article title drawn in pink against a dark blue and white striped background

Living with Obsessive-Compulsive Disorder (OCD)

The trigger warning: OCD, mention of the concept of harm, mention of the concept of suicide, drawn against a pink & white striped background
Created by Jennah DuBois

TW: OCD, mention of the concept of harm, mention of the concept of suicide.

I got so scared today. It’s been a while since I got that scared. Fear, for me, is something that sits in the corner and waits for its perfect moment to appear and hold my heart & mind hostage– every day. If you have Obsessive Compulsive Disorder you probably know what I’m talking about. 

If you don’t have OCD, you may know the disease only as someone who’s super clean or does everything in threes. While those may be characteristic compulsions for some, OCD can present itself in a wide variety of ways, focus on a wide variety of things, and affect more people than what you may be used to seeing in the media. 

Today, we’re gonna go through the basics of OCD, what it’s like living with OCD after ERP therapy, and how to find the proper treatment for OCD. 

Before we get started, here’s a quick disclaimer: I’m not a licensed therapist and while Rachel Wright IS, she is not trained in ERP & does not specifically treat OCD. However, it’s estimated that 2.2 million adults in the U.S. have OCD with the large majority of them experiencing the onset of symptoms in childhood but not being diagnosed until early adulthood, according to the Anxiety & Depression Association of America. Not only do many people get diagnosed much later than the onset of their symptoms,  but many people are often misdiagnosed first– A 2015 study estimated that OCD has about a 50% misdiagnosis rate, which can be extremely harmful and debilitating to the individual with OCD– That’s a lot of people, a lot of misdiagnosed people, and a lot of rampant misinformation.

What is OCD?

Usually, I’m pretty good at quelling fear when it shifts toward me. In the way that you have to when you have harm OCD– safely expose yourself to the fear, feel the anxiety and terror it creates without doing anything about it other than allowing yourself to feel it until your fear-friend sitting in the corner, gets bored and scootches back into its normal spot. 

But today it bubbled too much, too quickly. It stood up and sat on my lap and told me that all I could do was breathe (barely) while my worst fear in the world was happening right now– then when that worst fear didn’t happen right then, it told me that it would happen at any moment.

That’s what harm OCD feels like. But what is harm OCD? What actually is OCD?
The phrase, Obsessive-Compulsive disorder is characterized by a harmful, consuming, cycle of "obsessions" and "compulsions" drawn agasint a white background with a large blue dot.
Created by Jennah DuBois

Obsessive-Compulsive Disorder is characterized by a harmful, consuming cycle of “obsessions” and “compulsions”​​. 

Obsessions are “unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings,” according to the International OCD Foundation (IOCDF). Think of this like a really intense daydream of your worst fears happening that you didn’t ask for or purposefully conjure! That’s what an obsession can feel like! 

We don’t know for sure why the brain sends this unwanted signal– but the general consensus is that there’s a miscommunication that occurs between the frontal structure of the brain and deeper structures of the brain.

I once had it explained to me that the part of my brain that filters my brains’ creative center allows some things through to my consciousness that is shouldn’t because it’s trying to help keep me safe. For example, if I’m in a crowded, public space– my creative center might conjure up the idea of an attack happening and because there’s always some sort of percentage of possibility of that happening, my filter says “oh girl you gotta know about this right now.. What if this happens?.” — That’s an intrusive thought. 

The phrase: compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease his or her distress drawn against a white background with a dark blue circle
Created by Jennah DuBois

Compulsions “are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease his or her distress.” (again from the IOCDF). This is what most people think of when they think of OCD because it’s what they can (sometimes) see

If we use the example above, then a compulsion could look like planning what I would do if an attack happened over and over again in my mind until I feel like I’d survive. This is just one example of one type of compulsion. There are many different types of compulsions ranging in very logical and relevant to extremely illogical and irrelevant. 

The 2 most important things to note here: 
The phrase: s are illogical so trying to convince them of that won’t do anything but make them feel misunderstood, drawn against a white background with a large pink circle.
Created by Jennah DuBois

1. Humans with OCD know that their compulsions are illogical so trying to convince them of that won’t do anything but make them feel misunderstood– we know. The reason we do them is because our brain has told us that just like the possibility (no matter how slight) of our obsession happening, there’s still a teeny, tiny possibility that the compulsion might work. And because there’s even the slightest possibility we do it. Think of it this way: What would you do to keep your loved ones alive & well? Anything right? Even if it was ridiculous? That’s what my own brain tells me– that there’s a ridiculous, small possibility that making sure my towel is in the perfect spot will have a butterfly effect & keep my loved ones alive. So I did it.. Just in case. 

The phrase, Compulsions are actually a really small part of OCD and some people don’t actually engage in physical compulsions or have stopped engaging in compulsions altogether but are still in a lot of distress, drawn against a white background with a large blue cirlce.
Created by Jennah DuBois

2. Compulsions are actually a really small part of OCD and some people don’t actually engage in physical compulsions or have stopped engaging in compulsions altogether but are still in a lot of distress. 

Types of OCD

So, today I got scared. I sobbed and I screamed and I cried and I stayed so, so, still. 

Then.. when fear smiled and started to slink back to its corner– self-righteous and happy with its’ work, I had to pick back up the pieces of myself, put them back in the spots where they normally belong and give myself a chance to feel distracted and calm.

No matter what compulsions a person may or may not engage in to “help” their fear, it’s the obsessions that are the real kicker to this disease. A lot of people will refer to OCD as a “bully” because it feels like the brain really does pick & choose your absolute worst & deepest fears to bring to the forefront of your mind. It shows you how that fear might take shape, what it would look like, smell like, feel like, BE like. It makes those obsessions as unique as the individual experiencing them– so how can there be different types of OCD? 

Just like how society, our environments, and biology all shape what we like & dislike– those three things can also shape our fears or taboos! So sometimes those fears & taboos that turn into obsessions can almost all fall into the same category! 

The phrase, harm OCD is a subtype of OCD that means the person usually experiences obsessions that cer around harm happening to those they love or themselves by anyone or anything, drawn against a white background with a large pink circle.
Created by Jennah DuBois

For example, I usually say that I have Harm OCD. This is a subtype of OCD that means the person usually experiences obsession that centers around harm happening to those they love or themselves by anyone or anything. 

The phrase, other types of OCD: Symetry OCD, "Just Right" OCD, Relationship OCD, Contamination OCD, Taboo types: sexuality OCD, Pedophilia OCD, Suicide OCD, & pure-o OCD.
Created by Jennah DuBois- not all-inclusive of OCD Types
However, there are all different subtypes of OCD!

Other common types are Symytry OCD, “Just Right” OCD, Relationship OCD, and the classic Contamination OCD. Some more “taboo” but non-the-less common types are Sexuality OCD, Pedophilia OCD, Suicide OCD, & Pure-O OCD (pure-o is a murkier subtype where there are no physical compulsions and the individual mostly has either mental compulsions, or none at all). Some people will clearly fall into one of these categories, some won’t perfectly fit any of them, and some will jump between them. 

For example, I think I started out somewhere at the intersection of “Just Right” OCD & Harm OCD. I remember as a kid, like for as long as I can remember, each night after my mom tucked me into bed I would have to repeat the same prayer over & over again until it felt “right” in order to make sure my mom wouldn’t die in the middle of the night. At my worst, my Harm OCD seemed to grow into Suicide OCD. 

The phrase, OCD obsessions are ego-dystonic- which is just a fancy way of saying that the obsessions a person experiences are the opposite of what they want, drawn against a white background with a large pink circle and highlighting the word opposite.
Created by Jennah DuBois

I know that’s A LOT to hear.. And can sound so scary– and it was. I was terrified. But if you take anything away from this I want it to be this: OCD obsessions are Ego-Dystonic– which is just a fancy way of saying that the obsessions a person experiences are the exact opposite of what they WANT. This is an important distinction. It’s the difference between suicidal thoughts or ideation and suicide OCD. The Suicide OCD humans’ worst fear is hurting themselves– that’s the last thing on earth they ever want to do; They’re afraid they’re going to against their own will. Humans with OCD are terrified their obsessions mean they actually, deep down want these things to happen or to do these things— THAT IS NOT TRUE. So please, whatever you do, do NOT reinforce this idea in a human with OCD. It’s completely inaccurate and can be extremely detrimental to their health & wellbeing. 

What CAN you do if you or someone you know has OCD?

Exposure & Response Prevention Therapy  

My experience today has happened before and it used to happen much more often. But as I’ve worked through exposure and response prevention therapy a couple of times and am in the process of healing other pieces of myself that didn’t get as much love as my OCD has… it has been a very very very long time since it bubbled over that far. 

In fact, one of the reasons I feel I’m able to, safely, partake in other forms of therapy is because my OCD symptoms and the impact they’ve had on my life has been so much lower & easier to cope with then any other time in my life. This is purely attributed to my commitment to my two experiences in Exposure & Response Prevention Therapy– commonly referred to as ERP. 

ERP is a very specific type of Cognitive Behavior Therapy and the most effective treatment of OCD. Medication can also be a great help & a useful tool for an OCD-specializing psychiatrist & therapist team.  

Basically, ERP is about safely working with your therapist to expose yourself to the fears your obsessions focus on and work to sit with the anxieties they drum up without engaging at all with the obsession (P.S. engaging with an obsession isn’t always limited to an obvious compulsion– engagement can look like asking for reassurance that your loved one is really okay over & over, or avoiding thinking of trigger words). 

Working with a therapist who specializes in ERP & OCD to do this is really important because they can help you start with small and ramp up over time AND help you come up with some fun creative ways to expose yourself to your fears! Plus In my experience, getting to do some semi-fun exposures really helps your morale when your therapy is literally facing your deepest darkest fears 24/7– And your therapist can help you do this in a SAFE way.

Okay, but why ERP– why can’t I just do any other type of therapy or see any other kind of therapist?

NOCD- An organization that is working to make ERP more accessible through their app (it’s similar to Talkspace only more niche) and a service that I used for my second time going through ERP therapy (I’m a big fan NOCD) explains why it’s so important to seek this type of therapy out, specifically, extremely well: 

“A cognitive approach- traditional CBT, for example- asks patients to challenge their obsessions. This can actually reinforce the belief that thoughts are significant and that we’re morally responsible for the content of our thought. Although cognitive interventions can be useful in many ways, recent studies comparing ERP and CBT suggest that ERP is more effective specifically for OCD. 

Any behavior that engages with the obsession- e.g. asking for reassurance, avoidance, rumination- reinforces it.

By preventing these behaviors, ERP teaches people that they can tolerate their distress without turning to compulsions. It thereby drains obsessions of their power.” 

In other words, if you’re not seeing a therapist specifically trained in OCD & ERP, they could be accidentally feeding your OCD instead of helping it get better. Even if, in the moment, you feel better. The accompanying anxiety will always come back twice-fold– It’s cliche but we’ve gotta face our fears, OCD babes, and it’s not gonna be super comfy while we do it but it’s the only way to really get better in the long run. 

Which I do. I can’t tell you how much my life has changed since participating in ERP therapy & therapy in general. I’ve learned so much. I’ve found how much beauty & power there is in knowing that while I have a, sometimes debilitating, lifelong mental illness, that “illness” literally shouts from the rooftops that the one thing I value most in this life is myself & my loved ones and that I have to capacity to love them and myself deeper than I ever thought possible. 

Living with OCD After ERP Therapy

This knowledge and love and hope that has come with learning ERP & practicing it for myself after therapy also comes with learning how to give myself grace and show myself kindness for what the bad days look like– because they’re not pretty. 

They’re raw and hard and scary and they happen. The bad days will happen. OCD isn’t curable. So those bad days will happen and they’ll hurt and I’ll be just as scared. And, what’s more, no matter how rare, every time I’ve had an OCD attack post-therapy, I end up feeling sad for the rest of the day. I couldn’t figure that out today– why I feel so sad and so much shame around having an attack. 

One of the ways I commonly cope with this post-attack sadness and shame is writing.  

Here’s what I wrote after my OCD attack today: 

“All day today I’ve felt terrible. Sad and sick and still a little scared. No more panic though. But instead, the panic is replaced with shame. Shame, that sometimes my own mind pushes me off a fear-cliff in the name of keeping me safe and sane. But really it just makes me think that everyone would think I’m just actually insane. Mentally ill. Crazy. 

And that was my immediate thought after I panicked today…. That if anyone saw this part of me they would never want to be anywhere near me. 

That when I act like this, when my brain does this to me and I react this way, when I panic like that– I’m unlovable– because who would willingly, chose to sit with someone through this storm? This total personification of fear and defeat. 

I would. Because I know what it’s like. Because I’ve been there and have wished that someone would just be there with me through it. Someone who wouldn’t run and hide or shame and doubt when confronted with such intense, honest emotion.  Just sit with me and know. 

And maybe because I would… maybe that also means that there are people out there who would too. People who are willing to sit through the crazy and fire and agony and panic and fear until our brains can calm… until our fear-friends get bored or want a break. And we can remember that our worst feels are possible but maybe not happening right now.” 

How therapy is currently helping me: 

Like I said, the bad days are rough & raw. And since writing this I told my therapist how I always end up feeling this way after an OCD attack. She gave me the best advice. 

We’d been working on recognizing when I have a trauma response and how I might cope. And she told me that my post-attack experience sounds quite a bit like a trauma response and that, just like my other trauma responses, I could create a toolkit for how I can take care of myself and be kind to myself afterward. 

This idea may not work for everyone, we all have unique things that will best help us healthily cope but I think the point I want to make with sharing that is– ERP is important and powerful and helpful. And OCD is lifelong, so there’s going to be some sort of OCD effect on our lives after ERP. Which is something we don’t really talk about…. How OCD & ERP effects us after working through those heavier, distressing moments. Just because OCD is less distressing & I know how to utilize ERP in my life, doesn’t mean that either won’t ever affect me again and I’ll be able to cope perfectly every time. Giving yourself the grace to experience the bad days and then learning how to forgive yourself, be kind to all your messy edges, not judge yourself, and just in-general remember that humans just ARE messy can be just as powerful & important as taking that initial first step in getting OCD help.  

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