(LEARNING TO) DESCRIBE MY OCD

I’ve had OCD since I was four years old. At 33, you would think I would have figured this thing out long ago. But it’s only in the last few years that I have really learned how to properly articulate how my OCD shows up and interferes with my life. I think this speaks to the fact that living with a disorder or neurodivergent traits doesn’t automatically mean we understand what’s going on with us. This can make it that much harder to be able to describe our experience and perspective to other people. I feel lucky that I now have a better grasp on what it feels like to have my version of OCD. It makes it easier for me to have self-compassion and fill my loved ones in on my day-to-day reality. I’ve made a lot of videos and tweets about various parts of what it’s like for me, but I’ve never written it all down in one place. Until now! This is it! I’m going to make my OCD “cheat sheet!”

1)    I am afraid of the ick and not the sick. This basically means that my fear of contamination isn’t tied to anything other than the fear of being contaminated. I don’t worry that germs will make me ill. I worry they will make me feel disgusting and unsafe in my own body. My cleaning compulsions exist for me to avoid that feeling, instead of a specific sickness.

2)    Clean doesn’t mean organized. My brain is much more worried about cleanliness than mess. This explains why my kitchen and clothing drawers are a disaster but every surface in my home has been wiped down over and over again. I don’t care if you fold your clothes, I care if you wash them.

3)    My OCD takes up a lot of my mental energy because I am constantly tracking contamination. My OCD therapist helped me form this analogy. Basically, think of germs as paint. If I touch something covered in “paint” like the mail or a suitcase, my hands are now covered in paint. So I am extremely careful about what I touch next because I don’t want to get that paint all over myself or my home. I am also constantly tracking the paint on other people and praying that they will obey my “rules” when in my home or in my car. You see, getting paint on some things is worse than on other things based on how easily they can be cleaned. That’s why I might let someone sit on my couch (wipeable) but not my bedding (a huge pain to wash). Also, the presence of paint on my body or in my home is like having little fire ants in my brain and I can’t get rid of them until I clean up all the paint. I would rather have the least paint to begin with and get rid of it as quickly as possible so I can relax and feel safe.

4)    My compulsions are not based in science and they are not consistent over time.  I do plenty of things that other people would identify as “gross.” This is possible because my contamination OCD doesn’t work with logic, it works with fear. I can also develop new compulsions if I am not careful. For example, I used to never care about touching doorknobs or elevator buttons until the pandemic. Now I feel compelled to sanitize my hands after because my OCD has decided I need to. At the same time, I was able to give up wiping my groceries down after a few months. When I asked my OCD therapist why I was able to give up that compulsion but not the others, my therapist said sometimes my OCD can tell that my resistance is growing too strong so it will “change the rules.” Wiping all my groceries down was extremely time consuming and I hated doing it, so my OCD let me stop. But it still insists I wipe down anything I get from a drug store, further proving there is no logic to be found here.

5)    My OCD gets worse when I am stressed or overly give into it. Sometimes I find myself in an OCD spiral and my behavior is worse on those days than on others. I also have a lot of anticipation anxiety about becoming contaminated. There have been times when I am in the shower, cleaning myself, worrying about becoming unclean later in the day. I spend a lot of time thinking about how to avoid or contain contamination in the future. This can be exhausting and make it hard for me to look forward to travel because airplanes are a huge trigger for me. Everything that has been on an airplane must immediately be wiped down before the contamination can spread!

6)    Taking a values-based approach has been helpful in combating my OCD. If my compulsions are getting in the way of me doing something I really want to do or putting a strain on an important relationship, it is easier for me to find motivation to push through the discomfort. But if there is no real cost to doing a compulsion, I would rather just give in and not feel the disgust or stress.

7)    I fluctuate on how much I want to tackle this part of my life. There have been periods when I really wanted to get a better handle on my OCD and periods when I just wanted to live my life and fighting doesn’t seem worth it. I’m learning that it’s okay to go back and forth between the two.

8)    My OCD shows up in other ways outside of contamination. I know that my need for reassurance and obsession with being a good person are probably tied to my OCD as is my past tendency to see everything in black and white. I also have a lot of sensory issues that interfere with my ability to dress the way I would like to. That said, I still don’t feel like I have a full understanding of how my OCD impacts all aspects of my life. But I don’t think that I need to. I can understand how I operate without having a clear source or label for everything.

9)    I am afraid of who I would be without my OCD. I also HATE having it. Both things are true at once.

And there it is! A current breakdown of what my experience is like. Maybe some of what I said will resonate with other people living with this disorder. Or maybe reading this will encourage you to do the same sort of rundown with however your brain works. Everyone’s symptoms, regardless of their diagnosis or lack thereof, show up differently. I’ve found that taking the time to understand and articulate my experience is helpful instead of just relying on the umbrella term of OCD. There’s also a chance that if I do this exercise again in 10 years, I will find myself describing something completely different. Or maybe not completely, but somewhat. For as much as I believe in myself and the ability to change, I can’t imagine a world where I will feel clean after being on an airplane.

xoxo,

Allison