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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.

13 Comments

    • Zejna Halilbasic

      What a great article and I am so happy for you! I also suffer from ocd thoughts and I am really desperate.
      It is a great tip to record yourself and listen to it, I did immediately and will listen to it every day. Is there anything else you can recommend to do? I feel so hopeless, I really want to change my situation. One more question can ocd be cured? Are you completely symptom free today? Please give me some hope. Thank you so much in advance!

      Reply
      • Jonathan

        OCD can’t be “cured” but I believe if you stick with ERP it can come pretty damn close. ERP takes time and recovery is not linear. I have ups and down in my recovery. However, in my experience, I have habituated to every intrusive thought I’ve suffered from, and there are many. I can go weeks/months without them popping up and when they do, it’s a blip on the radar and it’s gone.

        It’s not easy, you have to do the homework. Everyday for an hour I’ll listen to my recording until I habituate. I wish I wasn’t like this and have felt hopeless, but OCD is definitely treatable and exposure response prevention does work if you invest the time.

        I’m not symptom free, but pretty damn close and I can say my life is better having been through this shit. It made me appreciate things more. I wish I didn’t have it, there’s nothing fun or cute about being OCD. Hang in there.

        Reply
    • red rob

      Thank You, Johnathan. It helps a lot already knowing that I am not alone… Pure OCD has been tormenting me, too… I am on meds for depression (with anxiety) and borderline personality disorder. The struggle is continuous and I learn significantly through my psychotherapy.

      Reply
      • Hi Rob,

        Yes, I don’t have outward compulsions either, mine are mental. I’m still practicing ERP and challenging OCD everyday. Hang in there.

        http://webeatocd.com

        Reply
  • Sarah Laubinger

    Jonathan is living proof that as awful depression and OCD can be they are not insurmountable. As a society we have not done a very good job understanding how dihabilitiating depression and OCD can be. I believe Jonathan is here to help share his story of how little by little a person suffering can overcome the pain and confusion he’s felt for most of his life. I also feel very strongly that his suffering has been deep but not without purpose. In every tragedy, there is triumph and something to be learned. For me, I’ve learned from his experience and want to encourage other family of loved ones suffering from depression to leave judgement at the door, and put to work what mankind was intended to — which is to liove without condition or prejudice. Jonathan is more brave, bright and brilliant than most — he deserves everyone’s love and respect so he can do all of the great things I know he’s capable of … XO

    Reply
  • Amanda Guarino

    This is a story much like my own, and strangely enough I also live in the same area as the author. It’s refreshing to see that someone else has gone through, and is still going through the exact same thing as me.

    Reply
    • Jonathan

      There are a lot of people with OCD out there, and thankfully it is more understood today than in the past.

      Approximately 2.3% of the population between ages 18- 54 suffers from OCD, which out ranks mental disorders such as: schizophrenia, bipolar disorder, or panic disorder. In the U.S., approximately 3.3 million people have OCD,

      Reply
  • Brigit Rotondi

    Thank you Jonathan, The ocd you describe sounds alot like what I go through. It is very difficult at times. The worry thoughts are so hard to just accept and let go of. What has helped me a bit has been dialectical behavior therapy and skills practice. Also removing myself from situations . I do get discouraged with treatment and coverage. This has been a major feat with me. Can I ask how you dealt with it? I have found a great therapist but not able to find a Dr. What other advice would you give someone going through similar? Thank you, B

    Reply
    • Jonathan

      Hi Brigit,

      I’m not entirely sure what you mean by coverage? You can’t find a psychiatrist?

      The best things I can recommend is exposure therapy, over and over and over. I record my obsessions and listen to them repeatedly; sometimes it takes months. It’s not easy or fun, but I’d rather not live with OCD. OCD is my worst enemy and I do everything I can to improve every day. I too get discouraged some days, however, I persevere.

      The harder thing to do and the right thing to do are usually the same thing. Stick with a program, do daily ERP; the best way out is always through. Some books I can recommend are:

      1. The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad Thoughts
      2. Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty
      3. Daring to Challenge OCD: Overcome Your Fear of Treatment and Take Control of Your Life Using Exposure and Response Prevention

      Reply
  • Diana Brown

    Thank you Jonathan. My son has OCD and this helps me so much. Every day is a new day!

    Reply
    • Jonathan

      You’re welcome. I hope he gets better.

      Reply
  • Christine Dimoulis

    Thank-you for sharing this awesome article about your struggles and explaining your OCD/depression with me. I now have a greater understanding of what you have been going through. I am so proud of you Jonathan. Your perseverance and determination to keep using exposure and response therapy so you can face each day is well stated as a working therapy. I admire your commitment to face the OCD/depression using the tools you have learned to keep moving on in-spite any possible set backs. I am glad you know you are loved by so many and you add life to us in ways you have no idea. I see you helping others with OCD/depression as evident with the responses to your article. Thank-you so very much! Love you, Christine

    Reply

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