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Living With OCD

2025/6/10
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This chapter defines OCD, clarifies its prevalence, and challenges common misconceptions. It highlights the diversity of OCD manifestations beyond stereotypical handwashing or symmetry obsessions, using real-life examples.
  • Roughly 163 million people worldwide experience OCD.
  • OCD involves cycles of obsessions (intrusive thoughts, images, or urges) and compulsions (behaviors to reduce distress).
  • Media often portrays limited aspects of OCD, neglecting its diverse manifestations.

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This message comes from ShipBob. Running a global e-commerce business, you have a lot on your plate. ShipBob can pick, pack, and ship your orders from their global fulfillment network, so you get time back to grow your business. Go to ShipBob.com for a free quote. You're listening to Shortwave from NPR. Around 2% of the global population struggles with obsessive compulsive disorder, or OCD.

That's roughly 163 million people who go through cycles of obsessions, these unwanted intrusive thoughts, images or urges, and compulsions, behaviors to decrease the distress caused by these thoughts. And Dr. Carolyn Rodriguez says the way it's often portrayed in pop culture, like the movie As Good As It Gets starring Jack Nicholson, a character might do things like...

Very ritualized hand washing. Or you might see an individual who needs to have everything symmetrical. Carolyn is a physician at Stanford University studying OCD. She says these things can all be part of OCD, but they're often the only ways we see it manifested in the media.

In reality, there's a lot more to it than symmetry and handwashing. OCD is also called the doubting disease. So, for example, an individual may be driving down the road and all of a sudden have an intrusive thought that, oh, maybe I ran somebody over. And that thought, as you can imagine, really increases anxiety to the point where then the compulsions kick in. They have to drive back to the site where they were driving.

And make sure that there isn't an ambulance there, police. Or they might go home and check the news to see if there are any reports of somebody who has been run over. Now she's the director of Stanford's OCD Research Lab. And she says there's still a lot of basics we have yet to understand about the condition.

In her time practicing medicine, she's seen many permutations of the condition. She's met a student who has just started college. He was stuck with writing and rewriting his homework, trying to make sure that it was perfect.

And that led to him not being able to do well in his classes and really, you know, just derailed his life. And Carolyn's also seen people who wore gloves to prevent people from seeing their hands.

raw and red from washing. And that's when it really hits you that this is something that people keep to themselves and are just going on in their day-to-day lives really profoundly impacted. Carolyn learned about OCD during her med school rotations, and she realized how often people suffering from OCD and even medical health providers may not recognize the symptoms. When I was in

in my training, one of the most sobering statistics that I saw was that on average, there's a 17-year delay between the onset of OCD symptoms and treatment initiation. And it's heartbreaking. So today on the show, the reality of OCD, how it's managed, and how scientists like Carolyn are looking to include more populations in their research and find new ways to treat it.

I'm Regina Barber, and you're listening to Shortwave, the science podcast from NPR.

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So, Carolyn, we're talking about OCD, obsessive compulsive disorder. What's actually happening in the brain of someone who's diagnosed with OCD? Although we don't know the exact cause of OCD, there's converging lines of evidence suggesting that it is a circuit gone awry.

And so you'll hear people talk about in the field of the orbital frontal cortex, which is the front part of the brain that's important for generating thoughts, to the striatum, which is a deeper structure within the brain that's important for generating behaviors.

And then to the thalamus, which is a relay station, and then back to the orbitofrontal cortex. So this loop or corticostriatal hyperactivity can result and is associated with these kind of OCD behaviors.

Then the other piece is, you know, the brain chemistry. So the main chemical messengers in the brain, are they making things go awry as well? And we know that a lot of the treatments that we currently have are based on serotonin reuptake inhibitors.

And one of the emerging lines of evidence has been, you know, could it be glutamate, the main excitatory chemical messenger in the brain? And

And so my research is really focused on glutamate. So there's still a lot we like don't know when it comes to OCD. Right now, there are gaps in populations on who we are looking at who have OCD. So like studies tend to be largely white. They're, you know, largely male, largely young sometimes because we're taking like college students.

But you're looking at people within the Latin American community and having Hispanic ancestry. Like, what are you finding? Yeah. So I'm a site in an NIH-funded study called the Latino OCD Genomics Study.

And sites across the U.S. and Latin America are looking to see if we can collect more samples of individuals with OCD from these backgrounds so that we maybe have a greater representation within genomic studies.

And so that study is ongoing. I'm really excited about it. I think one of the things that is difficult in mental health more broadly, but also in Latin American, Hispanic countries is stigma. And, you know,

It's just so heartwarming to see a group of scientists and researchers coming together, raising awareness for OCD in Hispanic and Latin American countries. And I'm really hopeful that this will do a lot of good, not only for the genomics and the science, but also in terms of raising awareness of the importance of these issues in their home countries. Yeah, that's very important work.

So, Carolyn, when should someone seek diagnosis and treatment if they think they might have OCD? So individuals with obsessions and compulsions and part of the OCD diagnosis, if they have these obsessions and compulsions for greater than an hour a day for at least a year, then we consider that they may have obsessive compulsive disorder.

Also, as part of the diagnosis, it needs to impact and interfere with social or work or other important aspects of functioning. Okay. So when somebody is diagnosed, then you'd mentioned therapy and medication. Can you kind of walk me through these treatments? So.

When somebody is first diagnosed with OCD, there are two first-line evidence-based strategies for treatment. One of these is cognitive behavioral therapy with exposure and response prevention, or for shorthand, I'll use ERP. So with ERP, what you're trying to do is try and unlink

The connection that individuals have with an obsession that causes anxiety and the need to do a repetitive behavior to decrease the anxiety. Because you can imagine if you have an obsessive thought and then you do a compulsion, then you feel better. Then that tells the brain like, yes, you should have done that. That was a scary thing. Right. So ERP breaks that cycle.

And so typically that's done by organizing a hierarchy from the least feared stimulus to the most feared stimulus. So I'll give you an example. So somebody with contamination, let's say,

They believe that the door handles have germs. You might take a tissue and just rub it as a therapist, rub it across the door, and then gently rub it over the individual's pinky and then encourage them not to do their compulsive behavior. That may be a little bit lower on the hierarchy. The very top of the hierarchy may be them putting their hand in the toilet at Grand Central Station. Yeah.

Right. So your reaction, your reaction speaks volumes. Right. Which is this is a scary and hard thing to do for anyone, let alone somebody with OCD. But it's very, very effective. They would have won at that point.

Wow. Well, it's effective. But from your reaction, I can see the challenge that we have as a field is how do you get somebody to do this really wonderful treatment when it involves doing the thing that you fear the most? Yeah. What kind of medications are there then? Yeah. There are serotonin reuptake inhibitors. So these include things like sertraline or fluoxetine.

And sometimes one of the things that clinicians don't realize in treating with OCD, you need to have it at much higher doses for longer periods of time than you do in treating depression. And some of your work has been looking at like potential future treatments like ketamine. It's a dissociative anesthetic, but more recent research has looked at its potential to like treat things like depression and PTSD. Right.

What made you want to test it for OCD? Yeah, so as a clinical researcher, I felt really frustrated. The treatment of OCD with serotonin reuptake inhibitors can take a long time, like two to three months for symptom relief. And even then, roughly half of patients will experience only minor symptom reduction.

And similarly with ERP, it can take two to three months. It's very helpful, but sometimes it takes a long time and individuals are worried and concerned about doing the treatment. And so I really wanted to try and find a way to quickly reduce symptoms and

and to help have it be a bridge to these really wonderful therapies. If you can knock down OCD a little bit and get people to do ERP, it will be wonderful. But you don't have to be in pain, right? And so

I identified glutamate as a potential pathway and novel medication strategy based on increasing evidence that glutamate plays a significant role in OCD. And also at the time, there was really wonderful reports of ketamine having rapid antidepressant effects. Right. And the research has like mixed results, right? It's not definitive treatment. Right.

in some studies with people with OCD, it hasn't shown any benefit. But you've seen some results in your work, right? With NIH funding, we completed a five-year study looking at a single infusion of IV ketamine compared to midazolam. Midazolam is a drug class called a benzodiazepine, and it's given to people sometimes before surgery, sometimes

These are medications that make people feel more relaxed. They can feel woozy. And so given that ketamine has this side effect of

feeling a little bit out of it, feeling a little bit dissociated. It serves as a better comparison so that people can't tell as much that it is ketamine. It's not perfect, but it does blind things a little bit more. And what we found was that in a little over half of individuals,

The OCD symptom reduction was statistically significant and different between ketamine and midazolam, where ketamine had this decrease, clinically meaningful decrease in OCD symptoms.

And further, what we found is when we continued assessing their symptoms using the Yale Brown Obsessive Compulsive Scale for up to four weeks after that initial infusion, there was a statistically significant separation between ketamine and midazolam out to three weeks and not four weeks. Yeah, it's going to be really interesting to see if these effects can be widely replicated, right, and safely continue for long-term use.

So what would you want to see from the field in the next 10 years? One thing I'd like to see from the field in the next 10 years is using technology to support clinicians in trying to identify problems.

OCD symptoms as soon as possible and being able to offer first-line treatments because half of people will be helped by just trying one of these first-line treatments of medications or therapy. And then for people who are not helped by these first-line treatments, I'd love to be able to understand how we can relieve OCD symptoms quickly and

How we can diversify our current tools. There's not one size fits all. Not everybody is going to want to do ERP because they are afraid. How do we build bridges so that people can get the most out of these treatments?

And finally, unlocking the brain basis of OCD so we can make even more precise treatments and even be able to understand who will respond to which treatment so that we can really greatly reduce the amount of time somebody has between symptoms and symptom relief. Thank you, Carolyn. Dr. Rodriguez, thank you so much. Thank you. It was such a pleasure to be here.

This episode was produced by Rachel Carlson and edited by our showrunner, Rebecca Ramirez. Tyler Jones checked the... Maggie Luthar was the audio engineer. Beth Donovan is our senior director, and Colin Campbell is our senior vice president of podcasting strategy. I'm Regina Barber. Thanks for listening to ShoreWave from NPR. This message comes from Thrive Market. The food industry is a multibillion-dollar industry, but not everything on the shelf is made with your health in mind.

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