This story is part of our blog series called “Stories from the OCD Community.” Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.
I have obsessive compulsive disorder (OCD). It has taken many years, decades in fact, for me to say that out loud. For a long time, I couldn’t tell anyone about my strange, terrifying thoughts. The idea of talking about them was scarier than the OCD itself.
My OCD takes the form of letters and numbers, nightmarish thoughts, and never-ending stories.
I first experienced an intrusive thought at the age of 13; it was disturbing and violent. In that moment, my life changed. The thought stayed with me, gnawing at me. It was impossible not to think about it. Eventually, the thought faded but was quickly replaced by another and another, each one equally as disturbing and violent. Since that day, I have had hundreds of these thoughts.
Then the counting started: always grouped by 2s or 4s. I remember being on the high school bus counting the broken lines that divided the lanes; as an adult, I would do the same thing while driving. I counted cars as well as floor and ceiling tiles. I counted the number of letters in a word or phrase, and sometimes the number of words in a sentence during conversations.
Later, the stories appeared: boring, mundane stories that I made up and repeated over and over until I reached the end. The problem was that I never seemed to get to the end, so the stories continued.
At 23, I met Marty. He was everything I ever wanted in a man. Very quickly I knew that we were both in love. A little over a year into the relationship we were engaged. Despite my initial happiness, the OCD eventually crept in and started to chip away at it. Outwardly, I was happy and busy making all the arrangements for the wedding. I met with a priest, booked a venue, shopped for a wedding gown, and selected invitations. I smiled, laughed, and acted excited, but I felt like I was putting on a show. No one knew the real me or had any idea about my experiences with OCD (though I did not know its name at the time).
My thoughts were taunting me. They were telling me that I didn’t love Marty and that I was lying to him. They made me question my feelings for him. I also experienced vivid images of harming my husband. I didn’t say a word about these thoughts to Marty or anyone else. At times, it felt like the weight of my secret would crush me to death.
After the birth of my first child, the depression which I had battled since I was 16 returned. The dark, violent thoughts turned towards my daughter and I felt terrified and ashamed. Around this time, I realized that I might have OCD. This was largely due to my husband’s friend who was suffering from OCD and talked openly about his experiences. I am grateful for his openness as it had such a tremendous impact on my life.
I decided to tell my husband and then seek professional help. I was 29 years old. I felt relieved. Finally, things would get better. But, I was wrong.
For the next 15 years, I saw several different psychiatrists, none of whom were particularly helpful with regards to treating the depression or the OCD. While they prescribed medication, they did not suggest other forms of treatment such as cognitive behavior therapy (CBT).
The sixth psychiatrist I met, 15 years after first seeking treatment, was kind and compassionate. We connected immediately. I believe this was the beginning of my recovery. He changed the medications which helped to treat my depression and I had never felt better. Nevertheless, the OCD continued to loom over me. The hardest part was talking about it. After a lifetime of not talking about the disorder, I resisted it with everything I had. Slowly, I opened up and that was the beginning of a new life. I had to switch psychiatrists, but luckily my seventh doctor was wonderful and we picked up where I had left off with my previous doctor. He tweaked my medications, and as a result, I experienced almost immediate relief from some of the OCD symptoms. He introduced me to cognitive behavioral therapy and mindfulness, which have been immensely helpful in my fight against OCD. Even though some of the symptoms persist, I feel as if I am finally winning the battle.
I accept that I will always have OCD, but it no longer has me.
Wendy Schlining is 51 and lives in Maryland with her two children. She works as a patient service coordinator at Johns Hopkins Hospital in Baltimore.