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.
By Emily Esterly
It’s weird to live with something your whole life and be unaware of its existence. For 16 years – my whole life – I followed the rules of a game I didn’t even know I was playing. I hid every one of my thoughts and fears from my friends and family. This is just how you think, I repeatedly told myself. It’s normal.
How could I try to explain something that I didn’t even understand? I didn’t want anyone to know how lost and defeated I felt. I told myself a series of lies that I wished I could believe: I’m not sick. I don’t have obsessive compulsive disorder (OCD). I am in control. It’s strange how much control is lost in the pursuit of control. The more control you seek, the more you lose.
This past Christmas I finally surrendered to the disorder manifesting in my mind. I admitted that I wasn’t healthy. I had been sick for a long time and I refused to see a doctor. I was scared to have to put my thoughts into words, to sit in front of a stranger and come face-to-face with my illness.
I have been a prisoner of my mind; the same mind that kept telling me I was free was in fact holding me hostage. The worst part was, after accepting I had OCD, I discovered that my disorder was more complicated and severe than I had imagined. The diagnosis made me look differently at my situation. I was not just experiencing anxiety. I had a diagnosable disorder that was torturing me every moment of every day of my life. I could now see OCD for what it was: a chemical imbalance within my brain. This is a tangible description that clarifies disorders like mine.
Physical and mental illnesses are more similar than they are often thought to be. The idea that physical pain is more severe than mental pain is overly simplified. The pain that manifested in my brain made me feel something so real, I would crawl into a ball on my floor and scream for help. I wanted to experience physical pain so that I could be distracted from what I was feeling mentally. What makes this type of pain so troubling is that no one else can see it, let alone understand it.
OCD can be lonely. Friendship, faith, family, school, and the future are all secondary to the disease that mercilessly controls your life. Sometimes, people with OCD can feel as though they have lost all control. It is not as simple as deciding not to listen to the OCD thoughts. OCD is a monster in our heads that wants us to obey it. OCD doesn’t tolerate compromise or rationality. At some point, my OCD began telling me that the only way to get by and complete the compulsion was to throw my hands, knees, and face against a wall or counter. This painful routine left me with redness and bruising all over. I finally understood self-harm and even suicide. Constantly fighting an elusive battle can feel so tiring that it becomes freeing to be able to label and point to the damage of physical pain.
I am currently in treatment with an OCD therapist and am involved in exposure therapy. This type of therapy gradually exposes people to the things that trigger their anxiety or fears. After rapidly improving in the beginning, I began to resist treatment; I even stopped doing the homework I was given. Being asked to do exactly what I was afraid of seemed like an impossible task – one that every bit of my brain was telling me not to do. After about a month, my therapist told me that I could be discharged for not participating. This scared me as it made me feel like a lost cause. If treatment couldn’t help me, what could? If my therapist didn’t know what to do, who would? I began to believe that I had already surrendered myself to this life, and I began to lose sight of the light at the end of the tunnel. I had lost hope.
Despite everyone telling me that I should continue with therapy, I couldn’t force myself to listen. It’s strange knowing what you have to do but feeling so unable to do it. Exposure therapy is absolutely a real solution to my OCD. It requires so much effort and determination. After each obstacle is passed, another appears to be waiting on the other side. This can feel so defeating and discouraging. But if you don’t persevere, you suffer and get worse. However, persevering means intentionally feeling the tortuous anxiety of OCD.
I have often found motivational stories to be discouraging and defeating. I prefer to speak about my journey before I have reached the finish line. I want to explain my situation from where I see it now. I hope that my lack of understanding and my uncertainty helps calm your soul for just a moment.
I have OCD. I am not yet in control. But right now, I’m still standing, I’m still breathing, and I’m still going. I hope you are too.
Emily Esterly is 16 years old.