Flavors.

A non-exhaustive story and list of talking points about the diagnosis I wasn't expecting, but made complete sense.

I’ll just kick this post off right away: I have OCD.

If you’ve been following along for a while or are a close friend/family member of mine IRL, you most likely already know this. I’ve mentioned it here and there in passing since I was diagnosed a few years ago, but I’ve never really dug in on a public-facing platform.

So why write about it now?

Well, first off, it’s OCD Awareness Week, so that felt appropriate. But second, I have a rule I abide by in my writing: Share what feels PERSONAL and PURPOSEFUL, not what feels INTIMATE or IMPULSIVE.

I don’t share the things that feel intimate, and definitely don’t share things without a clear intention. I don’t share things ONLINE that I haven’t already worked through OFFLINE, and if I haven’t worked through it yet, I will share explicitly about not working through it yet. I won’t share anything definitive that I haven’t really defined, and certainly won’t share resources that I can’t yet say whether they help or hurt. And I definitely won’t share anything that the people closest to me — namely, my husband, my parents, my sibling, my best friends — would be surprised or shocked to read because they didn’t already know about it.

Up until a little while ago, OCD fell into the “intimate” bucket, not the “personal” bucket. It felt like something I was still sharing with those closest to me, and something I was still working out my feelings about it. Not my feelings about OCD itself — but my feelings about SHARING it. My friend Serena and I talked about this a few months ago: asking yourself “what purpose does sharing this serve?” when sharing about your own mental health is something I believe strongly in. Mental health can be so delicate, and a thoughtless, purposeless post can do way more harm than good sometimes. That being said, OCD no longer feels intimate, and my sharing of it DOES feel purposeful.

I’m not an OCD expert, nor am I trying to be.

But as much as I sometimes bristle at the word “expert”, I AM a self-talk expert.

As someone who has both firsthand experience with Obsessive Compulsive Disorder AND has spent her entire career studying self-talk, I have a unique perspective on this sometimes sneaky disorder, and why it's so misconstrued.

I am a HUGE advocate for mindset-focused work, which should be obvious because duh, it’s literally the basis of everything I do. But I am very loud in saying that *mindset work* doesn’t solve everything. Sometimes there’s something deeper and more clinical going on, and the responsible thing to do as a professional in the space is to acknowledge that and guide people in a direction that can more specifically serve them. If you encounter any mindset coach that says otherwise, run the other way. Lately, I’ve noticed way too much of that — especially online.

On this mental health awareness holiday, it feels appropriate to share my story here, what I’ve learned, and how OCD differs from what you might have heard about it up until now. Because if you’re reading this, you’re interested in shifting your self-talk. It’s probably how we found each other. And since current stats say that about 1 in 40 adults have or will develop OCD in their lifetimes, there is a chance there is someone reading this out of the thousands of you who subscribe who might have it and not yet know, thinking they simply struggle with some extreme negative self-talk.

My hope is that this can be a jumping-off point for people to either start to explore their own mental health, or help someone else in their life do the same. My hope is this post can help you be proactive with your mental health, and be a better ally and advocate to those who need it. And my hope is that if you’re struggling with seemingly non-stop intrusive thoughts but all the self-talk-shifting in the world doesn’t seem to be helping…you can feel 2% more empowered to start to take steps forward.

So buckle up, this is a *supersized* words-only post (since Substack’s length guidelines will cut me off if I add fun gifs and memes to this post). It’s a long one, but an important one.

I will preface all this with: I am not a clinical psychologist or doctor. This is all based on my own experiences, and my own findings. This is meant to be a tool to help educate and support in ways I wish I’d had long ago. I link out numerous resources in this post, and encourage you to not only click on them but dive into your own research as well.

Here we go…

WAIT, YOU HAVE OCD?

Quick diagnosis story:

A few years ago, I couldn’t figure out what I was so damn tired all the time. I was fully depleted, and there didn’t seem to be any reason for it. Yes, we’d weathered a pandemic, and yes, I was working on a book, but my schedule was pretty clear and life was pretty good. What was making me feel like I was getting slowly dragged by a street-sweeping truck down Sixth Avenue every single day?

When my bloodwork and imaging work all came back normal/clear, I asked my PCP to refer me to a psychiatrist, thinking there could be some underlying mental health issues I was overlooking (i.e. depression).

I was referred to an in-network psychiatrist, who before our meeting sent me what felt like endless questions to answer. I took my time, not wanting to answer anything incorrectly. When I finally met him over Zoom and we started to chat, he asked even more questions. He also pointed out that some of the answers I gave him in that moment didn’t match what I’d filled out on the intake forms. I elaborately explained what I meant and the details of my inner life, not wanting him to miss a beat. I was SURE it was some sort of cocktail of anxiety and depression. I knew those could be sneaky to catch sometimes.

But what I got was a double diagnosis, half of which I wasn't expecting but made complete sense:

Generalized Anxiety, and flavors of OCD.

WHAT IS OCD, REALLY?

According to the National Institute of Mental Health (NIHM), Obsessive-Compulsive Disorder is defined as “a long-lasting disorder in which a person experiences uncontrollable and recurring thoughts (obsessions), engages in repetitive behaviors (compulsions), or both. People with OCD have time-consuming symptoms that can cause significant distress or interfere with daily life.”

The way I personally describe OCD is that it’s a mental health disorder based around “extreme catastrophization.” It’s not just about thinking about something a lot, or doing things repetitively. It’s worries and thoughts that are extremely distressing and can keep you feeling like you’re in a state of emergency (that’s the obsession part) — and behaviors performed to try and “make everything okay” (that’s the compulsion part).

WHAT’S THE DEAL WITH OCD MYTHS?

OCD is considered what’s called “ego-dystonic,” which means that your thoughts and compulsions DON’T line up with who you are and what you value.

This is part of the reason why it’s so infuriating to hear people say things like “I love to organize my drawers, I’m so OCD about it.” People with OCD do not perform their compulsions because they love to do them. It’s because they feel like the compulsions are an absolutely-necessary non-negotiable in order to prevent something bad from happening, or to neutralize a distressing thought (remember the hyper-catastrophization I talked about before?).

Let’s use an example based on a common myth about OCD, which centers around cleaning…

Not OCD: You want to get your house really clean because you love a clean living space, or because clutter just annoys you, or because dust triggers your allergies, or because you have people coming over and enjoy welcoming them into a clean house.

Yes OCD: You want to get your house really clean because germs will contaminate you and lead to a grave illness, or because if you don’t clean your floors every day it means someone you love will die, or because you aren’t worthy if your house isn’t immaculate and you cannot be too sure as to what speck of dust is lurking in the corner that will throw it all off.

Do the things listed in the second set make sense? To someone with OCD, they 100% do. There’s often something very frightening contained in the obsessions, which makes the compulsions seem extremely necessary and justified.

It’s also important to note that compulsions are not the same as how we commonly think of rituals. Just because you light a candle while you’re working or say a prayer before bed does not make those things compulsions. Those are things you enjoy and that add to your experience of life in that moment. But if you’re lighting a candle or saying a prayer before you go to bed to prevent something very bad from happening — something that you’re convinced will happen if you don’t do those things – you might have OCD. Especially if when you forget to light the candle or say the prayer, you’re sent into complete panic mode.

WAIT WAIT. REWIND. TELL ME MORE ABOUT THE… FLAVORS?

OCD is not a one-size-fits-all disorder, which is part of the reason why it can be so hard to pin down without the help of a professional.

When that psychiatrist described my diagnosis as “flavors of OCD,” I thought he meant something more like “hints” or “traces” of OCD. I didn’t understand at first, and though the wording was kind of funny. Flavors? Like, strawberry? Vanilla bean? OCD is a Rocky Road, amiright…

okay, maybe we can throw in ONE gif.

But what I’ve learned is that OCD comes in multiple varieties, because everyone values different things.

They’re called THEMES, or SUBTYPES.

If we’re using the flavors/ice cream analogy: OCD is like ice cream that comes in many different flavors. The commonality is that they’re all ice cream and have the same basic ingredients that MAKE it ice cream. But there are multiple varieties. All Jamoca Almond Fudge is ice cream, but not all ice cream is Jamoca Almond Fudge.

And just like when you’re placing your order at your local Baskin-Robbins for a single scoop, a double scoop, a kiddie size, a multi-scoop sundae, etc…your OCD flavors can exist by themselves or alongside other flavors, at varying sizes.

NOCD does an incredible job of listing out some of the most common OCD themes, which include: Relationship, Contamination, Harm, Existential, Pedophilia, Sexual orientation, Religious, Perfectionism.

All of these themes are OCD, but not all people with OCD will experience all of these themes. There are more, which is why it’s so important to work with a trained OCD doctor/therapist/expert when seeking treatment. This is a great article that describes them in detail.

NEGATIVE SELF-TALK VS. OCD

My work as a self-talk expert has allowed me to spot the difference between my OCD intrusive thoughts and non-OCD negative self-talk/intrusive thoughts pretty quickly. In fact, I was doing this long before I even knew I had OCD.

I describe the difference between negative self-talk and OCD like the difference between being anxious and having a clinically diagnosed Anxiety Disorder: everyone has intrusive thoughts, negative feelings, or self-doubt (similar to how everyone feels anxious at times…sometimes more often than we’d like). But NOT everyone has intrusive thoughts, negative feelings, or self-doubt that repeatedly pops up out of nowhere and substantially affects your actions/quality of life on a daily basis (similar to how having a clinical Anxiety Disorder might prevent you from doing certain things or going certain places, even if you logically want to). You can have lots of negative self-talk without having OCD, but if you have OCD, there’s a very good chance you also have lots of negative self-talk.

Another important note is that negative self-talk typically feels emotional, and intrusive thoughts typically feel factual. And while these are two different things, but they’re definitely linked for many people with OCD. For example, if you have one of the most taboo OCD themes — such as Pedophilia or Harm — your negative self-talk around this theme is most likely YELLING at you with shame, blame, and horror. Your obsession is the theme. Your negative self-talk is the way you feel about it.

Getting an OCD diagnosis was surprising in that I was expecting something different based on my symptoms. However, it made complete sense when I looked at not only my patterns and my past, but my career choice for the last almost-two decades.

If I look at my history with eating disorders, I can see it as primarily compulsory: an attempt to neutralize obsessions. It’s not clear if OCD was the sole cause of my eating disorders per se, but it certainly fanned the flames. Here’s a very helpful article about the ED/OCD connection.

It ALSO makes a ton of sense that in the midst of my own two-steps-forward, one-step-back journey of recovery, I became hyper-curious about the way I was speaking to myself (my “inner voice,” if you will) and how others spoke to themselves as well.

Negative self-talk, I noticed, did not come out of nowhere, and didn’t necessarily go against values. There were usually origin stories or deeper meanings involved — remember, self-talk is neither good or bad, it’s information. They were often based in something I (or someone else) believed, in small part, to be true…but they felt like opinions, not facts.

However, OCD’s intrusive thoughts can often seem to come out of nowhere, and like we discussed, don’t align with values. Those kinds of intrusive thoughts will often feel like facts, not opinions. To over-simplify, I’ll often describe them as feeling like you have the most distressing itch that you feel like you have to scratch OR ELSE YOU WILL BE DISTRESSINGLY ITCHY FOREVER. To use a very literal example, OCD intrusive thoughts that you’re “putting on a ruse” and are actually an “awful human being” might lead you to excessively over-apologize or check emails and texts for wording for hours (or days) in order to neutralize that thought that tells you you’re really a shitty person. You value being a good person, so OCD latches onto the idea that you might be a horrible human deep down and not even realize it.

Another difference: as hard as it might seem to shift your negative self-talk, it’s relatively *easier* to shift than an OCD intrusive thought. If you keep ruminating over the same things or performing the same compulsions over and over no matter how much “mindset” work you do, you might want to get screened by a professional to see if it’s OCD. Because OCD cannot be “shifted” simply by working on your mindset, or even by some commonly otherwise-effective kinds of talk therapy. We’ll get to that in a moment, but all of this is to say: there is a difference.

When I’m coaching clients on their self-talk, I’m always listening carefully for patterns, values, and desires. I’m also listening for repeated extreme thinking and negative self-talk that seems like it’s coming out of nowhere. If I sense these, I have people and organizations I can refer them to that might be able to dig deeper than I have the credentials to do so. Staying in my lane of expertise is a core professional value of mine — when left unchecked this is actually something my OCD will latch onto — and I know from firsthand experience how certain seemingly-helpful tools that work for other instances (like positive affirmations or talking it out) can actually make OCD worse.

WHAT IS OCD TREATMENT LIKE?

Treatment for OCD can look like multiple things: namely, medication and/or specific kinds of therapy, which I’ll discuss in a sec. But first, a little about my own treatment…

When I got my OCD diagnosis, I was also told I was high-functioning — that based on my (very long) intake form and the way I was describing my issues to the psychiatrist, my flavors of OCD weren’t interfering with my life SO much that they warranted immediate action. He even told me that sometimes, for people with high-functioning OCD, the awareness of what’s going on is helpful enough to start moving forward through it. I only have my experience to work off of, but I can tell you this: awareness was enough, until the awareness let me know that awareness WASN’T enough

The final straw that led me to ACTUALLY take action was around the beginning of 2023.

I was in the final stretch of copy edits for my very first book, a goal I’d spent SO long working toward. And it had gotten to the stage it seems authors unanimously loathe: asking for blurbs.

Except I didn’t just loathe it.

I was terrified of it.

I was scared that every email, DM, or text I sent off to someone would either squash my reputation or ruin a friendship forever. And while I say “terrified,” I really want to stress that the feeling didn’t feel like run-of-the-mill fear. It felt like the brink of disaster. That “catastrophization” feeling was kicking in, full-force. (One of my main OCD themes, I later learned, has to do with platonic relationships and goodness of character)

The catastrophization started to spill over into other areas of my life — or maybe it already was there, I just noticed it more because #awareness. I spent hours toiling over whether to take my dog Frankie to daycare or leave her at home if I was going to be out for the day. Some days I’d spend so long trying to decide that I would miss the daycare’s drop-off window entirely and just not end up leaving the house unless I had to. I would worry that if I exercised in the morning that I would throw away precious work hours or miss important deadlines, but if I waited to work out in the afternoon I wouldn’t actually do it and regress into a sedentary life. Of course, this meant that I wasted a lot of time not working AND not working out. Instead, my time was spent trying to weigh which choice was better and more important. The decision fatigue I felt wasn’t about having a plethora of choices or having to make a ton of decisions throughout the day. Literally, one single decision could throw me into intense decision fatigue.

But really, if I’m being honest, the difference that made the difference was the blurbs.

I started to hold back on follow-ups, and then I started to hold back on sending the initial emails/texts/DMs altogether. As we approached the blurb deadline, I started to panic. I realized that I had probably let multiple opportunities pass me by, and only had a short window to reach out or follow up if I wanted to make anything happen (you need to turn in all your endorsements that will be included on the book cover/in the book by a certain date so they can finalize the pages to send off to the printers). My OCD-related fears had led to compulsions of inaction…inaction that I knew, deep down, would continue to spill over into even bigger and more important scenarios if I let it slide here.

And I decided, no effing way.

No way was I going to come this far to only come this far. No way had I spent six years pursuing this goal to stand in my own way as I approached the finish line. I realized that while I’d be sad or hurt if people didn’t like me or like the book, I would be DEVASTATED and ASHAMED if I looked back and realized I did not stand by my own side and advocate for myself during this process.

The internet gets a bad rap, but the second I started to search for OCD resources online, the internet delivered. I started to get suggestions for OCD advocacy-specific Instagram accounts, and began to get more tailored search results in Google. And it wasn’t just the algorithm: now that I was actively looking I somehow saw more material at the ready than I ever had seen before. Podcasts! Blog posts! Organizations! Yes, OCD is widely misunderstood and often misdiagnosed, and/but/also there are so many places out there that GET IT and are there to support you.

I learned that Exposure and Response Prevention (ERP) Therapy is considered the gold standard of OCD treatment, and decided that I wanted to see if it worked for me before I decided to explore any sort of medication (I am very much pro-medication for mental health, for the record).

Through my digging I found a virtual ERP-based therapy platform called NOCD — and they took many forms of insurance, which was huge. I scheduled a call to learn more, where I learned I would go through a pretty thorough screening process before I even began to determine not only if I had OCD to begin with, but if there were any comorbidities presenting, like ADHD for example.

ERP, in simplest terms, is a form of therapy that disrupts the cycle of obsessions and compulsions. It helps you confront your obsessions in a safe and professionally monitored environments, and eventually resist the urge to perform compulsions. Just like OCD, it’s obviously way more complicated than this basic description, so I highly encourage you to read up on it if it’s something you think might work for you or a loved one.

I started working with my therapist via NOCD almost immediately after my initial informational call, and we met extremely regularly. Through our work, we identified and ranked my most common/disruptive themes — most of which I would’ve never been able to identify on my own. In fact, pretty much every specific example I’ve shared in this post was only identified AFTER I started ERP. I would’ve never connected, for example, taking my dog to daycare or leaving her at home as OCD-related. But now it seems so obvious to me. (*It’s important to note right now for legal reasons probably that I have zero affiliation with NOCD…I’m just sharing as a very happy client. There are many practices and practitioners who are trained to treat OCD, this is just where I went.)

Everyone’s ERP journey looks different, but what I loved about it while I was in it is that there are clear success markers. My therapist would regularly give me rigorous evaluations and homework that would clarify what was working and what wasn’t, week after week. The treatment was personal, and one I was able to “graduate” from. The goal, my therapist told me right off the bat, was for me to NOT need to work with her. I loved that. I wanted to know that I’ve got this — not that I needed her in order to feel solid.

Due to a combination of her excellent guidance, my determination, my insurance, and my fairly open schedule which allowed for multiple sessions per week (mostly toward the beginning diagnostic phase, which took multiple sessions on their own), I graduated from ERP right as the book was released out into the world a little over a year ago. I played Pomp and Circumstance over Spotify as we entered our last session together cause that’s my sense of humor, and while I was sad to not get to see my therapist anymore, I was SO proud of the work we’d done together.

Do I still have OCD? Of course I do. But it’s managed, because I have a toolkit that is tailored specifically to OCD. Am I opposed to medication or researching other forms of treatment if it flares up again? Absolutely not. But for now, I feel like I’ve got this, and it’s an amazing feeling.

OK KATIE I LOVED ALL THIS BUT I DON’T HAVE OCD. HOW CAN I BE MORE SENSITIVE TO THOSE WHO ARE STRUGGLING, OR PEOPLE I KNOW WHO HAVE IT?

Some things you can do!

• Find out as much about OCD as you can. This post of mine is a fine start but absolutely not the authority. Some great resources are NAMI, NOCD, and the International OCD Foundation. You can also learn about people’s personal experiences via OCD advocates on social media — all of this will help you understand what your loved ones are going through.

• Nix the use of “OCD” from your vocabulary as anything but actual Obsessive-Compulsive Disorder. OCD is a diagnosis, not an adjective. (just like Bipolar, Schizophrenic, and Multiple Personality Disorder…so fwiw, it’s best to find other words to use to describe how you feel if you find yourself using a mental illness as an adjective)

• Listen with kindness, patience, and compassion. Someone who has OCD might have fears that seem irrational or silly to you, but to them they’re very real.

• …but try to resist giving reassurance. This is a tricky one, and one I learned through my own journey. Seeking reassurance can be a compulsion for many people with OCD. It often doesn’t matter whether the reassurance is emotional or logical, it’s usually a quick fix that can cause the OCD person to want more and keep the OCD alive n’ thriving. Validating someone’s emotional experience vs. offering reassurance can be complex to navigate, so I suggest you look for resources in the platforms listed above to support you in doing this with compassion.

• Challenge stigmas. If you hear or see someone perpetuating OCD myths, trivializing OCD, or making fun of people with OCD, use the opportunity to be an ally and advocate. You’ve read this far, which means we’re now friends, so feel free to tell others “my friend actually has OCD, and here’s what it’s like and why this type of talk is harmful.” Happy to be your friend :)

• Help them feel empowered, not ashamed. Taking charge of this was deeply empowering. WAY moreso than any amount of reassurance I could have ever received from any compulsion. If it feels appropriate, encourage them to talk to a professional, and remind them there are multiple forms of treatment — they deserve to find what works best for them.

THE DIFFERENCE THAT MAKES THE DIFFERENCE

Life after "graduating” from OCD treatment is…well, it’s night and day. The work I did in therapy unquestionably changed my life, my relationships, and how I walk through the world – especially when there’s a decision to be made that means a lot to me. It’s helped me understand that while this is how my brain is wired, I still have a lot of power when it comes to moving forward through it. The time saved ALONE has changed my life. And when I feel myself getting triggered and going into that obsession/compulsion loop, I know how to stop and redirect.

I know this might be weird to say, but love how my brain works — and yes, that now includes the OCD parts too. I don’t always LIKE how my brain works, but now that I have the tools to manage the OCD, I can see how it informs the way walk through the world. I think in great detail, and take great care with my words. I value integrity and pivoting when my impact isn’t in line with my intent. I apologize with my full heart and celebrate with my full heart. I can’t be sure if these aspects of me would exist without my OCD because I don’t know life without that OCD chip in my brain, so I can just assume it’s all somehow related, and I’m grateful for it.

I know so many of us want the quick, digestible bites to work our way out of tough times. This is not that. Treating OCD or ANY mental health disorder is not as simple as an Instagram carousel or click-bait listicle, and it shouldn’t be. This is the sustainable care of your mental health, not a step-by-step guide to enjoying a hobby. It’s complex, but it’s so worth it. Sometimes it just takes a difference to make a difference, and for you to say: no more.

For me, my tipping point was asking for endorsements for the book, and the impending finish line of a long-time goal.

For you, it might be a relationship in your life, or something having to do with work, or something seemingly inconsequential that feels exponentially more consequential than you logically know it should.

Whatever it is, please know that you not only deserve to live as your fullest, most expansive self — your fullest, most expansive self is right there waiting for you to take that first step.

embracing the flavors

P.S. In NYC? Come join me for the final Book Launch Cabaret on Wednesday, October 30th. Get your tickets here!

(and if you’d like to join us from afar, there are also Livestream tickets available here)