Hello my zebras and spoonies! Thanks for coming and visiting with me today. I am glad that you’re here. Today is my fourth installment for the my diagnosis series and I am going to be talking about my experience with OCD or obsessive compulsive disorder and how those symptoms have impacted my life.
I think that the first thing that I want to talk about when I talk about OCD is the way that social media and movies and books have really done OCD symptomology a disfavor. There is this perception that people with OCD wash their hands a bunch and realign things and are super neat. That OCD people want everything super sorted and organized by color. They depict all this very particular symptomology and yeah, there are people with OCD whose symptoms look like that. But not everyone with OCD have those obsessions and those compulsions. The way that movies and TVs portray the disorder make it seem like that’s the entirety of what this disorder is about.
So a lot of the times when I tell people that I have OCD, they’re looking at me like I’m an alien, especially if they’ve ever seen my home they know I am not like what the movies show. Not even a little bit. My workspace in my home is absolute chaos. I mean, my workspace is a direct reflection of my ADHD brain. We’re talking piles and snippets and random eclectic collections and things just all over the place in weird ways. It probably seems to have no logical sense to any other brain than mine. So you come into my space and you’re like, Whoa, there’s no way this is OCD because you’re thinking of those people who are portrayed in the media.
But the thing is that I don’t experience the germ phobia or the obsession for orderliness. Those are not art of my OCD. The truth is that there are many of us that don’t have these symptoms. While germ phobia with hand washing and obsessive orderliness are common in the symptomology of OCD, it is super important to keep in mind that it isn’t part of every individual’s OCD experience. And it is really important to honor that individual experience.
So what does my OCD look like? Well, my OCD has a lot to do with things going on in my head, which is a little bit counterintuitive to what people think that OCD should be like but compulsive rituals do not need to be a physical behavior. It can be a mental ritual that you have to go through in order to complete things. An example of this is counting. Which is something that I frequently engage in. I frequently count the number of steps that I go up or down. I also frequently count the number of steps I take when I go down a hallway for the first time. I completely rationally understand that it doesn’t matter and yet I find it somehow fundamentally essential that I know how many steps there are in the stairwell. Why? Because my brain says so.
And that’s really at the core of what OCD is for me. When I try to explain the why I must do something, all I have is “because my brain says so.” There is no rational explanation for it. That’s part of what makes it a disorder. If there was a logical reason for doing the activity, it would probably not fall under disordered behavior and not be part of a mental health condition. If you have a routine of checking that all the doors are locked and the lights are off before you leave your house, that’s not dysfunctional. It serves a purpose. If you get stuck doing those checks and can’t leave your house until the checks have been performed three, four or five times… that might be a problem and might fall into the realm of dysfunction. See the distinction here?
A lot of my obsessive thoughts surround being late and getting lost. That’s probably because of my ADHD having led to my being late and getting lost on a fairly regular basis. Being late and getting lost produces this insane amount of social anxiety that is very uncomfortable for me. That anxiety is generated from real experiences and consequences that I had to face when I was late or got lost. And it makes sense that I would put interventions into place to keep these things from happening when they are clear problems in my life. But there is a line. Are these things being helpful and functional? Or are these behaviors and routines now creating their own sets of problems? If they are, it can fall into the diagnostic realm of OCD. So, even when there is a logical function for the behaviors, they can become dysfunctional.
I go through a lot of obsessive, ritualized behaviors to try to prevent being late and getting lost. That often means getting prepared for events way earlier then people think that I would ever need to. If I think that it’s going to take me a half hour to get ready to get somewhere, I give myself an hour just to be sure. If I think that it’s going to take an hour to drive there. I’m probably going to give myself an hour and a half to get there in case I get lost. I’m probably going to be using a GPS and I’m probably going to be looking at the map multiple times before I leave. Sometimes, I end up leaving late because I am so caught up in checking the GPS programming and the map. That’s when things have stopped being helpful and have stopped being functional.
I check my watch to check the time… I don’t even know how many times today. And if I can’t see what time it is it’s very distressing to me because it means that I can’t regulate the pace of my day, which provokes the anxiety that I’m not going to stay on time and that I am not going to pace myself in a way that all of my tasks that are necessary are going to get done. This is a really essential thing for the work that I do. So it is an adaptive set of behaviors for me. I’m a nurse and in my job I have a big pile of tasks that have to be done within certain timeframes. I check the clock before and after every task, because I need to know where I am at. I need to know how much time I have left compared to how many tasks I have left. And I’m constantly making this comparison and constantly evaluating the time left. And there are absolutely times that the time that I invest in gauging how much time I have makes me late. But I can’t not do it because not doing it means that I’ll become so anxious that I can’t work on any of those fundamentally important tasks and nothing’s getting checked off the to do list.
So it’s this weird trap where the behavior that allows me to accommodate and work through some of my ADHD symptoms has become dysfunctional in its own right, because it’s easy for me to get stuck in checking behaviors. And it becomes difficult sometimes to transition from the checking behavior to the actual doing and completing of tasks. And this difficulty of changing and transitioning between tasks is absolutely an ADHD trait.
But it is really a core fundamental part of OCD. When you have OCD, you can’t shift your thoughts. You can’t go from the obsessive thought of oh my god, I’m gonna be late. I’m gonna be late. I’m gonna be late. I’m gonna be late. You can’t turn that off. And rationally say to yourself, Okay, it’s not going to be the end of the world if you’re late. You’re just gonna start your day a little bit behind and you’ll be able to make up for it and in its it’s not going to be a crisis. You can’t have that rational conversation because you can’t get out of the loop of oh my god, I’m gonna be late, I’m gonna be late, I’m gonna be late. I’m gonna be late. That’s all your brain can do.
So transitioning is difficult. And you will see the same difficulty of transitioning in tasks with OCD. This is also the case with ADHD and autism. And this is another area where I feel like these three disorders overlap and have gray. So when you’re engaging in compulsive behaviors, the compulsion says: You must do this thing. You must do this thing. You must do this thing. You must do this thing. You must do this thing. You must do this thing. And it doesn’t matter that doing that thing accomplishes nothing. And it doesn’t matter that doing that thing makes you later than you would have been if you hadn’t done that thing. And it doesn’t matter that there really isn’t a lot of value in doing that thing. Your brain is still going to tell you, you must do this thing. You must do this. You must do this. You must do this. You must do this. Your brain is going to keep telling you to do that thing, until you’ve done that thing.
And you’re probably going to have to do that thing several times. I don’t just look at the clock once and see that it says it’s 11:41. That’s that’s not enough. I have to look at it a second time to confirm that is in fact 11:41 And then there’s some times that I’m still stuck on the compulsive checking task, and I look a third time, a fourth time, a fifth time, a sixth time because I must do this thing. I must do this thing. I must do this thing. But now the clock says 11:42. Which can trigger a whole new round of checking to be sure that it is in fact a new time.
That is the true nature of OCD: Getting Stuck. The way that you can’t transition from one thought to another thought. The way that you can’t transition from one task to another task. And all of this getting stuck in things creates a degree of dysfunctionality. Doing the thing makes you late, makes you look odd or is considered inappropriate for the context of the situation. It can make social situations difficult. How do you explain to people that you can’t help them with something because you’re in the middle of checking the time? Go ahead, try to explain that. Like, try to not look like somebody who’s completely batshit broken crazy. Yeah, they’ll think that you’re crazy. That’s that’s just what happens. Then you have to live with their perception of you because there really isn’t anyway to go back and fix that.
I also have a lot of body focused repetitive behaviors. It’s difficult to say whether or not that’s related to the OCD, ADHD or autism and I’m going to talk about those behaviors in a different post rather than in a specific diagnosis because I think that these behaviors are important, but I don’t really know for me which heading they really fall under.
Another area of a gray for me is the need for sameness. This is a very common autistic trait, that desire and need for sameness. But the this is also a thing for people with OCD. You need sameness you need routine, you need structure, you need things to be done the same way every time. Generally, my need for sameness doesn’t cause too much trouble. People tend to write this one off as a quirk and often like how predictable I am.
I am very obsessed with rule following and rule compliance. I find it very distressing when I see other people breaking rules and I find it very difficult to not comply with rules even when it is logical and necessary. It doesn’t matter what the rule is. You can’t encompass all things with a rule. There are going to be times when a rule doesn’t apply to the real world and it doesn’t really make sense to do it the way that the policy, procedure or rule set tells you to do it. Logically I can understand this and logically my brain goes well yeah, of course not. None of us can possibly predict every scenario that could happen in this life. That just that isn’t the way the human brain works.
But then the OCD beaver brain gets bogged down because I must follow the rules. I must follow the rules. I must follow the rules. There are times where I become frozen. It’s when these two parts of my brain collide and compete. And it can be very difficult for me to acknowledge the need to break a rule and acknowledge that it’s okay to break the rule. And whether or not that’s autism or OCD, you can debate that. But I personally lump it in with my OCD symptomology. And it’s largely because when I find my rules and my sameness challenged, it also engages compulsive behaviors. So for me, it feels like it’s part of my OCD. And that isn’t to say that it isn’t also driven and exacerbated and added to by my autism.
When I see that a rule is not being complied with this obsessive thought starts happening. The rules are being broken. The rules are being broken. The rules are being broken. The rules are being broken. Then obsessive thought drives the compulsion to correct what I am perceiving as a problem. I’m sure that you guys can already predict how this could cause a lot of social conflict. A lot of my coworkers feel like I police other people. I won’t deny that in some ways I do. It’s a real challenge for me to not overstep and to not start engaging in a lot of that policing behavior because it’s really difficult for me to see rules being broken.
That all being said, I have done much better since I went through Exposure Response Prevention Therapy (ERPT). This was probably the single most difficult thing that I have ever done in my life. I won’t deny it. Being forced to sit with your obsessive thoughts and being unable to do anything about it is probably the single most uncomfortable thing I have ever been forced to do. And that’s what ERPT is all about. It is the treatment that has the highest efficacy for the treatment of OCD. So, if you have OCD, this is the treatment that I recommend. While it is the most difficult thing I have ever done in my life. I will also say that it is the thing that was the most freeing. It was the thing that was most worth the work and most worth the effort. It took me a year to work through that program with the clinician. While I was going through that therapy, everything else in my life was exploding. All my other symptoms were just exploding. It made so much of everything else so much harder. But going through this therapy helped me develop a toolkit to know how to handle and manage the obsessions and the anxiety that is provoked by those obsessive thoughts.
So now I can say “alright, I’m having an obsessive thought” and I can sit with my anxiety. The reality is is that it doesn’t mean that that anxiety is any more comfortable than it was before. Because the truth is that anxiety is a really crappy feeling and it never gets comfortable and it never gets easy to sit with your anxiety. But you can learn ways to sit with it that are helpful, that are constructive. And you can learn to have an internal dialogue with yourself so that even though you are having anxiety, you can still choose to do the things that are going to move you towards being the person that you want to be and can move you towards the actions that you want to take towards the goals that you have for your life. You need to accept that anxiety is going to be a part of your life and I think that was the hardest part.
When I was getting treated with my OCD it was really difficult to accept that the OCD was never going to go away and that the anxiety that I was feeling that was being triggered by the OCD symptomology was never going to go away. Instead it was about being comfortable with what I was feeling rather than making it be something other than what it was. There’s a lot of power in being able to take that self control and say, “Okay, I’m feeling this thing. But that doesn’t mean that I need to do anything with it.”
I think about my OCD obsession’s voice, like the asshole on the bus that’s just running his mouth that nobody wants to hear, but he’s being so loud so everyone is hearing him. But just because you’re hearing the asshole on the bus doesn’t mean that you actually have to entertain anything that he’s saying. Yeah, you’re kind of stuck listening to him because he’s being loud, and he’s being obnoxious. You don’t have the option of just hopping off the bus when it’s going 60 miles an hour down the highway. You’re you’re kind of stuck in that situation. But you can choose to say to yourself, “This is just the asshole on the bus. And what he says doesn’t have value.”
I think that that’s the most important thing that I learned when I went through exposure response therapy, was being able to acknowledge that the little imps in my head, whether they were from my OCD, or from my RSD these imps don’t always tell me the truth. And they don’t always tell me things that have value. But most importantly, I don’t have to do a god damn thing with anything that these imps are saying. I have the power and the right to ignore the little asshole imps in my head. And that was so freeing for me. It might seem really obvious to other people, but when you are being constantly bombarded and saturated by these obsessive thoughts, it feels so urgent. Especially when they’re accompanied by this pressing anxiety and sense that something really awful is going to happen if you don’t just do the thing. But knowing that you have the power of choice, and knowing that that the imp is lying to you and you don’t have to listen to it is super, super important and super empowering.
I think that I kind of derailed here and got talking more about my treatment course than my actual OCD. So there’s that. But I do feel like my treatment course is a really important part of where I’m at with my OCD now. There was definitely a point in my life where my OCD had completely taking control and I was looking at a lot of work challenges. There were times that I left jobs because I was struggling in the workplace to get along with my co workers because of my OCD behaviors. It was really impairing my ability to function. There were times that my OCD was so severe that I had a difficult time getting through my morning routine in a timely fashion so that I could actually get enough sleep and get out of my house on time to be able to get to work on time. So yeah, there was definitely a time that my OCD was completely train wrecking my life.
But that’s not where I’m at now. Where I’m at now is that my OCD is an imp in my head and I choose which compulsive behaviors I’m going to allow and which I am going to lock down. Because locking down those behaviors takes a bunch of spoons and there’s some compulsive behaviors that just really don’t cause any harm. It doesn’t really hurt me any to count the number of steps as I walk up a stair flight of stairs, it just doesn’t affect anything. I feel no compulsion to repeat the process. I only need to do it the one time. So it really makes no difference in my life. If I’m going up the stairs and in my head, I am counting those steps, it doesn’t matter. It doesn’t change anything. So I don’t I don’t fight it. I allow my brain to have this ritual.
Another example is that even numbers are safe numbers. They’re comfortable numbers. They’re paired and my brain tells me paired numbers are good numbers. Odd numbers means that there’s a number that doesn’t have a friend and that’s uncomfortable and that’s not okay. So when I am adjusting the volume on the radio it’s needs to be an even number. I don’t fight this because this doesn’t matter. Does it really matter that my volume is on eight versus nine? Nope. I don’t fight with this part of my brain because it doesn’t matter. I do choose to not engage with these incidental exposures when I’m around other people and I see that they set their volume to 11. Oh, eleven is an uncomfortable number. I want my volume to be at 10 because 10 is a better number. 10 is a good number. 10 is nice. But I’m not going to engage with this one, because I’m not going to dictate to another person that they need to listen to their volume at a 10 rather then 11. This isn’t okay, like you shouldn’t be like dictating how other people engage with their social media. So this is a time that that incidental exposure needs to kind of be squashed down and you don’t engage in the the trigger and you don’t engage in the compulsion.
There are times that I let it be and there are times that I don’t. And it depends a lot on context rather than the actual trigger and compulsion. There are some compulsions that I still really struggle with. A lot of those are my body focused repetitive behaviors. Again, we’ll talk about that in another post. OCD is are a real challenge because it’s not something that we can cure. It’s not something that we can make turn off in your brain. It’s something that you have to manage every day. And you have to be aware of what your triggers are so that when they happen, you know how to engage with those triggers in a way that is healthy and in a way that is not going to explode your life or impair your social functioning or all of those ugly things that OCD can do.
I was a little bit more disorganized talking about my OCD today but I hope that kind of gives you a sense of how OCD doesn’t have to be about hand washing and it doesn’t have to be about organizing your sock drawer and it doesn’t have to be about making sure that everything is color coded. I think that’s all I’m going to talk about today. I don’t know what I’ll talk about next time, but next week, I will put out another installment in the My Diagnosis series.
Until we talk again please stay healthy and well. Bye!