I wouldn’t wish suffering with OCD on my worst enemy. For those of you who don’t quite understand what OCD feels like, allow me to explain with a scenario:
Imagine you just took a final exam that will determine your ability to graduate college. You wait apprehensively for days and then finally receive a notification that your results are available to be viewed in your student portal. You rush to your computer, pull up the email with your student portal link, and you’re asked to enter your password to view the results. However, no matter how many times you type your password, the one that you have used daily for the past four years, you keep getting an “invalid password” response.
How can this be? You try everything possible to solve the problem: going through a “forgot password” flow in your student portal, calling the school, and even emailing your teacher, but nothing works. The only solution you have is to wait a few days to get your results from your teacher at school in person, since she’s been unresponsive. How anxious would this experience make you?
Now, imagine if the question was infinitely more intense and disturbing: are you really a sexually deviant monster that will need to isolate from society for the rest of your life? Although the fear that sparks the question is the polar opposite of your character and is logically baseless, for some strange reason, it feels like it might be real. It’s also a completely new phenomenon; in the past, you have trusted your gut or leaned on logic, but now you can’t tell if they’re leading you astray. If the fear is real and you are really a monster, then the consequences will be life-shattering. Your spouse will leave you. You’ll never be able to see your kids again. Your family will want nothing to do with you. Your career will be over. You’ll lose your house. Everything positive in your life would disappear instantly.
Unlike driving to your school as a last resort to learn about the result of your final exam, no solution exists to get 100% certainty about the answer to your taboo question. The more you try to disprove your fear, the more doubt you feel, and the more your distress rises. You don’t want to be a sexual deviant, and you don’t want to lose happiness. The distress pushes you to the edge and you finally decide to seek help from a therapist who takes your insurance, not knowing what else to do.
After searching online for therapists nearby, you finally find one with availability who accepts your insurance, located only 10 minutes away. She hears your story and says, “Oh, don’t worry. You are a good person, and you would never do that. I believe the chaos you are experiencing is generalized anxiety.” The relief you feel in the moment is profound, and it feels like a mountain is lifted from your shoulders. You leave the conversation feeling elated, and as a result, you race home to enjoy an evening with newfound mental peace.
But, while on your way home, the questions begin to spiral again as you find a few holes in your therapist’s logic. The questions don’t stop until you see your therapist again a week later—during your session, she reconfirms that you are a good person. You try even harder to rely on her assurance, but the thoughts and distress come back even stronger: “What if I’m not a good person?” This cycle of intrusive fears, mounting distress, and reassurance from your therapist continue nonstop for two years, until you lose your job due to the strain. With it, you lose your insurance coverage, and you can’t afford to see your therapist anymore.
Eventually, you hit rock bottom. Your thoughts never come true, and you never behave in a sexually inappropriate manner in the slightest with anyone. In fact, you avoid every situation involving people you fear you could harm; you shut people out of your life due to fear. Your world gets smaller and smaller.
The worst-case outcomes you once feared due to your thoughts become reality due to your inability to function normally. Your marriage is in limbo. You struggle to take care of your kids. You have no way to pay for your house, since you have no money or energy to find another job due to the constant distress you’re feeling. Your family can’t understand what has happened and why you can’t snap out of it, causing them to pull away from you more and more.
Because you can’t afford to see your therapist anymore—the one person who constantly would reassure you that you aren’t a monster—you begin asking Google the same questions. All of a sudden, you stumble upon an article that highlights symptoms of obsessive-compulsive disorder (OCD). You’re confused: isn’t OCD just a word used to describe someone who’s particular or who excessively washes their hands?
The more you learn about OCD, the more you can relate. It’s exactly what you’ve gone through—the sticky, sometimes taboo fears that run against your identity and values, coupled with the urge to do anything possible to make them stop. Then, the questions in your brain shift to treatment. How does the vicious cycle end? How do people with OCD regain their lives?
In bold font on the screen, you learn the only way to get better is to stop doing the actions that you do to relieve your momentary distress, both physical and mental, such as reassuring yourself or asking others for reassurance. You think of the in-network therapist you saw for two years, who had good intentions but spent most of the time reassuring you that your fears were invalid and you were a good person.
You then connect the dots: By focusing the sessions on giving reassurance, the therapist from the past two years offered treatment that wasn’t just ineffective, but was actually harmful. Instead of comprehensively identifying all of your symptoms, the therapist just assumed you were suffering with anxiety and treated you accordingly, not realizing that standard talk therapy and thought-stopping treatment for anxiety is often damaging to people suffering with OCD.
You feel an overwhelming sense of frustration. It’s now abundantly clear that the constant mental anguish you’ve felt and the collapse of your personal life could have been prevented. Your therapist should have simply identified your symptoms as OCD and referred you to a specialist in the evidence-based treatment you read about called exposure and response prevention (ERP) therapy. Your suffering isn’t your fault—you were failed by the mental healthcare system.
The mental healthcare system today is structurally flawed. It doesn’t properly identify the most severe conditions people experience, preventing many from receiving evidence-based treatment services that could significantly reduce their suffering.
The OCD community has felt the brunt of the mental healthcare system’s inadequacy, and the story I presented is not an outlier. Many people with OCD are misdiagnosed and incorrectly treated by several licensed providers before understanding what they’re going through, and they usually only receive effective treatment 14-17 years after they started experiencing symptoms.
That’s one of the main reasons why people with OCD are 10x more likely to die by suicide, and why nearly 1 in 3 people with OCD struggle with substance use disorders (SUD)—double the rate of the general population. Seeing how devastating the wrong treatment can be for someone with OCD, it is dangerous and negligent for licensed behavioral health professionals to offer treatment services without first running a comprehensive diagnostic assessment, regardless of their intent.
Now, however, there are flashes of hope for the OCD community, and I believe the future is bright. With the growth of NOCD Therapy, my team and I have seen many health insurance companies step up to the plate to make needed changes within their behavioral health networks. Today, 2 in 3 Americans with commercial insurance can access NOCD Therapy using their health plan benefits, whereas even just 5 years ago, health insurers rarely had any ERP specialists in their network.
More positive changes can be made to fix the broken mental healthcare system, especially when it comes to identifying people with OCD and other serious mental illnesses (SMI) who are suffering in silence, but it will take major change from providers. Particularly, providers must deeply understand the dangers of misdiagnosing and providing harmful treatment for OCD, and policies must be implemented to hold providers accountable for not running comprehensive assessments. The combination of education and accountability can drive change.
If you’d like to get involved in transforming the mental healthcare system alongside our team, please don’t hesitate to reach out to me directly. My email is stephen@nocdhelp.com.
Additionally, if you think you may have OCD and need treatment before participating in advocacy work, please don’t hesitate to book a free 15-minute call with our care team. On the call, we’ll assist you in either getting started with a licensed therapist at NOCD who has specialty training in OCD and ERP, or connect you to other resources that might be helpful.
It will take a persistent effort to improve the way the mental healthcare treatment system functions, especially for people with OCD, but it’s possible. Let’s end the unnecessary suffering of people struggling against the system to make positive structural changes.
