Talking about OCD with IHME’s Dr. Andrew Marshall for Mental Health Awareness Month
Published May 30, 2023
Two of the top search terms for IHME’s website this year have been “mental health” and “depression”—a sign of growing interest in mental health disorders, and perhaps also a sign of the need for resources and data. According to the GBD 2019 study, depression and anxiety are the most common types of mental health disorders. Depression is the second-highest cause of disability globally, while anxiety is the eighth highest. Eighty percent of this burden falls on people between the ages of 16 and 65, our primary working years. Despite decades of global campaigns, the age-standardized rate of health loss from mental health disorders has remained the same since 1990. The same barriers to care also continue, particularly in low-income countries where lack of funding and health care infrastructure make accessing care more difficult. Meanwhile, social stigma is a barrier to care that continues to affect all countries, regardless of wealth.
A key strategy for alleviating stigmas of all kinds is to share our experiences and learn how to empathize with experiences we haven’t had. To that end, Dr. Andrew Marshall, Lead Research Scientist at IHME, talked with me about his experience having obsessive compulsive disorder, common misconceptions about OCD, the nuanced stigma he’s experienced around this disorder, what empathy can look like, and what advocacy can help achieve.
What part of your experience with OCD do you wish that people without OCD could better understand?
I think the biggest thing is that OCD is not a personality quirk. I’ll see T-shirts that say things like “OCD: Obsessive Cookie Disorder,” or “OCD: Obsessive Christmas Disorder,” or I’ll see how the TV show Monk depicts OCD as obsessive neatness. These representations make this disorder seem like a quirk, as in, “Oh, I’m so OCD about something.” People who have OCD never say that because that’s not how OCD works. For a lot of people who have OCD, it manifests more as an idea that if I do something or don’t do something, it will cause harm to somebody else. It’s not something that I would pick to have as a quirk.
Another misconception is that OCD only manifests in one way, like neatness. To those who don’t have OCD, they might mistake the behavior they observe for a personality trait or a conscious decision. And it is completely not.
If you have OCD, it’s not just about making sure things are neat. It’s the idea that you’re constantly—depending on how severe it is—experiencing intrusive thoughts that get in the way of everything. Sometimes these thoughts turn into obsessions, which then lead to compulsions, and then you do things to alleviate those obsessions. Intrusive thoughts don’t line up rationally with compulsions. Turning a light on and off shouldn’t affect whether a building blows up next door. But that behavior could be what characterizes somebody’s disorder.
So what is observable by someone who doesn’t have OCD doesn’t necessarily line up with how another person’s OCD manifests internally? And it can be hard for someone who doesn’t have OCD to imagine that what they can see isn’t even half of what’s going on?
Yeah, exactly. When I used to work in a lab, I felt like if I didn’t take care of things appropriately, the lab would get defunded. These intrusive thoughts put so much pressure on me. When I describe it out loud, it’s like, “Why are you so special?” But I wish I didn’t feel that way. People may say things like, “I’m so OCD about my office,” but those people may just like to keep their office clean. If they don’t keep it clean, it’s not going to lead to severe anxiety.
In your experience, is there stigma around having OCD?
The term OCD can be used as a casual adjective in conversation, so in some cases, the stigmatization is that OCD doesn’t seem as serious as it really is because of how lightly people talk about it. For example, I once saw an article called “5 good things about having OCD” and I thought, No, there’s nothing good about this.
When you encounter stigmatization (or minimization, if that’s a more appropriate word to use), what are some of your coping strategies?
It depends on the setting. If someone says something in passing and it doesn’t lead to a tangential conversation, then I’ll probably message or email that person one-on-one and say, “Hey, listen, I just wanted to point out that OCD is not a personality trait, but a severe mental disorder.” Then I’ll send a link to the International OCD Foundation, which is a great resource. I’ll try to be as calm and communicative as I can. I don’t want to lash out, but I do want to have a conversation. I want people to understand 1) Why they shouldn’t be using terms like that when that’s not what they mean, and 2) Usually the people who say “I’m OCD about ‘blank’” are people who don’t have OCD, because that’s not how OCD works.
Sometimes I’ll do this on social media—and that’s always a mistake because it’s social media and you never know who is going to read it or how people are going to respond. But I still feel like I would be doing myself a disservice if I didn’t say something.
That leads to another question I have, which is, when people have a hard time empathizing with having OCD, what in your experience—or from what you can observe—tends to get in the way of developing that empathy?
Back when I was in grad school, somebody said they were “OCD about” something—this was right when I had gotten diagnosed, so I was still honing my ability to have this conversation—and I said something along the lines of, “Oh, when were you diagnosed with OCD?” And they said, “I haven’t been, but I probably have it,” which minimized the weight of the disorder.
I could see that they were being defensive.
When there’s a lack of empathy, it’s usually because people are getting defensive about their own personalities and I just “called them out” for saying they are something that they aren’t.
It’s always hard to be told that you’re wrong. If a personality quirk is just a quirk and not a serious mental disorder, does that put more pressure on them to change? Does that mean this comment is now conscious? Does it mean they can no longer fall back on excuses? I don’t know. I say these things with a pure hope that I can communicate, and through that communication, reduce misconceptions and misunderstandings.
When people in your life have changed their thinking around OCD, becoming more aware and more empathetic, what has caused that change?
I think people change when someone they know is going through this. Once you hear from somebody who is experiencing pain and stress from a certain condition that you may not have understood because of the way it’s conveyed across the media—whether or not it’s OCD—you start to understand a little more. When we can put a face to a condition and then hear how it’s affecting that person, it changes how we think. When we care about someone and advocate for them, that extends our networks of advocacy.
What else is important to know about OCD?
Accessing appropriate care is difficult, and mental health resources are not distributed equitably. I used to live in a college town in the middle of Kansas where the only therapy I could access was talk therapy, which isn’t the gold standard for treating OCD. When I was preparing to move to California, I heard that in those bigger areas, I might be able to find specialists in OCD. I Googled “Irvine obsessive compulsive disorder,” and the first hit was an OCD treatment center 15 minutes from where I was going to live. I found out that people have traveled from across the country to that same center to access their resources because there are so few good OCD therapists in this country, and they tend to be located in densely populated areas.
I feel so sad for people who are living in places where they can’t access the right treatment. Even though I’m not part of the IHME team that focuses on anxiety disorders, I hope that there are ways in which IHME can somehow speak to or help make mental health treatment for conditions like OCD more equitable.
Early on, in experiencing what turned out to be manifestations of OCD, I felt so alone until I found out that, 1) It has a name, and 2) Other people go through the same thing. I know that part of my privilege as a white male is that I can talk publicly about struggling with a mental health disorder. I just hope that by my naming it and saying “I struggle with having OCD,” at least one more person will feel less alone.
Mental health by the numbers (National Alliance on Mental Illness)