There I was lying in bed, paralyzed by something I had never felt before. I felt this overwhelming urge to spit. It was as if I couldn’t stop myself. I was 5 years old and little did I know that my entire world was about to shift in a direction that no one would wish on their worst enemy.
So it begins
This was the moment in time where it all began. Looking back I wonder if there were any signs, any foreshadowing of what may have brought this peculiar condition on. It wasn’t long after that incident when I started feeling the need to suck my stomach in certain ways, to do certain motions with my face. It just felt like I had to do it. Yawning became torturous, the more I thought about it, the more I had to do it. I don’t remember a thought behind it, just a very distinct feeling that needed to be quenched.
Soon this turned into other things. A deep sense of shame and guilt took over my life. It is difficult to explain to someone just how penetrating these emotions would become. These feelings began to influence every decision I made, undermining me from every angle. It was embedded into the very core of who I was, or so it seemed. Decisions were the worst, as I spent countless hours ruminating on all of the worst-case scenarios. I felt I was responsible for everyone’s safety and happiness. I feared making the wrong decision would upset someone or worse yet, cause something terrible to happen. I would then be forever guilty over what would take place. This fear of feeling guilty forever tormented me. It left me incapacitated to make even the most mundane decisions.
I can vividly remember one particular incident in which my mother was going to go to school to pick up my brother. It was maybe a 5-minute trip if that. She had stated that I could stay home or ride with her. I wanted to stay home, whatever I was engaged in at that time seemed much more exciting. As I heard the door click shut a instant wave of panic swept over me. Thoughts bombarded my mind, “What if something bad happens to her and you are not there? What if she dies? What if she is in an accident and you could have prevented it? I could be kidnapped!” I bolted out the door, tears streaming down my face. I was inconsolable. I made it just in time, as my mother was pulling out of the driveway I was able to hop in the car. This was the first of many times in which these ‘feelings’ controlled my life.
Daymares and scary thoughts
Daymares is a term my mom coined to describe these frightening images and thoughts that soon began to become more and more debilitating. These were waking nightmares, intrusive, unwanted thoughts, and images that would plague me. I began feeling the need to confess to her all of the things that were bothering me. Even the most minute thoughts, I had to tell her to feel a sense of relief. Just knowing that she thought it was normal or okay gave me a sense of palpable peace. The problem was, that it never lasted long enough.
I could tell that she was growing weary of this behavior. I tried to resist the urge to tell her. Sometimes I won, but mostly I didn’t. It could be the most embarrassing of thoughts, thoughts I didn’t want to share, but I felt that I must. I needed her approval, her reassurance, to know that I was okay. I trusted in her judgment, and not in my own. She was the only one that I felt safe enough to confide in, the only one who knew that something was deeply wrong with me.
Over the course of several years, my daymares would change. Some were more scary than others. Fears about death and dying were a central theme. The idea that I could somehow prevent death or sickness was front and center. This overwhelming sense of responsibility permeated through me. If I didn’t say certain phrases or things, someone I loved could die. If I touched something that was ‘dangerous’ such as a household cleanser or a medication bottle, the traces may be on me and get on them and they would surely die. It would be all my fault. The idea that I would have to live forever and ever with this guilt was so distressing to me.
I began doing everything in my power to protect my loved ones. If I thought something had a contaminant on it, I would hide that item or somehow sneak it back to the laundry room. I would warn my family members not to touch certain doorknobs that had been infected with these perceived contaminants. I would ask them continually if they were sure they hadn’t touched said item. Each time I was met with the same exasperation, and the same answers, there was nothing to worry about. Yet my mind would not, or could not, accept this, not fully. How could they be sure? What if there was even the tiniest of chances it was true? It would be irresponsible of me to ignore this. And so I didn’t. On and on it went throughout the years.
Too many fears to count
The list is far too wide and broad for me to possibly explain. In spite of not being raised in a religious household as a younger child, I became obsessed with religious images and thoughts and again felt tremendous guilt and shame over these. I had to say certain prayers in a particular order and if it was interrupted or if it didn’t feel right, I needed to start over. It was exhausting mentally.
I became horrified by the idea that I may have been molested, even though there was no reason or evidence in my life to suggest that this had ever occurred. It was just this worry that I may have been. How could I be sure that this hadn’t taken place? I spent countless times feeling sick to my stomach over this possibility.
Of course, there was the ‘choking’ phase. It was disconcerting as I began to have fewer and fewer ‘safe’ foods that I could eat. Everyone chalked it up to me just being a picky eater. Ironically I was praised for this. I was nicknamed ‘bones’ because I was so tiny. But they couldn’t have known. By this time, I had become a pro at hiding these strange characteristics of mine. I had learned that perhaps everyone didn’t have these same concerns or these daymares.
Eventually, this turned into more emotional contamination fears. This can be so difficult to explain to someone who may not be familiar with this term. At the time I experienced this, it didn’t have a name to me. I had no idea what this was. Thoughts began to turn things in my home ‘dirty’. I couldn’t ever seem to get things clean enough, without spreading the imaginary contaminant. Remarkably, there was this part of me that knew that this was illogical and that it made no sense. Yet the other part of me couldn’t be quite sure, so I had to avoid the objects, ‘just in case’. During this time period, I threw out some of my most beloved childhood items which I still regret today.
Certain clothes became dirty, even my toothbrush became infected. Nothing seemed safe to use. My family’s impatience with whatever this was affecting me had become noticeable. My outlandish behavior was becoming less and less easy to hide.
Finally, a name
I was 15 years old when it happened. All of those years of suffering and confusion collided with a television program. It was an episode of a show like 20/20 in which they spotlighted a boy who had Obsessive Compulsive Disorder (OCD). Instinctively this caught my mother’s eye and as she began watching she quickly called me out of my room to view it as well. She said, “This is what you have.” As I watched in awe, this boy was describing some of the very things that I struggled for so long with. I became filled with a sense of relief on the one hand, that this ‘thing’ had a name. It was actually something that could be treated. It was not just me, I was not alone. The story brought me a sense of renewed hope in my life. For 10 years I had been suffering in silence. I thought that I was defective and that this was my personality, just something that I would have to deal with my entire life. My perspective was changed in an instant.
Regrettably, it would still take many failed attempts to get the help I needed. The psychiatrists, psychologists, and therapists alike all agreed that I did have OCD, however, they had differing approaches in how to treat this. Most, admittedly had no idea. There was so little known about OCD at that time, especially in the rural area in which I resided. The internet did not exist, as it does now. There were no forums, blogs, or social media pages that highlighted this illness. There was so little information at all. Many times, I gave up on treatment, stopped medications, and tried to figure it out on my own. That is until I couldn’t any longer.
Finally, effective treatment
Around 2001 I hit a fork in the road. I was the illest I had ever been with OCD symptoms. I was losing weight rapidly and physically I was not in good shape. I was on the verge of passing out whenever I moved (likely lack of food and water). I had to do something. I needed to try once again to get treatment. I needed to overcome all of the fears surrounding my past attempts. There were some scary things that resulted from some of these treatments. I had to push through this. I am so grateful that I did.
I met a therapist that would forever change my life. This therapist put me on the path of advocacy that I am on today. This therapist taught me more about OCD than all of my combined college education on mental health. He showed me how I had to face my fears to find freedom. I began Exposure and Response Prevention (ERP) treatment and I began seeing a psychiatrist who was able to find the right medication for me. These two things combined drastically changed my life. For the first time in many years, I began to experience relief. ERP was hard, and I had to learn to not run away from my anxiety or thoughts. I had to learn that I was capable of tolerating really difficult emotions. I had to let go of a false sense of security and control that I desperately wanted to grasp tightly to. I had to accept that someday, it was possible that something bad would happen to someone I loved. I had to trust the process of healing. This was a long and arduous journey. I would be remiss in not telling you that this took just over 7 years for me. There was a lot to unpack.
This experience set me forth on a path I never would have expected for myself. I went on to go to college and obtain my Master's degree so that I could become a mental health therapist. Today I am a specialist in OCD and ERP. I am also an IOCDF advocate. I want to get the word out about what OCD is and what it isn’t. OCD can make you feel so hopeless, and powerless, and I want others to know that even though it feels so real, it is a trick. You can have power over your own life. You can live life towards your values. You are so much more than OCD tells you and you are not your OCD. There is far more to you.