OCD

My OCD story started in childhood

My OCD story started in childhood. I remember walking and counting, and walking and counting. I made up complex rituals around even numbers and sets of three. I always had to end my steps on a certain number, or with a set of three. When I was with my family or my friends, we would arrive at a destination or a stop at a crosswalk, and I would continue to take tiny steps in place to complete my ritual.

I also made up rituals about colors. I became convinced that it was imperative to avoid certain color combinations. I would move my toys, my books, my clothes – anything to avoid seeing certain colors together. Many of my childhood friends made up games or sang songs about avoiding cracks in the sidewalk, but I took the game to another level. I would avoid an exact number of cracks, tiles, or objects on the ground, or I would step on every single one and end with a set of three.

I would say that my childhood OCD was almost purely behavioral. I had no obsessions, very few “what ifs” and no idea why I felt compelled to do these things. However, I did have the beginnings of one emotion I believe is ubiquitous among many OCD sufferers: shame. Even as a child, I remember being aware that my behavior was not “normal.” I was afraid adults would laugh or scold me if they knew about my behavior, so I kept my rituals secret.

During this time in my childhood, in addition to my rituals, I also had another secret. I was molested by a near-stranger once when I was nine years old. I remember feeling intense shame, confusion and humiliation after it happened, culminating in tears and a tantrum. To the adults in my family, my sudden break down was unexplained, but we quickly moved on. I don’t remember thinking of the event again until years later. It was as if I blocked it out completely.

I never associated my OCD behavior with the sexual abuse until much later in my life. By my late twenties, my OCD had become so severe that I reached a breaking point and started therapy. When therapists began asking questions about when my symptoms started, it prompted me to acknowledge the timing. I remember starting the rituals at places or events where I would have been at the age of nine, after the abuse happened. I want to note that childhood memories are often unreliable, and it’s possible that I don’t really know the correct year or month. I will never know for sure whether the abuse triggered or exacerbated my OCD. However, I choose to include this abuse in my story because I want to chip away at the shame and secrecy around sexual abuse. I’ve learned that my own shame around the abuse and my shame around mental illness love to echo each other, and shame and secrecy fuel OCD.

During my teenage years, I stopped doing so many complicated rituals. I was focused on school and some of the rituals slipped away from my mind. I also started to acknowledge what had happened to me as a child. My abuser “tricked” me and claimed to be touching me for another purpose. I would guess this is a common tactic among those who abuse children, and it was effective. Although I clearly remembered what happened and had come to understand that it was sexual abuse, I would often question myself and feel that it was my own fault for feeling dirty and humiliated. To this day, although I know what happened on an intellectual level, I still have an emotional reaction of shame and an instinctive belief that my abuser was right and I was the one at fault.

Although my OCD symptoms had lessened in high school, by the end of college, my need for rituals and compulsions had come back. I started to struggle with racing thoughts and anxiety about things that were not likely to happen. The timing echoed struggles with depression and anxiety among others in my family; my brother had started taking anti-depressants. While he shared some of what he was feeling with my family, I continued to keep my struggle secret. I would tell myself I was just experiencing normal anxiety everyone felt to some degree. I discreetly started all kinds of new checking rituals: checking to make sure the door was locked, checking my alarm clock, checking over and over to make sure I had finished a work project or an important task, despite remembering I had finished it. I started to compulsively touch or move objects an extra time when putting them away, and I would complete all kinds of habits in a certain, exact order.

As time went on, I became more and more attached to my system of compulsions, and I began to develop more and more “what ifs.” For example, I would constantly have thoughts of a violent intruder entering my apartment if I didn’t check the lock one more time. The thoughts became more and more outrageous and disjointed. For example, I would think, “If I don’t touch this object one more time, my girlfriend and I will be the victims of a horrible crime.” I knew the thoughts were irrational, and I became more and more ashamed of them. I made more efforts to keep my thoughts and compulsions secret. I would lie to my girlfriend and make up something I needed to do in another room, when I was actually compulsively checking locks, checking the stove or doing more rituals.

Around my mid-twenties, after a few more years of living with the compulsions and rituals, my worst struggle began: intrusive thoughts. When I was on a top floor of a building, I would have thoughts of jumping off, or of my girlfriend or friend pushing me off, or me pushing them off. I would read about some violent crime in the news, and vivid images of the crime would pop into my head — happening in my own home, often with me as the perpetrator and my wife as the victim. The thoughts terrified me to no end, and I started to feel horrible anxiety around knives or heavy objects that could be used to hurt someone. I began to have more and more violent thoughts about almost any object or situation. For example, I would look at a bottle of wine and think that it could be used to hit someone over the head. I would get out of a car and think of slamming the door on my own hand or on someone else’s hand. I would look at someone wearing a scarf and think of strangling someone or hanging myself. The list goes on and on.

I hated and feared the thoughts with a passion, and I wanted desperately to escape them. At this point, I also started to think that I understood what it was like to feel so desperate you wanted to commit suicide. I felt like I was constantly enslaved and tortured by my own mind. I used books as a distraction, and I would try to focus on nothing but the plot in the book so the thoughts couldn’t creep in. In the beginning, I would usually be able to refocus my attention until the thoughts became less pervasive, but the thoughts always came back. It became more difficult to find any book or distraction that could tear my attention away from the intrusive thoughts.

The thoughts made me more and more desperate for constant reassurance, and my compulsions multiplied to the point that I would do hundreds each day. I would change a word in an email, touch my purse an extra time, make sure there were always even numbers around me — even the number of text messages I could see on my phone screen. My obsessions and intrusive thoughts became more and more repetitive, usually involving violence against people I cared about or self-destructive or humiliating behavior. I remember once having a thought about destroying expensive equipment and humiliating myself at work. The thought felt so real that I walked around my office, checking to see if anyone was waiting to fire me or even arrest me. I knew the thought was crazy and I felt deeply ashamed of it, and yet incredibly afraid that it was real at the same time.

Outside of the work, my intrusive thoughts of violence became more focused around graphic, repetitive images of me hurting or killing my wife (my girlfriend and I had gotten married), or my wife getting hurt or killed in some kind of accident. It was much easier for me to dismiss thoughts of hurting myself, but thoughts of hurting her or watching her get hurt horrified me to no end and tormented me constantly. I knew the thoughts were just thoughts, but on an emotional level they felt real. I was terrified they would somehow come true.

As my OCD became more and more consuming, I had more and more suicidal thoughts and I felt intense self-hatred. I had developed a kind of “double” personality in order to keep my job and my friends and to protect my relationship with my wife. I have always had an ability to hold a lot of information in my mind at once, and I am good at hiding my emotions, especially at work. I think these “good” qualities became a double-edged sword in the context of my OCD. They allowed me to perpetuate OCD thoughts and rituals while still performing well at work and appearing calm. I would write emails and speak in meetings while having horrific thoughts at the same time, and I would sneak in a compulsion by touching my chair an extra time or moving a pen. I became incredibly good at hiding my fear in front of others and incorporating rituals discreetly into any moment of my life.

Ironically, although my OCD loves to torment me with thoughts of my wife getting hurt, my wife also motivated me to get better. I knew my OCD was going to consume my entire life and I couldn’t stand the idea of no longer being a strong partner to her. I started to look for more information about OCD and intrusive thoughts. I understood that the thoughts were simply images of things I hated most, and they stuck because I had a huge emotional reaction and reinforced them with compulsions. I knew I had to learn to love myself again and I had to find ways to break the OCD cycle. I started to read about strategies for recovery online and I worked to tell myself that thoughts are just thoughts, not a reflection of my values. I tried to remind myself of everything I had accomplished in life and the reality of my wonderful relationships with my wife, friends and family. I also started to cut back on compulsions, starting with the ones that caused me the least anxiety.

My road to recovery was long and rocky. Over several months, I cut back on more and more compulsions until I was only doing around twenty or thirty every day, but I often felt worse than ever. I still had the urge to do compulsions hundreds of times a day for months afterward. I would feel awful about not doing many of them, sometimes for hours or days. I wasn’t able to find a therapist who specialized in OCD and took my insurance, so I started seeing a therapist who had never treated OCD. I have many regrets about this. While she helped me during some sessions, her background was not a good fit. She specialized in analyzing thoughts and making connections, which I now know is the worst possible way to approach OCD.

Although I didn’t always find therapy helpful, I started to become more hopeful after learning more and more about OCD through online resources. I set goals to break the rest of the rituals and started doing Exposure Response Prevention on my own. I often felt as though I were taking small steps forward only to take more steps back. I initially failed almost any exposure exercise I attempted. I felt sickening waves of anxiety hundreds of times every day, and I would worry that my effort to break the pattern and stop rituals wasn’t working. By the time I had cut back to only ten or twenty compulsions a day, my OCD would try to latch onto any habit or create a new ritual any way possible. For example, if I normally used a blue pen at work, I would feel terrible anxiety when I tried to use a black pen instead. If I normally checked the mail, I would feel horrible if I didn’t check it one day because my wife had already done so. These types of activities had previously just been practical habits for me, not rituals, but my OCD constantly tried to shift and grab onto them. I also started to experience more Pure O, and I had to be extremely mindful in order to avoid dealing with thoughts in a specific, compulsive way. Working to recover from OCD is like wrestling with a shapeshifting creature that changes form and slips away every time you pin it down.

Although I initially failed exposure exercises, I gradually started to succeed when I aimed for tiny, miniscule steps toward a goal. Eventually, I was able to leave the objects I feared sitting out, or carry them when I was next to my wife. I tried other strategies to deal with intrusive thoughts and obsessions, like writing the thought down every time I had it and delaying the worry or obsession. Finally, after doing exposure and writing exercises hundreds of times and refusing to do a compulsion that caused me particularly horrible anxiety for days, I felt a shift. I knew that I was starting to get better.

From then on, everything slowly became easier. I would experience more feelings of intense doubt rather than full-blown fear. I eventually stopped doing almost any type of ritual and compulsion on many days and actually stopped feeling the urge to do them so often. The exposure and writing exercises helped me deal with my obsessions and intrusive thoughts, and over time both were incredibly effective.

I still have more work to do. I often find myself getting drawn into new obsessions with different themes, and my old themes of violence have a tendency to resurface. I’m still working on exposure. I still have intrusive thoughts, but they happen much less often and I’m much better at dismissing them. After learning more about Acceptance and Commitment Therapy, I have been practicing leaving an intrusive thought “hanging,” unfinished or unanswered. This has helped me get better and better at dealing with doubt and uncertainty.

Before my recovery, I would try to do yoga, meditation and all kinds of relaxation techniques. I would often hear my yoga teachers encourage us to think positive thoughts and let go of all negativity, which always made me feel terrible about my involuntary thoughts. Although I think meditation and mindfulness can be helpful, I think we are often directed towards these solutions in a way that is very counter-productive. I was constantly trying to “de-stress” and “think positive,” and this only made me worse. I don’t believe it’s possible or productive to constantly “keep your stress level down” as we are often told to do.  The trick is to face your anxiety head on and gradually train your brain to get better and better at dealing with perceived danger and uncertainty.

I wasn’t able to find a therapist who was knowledgeable about OCD, and many of the strategies I used came from the International OCD Foundation web site, from other OCD sufferers, and from the OCD Stories podcast. I want to thank Stuart and everyone who has shared their story or shared information about steps toward recovery. I also want to encourage others to stick through the fear we feel when working toward our goals. We are not alone, and we are not our thoughts. I believe we are far stronger than anyone would expect. When we practice exposure, we are essentially facing our worst nightmares over and over, again and again. Despite what many may believe about those who suffer from anxiety, I think we are some of the most courageous people I know.

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