Growing up I was always a shy and reclusive child. I stayed to myself. I was afraid of what I was experiencing. I didn’t understand it. I had big emotions, I felt things on a different level. I was so afraid and it felt too hard to involve other people in what I was dealing with. I had so many big thoughts, deep thoughts. It made it difficult to relate to my peers and to let anyone in. I played alone on the playground. My mind just wouldn’t settle down. Looking back I can see clear signs of OCD but at the time I didn’t know it was a thing. Connecting to others was hard. I felt different, I just knew that what I experienced was unlike that of other children I had met. I searched for a reason in my mind but I always turned up empty-handed.
A disheveled home life
My home life was chaotic and unsupportive. It was loud, there was arguing and my parents didn’t get along. I felt like the things I endured internally weren’t important, they were minimized. I quietly went through whatever this thing was.
I felt isolated, alone in my pain.
One day, when I was 10 years old, I had become consumed with the idea that there were fleas in our house. Thoughts of infestation bombarded my mind. It was as if I couldn’t think of anything else. I spent endless hours and days on my hands and knees, searching every nook and cranny for fleas. I researched traps online and then would set them. I’d check and recheck and then check again. I needed to feel certain that all of the fleas were dead. Why did I do this? Because I felt I had to. Life had taught me that no one could take care of me as I could. No one else would ensure my safety. That was my job and my job alone.
I was responsible for everything.
We lived in a trailer, so in very tight quarters. I was constantly rearranging everything, trying to control my environment. I needed my space to be neat and in order. I had the sense that I couldn’t control the environment that I was in, so I would control what I could. If everything else in my life was uncontrollable, at least I would control the space I could. In some ways, these things felt very normal to me. The constant sense of responsibility weighed heavy on my heart. I would be consumed with feeling “clean enough.” I couldn’t sleep, I was in a constant state of worry. I had intrusive thoughts about who I was, as a person. I started to experience sexually intrusive thoughts about my family and my close friends. I hated it. I didn’t understand why this was happening to me.
Throughout junior high, I continued to struggle with anxiety. It just seemed to keep snowballing more and more out of control. During this time in my life, I still didn’t feel supported or heard. Therapy wasn’t really an option for me at that time.
My entire world turned upside down
Then, high school happened. I was involved in a horrific car accident that left me as the only survivor. I was just 14 years old. My entire life came shattering down. I lost two friends that day. I was hospitalized with serious injuries for weeks. I broke my femur, and jaw and lacerated my kidney. I was in a coma. It was all very intensive. I would endure physical therapy for a long time to come. I had to relearn how to walk. This is where Post-Traumatic Stress Disorder (PTSD) came in and really when my OCD symptoms catapulted.
The accident happened just after Thanksgiving, so I returned to school after winter break. Going back was surreal, to say the least. I was faced with opinions and what I felt were judgments. People thought I had changed. Honestly, I don’t know what anyone expected. I don’t know how anyone could go through something like I had experienced and not change. It was so confusing.
Again I felt isolated, and alone like no one could possibly understand my experience.
High school was supposed to be the best years of my life. These were the years that people looked forward to, the years where I would grow into the person I was to become. These were my formative years. Unfortunately, these years are some of the most painful in my life. This was the time in my life that I was triggered in many ways that still continue to trigger me today.
My perfectionism tendencies kicked into high gear. I wanted to show everyone I could do good, and be the best that I could be at everything I did. I felt a sense of needing to live my life the best that I could like I needed to live life for my friends that had lost theirs. I wanted to fulfill their missing pieces as if somehow they could feel life through me and it needed to be perfect for them.
My family noticed. Again, they didn’t really put a lot of thought into it. They downplayed it. Even to this day, my father doesn’t know I have OCD and it’s not something I openly can talk about. My mom and 2 sisters do know but I don’t feel like they understand it. This is hard for me. I want them to get it, to be able to share with them this part of my life. Because I suffered from this my entire life I think that they take it personally like they feel guilty. Maybe part of them knows that I could have been helped sooner, but I am not sure.
Thankfully during these formative years, I did have support from the mother of one of my friends who passed away in the car accident. It was as if we needed each other, to grieve our loss. Had I not had her in my life, I am not sure what would have happened to me.
Eventually a diagnosis
Many times before my diagnosis of OCD I had sought out help. In college, I went to therapy for the first time. I was living alone, and rumination and intrusive thoughts filled my head. I worried that my friends didn’t really like me. I thought they hated me. I was spending all of my time perfecting my schoolwork. I was putting so much pressure on myself. I was crumbling, all the control I had fought so hard to grasp was falling apart. I had hit a point where I was afraid of myself, and my thoughts and that if I didn’t get help, I wouldn’t be here today. Eventually, I was diagnosed with Generalized Anxiety Disorder (GAD), Major Depressive Disorder (MDD), and Complex Post-Traumatic Stress Disorder (C-PTSD). Still, this didn’t seem to capture my entire experience.
Just prior to the pandemic I had been living abroad for over 2 years. Again I was struck with a major life challenge, like the rest of the world things changed in an instant. I had to come home to the states because of Covid. This is when I really started to have more problems related to OCD. We lived in a rough area at that time, we could hear gunshots at night. I began having a lot of intruder-themed thoughts. I had compulsions of checking and rechecking to ensure the door was locked. I couldn’t go to sleep until I had read through all of the police reports that I could find. I needed to stay awake longer than my partner. I felt like it was my responsibility to protect him. I knew I couldn’t live with the guilt if something happened and I didn’t protect him.
I have also struggled with intrusive thoughts about homosexuality and POCD themes. Driving has been a problem since the accident I was involved in years earlier. I have intense anxiety whenever I drive. I worry that I will cause an accident, that I will hit someone and run them over and not know it. I ruminate on whether I actually hit someone that I may have seen walking. I try and reason with myself, try and figure out the truth. There is just so much doubt. Sometimes I even circle back to check.
I can’t seem to feel sure enough.
One day in therapy, I felt like I cracked. It was like years of holding everything in came leaking out. I told my therapist about the death of my cat and my obsession with fleas at that time in my life. It was at this moment in time, many years later, when I poured out my secret fears to that therapist, that I was finally given the OCD diagnosis. It was the missing piece of the puzzle for what I was experiencing for many years. This therapist referred me to an OCD specialist.
It’s been a little over a year since my diagnosis. I tell my current therapist every other week that I am still not convinced I have OCD. She laughs gingerly. I know that this is probably something she has become accustomed to hearing from someone with OCD where doubt inserts itself into anything and everything.
Prior to being diagnosed with OCD, I had remained silent about that part of me. I simply didn’t understand it. I wanted to figure out everything first, on my own. Ironically I wanted to solve the problem before I asked for help. Analyzing is what I do, it’s who I am. I didn’t like experiencing anxiety and uncertainty. I have always been very self-aware. I knew early on that the diagnoses didn’t fit everything I was going through. At the same time, this only played into more OCD fears. I worried I may have had schizophrenia, autism, bipolar disorder, anything that would in my mind be the most debilitating. I was searching for answers. I had never even heard of OCD.
The impact on me today
OCD affects my entire being, I seek reassurance a lot, I overshare a lot, and I don’t feel safe with myself. It is not that I would hurt myself but my mind doesn’t feel safe. I am still early in my recovery process. I learn something new every day about myself. Both good and bad. I want to keep going. ERP has not been easy for me. It feels too big, too scary, I don’t want to disturb myself even more. I know I need to do it but it is a very hard process and it feels lonely sometimes. But then I recall what it has been like for all of these years, living in a prison OCD constructed, living with a false sense of security and control.
I want something more, I want to live in freedom, I want to manage the OCD that has tried to consume my life and make my decisions.
I remind myself that I am in a partnership and it is hard for us to go through this. But I am not alone. It is hard for him to watch me go through this, but he is my biggest supporter.
It’s been a very long journey, and it is not over for me. But now I have the tools and the OCD community to support me on my best and worst days. I am still working on self-compassion, doing some ERP but realizing I need to be building up to harder ERP exercises. It’s a journey. But it’s one that I am facing head-on.