Obsessive compulsive disorder - OCD treatment and therapy from NOCD

Unspeakable Thoughts: Barriers to OCD Diagnosis and Treatment

By Grant Stoddard

Jun 12, 20237 minute read

Reviewed byPatrick McGrath, PhD

The tragedy of Obsessive-Compulsive Disorder (OCD) is not its prevalence, even though it affects an estimated 1 in 40 adults worldwide. Nor is it the absence of life-changing therapy: a specific and highly effective treatment has existed for decades. It’s that the inherent difficulties of connecting millions of sufferers with proper care are manifestly avoidable. 

Though it was first described in 1877 and has been an “official” diagnosis since 1980, OCD is still often misunderstood by the general public who think of OCD as a preoccupation with cleanliness, symmetry, or order. Even people with OCD may not know they have OCD if their OCD does not conform to the above areas.

While contamination, symmetry, and “just right” OCD can and do impair daily functioning for millions worldwide, millions more are inundated with obsessions that seem so taboo that they dare not discuss them with their primary care doctor or a mental healthcare provider. And if they don’t recognize violent or sexually intrusive thoughts as OCD in the first place—which is often the case—they’re highly unlikely to realize that they are ego-dystonic, or directly opposed to their core values and beliefs. 

An unfamiliarity with the condition’s signs and symptoms—which, as we’ll see, extends to physicians and even mental healthcare providers—is why OCD is one of the most commonly misdiagnosed mental disorders. It’s also why, on average, over a decade separates the onset of symptoms and treatment. 

A lengthy delay in care for a debilitating mental disorder is problematic in and of itself. And, if OCD is misdiagnosed as another condition and therefore the wrong treatment is provided to someone with OCD, the symptoms can worsen with dire complications. Rates of suicide among people with untreated or mistreated OCD are high, with more than a third (36%) of OCD patients having suicidal thoughts and over one in ten (11%) attempting suicide.  

While the current situation is indeed dismaying, the way forward is clear: we need to increase familiarity with OCD among physicians and mental healthcare providers so that they engender trust with patients and allow them to share their taboo, ego-dystonic thoughts while identifying them as alien from themselves. 

Not only will fostering this environment increase the likelihood of an accurate diagnosis and life-changing treatment for the individual, but in the aggregate, the proper identification of the disorder will give insurers the data they need to expand coverage and increase access to exposure and response prevention therapy (ERP). With ERP, the overwhelming majority of people with the disorder are able to regain control of their lives, often in a matter of weeks. 

Taboo thoughts, delayed treatment

Intrusive thoughts that are violent, sexual, or pertain to intimate relationships are among those least likely to be shared with a doctor or mental healthcare provider. This is often due to the feelings of shame and guilt these thoughts provoke, but they may also fear that sharing them could mean losing their job, breaking up with their romantic partners, having their children taken away, or even being incarcerated. 

The less they share these disquieting thoughts, the lower the likelihood they will receive an accurate diagnosis and help. If they can’t get help, the consequences can be dire, as we’ve discussed. The following are examples of intrusive thoughts that tend to be the hardest for people to share. Your increased familiarity with them will profoundly affect people with untreated OCD, their friends, and their families. 

Relationship Intrusive Thoughts

Relationship OCD (ROCD) is typified by unwanted and distressing thoughts, doubts, or fears surrounding romantic relationships. These intrusive thoughts can include things like:   

  • Is my partner good enough for me?
  • Am I good enough for my partner? 
  • Am I in love with my partner?
  • Is it okay that I found someone else attractive? Does it mean that this relationship isn’t meant to be?
  • Do I need to leave or divorce my partner?
  • What if I’m with the wrong partner? 
  • What if I made the wrong choice and I’m stuck with this person forever?

People experiencing these obsessions may be reluctant to share them with a provider because they fear being misunderstood, judged, or seen as overly possessive or insecure. They may worry about their relationship being perceived as unhealthy or abnormal. They might even think that disclosing these thoughts—even to a provider—could somehow bring their relationship to an end. 

Sexual Intrusive Thoughts

Intrusive sexual thoughts are unwanted and distressing thoughts, urges, and images that are sexually explicit and wildly taboo, causing significant anxiety and guilt. Here are a few examples of sexual intrusive thoughts someone with OCD may be experiencing: 

  • Have I recently done something sexually inappropriate?
  • If I look at that person, does that mean I want to have sex with them?
  • If I pass a woman on the street, could I touch her inappropriately?
  • Even though I am gay, what if I am actually straight and just do not know it?
  • Am I capable of molesting a baby if someone asks me to change the baby’s diaper?
  • What if I’m a different gender and don’t know it yet?
  • Have my past actions or thoughts sexually harmed another person?

People with these obsessions may hesitate to share them with their doctor for fear of being labeled deviant or immoral, leading to social stigma or misunderstanding. Additionally, individuals may mistakenly believe that these thoughts reflect their true desires or that they pose a threat to themselves or others. 

Violent intrusive thoughts

Violent intrusive thoughts are most often associated with the Harm OCD subtype. They’re distressing and unwanted thoughts, images, or urges involving harm or violence towards oneself or others. Here are a few examples: 

  • What if my violent thoughts reflect my true nature?
  • Could I push someone onto the subway tracks while waiting for a train? 
  • Do I have an urge to hurt myself or others?
  • Am I capable of stabbing my boyfriend the next time we argue? 
  • What if I become violent and can’t stop myself?
  • Am I secretly a dangerous person?
  • Could I lose control and commit a violent act?

Someone experiencing these obsessions may not want to disclose them due to fear of judgment, stigma, or being perceived as a threat. The fear of being labeled dangerous can create a barrier to seeking help.

How commonly is OCD misdiagnosed?

A large body of evidence shows how frequently primary healthcare providers misdiagnose OCD. This is partly attributable to the symptoms of OCD bearing similarities to other mental health disorders, such as depression, generalized anxiety disorder (GAD), or attention-deficit/hyperactivity disorder (ADHD), particularly when patients fail to disclose the nature of taboo intrusive thoughts.  

Like the general public, most physicians are more likely to associate OCD with contamination and symmetry obsessions than with obsessions considered more taboo. This is borne out by a 2015 study study that asked 208 physicians in the greater New York City area to make diagnoses based on vignettes associated with various OCD subtypes. The study’s authors found that, while OCD symptoms were misdiagnosed about half (50.5%) of the time overall, misidentification rates fluctuated dramatically depending on subtype—the more taboo, the more likely the misidentification.

Misidentification rates around contamination and symmetry were relatively low at 32.3% and 3.7%, respectively. Misidentification rates were much higher for obsessions and compulsions related to homosexuality (84.6%), aggression (80.0%), saying certain things (73.9%), pedophilia (70.8%), somatic concerns (40.0%), and religion (37.5%). However, a more recent a more recent study conducted in 17 different Latin American countries found similarly high rates of OCD misdiagnosis among a cohort of psychologists, neuropsychologists, psychiatrists, and family therapists. Researchers expanded on the previous study by looking into which disorders and various OCD subtypes were most often misidentified as. 

They found that 12% of vignettes related to scrupulosity/religious OCD were misidentified as a personality disorder, 15% of those related to aggression/harm OCD were incorrectly deemed to be anxiety disorder, while more than a third (37%) of vignettes related to sexual OCD obsessions were mistaken for paraphilic disorder.   

Change starts with therapists like you

As we’ve seen, there’s an urgent need for mental healthcare providers to demonstrate empathy and understanding for people with OCD and to teach them that their intrusive thoughts—including those that are sexual or violent—are symptoms of a serious condition and do not reflect their true intentions, values, or identity. Your greater familiarity with this incredibly nuanced and misunderstood disorder will make people feel more comfortable sharing their obsessions, facilitating accurate diagnosis and effective treatment. 

There are several ways you can make a difference today for the OCD community, including people currently in your care. If you’re working with a patient who may be in need of specialty treatment for OCD, you can refer a patient to us directly by filling out a brief form. We accept most commercial insurance plans, offer evidence-based OCD treatment, and usually have availability within 7 days. And if you’re accepting new patients, we encourage you to join the NOCD referral directory to help people with OCD access the additional care they may need while they’re in ERP therapy.

By learning how to recognize OCD, the many ways its symptoms can present, how it’s treated, and where to go for effective care, providers can break down historical barriers to treatment and help people overcome this widely misunderstood and often debilitating condition.

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