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.
Obsessive compulsive disorder (OCD) is treatable and I am living proof.
Now 34, I have endured OCD since high school, including three major episodes coupled with depression and suicidality. I know what it’s like to believe recovery is impossible. Waking up to face another day of on-going automatic thoughts is horrific. I’ve spent years besieged by intrusive thoughts where sleep was not even an escape. The anxiety kept me awake and this only made the cycle of torture continue.
OCD is better understood today than it was 15 years ago when I first began to visit different doctors and psychologists to explain my symptoms. And even then, the symptoms I experienced were difficult to associate with a specific disorder: upset stomach, rapid heart-beat, inability to concentrate, blurry vision, constant fatigue, inability to sleep, racing repetitive thoughts, and no longer finding enjoyment in activities which once brought me joy. Due to this, none of the specialists I saw diagnosed me with depression or OCD.
Though the OCD and depression remained undiagnosed, it continued to impact my life. While at college, I had to take a year off as I experienced frequent panic attacks and could not think straight. Trying to study while being flooded with anxiety was impossible. Any place I had a panic attack I would thereafter avoid which only made the problem worse. It was frightening as I had no idea what was wrong with me, and medical professionals were unable to diagnose my condition.
When I tried to explain what was going on in my head, many people thought I was either joking or making it up. Some people even laughed. As I did not have outward visible compulsions such as hand-washing (which is commonly associated with OCD), it made it harder for people to understand.
When I completed college and was preparing to enter law school, I experienced another year of obsessive thoughts and depression. Though I still had not been diagnosed, I took the initiative to attend a program at Mass General Hospital (MGH) for OCD, and finally I realized that this was in fact what I was suffering from. At MGH I learned about exposure and response therapy, which is effective for treating OCD; it helped me tremendously. I would write my thoughts on paper or record them. Reading/listening to them over and over bores the brain by making you confront your fears instead of avoiding them. After a year of therapy and the right medications, I returned to work. With a desire to pursue a new career, I also began attending night classes.
Though I have made progress with managing my OCD, it continues to be a part of my life. Recently, because of OCD and depression, I had to take a leave of absence from my job. During this time, I endured two stays at McLean Hospital’s acute unit, each time for a period of two weeks. I attended their OCD program and again confronted my fears with exposure and response therapy. I was certain the only way out of the hell of my repetitive thoughts was to kill myself; but I hung in there because I knew if I did kill myself, I would have hurt those closest to me. I began electroconvulsive therapy for depression, which I found extremely helpful. From my personal experience, I feel that I had to first treat my depression in order to treat my OCD.
OCD is like having two brains: a “normal” brain and an OCD brain. Think of OCD as a separate entity; you are not your thoughts. People with OCD have the same thoughts as people with “normal” brains, but our brains get stuck in an uncontrollable loop we can’t stop. It is uncontrollable because no amount of reassurance from someone else or self-rationalizing will help.
Understandably, it may be hard for people to fathom unless they have experienced something similar. Imagine if someone says: ‘try not thinking about a pink elephant for one minute.’ Of course, it is very difficult to not think about a pink elephant. Now, imagine instead of a pink elephant, it’s a thought that makes you feel startled or scared all day long. Combine those feelings with a sadness so deep, you don’t want to wake up anymore.
I believe that it is a waste of time and energy explaining your thoughts to people who refuse to understand; it is much more useful to talk to a therapist who understands OCD and wants to help. I was lucky to find a good therapist through the International OCD Foundation website.
OCD waxes and wanes over a lifetime, but life is worth living and it can get better with treatment. If you believe you have truly reached rock bottom, please don’t ever give up. Seek the help you deserve. I did and I’m still here.
Jonathan is a web developer living in Boston, Massachusetts. He wants people to know that no matter how horrible they feel, they can get better.