This is the first section of the psycho-educational program for sufferers of obsessive compulsive disorders and their families or support people, as the case may be. That may be obvious to many of us, but it will be important to keep remembering that we are all here for the same reasons, and have a lot of the same history.
(In the group setting, we would now discuss administrative items, like introductions, timing of group meetings, fees and confidentiality of other group members).

Definitions for OCD. Maybe we can start out with a definition of OCD - I'm sure you all know what it is in your lives, but we should start with a definition that can be common to all of us. OCD is an anxiety disorder, meaning that it is in a class of disorders that involves anxiety as a major problem. This is profound anxiety, not just the ordinary "I-wonder-if-the-teacher-is-going-to-call-on-me" variety. In addition, the person suffering from OCD is also bothered by obsessions and/or compulsions. What are these? Obsessions are over-valued or horrifying thoughts or senseless ideas, images or impulses that we don't like but can't cast out of our minds. Obsessions usually represent a fear of harm coming to one's self or to others. These normally trigger anxiety, that then results in repetitive or ritualized behaviors that are clearly recognized by the person as unreasonable or excessive. These are called compulsions. The compulsions are sometimes, but not always, related to the obsession, in that the ritual or compulsion is often designed to reduce the anxiety from the obsession. Some people experience obsessions only - thoughts like "That's contaminated" or "I might kill my children" or "I'm really gay" or "I'm really straight" or "I might leave the door open and then I will be robbed." Some others report that they only experience compulsions with no associated obsessions. These people are most likely experiencing compulsions that have gotten separated from the original obsession over time and have taken on a life of their own. Examples of compulsions include ritualized washing, checking, counting, ordering, repeating, or hoarding. There is also something called ritualized thinking, which is different from obsessions in that ritualized thinkers do that to reduce anxiety (that is, they want to think that way), while obsessions are by definition thoughts we don't want to have.

We will talk more later about how people with OCD symptoms fit into a range from normal to very impaired, but let's take time to mention here that everyone has rituals of some kind, and they help us keep parts of our lives organized. Likewise, everyone has thoughts that occasionally come into our minds that we don't like, or that cause us distress. Most of us can dismiss these thoughts with little effort. We will get a good example of this in Chapter 5 when we produce a group hierarchy of anxiety producing stimuli. But for those of us with OCD, these thoughts and behaviors take up a significant part of our attention, effort and time. Thinking about getting rid of these things can feel wonderful at first, as if a great weight will be lifted. On the other hand, it can also be a little scary, since we might end up with a hole in our lives where the OCD used to be. At the end of Chapter 3, we'll give you a homework assignment meant to get you started thinking about what life after OCD will be like for you.

Causes of OCD. Now, what causes OCD? This is a question we hear a lot, and we don't have a very good answer for it. But from research findings and clinical reports we can put together a pretty good picture of the likely influences that act together to produce OCD in someone. We conceptualize these forces as the sides of a triangle (see Figure 2). The first side is biology, also called genetics. There is a lot of good evidence for this as a factor, and you can see this in families where the parent had OCD, or at least OC traits, and one or more of the offspring do too. We know that certain medications make OCD much better, and these are thought to act on brain chemistry. We can also see differences between OCD patients and normals in the metabolism of certain areas of the brain using something called a PET scan. We'll talk more about this later. The second side of the triangle is socialization, also called environment or outside influences. This can be society, family, school, the church or any external stressors. One example of this might be growing up in an environment where there were dire consequences of not doing things "just right." The third side of the triangle is psychology, also called personality. This can be self-image, self-doubt or internal perceptions of the world that may really be different from the environment. An example of this might be when someone learns a rule growing up that "if I just do this thing exactly right, then I'll be a good person." These last two sort of encompass everything outside of biology, and we know that biology isn't the whole picture. The important thing to recognize from this diagram is that not everyone has the same sources for their OCD. Some people may have a longer biology side, and a correspondingly shorter component from social and psychological influences. The same may be true for the other sides. So even though we all have OCD, we're not all the same. You may or may not recognize all these factors in yourself right now, but that isn't necessary in order to treat your OCD.

Who gets OCD? Well, by our current estimates, between 2.5-4% of people get OCD during their lifetime. That may not sound like a lot, but that means that in a metropolitan county of 2.5 million, there are as many as 100,000 people with OCD. Men and women seem to get it equally often. The usual age of onset is either 9-13 or 25-35 years old, but there have been cases reported as young as 18 months old. People with OCD average 10 years of secrecy between the onset of symptoms and their seeking treatment. Why suffer so long in silence? Because people are ashamed of their symptoms, they may be afraid that they are really going crazy or because they feel that they can "will" themselves not to do or think these things. OCD is associated with a lot of guilt and shame, and learning that this is a real disorder with real treatments often helps a lot all by itself. About half of all OCD patients can point to a stressful event in their lives that triggered (not caused) their OCD, like a death in the family or an accident. That means that the other half can't point to any such event. The OCD family has traits that make it distinct from other families in very particular ways; we'll talk more about this in Chapter 3. There is a 75% incidence of depression over the lifetime of OCD patients. You might think, "well that isn't too surprising, considering how much guilt and shame there is and how frustrating the symptoms are." But we don't yet know if depression and OCD are causally related or simply often co exist. Also there is a high incidence of learning disabilities in OCD patients. On the other hand, there is anecdotal evidence that OCD patients are brighter than average, as well. We'd all agree with that, right?

The Different Spectra of OCD. We consider OCD to be a spectrum disorder in at least three ways. First there is a large range of symptoms, as we listed before. People may have just one obsession or compulsion, or they may have many. Additionally, obsessions or compulsions may change over time, so that something that bothered you last month no longer does, or that something new is intruding on your thoughts that never did before. Second, there is a large range of severity of the symptoms, all the way from "normal" to very impaired. Most people that come to educational groups have OCD in the moderate range - if you were "normal" you wouldn't be here because you wouldn't need it, and if you were very impaired you might not be able to leave the house or the hospital. We will come back to the idea of "normal" being at one end of the OCD spectrum in Chapter 5. Finally, we consider this a spectrum disorder because there are related disorders that are not true OCD, but respond to the same medications and to similar types of behavior therapy. Some of these include trichotillomania (compulsive hair pulling) and other impulse-control disorders, body dysmorphic disorder (unreasonable fear that part of your body is abnormal), some eating disorders, and Tourette's Disorder (which is a disorder of motor and vocal tics).

Let's talk for a minute about the range of severity of symptoms. If left untreated, OCD generally gets worse over time, sometimes gradually and sometimes rapidly. We can compare this in diagram form to someone suffering from a drinking problem. The alcoholic may start out functioning highly, slide down until reaching whatever his/her "bottom" is when he/she gets help, and then start to improve in social functioning again, pretty much in a smooth curve. OCD is not quite that simple, but it shares some things with this picture. For OCD we use something called the spiral of contraction and expansion (see Figure 3). Here the size of the spiral indicates the size of the person's social environment; the bigger the loop the more involved in life they are. So someone whose OCD has just been recognized may have a pretty large loop, but as their symptoms get worse, they may not be able to go over to one particular person's house anymore (if that person or house stimulates obsessions). The loops get smaller as they may not be able to go to certain stores anymore, they may have to quit school, quit their job, stop interacting with certain family members, stop eating all but certain foods, and stop going into certain rooms of the house. With each restriction the size of the loops gets smaller, and the person spirals down to a very restricted existence. And finally, when they reach their bottom, they seek help. This help might be in the form of medications or behavior therapy or both. Then they may be able to start challenging some of their previous restrictions by going into those old forbidden rooms, by interacting with previously anxiety-producing people, etc. Here, as they recover, each loop gets progressively bigger. But eventually a strange thing happens: they have a bad day, or a bad week and the loop gets smaller. Luckily, if they continue doing the things that were helping them recover, the improvement continues; they may go back to school or back to work, or they have another bad day. These bad days with their small loops are going to happen. It's just important to recognize that they are just that: bad days. The overall trend is the important one to follow, and that is of fewer small loops, occurring farther apart in time.

We have one more way we look at OCD (see Figure 4). In the innermost circle is your OCD. Then, if you draw a circle around it that represents you, you can see that your OCD is only a small part of you. And if you draw a bigger circle around you that represents your family, and a bigger circle still that represents your environment or society, you start to see that, even though some days it feels as if the only thing there is in your life is your OCD, this really isn't true at all. Your OCD is a significant part of who you are today, but there is a lot more to you, your family and your environment.

Help for OCD-sufferers. Now that we've established what OCD is, what can we do about it? The first thing to do about your OCD is to get educated about it, and one way to start is by coming here and reading or by attending an OCD psycho-educational group. Another place is from books on the subject, and we have a few examples (see List of Resources). The four behavior therapy books listed at the top are all good books not only on what OCD is, but also on what to do about it. They all outline self help behavior therapy programs, and they all use behavior principles similar to those used in behavior therapy programs. Any of these are good adjuncts to this program, or can represent ways you can go about starting a program on your own - all are good, but you only need one and it probably doesn't matter which one you find. Most of these are available at local bookstores; if you have trouble finding them, they can be ordered, or you can check with us about where to find them. The next book is newer, and emphasizes a cognitive or "thinking" method of change that we will describe a little later. "The Boy Who Couldn't Stop Washing" by Judith Rappoport was the first of the popular books on OCD, and is a great collection of case histories, or stories about people with OCD.

You've already discovered one resource for education, and that is The Obsessive-Compulsive and Spectrum Disorders Association. There is also the Obsessive-Compulsive Foundation, another national foundation for the diagnosis, research and treatment of OCD. Both keep lists of OCD centers and of individual providers of OCD-related treatments if you ever need one out of your area. They also publish newsletters on current treatments for OCD, several books and pamphlets on OCD and other useful items. Occasionally TV talk shows, radio shows and newspaper articles also discuss OCD, so there are lots of places people can learn about this problem. And yet, like a lot of other things in life, until it affects us directly, we usually don't pay much attention to it.

In addition to education, other types of help for OCD include medications and behavior therapy. We will devote three chapters to describing how these interventions can be made, who they are best suited for and how to make the best use of them. There are also self-help groups for OCD sufferers and for their support members. Some are professionally-assisted (meaning run by a therapist or psychiatrist), and some are run by the members. There are also local chapters of the 12-step program Obsessive-Compulsives Anonymous, similar in structure to AA. Finally, other types of adjunctive therapy are available. For instance, many people find that having individual therapy to discuss life issues is a good adjunct to doing behavior therapy. Others find that family therapy is helpful if the family system is having difficulty adjusting to either the OCD or to the recovery from OCD. If one's situation gets worse, in-patient treatment (hospitalization) is available; this is often helpful when someone needs close monitoring or more continuous treatment than can be provided on an outpatient basis. And in extreme cases, there is even a brain surgery that can be performed to relieve the most profound OCD symptoms. This procedure is called a cingulotomy, and is only used in the most extreme cases and only when all other avenues of treatment have failed.

Now that you've chosen this particular way of getting education about OCD and it's treatment, let's outline the organization of this program. Chapter 2 will be presenting anxiety and stress reduction techniques, some of which will involve stretching and taking off your shoes. We will also discuss some ways to change your breathing to aid in stress management, and we will discuss "whole body health," the ways that diet, exercise, sleep, etc. can affect anxiety. In Chapter 3, we will focus on the influence of the family on helping or hindering the recovery from OCD. We will talk about how to help, what to say and what not to say, and how the things you as family members may have been doing are really helpful but not useful. Chapter 4 will discuss the biochemistry and medication treatment of OCD. In Chapter 5 we actually start doing Behavior Therapy with what we call the Primer. Here we will introduce the behavioral hierarchy, an individual tool that we help you design, without which you will not be able to do behavior therapy in our program. We will also show you how your anxiety will start, progress and disappear as you do these assignments, and we'll show you a scale used to quantify the amount of anxiety you experience from any particular stimulus. Finally, Chapter 6 will help you fine-tune your hierarchy, use the hierarchy to establish behavioral assignments, chart your anxiety as you do these behavioral assignments, and discuss individual options for treatment. The aim of this program is to prepare you to move ahead for your treatment, whichever you chose to be the right one for you. If it's behavior therapy, we can help you do that, but we will try to teach you to do it yourself. As the old Chinese saying goes, if you give someone a fish, you feed them for a day; if you teach them to fish, you feed them for a lifetime. We hope to teach you to do behavior therapy for yourself.

The second part of a behavior therapy program involves the behavior therapy itself. This can be done in groups or individually. The behavior therapy is based on the model of Exposure and Response Prevention, the model that the literature supports as being the most effective behavioral method of treating OCD. We will talk more about this model when we discuss behavior therapy during Chapter 5.

What can each of you with OCD expect from this program in terms of improvement? The answer to that question varies a lot, and will depend on several variables. Some people don't respond well to behavior therapy, and might have little or no improvement in their symptoms. But on the average, most people experience a 30-70% reduction in symptoms, depending on how much behavior therapy they complete. The more the better, and the literature suggests that 15 weeks is the minimum treatment from which one can expect improvement in an outpatient setting. Many people do much more than that right away, and some come back later for "tune-up" visits just to keep on the right track. However, regardless of how you respond to behavior therapy, you can expect improvement in the management of anxiety, the benefit of knowing that others share your difficulties, and improvement in the functioning of your support system.