By Cori McMahon, Psy.D, NCCE, Vice President for Clinical Services
Obsessive Compulsive Disorder (OCD) is often misunderstood and can be debilitating for the individual who struggles to manage symptoms. Unfortunately OCD is also grossly misdiagnosed. With a lifetime prevalence of 2.3 percent in the U.S., OCD impacts people of all ages and walks of life, with symptoms that include an ongoing cycle of obsessions and compulsions.
According to the International OCD Foundation, obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings. Compulsions are behaviors which an individual engages in to attempt to get rid of the obsessions and/or decrease distress. To learn more, I spoke with the founder and CEO of NOCD, Stephen Smith.
McMahon: You’ve shared that the idea for your platform, NOCD, was born as a result of your own experience with OCD — having been misdiagnosed and, as a result, having to endure both providers and treatment approaches that were not the right fit. Can you share a bit about that journey with us? And can you talk a bit about how important it is to get it right from the beginning and what a difference that can make for people?
Smith: The journey was complex to say the least. I wasn’t diagnosed with OCD until seeing a fifth provider and being at rock bottom. I left school, stopped playing sports, and was housebound. It was because I was misdiagnosed and mistreated.
Here’s a summary of the story. I was a sophomore in college, playing football in a small school in Texas. Between sophomore and junior year, I went home to Chicago to see family and do an internship. I started to have these intrusive thoughts. I had no idea about OCD.
For those who are unfamiliar, OCD is a condition where you have intrusive thoughts, urges, and images that violate your core values and character, so they are completely unwanted. They cause you to question some of the most fundamental aspects of yourself. To make these thoughts go away, you perform actions called ‘compulsions.’ These actions, in the short term, might temporarily relieve some of the anxiety, but long term might actually reinforce the fear and make the fear grow stronger over time. So it basically cripples your life.
The thoughts can be taboo. In general, for people with OCD, the thoughts can be violent, sexual, religious, relationship-based, existential, etc. It’s different from the pop culture understanding of OCD, so I didn’t really know what was going on as I was experiencing these symptoms.
I went to see a psychologist who told me that I just had anxiety, which is one of the symptoms of OCD. I was instructed to take a rubber band and snap it across my wrist every time I had an intrusive thought. While I thought this was strange advice, I figured they knew what they were doing, so I tried it. I was walking around with a rubber band on my wrist, snapping it every time I had a thought, and it just made me worse.
So, I saw a second provider and they told me that every time I had a thought, I should imagine putting it in a boxcar of a train that is going by through my head. So, I’d imagine a train going by in my head and putting the thoughts in each box car. Again, it’s very strange advice, and I got worse.
I saw a third provider and they told me my family was the issue, and I should move back to school. So, I packed my bags and drove 1,500 miles back to school, thinking everything would get better when I returned. It actually got worse. Being on my own and not knowing what to do, I started to develop depression.
I saw a fourth provider who thought depression was the issue. They weren’t really addressing the root problem: OCD. I eventually hit rock bottom where I stopped going to school and stopped doing everything. The entire journey took about five or six months, and I was desperate.
I didn’t know what to do so I started searching online not only to reassure myself, which is one of my compulsions, but to figure out what was going on. I stumbled upon a group of people out there who were going through the same thing, and they defined their symptoms as OCD.
I couldn’t believe there were other people who were going through the same experience. I learned about Exposure and Response Prevention (ERP) therapy, the gold standard treatment for OCD. Because ERP requires a specialist, I searched for and found one in my area. She was cash only, completely out of network, and charged $350 per session. I had to find a way to get on this provider’s waitlist and then get the money to actually see her. Fortunately, a family friend helped me with the cost of treatment, and while it was a challenging process, I regained my life. I was able to return to school and my football career.
One in 40 people have OCD. Millions of people are misdiagnosed; it can take 14-17 years to get the right care; and those with OCD are 10 times more likely to die by suicide.
It should not be this hard to get treatment. Instead, it should be efficient, effective, and affordable. This was my aha moment. It is less of a clinical issue and more of an operational one. I realized we could use technology to bridge the gap. The healthcare system does not see the true prevalence and cost of OCD, and we are focused on putting the right process in place to get people help.
McMahon: The lifetime prevalence of OCD is 2.3 percent in the US, with an average age of onset at 19 years old, and a quarter of cases starting by age 14. It’s also reported that approximately one-third of diagnosed adults are able to recall having experienced symptoms in childhood. Do you think, based on the potential for misdiagnosis, that the current prevalence of OCD is underestimated?
Smith: The majority of people have harm-based intrusive thoughts. They are taboo because people are embarrassed or ashamed, so prevalence is probably higher. It’s safer to report anxiety instead, so we think the prevalence is much higher than 2.3 percent.
McMahon: OCD is so often made light of in pop culture—in movies or on TV when a character might describe themselves as “so OCD” in a joking way, when what they’re really talking about, maybe, is being overly organized. What are your thoughts about the impact culture might have on those who actually have clinically diagnosable OCD? And does this contribute to stigma or shame?
Smith: It’s a really big issue. Pop culture’s definition is not malicious in intent, but it trivializes the experience of OCD sufferers. In particular, it masks the real issue, which is the pain they’re experiencing.
For example, one might wash their hands for fear of spreading illness to an immunocompromised family member. The actual suffering is not accounted for in the pop culture definition. It only depicts the tip of the iceberg, making it seem much less serious. We have to shift society’s perception. OCD is a crippling condition that greatly increases the risk of dying by suicide. Pop culture often makes light of it.
McMahon: To make sure we are getting the best information and not just relying on what we hear from pop culture, can you walk us through what is different in the treatment of OCD versus other anxiety disorders?
Smith: While I am not a clinician, I am someone who has gone through treatment for OCD, and the treatment team at NOCD administers effective, evidence-based therapy. On the contrary, traditional therapy doesn’t teach a person how to respond to their OCD. Talk therapy for OCD often doesn’t work and can even be harmful as it often fails to focus on accepting uncertainty. Talking about compulsions can make symptoms worse by playing into them. Unlike the thought stopping or thought suppression used to treat anxiety, in OCD treatment, attempting to suppress a thought is ineffective. There can’t be one homogenous approach in behavioral health. Evidence-based treatment is essential.
McMahon: Can you tell us about the NOCD platform and how it works?
Smith: NOCD is a platform that is a hybrid of tech and touch. It includes live face-to-face sessions with a specialist who provides ERP therapy. It integrates self-help tools for managing between sessions and is provided in a way that better fits one’s lifestyle and is more effective and affordable.
To explain ERP briefly, it teaches one to purposely trigger OCD fears, then instead of engaging in a compulsive act, one is instead taught to accept uncertainty. The specialist will create exercises for the individual and teach them how to respond to those fears. It’s important to have tools to help along the way in between therapy sessions.
McMahon: Considering the evidence-based approach of ERP, do you have trouble finding providers who are properly trained to work with OCD?
Smith: Yes, most providers are not specially trained, so what we do is bring in licensed therapists, and we train and supervise them. We’re fortunate that our clinical leadership team has a combined total of about 100 years of experience with ERP, so we’ve assembled a very experienced group. We have been able to train and supervise in a scalable way.
McMahon: Can you tell us a bit more about OCD and how it’s understood clinically? Is it correct that OCD is understood as a chronic disease? That the goal is not necessarily to be cured, but the goal is symptom management – prioritizing an individual’s functional ability and personal goals. Can you tell us more about that and how the NOCD platform helps?
Smith: OCD is chronic. It can’t be cured, but it can be managed. It’s also important to understand that everyone has intrusive thoughts, but most people can ignore them. For those with OCD, they cannot. They think the thoughts have meaning behind them and analyze them over and over, developing compulsions to deal with them. The goal of treatment is learning how to manage the fears. It’s about learning to live a life while continuously dealing with uncertainty.
The goal at NOCD is to help people manage during stressful periods, knowing that it can ebb and flow. We employ a step-down model where we front load treatment at the beginning as the person learns how to manage symptoms. Slowly, they self-manage with less clinical time and more use of the tools in NOCD. It starts at 80 percent touch and 20 percent technology, and ends up vice versa as the individual is relying more on the technology for support with self-management and less on the direct clinical care.
McMahon: How does someone seeking treatment get to NOCD?
Smith: The issue is that most people don’t access care for OCD for 14-17 years, and the health system doesn’t know when people need help because they don’t report intrusive thoughts due to stigma. For example, a mother with postpartum OCD won’t share with her PCP that she has intrusive thoughts about harming her children. So, she reports anxiety or depression instead of postpartum OCD, which effects 3-5 percent of new mothers.
What we do is meet people where they are most comfortable, which is online. We create content and communities so people feel understood, and we establish innovative partnerships, such as our partnership with Tridiuum, so we can identify people earlier on to make them feel understood.
McMahon: How is NOCD evolving to meet the needs of the ever-changing health care industry? Or, my suspicion, is NOCD helping to make that change?
Smith: I would say we are. Our number one value is members first. Every decision we make is for our members. As a virtual provider, it’s easy to wonder what’s best for us, but what NOCD does is go deeper to offer more complex care and increase access, affordability, and convenience.
We will be offering additional and more robust services. People can have co-morbidities that sometimes benefit from OCD treatment, but for about 5 percent of our members, blocking comorbidities can prevent them from engaging in OCD treatment. This cohort needs more services to be successful. We are expanding our models to reach people faster by partnering with payers in different ways as well. The goal is to provide effective and affordable treatment to everyone who needs it regardless of location and ability to pay.
McMahon: I love that NOCD is so value-driven and member-centric. What NOCD accomplishments are you most proud of, and what would you like to make sure readers take away from our discussion?
Smith: I’m most proud of the growth the team has made to solve this problem. We were initially laughed out of presentations. It was confusing. No one thought we could really change the system. We found a workaround through creativity and perseverance. We have a real opportunity to solve this problem through commitment to our members, our therapists, and to each other. We grew exponentially prior to COVID, and now we’re growing even more as our team has stepped up to the plate. It’s been all hands on deck, and I am so proud of our team.
We’ve had members report that before NOCD they suffered for decades, some over 50 years, and this is the first time they had mental peace. These are the life-changing moments that keep us inspired and doing what we do.
Learn more about how Tridiuum and NOCD are partnering to identify more patients with OCD, diagnose them correctly, and get them to the most appropriate level of care faster.