Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty, Updated Edition - Softcover

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Jonathan Grayson, PhD, is the director of the Anxiety and OCD Treatment Center of Philadelphia. A nationally recognized expert who has worked with OCD sufferers for more than three decades, Dr. Grayson was awarded the Patricia Perkins International OCD Foundation Lifetime Achievement Award in 2010 for his work with OCD. In 1981 he organized the first OCD support group in the country, to which he still donates his time. He lives in Philadelphia.

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Acknowledgments

Introduction

I was standing in an open field, looking back into the forest and brush, watching the others struggle their way out. It was raining. I had purposely taken everyone off trail through trees and undergrowth so densely packed that forward movement was a slow process of stepping over and through bushes and being on guard for branches snapping back from whoever was in front of you. Melanie, the fourth person to emerge into the freedom of the clearing, shouted, “I’m having a great time!” The photographer documenting our trip for People magazine snapped a picture. Seeing Melanie’s joy, it was hard to connect this woman with the one I’d met seven months earlier at my former center, The Anxiety and Agoraphobia Treatment Center in Philadelphia.

When I met Melanie at our first session, she was an extreme suicide risk— all medications in her home, even aspirin, had to be locked in a safe. Her parents wouldn’t permit her to carry more than two dollars at a time, fearing that access to more money would enable her to commit suicide with over-the-counter medications. She was an attractive and articulate twenty-nine-year-old with a fifteen-year history of both obsessive-compulsive disorder (OCD) and body dysmorphic disorder (BDD). Her OCD focused on issues of perfection. When taking notes during class, if there were any cross-outs, stray marks, folds, or creases in her notebook, she would feel compelled to discard the page. Similarly, she wouldn’t tolerate any such marks in her textbooks and would cope with such “imperfections” by not using the text. Though she found school a nightmare of anxiety, Melanie did well in the courses she managed to complete. But many of her attempts to go to school resulted in anxiety and depression severe enough to require psychiatric hospitalization.

Melanie also felt as though she was horribly ugly—so repulsive that she believed it was a burden for those around her to tolerate her presence. This is what it feels like to have BDD, a form of OCD in which sufferers can’t stand their own appearance. She spent endless hours agonizing over her hair and makeup, trying to get ready to go out, but often wouldn’t be able to leave the house. For more than fifteen years, she had no memory of ever being free from her anxiety and despair.

Yet here she was on a camping trip. And not just any trip, but one that I’ve been running almost every year for more than two decades as a therapeutic journey for OCD sufferers. Even non-sufferers might find it difficult to spend a weekend sleeping in tents, using latrines without the benefit of running water, and taking torturous hikes through the mud and muck. For the OCD sufferers I treat, especially those with contamination fears, the accomplishment of making it through such an experience is often nothing less than a tremendous breakthrough in their recovery.

This camping trip is just one of the approaches I’ve found to be of use in working with OCD sufferers during the last twenty-five years. Earlier in my career, as a faculty member in the Department of Psychiatry at Temple University’s School of Medicine, I was part of a research team studying the treatment of OCD. Though our research excelled at delineating the mechanics of treatment—our results and findings regarding the behavioral techniques known as exposure and response prevention are still the core of today’s treatment for OCD—I felt the need to go beyond the actual treatment process.

I wanted to address issues our research was ignoring, such as relapse prevention. So in 1981, with an OCD sufferer named Gayle Frankel (who was then the current president of the Philadelphia Affiliate of the Obsessive-Compulsive Foundation), I started the first OCD support group in the country. Called GOAL (Giving Obsessive-compulsives Another Lifestyle), our group was more than a place for sufferers to share their stories. Its purpose from the beginning was to help sufferers understand their OCD and to make and maintain treatment gains.

Helping people understand their OCD is the key to my treatment approach. One of the greatest problems for those of you who suffer from this disorder is the disparity between your inner world and the outside. For all of us, the person we show the world is not exactly who we are; we all have our private thoughts, opinions, and secrets. But, for you, the gulf between your private and public selves is greater. No matter which aspects of your OCD everyone else sees, you and I know it is only the tip of the iceberg. You understand the pain and frustration of being locked in a strange world in which you know that your thoughts and behaviors make no sense. It is as if you have simultaneously lost your mind and, at the same time, are so sane that you are a witness to the loss. You are an expert at knowing what OCD feels like, but fully understanding your plight is another story.

You may have heard many explanations for your OCD—it’s a chemical imbalance, it’s a learned behavior. These are explanations, but they are no better than saying a car works because it has an engine. Knowing that a car has an engine doesn’t tell you how to fix a car that’s not running. For you to fully understand your OCD, a meaningful explanation needs to be more than logical and scientific. It must address your feelings and experience and answer questions such as: I’m staring at the stove and can see that it is off. Why don’t I know that it is off? If an explanation touches you, and you can’t help exclaiming, “That’s me!” then you understand.

If you suffer from OCD, you have probably seen many different professionals, tried numerous medications, and read any number of books dealing with anxiety and OCD. This book, however, is different. It is not simply a cookbook explaining how to recover from OCD, because overcoming OCD requires more than simply following instructions. Treatment without understanding is like painting by numbers; there will be some improvement and symptom reduction, but you want more.

To go beyond symptom reduction and stop OCD from controlling your life, I believe you’ll do better as a master artist. The “master artist” has the understanding to create and fashion his or her own work. This book offers the self-guided version of the treatment program used at my center, where helping sufferers understand their OCD is the crucial first step to recovery, because they can’t truly agree to therapy if they don’t understand their OCD and the treatment process.

Your success depends upon your becoming an equal partner in designing your recovery program. As you’ll find in this book, with understanding you won’t follow a treatment protocol, you’ll design your own. Copies of the forms, worksheets, and other materials found in this book are also available for free download from www.FreedomFromOCD.com.

Part 1 of this book, Understanding Obsessive-Compulsive Disorder, will help you to truly understand your OCD experience. You will begin to answer the questions that plague you—for example: How can I not know what I know? Why can’t I stop ritualizing? In making sense of your OCD, you will begin to realize that this disorder doesn’t set you apart from the rest of humanity. You will come to recognize that the difference between you and non-sufferers is a matter of degree, not unlike the differences between social and problem drinkers. In the case of drinking, getting drunk isn’t the problem; it is how often and how much it interferes with your life. For OCD, it is not rituals, seemingly irrational thoughts, or anxiety that differentiates the sufferer from the...