxiety. Reading things about how these perfectly healthy people are dying, it’s like, “Oh, I’m a healthy person, is that going to happen?” And so it’s just really trying to understand how to support those of us going through this. And how to be reassuring to myself and not needing to get that from other people. 

SC: One of the things that’s really important, especially for people that are living with family members, is having family agreements around the family norms and making agreements around washing and cleaning. And seeing if there can be some common ground and also on taking in media and when media is going to be discussed and having guidelines around that.

RRS: Let’s talk about misconceptions and stigmas, because I know there’s definitely a lot of them. I remember I was in middle school and some kid on the bus was saying how O.C.D. is when you’re in the kitchen and someone else is in the kitchen and you don’t like them, so you have to leave. And I remember thinking, that is so far off from what it is. And I had friends in high school who would say, “Oh, you know, I have O.C.D., I have to be so organized with my notes or how I like my pens up” and just not really understanding what it actually is. And so I think I’ve always really been adamant on when the opportunity comes up to try and educate people.

SC: I totally agree. I think it’s a very misunderstood diagnosis. One of the biggest misconceptions is that someone is just particular, or they’re scared of germs. It’s not taken very seriously, the level of suffering that occurs, just not understanding it as actually a disorder that’s both behavioral and also biological. It’s not a choice that people are suffering from O.C.D.

RRS: Are there any questions that you have for me?

SC: I’m actually just wondering about your interest in this project and what are your hopes for this?

RRS: I think I really just wanted to let other people out there know that there are options. There is help. Growing up, my parents, [it was] really hard on them, not being fully aware and equipped on how to help, and seeing their child suffer, not really knowing what to do. [Exposure therapy] has helped me, and just wanting that so badly for other people who are going through really hard times, wanting to let people know they’re not alone going through this. So I really appreciate everything that you’ve brought to this and all the words of wisdom.

NOTE: If you are in crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or contact the Crisis Text Line by texting TALK to 741741.

For more resources, see: International O.C.D. Foundation

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