Nobody understands OCD and I'm tired.

And I owe everything to those who do.

When I was 14, I became sick.

If I had known at the time that this sickness was going to last for almost a decade, and in small ways for the rest of my life, I don’t think I would be here today.

I was 14 when my world turned upside down in a way I wouldn’t be able to define (or diagnose) for four years. I suddenly couldn’t go to a museum without looking at every single piece.

I become tormented by the fear that I was somehow a danger to animals, which anyone who knows me knows are my one true love in this life.

I sat down on a bench next to one of my classmates and our shoulders touched, convincing me for years that I was a pervert and a sicko.

I would check my pockets over and over again after leaving a store, consumed by the guilt of having shoplifted even though part of me knew I didn’t (I wouldn’t do that, right?) but the other part of me just had to check. Which didn’t help at all, by the way.

So I checked some more.

When I was 16, I wanted to be gone (again). I couldn’t look at anyone without my brain trying to decide if I was attracted to them or not in a desperate bid to figure out my sexuality. Every. Single. Person. I. Saw.

I couldn’t get away from the noise, from the “Am I gay?” quizzes, from the paragraphs on paragraphs in my Notes app writing down every time I’ve ever been attracted to someone in my life and trying to piece together all the “evidence” and figure out what it all meant.

I still lived in fear of being a bad dog owner, haunted by how fragile my dogs were and battered with thoughts telling me I was evil and was going to try to snap their arms in half so I must stay away from them entirely even though I loved them more than anything.

When I was 19, I wrote 500 letters by hand to voters in swing states urging them to get us out of the Trump hellscape during Covid-19. I lay every letter down on different surfaces in my basement and sprayed them with Lysol.

I let it dry, flipped them all over, and sprayed the other sides.

I sprayed the envelopes before I dropped them in the mailbox. If I touched a toilet paper roll or towel in the bathroom with a dirty hand, I Lysoled those too.

Then I researched for hours on whether using a towel or toilet paper square with disinfectant on it can turn someone sterile, and not in the germ sense. It wasn’t OCD, it was just being safe, right? These were unprecedented times, after all.

When I was 20, I dropped a semester of college to do an intensive outpatient program for my obsessive compulsive disorder. During early recovery I would drive the same path over and over, convinced I had run someone over and killed them and somehow not realized it.

I spent hours researching car accidents in my area – and all of the surrounding towns because best to be thorough, yeah? – to try to find out if a pile up on the highway was my fault and I somehow didn’t notice it at the time. Hey, it could happen. That’s what OCD told me.

OCD will tell you that if something could conceivably happen, it either definitely did or definitely will.

Later in recovery, it didn’t feel like I got my life back, it felt like I got a life. For the first time. So many years spent shrouded in darkness turned agony into home. That’s another thing – after being sick for so long, sadness and despair felt so safe.

I was scared of happiness because I knew it was fleeting and unfamiliar, far from the loving arms of depression. I knew that at my core, I was a sad, hopeless person and I would always come back to that.

I don’t anymore.

I didn’t know, before my IOP program, what it was like to have a mind that isn’t constantly buzzing telling you what a bad person you are, convincing you your irresponsibility or negligence has killed someone, or that you are a danger to others just waiting to be provoked.

This is obsessive compulsive disorder.

It’s not just when you like things to be organized. It’s not just when you’re high strung. It’s not just when you like color coding.

It’s debilitating, being stuck in an echo chamber of your greatest fears and nightmares, constantly feeling as though on the verge of becoming them. Carrying the weight of crimes you did not commit, but feeling the soul-sucking guilt all the same.

Do you want to know the worst thing I have ever done? I’ll tell you.

I went on a few dates with a girl my senior year of college. After things ended, I became so convinced that she was in danger or that I caused her to become sick that I physically could not stop texting her to make sure she was okay. She blocked me, and I totally get why.

And then I sent an apology letter on email (I know. I know.) with links to information about OCD, not hoping to save the relationship which has been shattered beyond repair, but hoping at the very least she would understand I’m not crazy, I’m sick.

I am so ashamed of this. Because I wasn’t missing her, I wasn’t trying to mend things, I wasn’t trying to keep her from moving on; I was simply terrified something I’d done would render her unsafe and in danger.

No one without an understanding of OCD would be able to comprehend this, but my brain was convincing me if I didn’t check on her, she could die or cause someone else to die and then it would be my fault.

But that doesn’t matter, because the actions of constant texting and then sending an apology after being blocked tell a different story. I was the bad guy, the creep. It doesn’t matter my intentions, it matters that I did what I did.

This moment still haunts me, and remains my biggest regret in life. But I share it to show you that OCD can drive you to do things that you would never otherwise do, things no rational person would do, in hopes of getting some relief from the fear and anxiety, some confirmation that your worst fears aren’t true.

I’m not crazy, I’m sick.

But I felt crazy. I felt crazy for years, to be honest. I remember a professor once saying that the definition of insanity is repeating the same exact behavior expecting a different outcome. This confirmed my suspicions.

After all, what is a compulsion but a repetition of the same behavior expecting a different outcome?

Today, at 23, I am mostly free. But it didn’t come easy, and it didn’t come without a cost.

9 years of therapy.

Tens of thousands of dollars on medications, outpatient programs, and psychiatrists.

Relationships strained to the point of being about to snap.

Relationships that did snap and break into a thousand pieces because at that point to know me was to know nothing but fear, anxiety, and crisis.

For a long time OCD looked like hurting myself to prove to myself that I was alive, as if that somehow maybe that gave me some inherent value as a human being, but feeling sick about the fact that I did it anyway. But it’s a double-edged sword, isn’t it? I could be a danger to myself. In some ways I was, prompting the question:

How can you possibly believe that you aren’t a danger to everybody else as well?

You probably are. Best to play it safe and not spend time with them at all.

OCD is this thought process, in different fonts and manifestations, until you have nothing left. Nothing except a brain on fire, but every time you pour water on it, it burns even hotter. Because the nice thing about OCD is that all the things that make you feel better in the short term actually make you sicker in the long term.

Every time you check, you are teaching your brain that when you’re anxious, you need to do a compulsion. You’re conditioning yourself to need more, and more, and more, until every second of every day is spent checking something.

That’s what I wish people would understand.

Not just that OCD can be about any theme, not just hygiene and germs.

Not just that for a lot of people, compulsions are invisible because they are happening mentally.

Not just that mainstream talk therapy and mental health advice does not apply to OCD and will actually make it worse.

Not just that the WHO ranks OCD as among the 10 most debilitating conditions a person can have.

But that OCD, left unchecked, will kill you. Not literally, but it will take away everything that makes a life, a life. Isn’t that a death of its own?

I know that a lot of this doesn’t make sense. This is the messiest thing I’ve written in a long time and try as I might to edit and revise, it remains messy.

But see, that’s the whole thing: You don’t have to understand any of this. And you might not, because it doesn’t make sense! A lot of it is a direct dichotomy of facts and feelings because OCD is ego-dystonic, meaning it gives you fears that target your values, which is what makes it so scary.

OCD knows how to get a rise out of you, how to hit you where it hurts. (Read as: how to hit you in the way that will make you engage with it.) I don’t always understand OCD either.

It affects my relationships too — with everyone, not just the people I love. Because what would they think if they knew what I think about? What would anyone think? What do I think, and why do I think it, and why can’t I stop?

Ah, that’s right. It’s the disorder! Not me, the disorder. But the separation between the two is about as solid as that of church and state in today’s political climate.

It is difficult for me to adequately express how sick I was when I am not sick now. And yeah, I have my moments. For example, I confessed to my (now ex) boyfriend in distress because I smiled at someone and became convinced that counted as cheating, and later that a thousand other benign things like noticing a customer’s haircut or complimenting a friend were indicators that I am a liar and a cheater. But exposure and response prevention (ERP) therapy gave me the tools to save myself, and I still use them when I have moments of struggle. For most of my life, though, my life wasn’t even mine.

It belonged to the sickness.

But would I trade it for anything else in the world?

Yes. I would.

Sorry if you thought that was going to go differently, that I was going to say I am glad I have gone through this because it has made me stronger. OCD didn’t make me stronger. Clomipramine, ERP, and my mom did.

Would I wish it on my worst enemy? That’s a different question.

Get this: the answer is the same! I would. That’s another thing I don’t understand. If you say you wouldn’t wish something on your worst enemy I think you’re a) lying, b) haven’t endured much struggle, or c) don’t have enemies.

What do you mean you wouldn’t wish it on your worst enemy? I would! Because I don’t like them!

Anyway.

I don’t say any of this for sympathy, pity, or attention. I don’t like attention, but at the same time I don’t like feeling like no one cares about or sees me, even though the latter is how I felt so heavily growing up.

I would constantly ask my younger sister what my middle name was, just to see if she knew and if I really existed in other people’s minds.

That’s probably why I am still so stunned when people are kind to me or care about me, because I really can’t believe it! And they are – people are so nice to me. I feel so lucky for the friends that I have, and I do feel like I matter now but sometimes I am still taken aback by it, wondering what I did to deserve so much love.

Maybe no one deserves or doesn’t deserve anything, we just get what we get and have to believe it’s what we were meant to receive. Ugh, I didn’t realize that rhymed until I read it back. Maybe that’s meant to be too, except maybe nothing is meant to be, you know?

We’re always trying to ascribe meaning to things and make them important. It’s a tool for survival. Something that makes us feel in control, that makes us feel like we have the answers because when we don’t have that, we’re forced to accept that we are just as insignificant as a beetle on its back. That’s a conversation for another time, and when I originally wrote that analogy I was in a much different place in my life. I’ll leave it in anyway.

This is Substack, the only rule is there are no rules! Let’s all take our tops off! No, I’m kidding. Please keep them on.

Why am I writing this now? The honest answer is some (2) people thought that because I got mono and my ex-boyfriend didn’t means I must have cheated on him. That really got under my skin, because the idea makes me want to laugh from how impossible it is but it also makes me sad because no one who doesn’t understand OCD would understand that.

Don’t they know I freak out and text him immediately if I tell my coworker her outfit looks amazing because I am so convinced that counts as unfaithfulness? I didn’t know how to briefly explain how unlikely me cheating would be given my obsessions about it, because saying “I have OCD” to an audience that thinks OCD just means washing your hands and checking locks is so frustratingly pointless. So this essay, and we’re on page 7, is my attempt at a brief explanation. Which they will never see. So them’s the facts.

But my PR answer to why I am writing this would be:

Most days, I don’t think about OCD anymore. Just saying that makes me want to cry. I feel golden yellow joy rising up in my chest and I feel so, so grateful.

But I also want to cry for how long I suffered, and for how so many people continue to battle this disorder day in and day out.

I want to cry for the people so deep in the tunnel they don’t even know if there’s a light at the end of it.

I want to cry because for some those unable to get help, there might not be. I want to cry for how inaccessible treatment is, and how statistically most people with OCD will likely never receive it.

There is a lot I cannot do, change, or fix about how OCD is represented and treated. But what I can do is share my story, and also be a living example of what is possible even when you have OCD. I graduated from college and got my degree in film & television from the #1 film school in the country. It took me longer than I thought it would, but I fucking did it.

I have beautiful connections with all of our animals (all 14 of them) and I don’t live in fear of being a monster that wants to hurt them.

My relationships with my family and friends are so much deeper, because for a long time they didn’t have a relationship with me, they had a relationship with my sickness.

I got my creative spark back and proved to myself that you don’t have to be suffering to be an artist.

In my last relationship, for the first time there were only two of us rather than the other person, me, and my OCD.

I have many hobbies and interests, and the emotional and mental bandwidth to participate in them.

There is space in my brain. I don’t know how to describe it other than that, but my brain is no longer Shibuya Scramble Crossing. It’s more like… Animal crossing. The video game. Yeah, okay. Sure, my brain feels like that.

If I could have any wish it would be for everyone with a mental illness to get to this point. But since I can’t have any wish, I will just keep being me. A living, breathing example that recovery is possible and beautiful.

More accessible resources I found helpful beyond ERP, therapy, and medication:

1. Freedom from Obsessive Compulsive Disorder by Jonathan Grayson (book)

2. The Self-Compassion Workbook for OCD by Kimberley Quinlan (book)

3. All The Hard Things with Jenna Overbaugh (podcast)

4. NOCD (online accessible therapy and free app)

5. The following Instagram users:

   1. @alegrakastens

   2. @jenna.overbaugh

   3. @recoverocd

   4. @alexandraisobsessed

   5. @treatmyocd

6. And then I’ll also link two YouTube videos I’ve made on the subject: