Looking back on my childhood, I can see that OCD was there. It was creeping in the shadows waiting to pounce at just the right time. The earliest memory I have of OCD was when around eight or so, my mom put away books that I had piled on the floor. I had a full-on meltdown. Then something similar happened when I was 13, my mom put her boots in my closet and refused to move them. After some screaming and crying, I locked myself in the bathroom. I was inconsolable, and the anxiety that bubbled in my chest made it impossible to focus on anything else. Things started to go downhill from there.
The unique thing about my story is that my brother had been diagnosed with OCD 8 years before me. He had the typical fear of germs and handwashing. More people readily noticed this and identified it sooner because of his classic symptoms. His experience was in alignment with what the world views as OCD. The symptoms that I was experiencing were different. They did not match what people thought of when hearing the term OCD.
Most of my suffering was subtle or silent. The OCD that plagued me was mostly in my mind.
I struggled with perfectionism. I was obsessed with doing things ‘right’. I set such high standards for myself that there was no way I could ever fully obtain them. This was far less recognizable than washing my hands over and over, my compulsions were often in my memories, obsessed with ruminating on past events to try to perfectly understand myself and trying to make myself and my life ideal. Beyond that, I would make lists upon lists. I would compulsively take notes and make these lists constantly, from to-do lists to lists of things I liked and pieces of information about them. I was afraid that I would ‘forget’ and the effects of that would be devastating. I began to memory hoard. I needed to ensure that I would always be able to recall these things. It terrified me that I could miss something. What if I needed that memory later on?
The memory hoarding became obvious to those around me when I started rewinding television shows and movies a few seconds over and over again until the same dialogue had been heard five or ten times. I knew it was annoying, but it wasn’t enough to make me stop. And how could I ever explain to people that the reason I was doing it was that I didn’t understand it, I wasn’t processing it, or I couldn’t remember all the details, and the panic I felt about it made me feel like the world was ending.
During this time, my room never seemed to feel ‘just right,’ just like everything else. I couldn’t bring myself to put something somewhere if it didn’t feel right. If I did I was kept awake at night with a panic in my chest. So, if I didn’t know where to put something, I would add it to a pile of stuff. As a result, the pile kept growing and though I would work on organization often, my room never got clean. I also re-did my room multiple times, moving furniture around, painting the walls, etc. But it was never good enough.
Somewhere along the way, I began to notice that something wasn’t right, and I was able to come to the conclusion that these could be symptoms of OCD. I tried to get help from those around me but was brushed off, most likely due to a lack of knowledge that OCD could present this way. In general, OCD is misunderstood by many. I think that the nuances I experienced went unseen.
One day, my dad and I were discussing it while I was in distress by a book I was holding. On the cover, I noticed a pencil mark. Instinctively I began to erase it. It needed to be ‘clean,’ it needed to be perfect. I kept erasing and erasing, even when the mark was no longer visible. My stress and anxiety were through the roof, and it was obvious to my dad. He agreed I should see a doctor to be evaluated for OCD. However, that was the last we spoke of it, and somehow, my symptoms took a backseat once again.
As a child and even now, I have experienced many physical symptoms due to multiple chronic illnesses. Looking back this probably also contributed to my late OCD diagnosis, and why it so easily became an afterthought to me. I think everyone, including myself, was just so focused on my physical ailments. One day I saw my doctor, surprisingly for something other than my physical issues. My mom had noticed some depression in me and had taken me in for that. It just so happened that my doctor had a decent amount of knowledge of OCD, and somehow, he was able to tell I had the disorder simply by asking me a few questions, he quickly gave me a formal diagnosis. To this day, I have no idea what he saw in me that tipped him off about my suffering, but I am grateful for his knowledge and recognition.
I started to see a therapist who I was told was an OCD specialist. It ended up being traditional talk therapy. I enjoyed our conversations and she was very nice. However, I did not feel that my symptoms were being helped. I was just talking with no resolution. I was also placed on medication. The first one worked well for about a year and then adjustments needed to be made. During this period of my life, I think I was just trying to get through it. I wasn’t doing my best to manage it. I knew I needed something more in my treatment, and I needed to commit to it more. I just hadn’t figured out what I should do at that point.
I was homeschooled due to my physical issues during high school. I think that this impacted my mental health negatively. I was constantly in my head. I couldn’t be distracted by normal age-appropriate social relationships, as I was not often around people my age anymore. My thoughts were given room to fester and grow. And that’s just what they did.
Again I needed to know everything about who I was. It was like everything needed to be pondered on and dissected over and over again.
I needed to feel okay. I think it would be considered Pure O symptoms. I was lost in my thoughts all the time. I felt like I needed to organize my thoughts and determine exactly who I was, and how I felt, what I thought about everything. I needed to know my beliefs fully. My writing and my school work became significantly affected. I was trying to write down every single thought that I had. I needed to write down what I was feeling at each moment. What did it all mean? I was exhausted from this.
I had moral themes, focusing on whether I was a good enough person. I was nitpicking every action I took, trying to determine if it was okay or not. I spent a significant amount of time trying to find a way to rewrite the past. I even worried that I may be a psychopath. I would google a lot, trying to get reassurance. I became obsessed with serial killers and whether or not I was like them. I would become numb and zone out which led me to believe that I didn’t think those things were bad, and that I was capable of the same things they were. It was just a cycle.
There were times when I couldn’t handle the possibility of being a bad person, so I was in denial about the past or obsessed over figuring out whether something was true or not, but only looking for the answer that it wasn’t. Then there were times when I was convinced something was true about me, that I had awful characteristics or something in my memory proved I was a terrible person, that turned out not to be accurate.
I also had to tap as compulsions. The stress weighed heavily on me. My health conditions require that I take good care of myself. But I was so preoccupied that I wasn’t. I would get sicker and sicker. My family didn’t seem to notice this, likely because I already wasn’t in great shape to begin with. By this point, I had developed some friendships. I felt safe enough with some of them and didn’t hide my compulsions. Numbers became a thing that the OCD latched onto. I would stare at the clocks, the number 6 made me extremely uncomfortable. I would look at the time and repeat the time to myself in a whisper over and over again. I think this was a way to reassure myself that it was that time. One day I was on FaceTime with a trusted friend and I began the compulsion My friend corrected the time, it was not AM but rather, PM. Honestly, I thought that I was going to have a breakdown.
Then came the day in 2020. I was hit with a memory, a realization of something in the past I had previously lied to myself about, and somehow up until that point, I had believed the lie. It was something that I could not reconcile in my mind. The anxiety that this caused me was like nothing I had experienced before. I could not cope with it. It took me a long time to confront these feelings. I was ruminating and trying to find a way around it. In this particular instance, I could confess to someone who needed to know the truth, as she was directly affected by it. It turned out to be the right thing to do. But quickly, compulsive confessing began to intrude. I realized I hadn’t mentioned all of the details of the memory and I wondered if she had understood what I meant. How could I be sure I had said everything correctly? I need to word it this way instead. I returned to tell this person more details about the event, and I had to say things a certain way- even if it meant the same thing as something else I had already said. If I didn’t add every detail then that must mean I am a liar. I felt stuck in the past. This was debilitating, it kept me from living in the present.
I would try to find new meanings, searching for every little detail of the past, from what happened to what I was feeling at the moment. I would get stuck in my head, trying to determine whether a memory, feeling, or thought was true, real, or accurate and what that would mean about who I am. I was often scared to go too deep though, or do much research, as I wasn’t sure I could handle it if it was true.
My brain kept wanting me to believe that I was a bad person, a monstrous human being. I was constantly at war within my mind. How do you ever win in a battle like that? At a certain point, I was so depressed, that I wasn’t functioning, I couldn’t eat, and could barely move. My thoughts, my memories, my feelings, paralyzed me. My brain lived in constant fight-or-flight mode. I was so tired from fighting. I was always in survival mode.
My brain was constantly engaged in an unsolvable puzzle-never finding the right pieces.
I just started seeing a new ERP therapist. I still struggle with major guilt and real event/false memory themes. I am in the very early stages of treatment. I’ve done some ERP in the past but didn’t finish it. It was too expensive. I quickly realized though that it was what I needed. Sometimes, talking about a concern of mine could give me perspective, but talk therapy would never be enough for my disorder. I tried doing ERP on my own, but with my morality themes, I was too afraid I would actually do something wrong, so I went in search of another ERP specialist that was more affordable. It took a long time for me to feel comfortable enough to open up to anyone and talk about many of my thoughts, feelings, and memories. I was terrified. I felt so much shame. I’ve gotten better at it, but when I met with the new specialist, I felt my fear build up again. As the first session went on, I became a bit more comfortable and opened up slightly about a particularly taboo fear of mine. I was amazed at how non-judgmental the therapist was. She put me at ease. That’s how I knew this therapist understood OCD.