Demystifying OCD: Reducing Stigma and Raising Awareness
Oct 14, 2024 By Kelly Dunn, LCPC
Obsessive-Compulsive Disorder (OCD) is often misunderstood, minimized, or misrepresented. While many people associate OCD with being “a neat freak” or “perfectionist,” as it is often portrayed in the media, the reality of this mental health condition is far more complex and serious. OCD affects approximately 1-3% of youths and 1-2% of adults globally. According to the World Health Organization, OCD is ranked among the top 10 leading causes of disability in terms of years lived with disability globally for individuals aged 15-49 (World Health Organization, 2019).
In spite of the prevalence and seriousness of OCD, the combination of widespread misinformation, stigma and the shortage of providers trained to recognize and appropriately address OCD symptoms has resulted in a failure to adequately recognize and treat OCD symptoms for millions of individuals living with this condition. There is an enduring gap between symptom onset and the accurate diagnosis and delivery of gold-standard therapy for OCD, with recent studies showing an average delay in diagnosis of over 12 years for individuals with symptoms of OCD, and a further delay in delivery of adequate evidence-based treatment (Ziegler et al., 2021).
In honor of OCD Awareness Week, we are seeking to demystify OCD, increase awareness of this condition, reduce stigma, and offer hope and information about effective treatment for those struggling with OCD.
What is Obsessive-Compulsive Disorder (OCD)?
OCD is a chronic mental health condition characterized by two primary symptoms: obsessions and compulsions. Obsessions are intrusive, unwanted thoughts, images, or urges that cause significant anxiety or distress. Compulsions, on the other hand, are repetitive overt behaviors or covert mental rituals that individuals feel driven to perform to reduce the distress caused by the obsessions or to prevent a feared event from occurring. Overt compulsions are visible actions, such as excessive hand washing or repeated checking of locks or appliances. Covert compulsions involve mental acts, such as mentally reviewing past events or silently counting or repeating phrases. Compulsions can become excessive and consume large amounts of time, interfering with daily functioning.
Individuals with OCD often experience particular clusters of symptoms or themes of their obsessions and compulsions, known as OCD subtypes. Here are brief examples of each OCD subtype, highlighting the diverse ways in which OCD can manifest:
Contamination OCD: A person may fear germs or chemicals contaminating their environment, leading them to compulsively wash their hands for hours or avoid touching door handles altogether.
Harm OCD: An individual might have intrusive thoughts about accidentally harming others – for example, an unwelcome mental image of stabbing someone with a kitchen knife – and may avoid using sharp objects to prevent these feared actions from occurring.
Symmetry and Ordering OCD: A person may feel intense discomfort when objects are not perfectly aligned or symmetrical, leading them to spend hours rearranging items on their desk until they feel “just right.”
Religious or Scrupulosity OCD: Someone may experience obsessive fears of committing sins or offending their moral or religious beliefs, leading to compulsive praying or confessing, even for trivial matters and in excess of what is required within their religion.
Sexual or “Taboo” OCD: A person might experience intrusive, distressing sexual thoughts or images (e.g., about inappropriate or taboo subjects), leading them to avoid certain situations or seek constant reassurance about their morality.
Relationship OCD: Individuals may obsess about whether they truly love their partner or if their partner loves them, leading to compulsive questioning or seeking reassurance about the relationship’s viability. They may struggle to tolerate any small doubt or uncertainty about their partner or relationship.
Existential OCD: A person may become consumed by thoughts about the meaning of life, reality, or the universe, spending hours ruminating over questions that have no clear answers and feeling deeply unsettled by their inability to resolve them.
Though OCD symptoms may emerge at various points in development, there appear to be certain developmental periods that confer increased risk for the emergence of OCD symptoms. Symptoms of early-onset OCD, sometimes called juvenile OCD, are most likely to appear when children are between 8-11 years old, whereas adult-onset OCD tends to emerge in the transition to adulthood, around age 21. Research has also revealed developmental differences in both subtypes of OCD and severity of symptoms across development. OCD symptoms and the level of associated clinical impairment often worsen with age, highlighting the need for early intervention (Ferrell et al., 2006).
Perinatal OCD
The perinatal period is another time of heightened risk for onset or exacerbation of OCD symptoms. Perinatal OCD is a type of OCD that involves the emergence or exacerbation of obsessive-compulsive symptoms during pregnancy or after childbirth. Perinatal OCD is present in 2-3% of all birthing people, though recent studies suggest this number may be higher. Rates of perinatal OCD are higher amongst those who had an OCD diagnosis prior to giving birth (International OCD Foundation). This condition is often overlooked because it can be confused with other postpartum mental health issues, such as postpartum depression or anxiety, but it has distinct features that set it apart.
Just like general OCD, perinatal OCD involves a cycle of obsessions and compulsions. A defining characteristic of perinatal OCD is the presence of distressing, intrusive thoughts centered around harm coming to the newborn. These thoughts may include fears of accidentally or intentionally harming the baby, contamination concerns, or fears of the baby getting hurt in other ways. These thoughts cause significant distress and are unwanted. Importantly, those with perinatal OCD are not at increased risk of harming their babies, as these thoughts are ego-dystonic, meaning they go against the person’s true desires and provoke distress.
The combination of intrusive thoughts and compulsive behaviors can interfere with bonding with the newborn. Parent’s may avoid certain activities, such as bathing or feeding, due to fears of harming the baby. This can negatively impact the parent-child relationship and overall well-being.
The Impact of OCD on Daily Life
Living with OCD can be debilitating. The intrusive thoughts and the compulsions that follow can consume hours of an individual’s day, disrupting their ability to work, maintain relationships, or engage in leisure activities. For example, someone with OCD might spend hours performing rituals to the point where they are late or unable to attend work. Others may avoid public spaces or social situations altogether, leading to social isolation and deteriorating relationships.
Beyond the emotional and psychological toll, people living with OCD often experience intense shame or embarrassment about their symptoms, which may cause them to hide their behaviors or avoid seeking treatment. Unfortunately, this can contribute to a delayed diagnosis, which prolongs suffering and complicates treatment.
Evidence-Based Treatments for OCD
The good news is that OCD is highly treatable. The most effective, evidence-based treatment for OCD is Cognitive Behavioral Therapy (CBT), specifically a form of CBT called Exposure and Response Prevention (ERP). ERP works by exposing individuals to situations or thoughts that trigger their obsessions while preventing them from engaging in the associated compulsive behavior(s). Over time, this process leads to new learning, helps to reduce the anxiety caused by obsessions, and breaks the cycle of compulsive behaviors. For example, someone who fears contamination may be guided through exposure exercises in which they touch “contaminated” surfaces without engaging in their ritualized cleaning behaviors, leading to increased awareness that their feared catastrophic outcome is unlikely to occur and that they can learn to tolerate the presence of uncertainty around feared outcomes.
Medication is also considered a first line treatment for OCD and is prescribed by a Medical Doctor, such as a Psychiatrist. Selective serotonin reuptake inhibitors (SSRIs), a class of antidepressants, are commonly prescribed to help reduce the intensity and frequency of obsessive thoughts, as well as diminish the compulsive urge to respond to these thoughts. By alleviating the emotional distress linked to obsessions, medications can make it easier for individuals to engage in therapy and manage their symptoms more effectively.
In addition to traditional treatments such as ERP and medication, a newer approach known as Inference-Based Cognitive Behavioral Therapy (I-CBT) is showing promise in treating OCD. I-CBT is based on the premise that OCD stems from faulty reasoning processes, specifically a type of thinking called “inferential confusion.” This occurs when individuals misinterpret situations and make irrational inferences that lead to obsessions. Instead of focusing on exposure to anxiety-inducing stimuli, I-CBT helps individuals challenge and correct the faulty reasoning behind their obsessions. Research suggests that I-CBT may be particularly helpful for individuals whose OCD is less responsive to traditional ERP methods, offering another effective treatment option for this complex disorder (Nezlek et al., 2022).
Finally, there is also an effective parent-focused intervention called Supportive Parenting for Anxious Childhood Emotions (SPACE), which addresses childhood anxiety disorders, including OCD, through intervention on parental behaviors that may maintain or exacerbate a child’s OCD symptoms. Through the SPACE program, parents learn to increase effective support, decrease accommodation of OCD symptoms, encourage their child’s independence, and improve family dynamics, all while maintaining a loving, supportive relationship with the child.
Reducing Stigma and Encouraging Treatment
OCD is often misunderstood, and individuals with this disorder may face significant stigma, further isolating them from support. Reducing stigma starts with education. It is important to recognize that OCD is not about being overly organized or quirky; it is a serious mental health condition that often causes intense suffering, and we must learn to approach it with compassion and understanding.
OCD Awareness Week is a time to raise our collective understanding of this disorder and dispel common myths. OCD is a complex condition that deeply affects the lives of those who experience it. There is also plenty of cause for hope: we have excellent, gold-standard interventions that are highly effective in treating OCD. By educating ourselves and others, we can help create a world in which those living with OCD are met with accurate information, effective support, and hope for a better future.
References
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Farrell, L., Barrett, P., & Piacentini, J. (2006). Obsessive–compulsive disorder across the developmental trajectory: clinical correlates in children, adolescents and adults. Behaviour Change, 23(2), 103-120.
Franklin, M. E., & Foa, E. B. (2011). Cognitive-behavioral therapy for obsessive-compulsive disorder: Efficacy and evidence-based treatment. Psychiatric Clinics of North America, 34(3), 543-557.
International OCD Foundation. (n.d.). What is perinatal OCD? International OCD Foundation. Retrieved October 12, 2024, from https://iocdf.org/perinatal-ocd/what-is-perinatal-ocd/
Koran, L. M., Hanna, G. L., Hollander, E., Nestadt, G., & Simpson, H. B. (2007). Practice guideline for the treatment of patients with obsessive-compulsive disorder. American Journal of Psychiatry, 164(7), 5-53.
McGuire, J. F., Piacentini, J., Lewin, A. B., et al. (2015). A meta-analysis of cognitive behavior therapy and medication for child and adolescent obsessive-compulsive disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 54(1), 29-36.
Nezlek, J. B., O’Connor, K., & Aardema, F. (2022). Inference-based therapy for obsessive-compulsive disorder: A meta-analysis of treatment outcomes. Journal of Obsessive-Compulsive and Related Disorders, 32, 100705.
Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15(1), 53-63.
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Ziegler, S., Bednasch, K., Baldofski, S., & Rummel-Kluge, C. (2021). Long durations from symptom onset to diagnosis and from diagnosis to treatment in obsessive-compulsive disorder: A retrospective self-report study. PloS one, 16(12), e0261169.
