So, You Finally Got an OCD Diagnosis- Now What?
Maybe the signs were flashing neon, and everyone missed them. Maybe you’ve fought for this diagnosis for years. Maybe it hit you like a ton of bricks out of nowhere, and now you’re not sure what to do next. No matter the situation, I’m guessing you’re feeling two things at once: relief because there is finally a name for what’s been plaguing your mind and a quiet fear of, what if this never gets better?
Let’s talk about it.
My OCD Diagnosis Story
I was one of those cases where the signs were flashing everywhere, and yet nobody caught them. Around age five, I started feeling like things were not normal in my brain. I had bedtime routines that had to be followed otherwise I couldn’t sleep, I had terrifying intrusive thoughts of family members dying, heck I wasn’t able to eat chicken for about a year out of the fear that it would be contaminated and would give me salmonella.
My family was on top of it, I was in therapy starting at five-years-old, the signs were there, and nobody caught them. It wasn’t until I was 28 experiencing the worst OCD spiral of my life and was finally a therapist myself that I was finally able to fight for my diagnosis.
What came after was life changing.
First: the diagnosis doesn't change who you are
A talk I usually have with my clients who first get diagnosed with OCD is the following- OCD is just a clue. It’s kind of like you’ve been walking around with a broken leg all along, but have been taking Pepto Bismol to try to heal it. No wonder therapy hasn’t been working, you had the wrong diagnosis. Unfortunately this is all too common- it takes the average person 14-17 years to get a diagnosis of OCD, despite it being one of the top ten most debilitating disorders. A lot of times I get the “client scorned” on my couch. The one who has been to countless therapists and they’re worse off than when they started (clue here- average talk therapy makes OCD worse- more on this later.) When you’re misdiagnosed, again, it’s the wrong treatment for symptoms that just needed a diagnosis the whole time. Hey, at the end of the day it’s just an insurance code that has a label slapped on it- right? Wrong.
What I will say is this- you are the same person you were before the label, there’s just now a phrase to describe your symptoms, and that’s the first step to finding treatment. That, my friend, is the first step to healing and using a cast instead of Pepto ;).
OCD is a cycle- it consists of intrusive thoughts, images and urges that feel like they must be solved. Your brain follows up by freaking the heck out and making you do something to solve that feeling- this is followed by some short relief until it shows back up, but with a louder alarm.
This cycle existed long before there was a name to it, now you get to actually do something about it.
The diagnosis is not the finish line
A lot of people feel as if their diagnosis is a mystery that has finally solved, hold the applause- it’s usually the starting line. Because… once you know its OCD, the question becomes: now what do I do with this?
The short of the long: OCD is treatable. However, I’m a long-winded kinda gal and you’re here for some education, so let’s get into it.
OCD has multiple modalities of evidence-based treatment. The most researched gold standard of treatment for OCD is Exposure Response Prevention, otherwise known as ERP. In plain terms, ERP basically retrains your brain to sit with the obsession in a way that is less maladaptive for your brain. There are other options as well such as ICBT (Inference-Based Cognitive Behavioral Therapy), which looks at the core reasoning behind the doubts as well as the fears that are underneath. ACT (Acceptance and Commitment Therapy) works to accept the thoughts as thoughts and live according to your values rather than what the intrusive thoughts are telling you. Finally, there are medication options as well as TMS (Transcranial Magnetic Stimulation), which works with magnetic pulses to stimulate nerve cells associated with OCD.
Needless to say, you have options, this is treatable.
This is all different from traditional talk therapy. Remember how I said more on this later? Later is now- let’s talk about it. While talking about thoughts, feelings, fears etc can all feel very cathartic, it can turn into a compulsion called reassurance-seeking. To an untrained eye- it may look like a client who is just trying to figure out the OCD brain. To someone who works with OCD often, this is the fuel on the fire that burns through the OCD cycle. This is why it matters to work with someone trained in spotting and treating OCD!
Your brain may try to make the diagnosis a new obsession
Now- this is the part that not a lot of people speak about. From what we know about OCD, it LOVES the idea of certainty. A diagnosis serves as a shiny new object to be the target of said certainty- or uncertainty.
In fact, you may find yourself Googling or consulting the ever-knowing oracle of ChatGPT at 1 am asking “do I really have OCD”. This is where I’ll introduce you to my favorite OCD theme, Meta OCD- aka OCD about having OCD. Because… why wouldn’t the Doubting Disorder create more doubt? It’s low hanging fruit! Too freaking easy.
I want you to notice this pattern- it’s the same cycle wearing a new outfit. The content often changes, but the mechanism, the cycle does not. If it quacks like OCD, it walks like OCD, it’s probably, you guessed it! OCD.
You don't have to figure it all out today
Here’s the thing, you don’t owe anyone anything. There’s no timeline to OCD other than the one you make for yourself. You don’t have to become the leading expert in OCD, you don’t need to start treatment tomorrow, and you can decide what you want to do with this diagnosis and the treatment that comes with it. You have free will! Imagine that.
What helps a lot of individuals is simply starting to notice their cycle in real time. How their intrusive thoughts show up, where the urges to fix said thoughts apply and where the temporary relief reveals itself. Watching this pattern is the first step of learning where to apply the skills when the time does come to seek therapy.
I am, however a bit biased- I will say that these patterns did not happen over night. It is likely that you’ve been living with them for a while, and they haven’t been working out well for you, have they? So, why not try something different?
Where to go from here
If you suspect that you have OCD, are newly diagnosed or haven’t been evaluated, an OCD therapist is the place to start.
If your OCD shows up in your relationship, the doubting, the checking, or the "what if I don't really love them" spiral is running your life, I made a free workbook for exactly that. It's called When Love Feels Like a Question, and you can grab it below.
Getting a diagnosis can feel like being handed a label you never asked for. However, it's also the first piece of accurate information your brain has had in a long time. What you do with it is yours.
Please note this is not therapy or a diagnosis and is for educational purposes only.
