I am not here to give you medical advice or diagnose you. But I am here to share my experience as a log for myself and in case it helps you.
I have obsessive compulsive disorder (OCD). It took me a long time to figure this out because I wasn’t doing things like washing my hands a lot. I was mostly just doing stuff inside my head. Someone called it “pure OCD” and I like that term.
The thing about OCD as I understand it is like, you have obsessions and you have compulsions. Obsessions are often described as intrusive thoughts: they are thoughts you don’t try to have but you in fact have repeatedly. They bother you. Obsessions might bother you because they disgust you (“there are germs on me”) or frighten you (“maybe I will fall off the bridge I walk over on my way to work”). Obsessions are thoughts you actually don’t want, you want to get rid of, but they keep coming back. So to try and get rid of the obsessive thoughts you do compulsions: repeated behaviors that are sort of like a ritual to get rid of the bad thoughts.
So you spend a lot of time in the basic loop of
Intrusive/obsessive thought
Negative emotional reaction to the thought, probably with a lot of anxiety/urgency like “I need to get rid of this thought”
Behavior to get rid of the thought
To make it concrete here is a common pattern I experience
Thought about saying something inappropriate (obsession)
Anxiety about actually saying something inappropriate
Conscious thought to try and reassure myself like “I am not that type of person” or “I would never say that” (compulsion)
The thing about OCD is your attempt to reassure yourself (step 3) actually amplifies the fear/anxiety you feel by reinforcing the intrusive thought. So the thought comes back but louder, and you have more fear, you shout louder back at it to go away, and you judge yourself harder. All of a sudden you are in a shouting match with yourself.
When intrusive thoughts are particularly disturbing, this can easily lead to panic attacks because you think the intrusive thought might happen. So if you are worried about saying something inappropriate you will feel like you are on the verge of actually saying it, and your mind will imagine all kinds of negative consequences like social shame and your friends abandoning you, and so on. Our minds are good at anticipating these kinds of negative consequences.
It’s easy to see how this can lead to panic, and it’s also easy to see how people do more and more elaborate things to try to reassure themselves. When I was at my worst last year, I had to like arrange things in my apartment a certain way or I felt unsafe. I remember doing things like getting up several times right before bed to arrange my shoes a certain way to try and make myself feel better. That’s OCD.
For me, the worst part of OCD is the self judgement. If you can’t get rid of a thought that disturbs you, you start to think bad things about yourself as a person. You have a lot of arguments with yourself like “I’m not the person who would say that!” and then “But I keep thinking about saying it, maybe I am that person!” This is a private hell that is completely awful to experience.
what i notice
Before I discuss the type of treatment that actually works for me, I want to make some observations based on my experience with OCD.
First off, professionals were initially reluctant to agree I had OCD. I self diagnosed and ended up being right. How do I know I was right and that I in fact have OCD? Because OCD treatment helped me more than any other type of therapy. If it walks like a duck and talks like a duck, then it’s a duck. Professionals were reluctant to agree with me because I don’t present as super OCD. I’m not washing my hands all the time. I was mostly doing stuff inside my head, countering obsessive thoughts with compulsive thoughts. The one super classic thing I did in retrospect was counting things to reassure myself. It took a couple of therapists who were very used to working with OCD patients to diagnose me properly, and for them the diagnosis was super easy. They were like “yep you have this”.
Second, now that I am living with OCD and doing my best to manage it I see OCD everywhere (note that I am not “fixed”, I am living with it!!! This is a thing you live with not that you “beat”!!!). What I mean by this is that I see a lot of suffering among people I know, and I wonder a lot about if people are struggling with similar things to me. I see a lot of people working very hard to reassure themselves, which I can only assume is in response to well-worn internal fears. I see repeated posts on the same topics saying the same self-soothing reassurances (“I am calm”; “I did the thing”; etc). And to me, it reads like half of my internal OCD monologue. Just an observation, I could be wrong.
what works for me
The first type of therapy I ever did that I would say really worked for me was exposure therapy, or exposure-and-response-prevention (ERP). I did talk therapy at several times in my life including for a year before my brain exploded. All talk therapy did was make me more aware of my obsessive fears and made me feel more helpless to face them.
ERP therapy is kind of shocking. You write down a list of the things that scare you the most. These are fears that, if you are like me, you are reluctant to talk about because you don’t want to admit you have them. But you make a list. You rank them by how scary they are. And then you (with the help of a therapist) find ways to expose yourself to those fears systematically.
If you are scared of saying the wrong thing during a talk, you literally imagine yourself at a talk, saying the wrong thing, and it having the worst consequences you can imagine. You make specific scenarios about like, being ejected from polite society and your family never talking to you again and so on.
And you do this repeatedly. And it raises your anxiety level and it’s really scary. And after doing it for 45 minutes straight you are a little more comfortable with the thing that scares you most in the world. And you do this for weeks, and then that super scary thought is like only mid scary.
You learn not to do the compulsive reassurance, which is weird at first. Because you are just sitting there with this scary thought in your head and it’s rolling around and you are doing nothing to stop it. But after doing this enough and watching this scary thought kick and scream you realize that like, that’s all it does. It just yells for awhile and then you sort of move on to something else and things are fine. This was a big and honestly amazing lesson to learn for the first time (and I am still trying to learn it fully): the obsessive thoughts feel scary and dangerous but they are not!
what i learned about myself
Now, I do a lot of sitting with thoughts that I used to try to get rid of. I am getting better at not judging myself for having those thoughts, although it is difficult sometimes. When I feel particularly clear headed and adept, I even talk to the thoughts in a friendly way. Like “hello intrusive thought, I see you, I’m here to take care of you.” Sometimes, I am in situations that previously would have caused me a lot of panic/anxiety, and I bring up the intrusive thoughts I would have and I mark a little bit of progress. I say to myself, “see, this is where this intrusive thought would go.”
what’s deeper
I am still learning to manage my OCD, I do not want to tell a purely triumphant story here. I have bad days, and some situations really do stress me out a lot and some thoughts really are quite scary to me still. But I have some stability, and I have started to like, wonder what’s underneath these scary thoughts. What about them makes them so scary?
And this is where I’ve started to understand my own past and my traumatic experiences. The story I am telling myself now is that the thoughts that recur and are particularly scary are related to traumatic experiences I have had. They don’t come from nowhere, but are part of a thread. When I am feeling brave, I can take an intrusive thought and ask where it comes from in my life story. Sometimes I can place it, and that helps me understand myself and is a source of deep comfort. It also helps remove a layer of self-judgement, because seeing scary thoughts as coming from traumatic experiences simply means there is healing to do. It is kind of like a scared child acting out, and what the child needs is not harshness but care and understanding. If you yell at the child to be quiet, it will only make things worse.
I could have some big-picture speculative takeaways but I’m far from a professional in this area, so I’ll just say that in retrospect I have been suffering from this type of OCD my entire life, and I am so grateful that I have a name for it, people who support me, and an ever-growing toolkit to manage it.
Anyway, here’s a picture of my dog, Demeter.