Many people living with obsessive-compulsive disorder (OCD) spend several years dealing with an endless loop of intrusive thoughts and compulsions without realizing what’s going on. You may think you have a different issue, or your healthcare provider might have told you it’s an entirely different mental health condition. This kind of mix-up, known as a misdiagnosis, can lead to the wrong form of care and a lot of frustration.
If this sounds familiar to you, you’re not alone.
In this article, we’ll look at why OCD so often gets misdiagnosed and why the right diagnosis (and right kind of treatment) can make a world of difference.
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One study revealed that people with OCD live with their symptoms for almost 13 years before receiving a proper diagnosis. Another study found that family physicians misdiagnosed 50.5% of OCD cases.
Many factors at play lead to the prolonged journey to getting effective treatment, such as OCD being mistaken for other mental health conditions, stereotypes about what the condition “looks like,” and the fact that many symptoms are invisible or difficult to talk about (e.g., thoughts about harm, sexuality, or scrupulosity).
When OCD is misdiagnosed, you don’t get access to evidence-based treatments like exposure and prevention (ERP) therapy, and you continue to struggle with debilitating symptoms that impact your day-to-day life and overall well-being.
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Why OCD is so often misunderstood–even by professionals
OCD is a condition not only misunderstood by the general public but by mental health professionals, too.
Here are a few reasons why:
Clinicians don’t get specific OCD training
Many therapists aren’t receiving the necessary training to identify and treat OCD, explains Patrick McGrath, PhD, NOCD’s Chief Clinical Officer. “OCD would most likely have been included only as part of the general overview of mental health diagnoses, and without a specific lab on it,” he says. “All too often, parts of the training are: ‘Here’s the therapy we do; we apply it to everything, and it should work,’ and that’s not the case [for OCD].”
The stereotypes stick
Because of the gaps in training, many therapists have outdated views of what OCD looks like. Dr. McGrath has heard many therapists say, “Well, I see your house is messy, so you can’t have OCD because people with OCD always have tidy houses.” When therapists think OCD is just about symmetry or contamination, they miss other common themes of OCD, such as fears about harming others, relationship doubts, and intrusive sexual thoughts, explains Dr. McGrath.
These stereotypes exist outside of therapy sessions, too. Many believe the condition is just about germs, cleaning, or organizing. Some even go as far as to say they’re “so OCD,” when they’re just particular or detail-oriented.
If you have OCD, it can be disheartening to hear people dismiss the condition as a personality quirk when you know the reality is much more serious.
OCD can look like other conditions
OCD symptoms often resemble those of other conditions like generalized anxiety disorder (GAD), attention deficit hyperactivity disorder (ADHD), and several personality disorders. That overlap can lead therapists to misinterpret what’s really going on.
It can get even trickier when OCD co-occurs with other conditions. In fact, up to 90% of people with OCD also have another mental health condition.
Co-occurring conditions can cloud the picture
Major depressive disorder (MDD), social phobias, and eating disorders often co-occur with OCD in around half of all cases, and it’s often hard to tell which symptoms belong to what condition. Ultimately, this data misrepresents the prevalence of OCD, and people might get the wrong treatment, or not get any treatment at all.
This kind of flawed data doesn’t just make it harder to diagnose OCD—it also affects what treatment insurance providers will cover. When OCD goes unrecognized, insurers may not approve the care that’s actually effective.
“Until recently, insurers didn’t understand how effective OCD treatment is, because they weren’t seeing OCD come up in their claims data,” says Dr. McGrath. “This disparity meant that people were either not getting any treatment at all, or getting treatment for the wrong thing because they’d been misdiagnosed.”
Why the right diagnosis matters
When OCD is misdiagnosed or missed entirely, it not only delays treatment but can also make daily life more challenging. Intrusive thoughts and compulsive behaviors can disrupt your work, school, relationships, and daily activities.
Having misdiagnosed OCD may also fuel intense guilt and shame, which can impact your self-esteem and potentially lead to isolation from loved ones. Over time, untreated OCD may increase your risk of other conditions, such as depression, anxiety, panic disorder, and substance use disorder.
The good news? Once your OCD is properly identified, you can begin your treatment journey. ERP therapy—the first-line, evidence-based treatment for OCD—can help you get your life back. However, the specialized therapy won’t be offered if providers don’t recognize the symptoms of OCD.
Getting the right diagnosis: What helps
Recognizing the signs of OCD is the first step toward getting the right treatment. “Addressing this misidentification problem allows people to get the help they need,” says Dr. McGrath. “Not only will this prevent so much suffering, it will literally save lives.”
Once OCD is accurately diagnosed, you can get access to ERP therapy. In ERP, a therapist works with you to gradually confront your fears through exercises known as exposures. These exercises are paired with response prevention techniques, which are strategies you use to resist the urge to do the compulsions. Over time, you’ll learn to sit with the discomfort from intrusive thoughts without resorting to compulsive behaviors.
Bottom line
If you’re experiencing symptoms of OCD, but have been told otherwise by healthcare professionals, you’re not alone. Misdiagnosis is common, and what you’re going through is real.
The good news? OCD is treatable. With the proper diagnosis and support, you can break the cycle of intrusive thoughts and compulsions. Take the first step by contacting a therapist specializing in OCD and ERP. They can provide a proper OCD diagnosis and work with you to create a customized treatment plan that can lead to long-term relief.
Key takeaways
- OCD is frequently misdiagnosed, often because the public and mental health professionals misunderstand symptoms.
- OCD symptoms can mimic or overlap with other mental health issues, making diagnosis tricky when co-occurring conditions are present.
- A correct diagnosis is essential to access evidence-based treatment like exposure and response prevention (ERP) therapy, which can dramatically improve quality of life.