Podcast: What Is OCD Really Like and What Treatment Options Are Available? With NOCD’s Stephen Smith

Inside Mental Health Podcast Guest and Host Bio

Stephen Smith is the Co-founder and Chief Executive Officer of NOCD, the largest provider focused on ending worldwide suffering caused by obsessive compulsive disorder (OCD). After emerging from a personal struggle with undiagnosed OCD, and experiencing the success of exposure & response prevention (ERP) therapy firsthand, Stephen made it his mission to transform the behavioral health treatment system with the goal of creating an anytime, anywhere virtual care platform that allows those with OCD to receive a diagnosis quickly and accurately, as well as appropriate treatment using ERP therapy — considered the gold standard treatment for OCD.

Since its inception, NOCD has built the world’s largest OCD patient community online and has become the #1 provider of ERP therapy. Its international OCD-specialized network provides hundreds of thousands of treatment visits annually and is contracted to serve hundreds of millions of Americans as an insurance benefit. Moreover, the NOCD Therapy treatment model was proven by peer-reviewed research to significantly reduce OCD severity in half the amount of time than the standard under Smith’s leadership, making it one of the most successful treatment models in the behavioral health industry.

Smith has secured over $85 M in financing since NOCD launched commercially in 2018. He was also named to the Crain’s Notable Entrepreneur list in 2020, the Forbes 30 under 30 list in 2021, and the Top 50 In Digital Health list in 2022.

Our host, Gabe Howard, is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without.

To book Gabe for your next event or learn more about him, please visit gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Mental Health: A Psych Central Podcast where experts share experiences and the latest thinking on mental health and psychology. Here’s your host, Gabe Howard.

Gabe Howard: Thanks for listening everyone. I’m your host Gabe Howard calling in today we have Stephen Smith. Stephen is the co-founder and CEO of NOCD, the largest provider in the world focusing on ending suffering caused by OCD. NOCD, is an online therapy platform offering exposure and response prevention or ERP therapy. If you want to know more about NOCD’s services, just visit TreatMyOCD.com. Stephen, welcome to the podcast.

Stephen Smith: Gabe, thank you very much for having me. I’m very excited to be here today.

Gabe Howard: I’m glad that you’re excited, Stephen, and I want to share with the audience that NOCD was founded because of your personal struggles with OCD and the trouble that you had accessing care. Now, I have to say, OCD is not exactly an unknown illness. We hear about OCD all the time. Society seems to be well aware of this disorder. Yet exactly what OCD is, it seems to escape us. All of that said, I was really surprised to learn that treatment, access to care and even diagnosis is a struggle for folks with OCD.

Stephen Smith: I think the lack of understanding is due to just the nature of OCD as a condition. So for those of you who aren’t familiar, OCD is a very prevalent, affecting about 1 in 40 people, but also very misunderstood condition. As, Gabe, you alluded to actually, and I describe it like this sometimes, it’s actually kind of similar to PTSD. For PTSD is oftentimes intrusive fears about the past. So someone may have a fear or flashback to a traumatic event. OCD is oftentimes intrusive, repetitive thoughts about the future, fear that something bad is going to happen to the individual suffering, or maybe one of their loved ones. OCD is oftentimes related to harm and to make those fears stop, because the fears are what we call egodystonic in nature. They violate the person’s core values and character. People with OCD do very specific actions, and those actions are called compulsions and the compulsions, they could be observable in nature where you could see someone, for example, check a lock. You could you could see someone drive around the block a few times, right? Those are observable compulsions. There are also mental compulsions. So actions that people take mentally to try to disprove, for example, a fear or they try to reassure themselves, right? The fears are the hallmark nature of the condition. But what drives the fears are oftentimes these compulsive behaviors and the compulsions in the short term alleviate the person’s distress. But in the long term, they make the fears go worse and worse.

Gabe Howard: But in pop culture, people with OCD are shown as unique and organized and well, happy. Why is the portrayal of OCD often generally positive?

Stephen Smith: What happens is the condition is connected to often the compulsion in pop culture. So people oftentimes view OCD as kind of a quirky condition or a personality quirk or adjective used to describe somebody who’s type A, not realizing what’s fueling the behavior are these very, very challenging fears that pretty much cripple the person, especially if they’re severe, from the time they wake up until the time they go to sleep. And that is completely invisible to others. And so I think as a result, what’s happened is people have these very personal, crippling fears and the fears caused them to do behaviors. Well, people don’t want to talk about the fears, given how personal they are. So, they get viewed by the behavior and, and others that are viewing the behavior, they don’t really understand why the person’s behavior. Right? It’s kind of creates this disconnect naturally. And my belief is that’s why this condition has been so misunderstood. The result, though, of the misunderstanding, Gabe, is that it’s caused people with OCD to become predominantly misdiagnosed. Right? So it takes today, on average, 14 to 17 years for someone with OCD to, get properly diagnosed and then to effective treatment.

Gabe Howard: One of the things that I was thinking about while you were talking is it sounds terrifying, but it also seems obvious to the person who is suffering. But then you mentioned that it takes 14 to 17 years to get a diagnosis. Now I’m thinking if I have these reoccurring thoughts that I can’t control, if I have these actions that are hurting me, I would seek treatment immediately. Why does it take so long to get a diagnosis? If the symptoms are so severe and so obvious to the person who is experiencing them?

Stephen Smith: From my perspective, it’s because of the embarrassing nature around the symptoms. So I’ll give you an example. So, a mother who has a fear of what if I harm my child? And the harmful fears could be related to throwing her baby out the window. It could be related to molesting her child. Again, fears that are polar opposite from that mother’s core values and character. And the reason why they’re so troubling is because they’re polar opposite, right? But to the, to the mother, they feel real, but she just can’t understand why she’s having them. And so she spends all day trying to push them out of her head, and therefore they stick in her head. Right? Well, when that mother goes and seeks help, let’s say she goes to see a general therapist. Then she’s going to describe her fears as, yeah, I have these fears about about my child, and I just get a lot of anxiety from them. What happens is, because this condition is so misunderstood, not only within the community of people with it and their families, but also in the health care world. The providers, seeing the new mother, doesn’t ask the probing questions needed to actually uncover what the mother is going through. Right? So she sees the the new mother and she says, well, look, you’re just suffering with generalized anxiety disorder. And the problem with that, Gabe, is that the treatment for GAD is oftentimes not only ineffective for OCD, it can also actually be harmful.

Stephen Smith: And that’s where people then get worse, unfortunately. And so you kind of have this cyclical issue then where that mother gets worse and she sees another provider and the same thing kind of happens, all because she’s too embarrassed to disclose what she’s really going through, in fear that that health care professional won’t understand her, won’t understand the nature of her fears. Right? And the, that she’s actually not a monster. She’s, in fact, going through OCD just because it’s so misunderstood. Like that’s personally what’s happened, what happened to me. Like I was misdiagnosed about six different times, and I was too embarrassed to disclose what I was really going through and as a result, was told I had just anxiety. I needed to snap a band on my wrist every time I had a fear, or I had to move away from my family because they thought that my family was causing this fear, and eventually the ineffective and harmful care caused me to get worse and develop severe depression and became housebound. Right? So this is a, this is an issue that unfortunately is not the exception today. It’s the norm. And that’s why again, we have to solve it. And it starts with bringing more awareness about what OCD is really like.

Gabe Howard: Stephen, I want to talk about your personal story for a moment, because what we now know was OCD. You didn’t know at the time and you went to mental health providers. You did the right thing. You went to seek treatment for something that was causing you issues in your daily life. And then they told you things like, I believe the example that you gave is that it was your family’s fault and you needed to be away from them. Did you believe them when they said that is what caused it? Were you like, yeah, yeah, that makes sense? It’s clearly all of these other things? Or did you have some inkling that they might be wrong?

Stephen Smith: You know, I initially I believed them because I went to seek help from someone who was in network. They were a PhD from a very prominent school, and they were advertising their services as being able to help. I was like, okay, well, typically if you had, for example, a stomach ache, you went to an urgent care in your area, you were confident that you’d go and get treatment for that stomach ache, and you’d walk away with at least some understanding of what’s going on, and you’d be able to then get better, hopefully in a few days. Right? So that’s kind of the health care system that we’re used to. And it’s a good health care system for very acute issues. But in behavioral health, I didn’t realize, you don’t really have that, right? Or you didn’t have that back in the day. It’s getting much better now, but you didn’t have it back in the day. And so, I did believe that that provider could help me. And I was very, um, I in retrospect, I’m not surprised. But like, I was very surprised that I wasn’t getting better faster when the advice wasn’t working because you’re like, okay, if this person is super reputable based off of their degree, based off their network, etc., then they should be able to help me. And maybe I don’t understand enough because again, most people don’t quite fully understand the behavioral health ecosystem from a treatment standpoint. They just think similarly, like they’re going to go in to see a therapist and they’re going to get better and the rest will be history. They don’t realize that it isn’t as well managed today overall as an industry as other segments of health care. That’s what happened with me. I did believe the provider. And then eventually, as I was getting worse, I became more skeptical. And that pushed me to get a second opinion and a third opinion, a fourth, and so on and so forth.

Gabe Howard: This is an awful lot of opinions. I, I. Some people would call that answer shopping. They were just like, oh this, this guy is not happy with the hard truths of his reality. So he’s just going to find somebody who tells him what he wants to hear. But I want to alert our listeners that this is not an uncommon story for people with OCD. They are not, in fact, answer shopping. They’re not getting any better. So they have to keep switching providers until they finally get the right diagnosis and the right level of care. But I got to tell you, Stephen, from the outside looking in, this seems impossible. Not everybody is able to switch practitioners like that. Their insurance won’t let them. They don’t have the resources or the money. There’s, there’s a shortage of mental health practitioners. What’s the I, I really feel like I want to ask like what’s, what’s the hope? What is the hope? Somebody listening to this is just like, man, this Stephen guy, he’s got it all put together and it took him years. What? What hope does somebody who is right in the middle of this listening to this podcast have, if they think the next person I schedule with may have no idea what I need?

Stephen Smith: Um, I’ll just speak from my personal experience, okay. The reason why I was seeking additional providers or additional methods of help was simply because what was going on wasn’t working, and not only was I not getting better, I was actually getting worse. And so people who knew me saw someone who was once starting quarterback at their university, a small school in Texas, go from being in that state down to rock bottom in less than a year. To see that just freefall was pretty shocking to to not only me, but also other people around me who I’m close with. So my family, for example, saw and they were just, they just didn’t know what to do. And so I guess that that was, that was part of it. Right? Which was it was not just a hey, this guy is slowly getting worse. It’s no, this guy’s in freefall right now. And we’ve got to do something about it. I think that was part of the reason why I did switch providers so frequently, and I understand I was very fortunate to have a supportive family that would help me through this and have supportive friends, too, that were willing to help me through it. But eventually, I hit rock bottom and I had to stop going to school. I stopped playing football. I was stuck in my room from the time I woke up until the time I went to sleep and I just couldn’t function. And at that point, when I was at rock bottom, I started to myself search for help in other ways.

Gabe Howard: I know from our pre-interview that at this point you started to seek out support online and that ultimately you found a community who helped guide you towards exposure and response prevention or ERP therapy. And ultimately that helped you get well. And it led to you starting NOCD. Now I see a lot of people online questioning NOCD. They’re asking if it’s a scam. They’re asking if it really works. They’re asking if anybody has utilized this to get well. Now, Howie Mandel is your spokesperson. So you’re, you’re no small potatoes. I just want to point that out. But I, I do understand why people are skeptical of online services proclaiming that they have the solution. You’re the CEO of NOCD. How do you reassure people that it is safe and legit? In a world where a lot of these online services are designed to rip off desperate and vulnerable people?

Stephen Smith: It’s a great question because especially as access has grown in the last 3 or 4 years, particularly post pandemic, you have started to see companies that can say, hey, I could, I could treat everything under the sun or a provider that says, I can treat everything because I was licensed ten years ago, right? You also have different individuals selling alternative interventions that might have some evidence, but may not have enough evidence yet to conclusively say they are super effective. So, there’s a, there are many different options. The way that I as a person with OCD, again, I’m not a clinician by training. So our clinical team could probably answer this question a little bit differently. But as a person with OCD, I oftentimes say trust but verify. Meaning someone is telling us, telling a story that they, that they have gotten better from something and they’re really excited about their progress and they’re doing great. Like that’s amazing, right? We’re happy that person is feeling better. But verify that what they’re, what they’re using to get better is actually correct. And you shouldn’t just trust something point blank.

Sponsor Break

Gabe Howard: And we’re back with the founder and CEO of NOCD, Stephen Smith. To learn more about NOCD’s services, visit TreatMyOCD.com.

Stephen Smith: There are sometimes people out there who say, you know, they there are different types of interventions that are not supported by science today that help them have a life changing experience for OCD. Or there are people seeing a coach that was life changing. And again, it’s great that they’ve gotten better and their story might be unique in some ways and that’s, that’s valid. But we have to verify the science. And a good place to go to verify the science is the International OCD Foundation, or other types of very established entities that have brought together the research community over the years, and they can actually attest to if something is evidence based or not. In fact, even insurance companies can even be a good way to determine if something is evidence based. Again, I know that sometimes people have experiences are different given this diagnosis and whatnot, but if there’s a certain type of treatment that isn’t yet covered, there may be for a reason, right? So just my, my point is it’s good to be skeptical, but there are also places where people can go to verify if the treatment is actually effective or not. I do think the internet, though, can do a great job of bringing stories to life. We are running campaigns with Howie Mandel, who’s been amazing, to spread awareness about what OCD is really like, and the goal is so people can have that aha moment earlier on in their journey.

Stephen Smith: We’re building trust with the community.We also wanted to make sure that if people need a treatment, they can access that treatment in an effective, affordable and convenient manner directly in the same place. Because it’s such an embarrassing condition, people don’t oftentimes want to go out into public to go and meet someone face to face they’ve never met to talk about these extremely personal issues. It’s sometimes easier then to bring that provider directly to them, say, look, you know, you can take this session from the comfort of your room in the place where, in fact, you actually also experience your OCD the most. So that’s one nuance to OCD, where virtual therapy in some ways is even more effective than a brick and mortar intervention. And then between sessions, we wanted to make sure people had always on support from different peer communities, people with lived experience who are we call member advocates. As well as, they had access to technology that can help guide them through different OCD episodes in an evidence based way. So we really went to address each individual problem that people face in their journey, and we’re going to keep doing that until this problem is solved.

Gabe Howard: How have things changed since you started your company, Stephen? I mean, treatments existed and people were getting care before NOCD was started. So I just am curious, what are you doing differently and what kind of results are you seeing and what do you have to prove up what you’re saying?

Stephen Smith: Thanks for the question, Gabe. OCD is unique in the sense that it’s treated in a very specific way with exposure and response prevention therapy, and that treatment has to be administered by a licensed therapist that has deep specialty training. The problem historically was there were few therapists that had that deep specialty training. So, if you think about the prevalence of OCD, 1 in 40 people at some point in their life will suffer from it. Prior to NOCD, there were probably more or less somewhere between 1,000 to 3,000 licensed therapists in the country that specialize in ERP. If you just think about the supply demand imbalance, it is extreme for this population. Which is challenging because when this population, people with OCD related conditions, they oftentimes receive generic talk therapy or general CBT that doesn’t actually work for them. And in some cases it can even make them worse. So, we train all of our licensed therapists at NOCD in exposure and response prevention therapy. We have a team dedicated to doing that. We train and we supervise. We’ve been able to actually show clinically in the largest peer reviewed study that’s ever been done in OCD treatment, that we can get people better at about half the amount of time than the standard of care. Standard of care, meaning about 25 hours clinically. We get people better on average between 12 to 14 hours of clinical time. We’re able to show that by using evidence based scales. We first give them a comprehensive assessment. We then give them a scale at their midpoint and then at their end point. Once they’ve completed their 12 to 14 hours of therapy, it gives us a chance to understand progress in a very objective manner.

Gabe Howard: Now, NOCD is an online platform, but it sounds like you actually see via probably video conferencing, I’m, I’m assuming an actual therapist. It’s not just an online workbook or an AI, but there’s, there’s actual therapists involved in the process.

Stephen Smith: Yes, actual therapists. And it’s our network. So we we function as a provider. Think of us as a large specialty clinic that’s just virtual. So people can come in to our platform. They can do live face to face sessions with a licensed therapist who specializes in ERP, who we’ve trained and we’re continuously supervising and monitoring and managing. We are, our team is actually very involved in making sure that we provide excellent care. And then between sessions, that therapist will come back, they’ll review notes, they’ll go and they will attend different case consultations, they’ll meet with our clinical leadership, etc. In between sessions as well, the member will go and they will live their life managing OCD. And one clear distinction I want to make is you can’t cure OCD. OCD is a chronic condition. You can learn to manage it and learn how to live with it. What we’re really doing is equipping each individual with the tools needed to learn how to manage it, eventually on their own, so they can spend more time living their life and less time in a treatment setting. So the way our model works, Gabe, is we do an assessment. The treatment starts off in twice weekly face to face sessions. Then eventually we step people down to once weekly sessions, and then eventually when their outcomes indicate that they have seen a significant reduction in OC severity as well as comorbidity severity. Because sometimes when you treat the root issue, the comorbidity is reduced in severity as well. We then step people into a maintenance phase where they’re maintaining their outcomes, and they’re keeping that subclinical level so that we can ensure they can spend most of their time, again, living their life.

Gabe Howard: Stephen, I want to ask again, both as the CEO and founder of NOCD, and as someone who lives with OCD themselves, what is your biggest advice for someone wanting to start treatment for OCD but may be hesitant?

Stephen Smith: I would say everyone that has OCD that has gotten better was once in your shoes, fearful of trying treatment. Oftentimes people, like I mentioned earlier, have been misdiagnosed and they don’t trust the system as a result. But if you are suffering with OCD and listening to this podcast, I’d recommend first and foremost that you one, learn about how OCD is treated by the International OCD Foundation. It’s an objective nonprofit focused primarily on making sure people who have OCD can can live a healthy life. Learn about the condition, learn about how it’s treated, and then connect with someone who has OCD, who has gone through that experience before and has come out the other end. I would, specifically offer my own time. If someone has a question, you can contact me personally at Stephen@NOCDhealth.com and I can help, or connect you with someone I know. but I would encourage you to to really trust in the science because the one component about OCD that should give people hope is that it’s very treatable. You can learn to manage this condition because there’s very specific treatment that can make a big difference quickly. And it’s sometimes scary to try to do the treatment because you’re learning how to respond to your fears. And that’s what the treatment involves, learning how to respond to the fears so that you don’t do the compulsive behaviors. That can sometimes be a challenging process, and it’s scary to start it. But if you trust the science, you will end up having a chance to to see significant improvement. The good news is, is that if you can go to a specialist who understands OCD, that can do the treatment, it’s probably the most important thing that you can do in your journey. And a good way to determine if they’re an OC specialist or not is actually to interview your provider. And there’s a list of questions on the International OCD Foundation website that show you what to ask if you need it.

Gabe Howard: Thanks so much for being here today, Stephen. But before we finish up, I want to ask about you personally. How is it going with your OCD now? Are you doing okay?

Stephen Smith: Thanks, Gabe. Um, I’m doing. I’m doing well, honestly, this is been a, knock on wood, a really great year for me in terms of managing OCD. Every year I do have a few weeks where it does bother me. Right? But again, I learn how to use the tools needed to stay healthy with this. The tools, meaning the training that I’ve received from my therapist that specializes in ERP. I also connect with folks in the community who have OCD, and I’ll just kind of share with them what’s going on, and they will remind me that once you’ve gotten better for OCD, you’ve learned how to master conquering your condition before. It’s just a matter of doing it again and again. So, it’s just kind of like riding a bike in that way. Just got to keep focused and know that you can do it, right? So they give me great encouragement. Um, I will also say that again, it’s a chronic condition. So there are times where it is challenging and it’s okay to have that happen. Right? You sometimes present as like someone who has armor because of what you’re doing, but at times it’s bothersome. It’s really, it can be really tough and um, it’s okay. And when that does happen, I do try to get back in and see my therapist and kind of like, it’s like tuning a piano. I have to retune my piano and, and and get back on track. But I’m doing well, thank you for asking. My life has been really great. Um, especially over the last few years as my family’s been growing and, um, I really enjoy the people I work with too. And enjoy, enjoy doing what I do each day.

Gabe Howard: That is absolutely wonderful, and I am so glad to hear that you’re doing well. And I, I imagine our listeners are glad to hear that you’re doing well, too. I mean, frankly, for people out there struggling with OCD, I think it’s got to be super helpful and reassuring to see someone like you being so public about living with OCD and being so successful at managing it. It’s just absolutely a lot easier to reach out for help when you see that someone else has already done it first. With that in mind, how can folks access NOCD?

Stephen Smith: Thanks, Gabe, and to access NOCD, go to NOCD.com. And you can learn more about NOCD therapy on our website. You can also download the NOCD mobile app on either Google Play or on the App Store. And if you’d like to start treatment with a licensed therapist that specializes in OCD or ERP, or just consider the process and learn more about it, you can book a free 15 minute phone call on either our website or within the NOCD mobile app. And once you book a phone call, you’ll connect with someone wonderful on our team. We’ll talk to them about what therapy is like, and you can also ask questions and they can honestly give the answers. If we’re not the right fit for you, for whatever reason, we can refer you out to a preferred partner that might be a better fit.

Gabe Howard: And just to clarify, that’s NOCD.com?

Stephen Smith: Yes, sir.

Gabe Howard: Stephen, thank you once again so much for being here. We really, really appreciate it.

Stephen Smith: Thank you, Gabe. Really appreciate your time. And it was wonderful being here.

Gabe Howard: You are very welcome, Stephen, and I want to give a big thank you to all of our listeners. My name is Gabe Howard and I’m an award winning public speaker who could be available for your next event. I also wrote the book “Mental Illness Is an Asshole and Other Observations,” which you can get on Amazon, but you can grab a signed copy with free podcast swag or learn more about me by heading over to my website, gabehoward.com. Wherever you downloaded this episode, please follow subscribe to the show. It is absolutely free. And look, you don’t want to miss a thing. And listen up, can you do me a favor? Recommend the show. Because sharing the show is how we grow. You can share it on social media. You can share it in a support group. You can share it in an email. Hell, send somebody a text. I will see everybody next Thursday on Inside Mental Health.

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