Copyright Joliet, IL Patch
As OCD Awareness Month comes to an end, specialists dispel myths around the misunderstood disorder. GARDEN CITY, NY – Obsessive Compulsive Disorder has been misdiagnosed and misunderstood for a long time, specialists said. With the surge in mental health awareness and reduced stigma, more people are coming forward to receive proper treatment, but there is still more work to be done in educating the public on OCD, specialists said. Licensed Clinical Social Worker Stacy Pellettieri has been in the field since 1997 and is the owner and founder of Long Island Counseling, with five locations across Long Island. “So many people have OCD,” Pellettieri said. “More people are coming to therapy, but a lot of the people that are coming in for treatment don't actually know that they have OCD. It could create an enormous amount of torment that makes it so difficult for the person to function in their everyday life.” OCD can be debilitating, and can make someone feel like they are in a cycle of mental torment — with some examples being constant checking, repeating actions, intrusive thoughts, and more, specialists said. “OCD is so common, and there are so many scary thoughts that can come with OCD, or thoughts that feel embarrassing or shameful,” she said. “It is perfectly human to have crazy, scary, and weird thoughts. We all have them. The difference is that some people can just ignore those thoughts, and other people feed those thoughts and give them power. Don’t be afraid to walk into your therapist’s office and tell them what thoughts you’re really having because we’re not here to judge. We’re here to help you understand yourself and guide you into really being in a healthier place.” Anthony Pinto, Ph.D. is senior director of the Northwell Health OCD Center at Zucker Hillside Hospital on Long Island, associate professor of psychiatry at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, and a licensed psychologist since 2013. WHAT IS OCD? OCD is defined by NIMH as a disorder marked by uncontrollable and recurring thoughts (obsessions), repetitive and excessive behaviors (compulsions), or both. It is a condition of anxiety and fear. In order to meet the diagnosis, Dr. Pinto said, “the individual will present with a preoccupation with intrusive or unwanted thoughts, and these thoughts typically have to do with fears about safety or uncertainty. One example is fear of being a bad person, feeling hyper-responsible for other people, so guilt can be tied into it.” He added: “It has this unwanted thought content, which is one component, and the other piece is that they engage in ritualized, repetitive behaviors in order to try to alleviate the anxiety or remove the anxiety related to their thoughts. So the two components are obsessions, which is the fear-thought-content, and the compulsions, which are how the person tries to manage that anxiety.” The compulsive piece of OCD could be behaviors such as washing, checking, repeating, going in and out of a door, and sitting up and down in a chair — but they can also be mental, such as reviewing something over and over again in your head, he said. Furthermore, Pellettieri said there is a cycle at play with OCD. “It’s about being able to say, ‘yeah, that’s just a thought’ and not giving it any merit.” She added: “Constant cycle of obsessive thinking followed by some sort of compulsive act, and that act would be checking or reassurance seeking,” she said. “‘Let me go back and make sure I did that right, or let me check my work. It’s a thought, then the compulsion, then leads back to the thought, so we’re completing this loop by giving into compulsions, by checking, by reassuring.” “That's the thing about OCD. It sticks to something, and then if you resolve it, it just goes and sticks itself to something else. One of the most common forms of OCD is thought ruminations.” Experts offered examples: "If I thought I hit somebody while driving, I might be reviewing the details over and over, or I could engage in checking by walking around the car and physically examining it,” Dr. Pinto said. “Or I could also try to reassure myself that I didn’t do anything bad. These obsessions produce anxiety, and then the compulsions are detrimental ways the person tries to reduce anxiety and they become really powerful habits that the person then engages in. So it’s a cycle. The more a person engages in the compulsions, the more they have to keep engaging in them in order to feel okay, and that’s the sad part about OCD, experts said. Some compared it to a snowball rolling down the side of a mountain, one that ends up getting bigger and bigger. OCD takes up more and more of a person's life, to the point where in very severe cases, the person could become completely disabled. "They could avoid situations that might trigger the feared thought content, and that avoidance ends up making your world smaller," Pinto said. Pellettieri gave another example: If someone with OCD thinks they left the stove on and they go back to check, multiple times, they are essentially giving in to the loop, she said. “The brain processes the thought, ‘What if I did this wrong?’ and now you’re in your emotional brain and having a response. Your breathing quickens, your heart rate goes up, you are pumping adrenaline. So then you go and do the checking and the reassuring, which is a compulsion, or maybe you have a family member reassure you and give in to it." She added: You are telling your brain to take this thought, this obsessive thought, and mark it as urgent. You are marking it as important and valid. This is something I need to check and worry about, and the only way to feel safe is to double-check. You check and now you feel better, safe, and your body goes back to your brain and says 'See, this was important to check’ and then you just rewired your brain to think your worrisome, obsessive thoughts are real and important and the compulsion needs to be done in order to be safe.” Instead, the goal is to train the brain to recognize that thoughts are just thoughts, Pelletieri said. "Not every thought is urgent. Some are just thoughts. We want the brain to decipher between what an obsessive thought is and what a real concern is. We want to be able to sit with, and tolerate, discomfort, and be able to regulate ourselves out of that fight or flight. We do not want to give in to a compulsion that just solidifies the obsession. We do not want to give the obsession strength or power. We do not want to feed it. We want to train our brains to realize thoughts are just thoughts, and not reality. Every time we do not give in to this checking and reassurance, we are creating new neural pathways in our brain. These thoughts might still come up for a person, but they’re not going to feel as triggering." WHY GET TREATED? No one should have to live with the mental anguish of OCD, specialists said. “OCD takes up a lot of a person's time, and so when you get treated, you get that time back,” Dr. Pinto said. “You reclaim your life, and you're able to then move toward all the things that you have wanted.” Dr. Pinto was a clinical researcher early in his career, and he worked on a study that showed on average, people with OCD first received treatment more than 17 years after they initially experienced OCD symptoms, and 11 years after they met the diagnostic criteria. “In other words, that’s a huge problem,” he said. "People are then living and suffering with OCD for a long period of time. That was 20 years ago, and I don’t have the data to back this up now, but I can tell you, anecdotally here at the center, that we’re seeing more and more young people who are college-aged coming in saying they are experiencing OCD." Dr. Pinto said advocacy and public education are so important. “It’s good news that people are aware of OCD sooner and seeking treatment sooner,” he said. “Over these last years since COVID, I think there's been a lot of attention to mental health.” MYTHS People hear OCD and think maybe the person is afraid of germs or their house is neat and everything's in order, but that’s not always the case, Pellettieri said. “I think a myth that is important to talk about that is very common is harm OCD,” she said. “A lot of people have these obsessive thoughts about harming themselves. ‘What if I close my eyes while I'm driving?’ or ‘What if, while I'm sitting on the balcony, I just lose control of myself and jump off?'" And so, he said, a lot of people go to therapy. "Clinicians who are not well-versed in OCD won't recognize that this is an OCD loop, and they'll think the patient has suicidal ideation, even though they don't. OCD doesn't always have to come with rituals.” Dr. Pinto shared that there are many stereotypes surrounding OCD, especially in the media, including constant hand washing, which could be a component of OCD, but the issue is far more complex, he said. He explained how using the word ‘OCD’ in common language incorrectly is harmful. “Unfortunately, it's often used as an adjective, like where people say, ‘I'm so OCD,’ and it's really misused,” he said. “In those examples where someone is saying 'he or she ‘is so OCD,' they're really describing personality traits about being meticulous, overly thorough, maybe perfectionistic, orderly, and those are personality traits that could be linked to OCPD. He continued: “OCD manifests in a lot of different ways, including taboo, unwanted thoughts about aggression, sexual themes, and religious themes.” People who are suffering from taboo-related thoughts might get mislabeled as someone who would hurt another or be attracted to a child, with obsessive thoughts like 'What if I’m a pedophile?'" he said. “Those can be mischaracterized and can actually be very harmful to people.” SUCCESS STORY: Pellettieri shared a success story of one of her clients with OCD. He had religious OCD, where he had an obsessive need to pray and to pray in the right way, or he would be punished if he didn’t. “It had become so debilitating that he lost his job because he couldn't leave the house in the morning until he prayed right, so he would get stuck in this prayer loop,” she said. “And so through treatment, a combination of trauma treatment and exposure therapy, we were able to really work through childhood trauma around control.” There are different treatments for each client, but this person in particular worked through long-term trauma and ERP therapy. “Through the exposure, we were able to get him comfortable with the discomfort of not saying the prayer the right way, and he was able to go back to work,” she said. “And you know, he was back at work full time, and he ended up getting engaged.” Sometimes, it isn’t just an internal battle, and people with OCD look to loved ones for reassurance. HOW TO HELP A LOVED ONE: Aside from encouraging seeking support from a trained professional, specialists said there are ways to help a loved one, which would be not to feed into the OCD. “Sit with and co-regulate with that person,” she said. Someone with OCD may look to their loved ones as a way to seek comfort from the people in their lives, and those loved ones may want to give them the reassurance that they’re seeking in order to make them feel better, specialists said. She listed some phrases you can say when a loved one is suffering during an OCD spike instead of giving in to the OCD, whether as a reassurance, checking, or avoidance: “I know it is really hard.” “Uncertainty can be scary, but that doesn't mean that something bad is happening or that something is wrong.” “Let's do it together.” “Let's breathe together.” “Let's do some mindful meditation together.” “Let's put our hands under cold water.” “Let's go for a walk.” “Let's count all the birds that we see.” “Let's look at all the different trees that are outside.” “Let's find five different colors in the room.” “Let's bring ourselves present right now at this moment.” “Everything is okay, we're safe, we're here.” “That's how you help your family members with OCD, not by reassuring and checking and giving into the compulsions, but by instead sitting with a discomfort of uncertainty and helping them regulate,” she said. “Don’t complete the loop. Challenge their thoughts.” Dr. Pinto said there is a concept called family accommodation, that when people are in so much distress, the family members end up becoming a part of the disorder and end up doing compulsions, either with or for the individual. “OCD impacts the family in addition to the individual,” he said. “In severe cases, the family is very much intimately involved in the disorder, He said aside from not accommodating the person’s OCD, the best way for family members to support their loved one is to get educated about the treatments and encourage them to work with a professional. And, he said, the goal is not to accommodate the person’s OCD. RESOURCES: Therapy services, such as ERP, CBT, DBT. Medication management, such as SSRIs. Northwell Health OCD Center at Zucker Hillside Hospital Long Island Counseling Call or text ‘988’ for the suicide hotline International OCD Foundation website Various podcasts, such as the OCD Stories or the OCD Family Podcast. Digital apps, such as NOCD. Podcasts can give individuals a sense of what it’s like to go through treatment and how their lives can significantly improve, and support is also offered for family members, Dr. Pinto said. The Northwell Health OCD Center offers both psychological and psychiatric treatments, and different forms of therapy as well, including behavioral (ERP), individual, group, and more. They also offer medication for OCD. Pellettieri said her center provides various forms of therapy, including individual, family, and couples counseling. They offer ERP, CBT, and other forms of therapy. “Everyone’s timeline is so different,” she said. “I say to my patients all the time, ‘This might be scary, so let's do it scared.’ We want to be able to tolerate what is hard, but we're going to do that at our own pace. However long it takes — a few months, a few years — it doesn't matter, because you're doing it at your pace, and that's why it's going to be effective. So just honor yourself for going. Honor the journey.”
