Each of us worries occasionally. But suppose your brain’s ability to stop worrying goes haywire? You would get no rest from the everyday worries we all have. And, what if you could never stop worrying? Obviously, you would worry and worry and engage in whatever behaviors that seemed to reduce the worry. You would have OCD.

OCD is classified in the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as an anxiety disorder, one of a group of disorders which have fear and avoidance as their primary symptoms.

The family must be taught to see OCD as an illness which can affect everyone. Only after they are recognized and helped can children, parents, siblings and spouses lovingly and effectively give appropriate support to the person with OCD.

It affects males and females equally, and those with OCD are besieged by irrational fears that don’t easily go away. They often have elaborate strategies to try and decrease these fears. Paradoxically, these elaborate strategies or compulsive behaviors actually result in more, not less, anxiety. While these thoughts and behaviors may seem “crazy,” both to the person with OCD and to the people observing the behavior, a person with OCD is not “crazy.” They are having a normal reaction to fear gone haywire.

Following heredity more than socioeconomic status, OCD strikes the poor and the rich alike, the educated and the uneducated. Although it typically appears in childhood or early adulthood, it can strike at any age. Many believe the famous billionaire Howard Hughes died alone and estranged because of this debilitating and potentially life-threatening illness. Other major figures in history have been identified as probably suffering from OCD, including religious leader Martin Luther, author John Bunyan (The Pilgrim’s Progress), and poet and statesman Samuel Johnson.

Mark Summers, game show host of the children’s show “Double Dare”, recently shared his experiences with OCD on “Oprah” and “Dateline”. He described his terror when he would come home and feel compelled to clean for hours, even after the house was thoroughly clean. And he described his wife awakening in the middle of the night to find him cleaning and straightening all of the “fringe” on the carpets in the house, which he had been doing secretly for years.

What are obsessions?

The term obsession comes from the Latin obsidere, to besiege. Obsessions are recurrent, persistent, intrusive thoughts, images, ideas, or impulses which seem to arise out of nowhere. They can render their victims powerless, as the person may come to believe that they have little or no control over them.
The most common obsessions are repeated thoughts about contamination such as fear of germs, repeated doubts (ruminating whether one has performed some act like checking appliances, doors or windows), a need to have things in a particular order (severe discomfort when objects are asymmetrical or disordered), aggressive or horrific impulses (hurting a child or shouting blasphemies in church or synagogue), or abhorrent sexual imagery (recurrent pornographic images). People with OCD seem unable to “shake the idea” or “let go” of the obsessive thought or idea. They usually doubt their own senses and are unable to trust themselves.
These intrusive and persistent obsessive thoughts and images vary from person to person, as well as from time to time, but they usually revolve around the potential of harm to oneself or others.

What are compulsions?

Compulsions are repeated behaviors or mental acts performed in order to decrease the fear and anxiety generated by obsessive thoughts or images. These ritualized behaviors are performed to manage the fear generated by the frightening and obsessive thoughts. However, these compulsive behaviors create an illusion of control because the rituals don’t achieve the desired relief. The compulsions may initially lessen the anxiety and have a calming effect, but over time this positive effect lessens and persons with OCD find that they must alter and/or increase the rituals in order to obtain relief.
Common compulsions involve cleaning and washing, checking, hoarding, requesting or demanding assurances, repeated actions, counting and ordering. These seemingly irrational behaviors can include hand washing to the point of damage to the skin, washing clothes and surroundings over and over again, or checking doors and appliances to make sure they’re secured or turned off. These activities can consume so much time and energy that people are literally unable to leave their homes. They may have difficulty getting to work.

Different types of OCD
There are many different types of OCD. The most typical kinds of obsessions and compulsions are: washing and cleaning, checking, counting and repeating, ordering, hoarding, ritualizing.

Washers
Some people with OCD are so afraid of contamination from germs that they spend hours daily washing and sterilizing themselves and may insist that the people they live with do the same. They may feel fearful about allowing others to enter their homes; they may refuse to leave their homes; or they may even be unable to touch those they love for fear of contamination.

Checkers
The second most common group of persons with OCD are driven by a need to prevent a disaster they fear may happen as a result of their careless actions. They may obsessively worry that they have hit someone with their car and will stop in terror and retrace their route many times. They check their cars for dents and scratches and the pavement for any signs of blood. Still, they doubt their own senses and must return to check again and again.
Fearing they have left a burner of the stove on or some other appliance running which will set the house on fire and hurt someone, checkers will return again and again, sometimes dozens of times a day, to check and make sure they have turned off all the appliances, locked the doors, or turned off the faucets and light switches. They fear that, as a result of their negligence, the house will burn down, a burglar will enter and rob and hurt their family, or the house will flood, drowning everyone. Those plagued with checking compulsions don’t trust themselves and must try to reassure themselves over and over again—or sometimes be reassured by others—that all has been done correctly so that no disasters will occur.

Repeaters
Some persons with OCD have such unpleasant sexual and/or religious thoughts that they act out elaborate and exhausting rituals to compensate for these frightening or “sinful” thoughts and ideas. “Repeaters,” when viewed in a religious context, are said to be suffering from scrupulosity. Priests, ministers, and rabbis have noted over the centuries that some people in their churches indulged in excessive prayer, unreasonable doubting and extreme fastidiousness.
Other activities “repeaters” do to ward off catastrophe include repeating an action until it feels just “right” or repeating a physical or mental ritual until the “bad” thought goes away. Trying to prevent yourself from having a thought is a losing battle and the type and frequency of the compensating compulsions only increase over time. For example, try not to think of pink elephants.

Orderers
Arranging possessions in a precise, exact manner is another way persons with OCD may attempt to exert control and to drive away their fears. “Orderers” are driven by a need to be sure things are arranged in a certain way. This may include closets, contents of drawers, pictures and/or furniture. Coming back in a room and discovering that something has been moved, however slightly, can cause great distress and even anger in individuals who have this type of OCD.

Hoarders
Hoarding is still another common form of OCD. “Hoarders” hang on to items out of fear that they may part with something valuable that they might need someday. People with this variation of OCD and their families are sometimes forced to live in progressively smaller spaces as their possessions fill up their house or apartment. When taken to the extreme, “hoarders” can force other family members to move to the basement or even outside.
OCD can be treated
Effective treatment for OCD is available. Current research in the United States indicates that OCD does not respond to “talk therapies,” such as insight-oriented psychotherapy, which explore the underlying causes and dynamics behind symptoms. While traditional psychotherapy is often not useful in reducing the OCD symptoms, it may be useful in helping people with OCD cope more effectively with the illness, their relationships, and their lives. Conventional wisdom among OCD specialists is that OCD is not cured. Instead, it is treated by managing symptoms, so that the person can lead an essentially normal life.

Today’s treatment is usually:

• A combination of drug therapy and behavior therapy
• Cognitive therapy
• Rarely, electroconvulsive therapy
• Very rarely psychosurgery

Drug therapy has been helpful for many. In the brain, nerves send messages through substances called neurotransmitters. Serotonin, one of these brain messengers, appears to be involved in OCD. Thus, the most successfully used drugs in the treatment of OCD are those that affect the serotonin activity in the brain. The most common of these drugs are clomipramine (Anafranil), fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil) and sertraline (Zoloft). All of these seem to be effective in reducing the obsessive thoughts and compulsive behaviors of OCD. Often, the medications provide enough reduction in anxiety to allow the patient to progress with other forms of therapy.

Behavior therapy, in the form of “exposure and response prevention,” is a frequently used technique. The person with OCD is encouraged to gradually expose himself to the fearful situations or behaviors which would usually cause obsessive thoughts and compulsive urges; and then to learn to resist these compulsions. For example, those who endlessly check the locks on their doors would be encouraged to try to lock them once and then to cope with the feeling of panic that follows for a pre-determined length of time. These urges will lessen with time as the compulsions are resisted, but never underestimate how difficult it is for OCD sufferers to begin the initial efforts to prevent the compulsive response.

Cognitive therapy works to help patients learn new ways of thinking about and responding to the thoughts and urges which come with OCD. Those with OCD learn to recognize certain thoughts as coming from their illness or “stuck brain” and to replace those thoughts with more positive ones. They also practice challenging the seeming absolute truth of these beliefs. One recognized expert in the treatment of OCD encourages his patients when they think these thoughts to tell themselves, “It’s not me, it’s my OCD!” Remember also that OCD is not the sum total of who the person is anymore than someone with cancer is just his or her cancer.

Many OCD treatment professionals find a combination of proper medication and behavioral therapy to be of great help. Brain scans show that either method, or both in combination, alter brain chemistry in measurable ways. These treatments seem to help the brain to be less “stuck” in repetitive thought patterns. Medication and behavior therapy in combination work very well for more than 70 to 80 percent of OCD patients.
As with many illnesses, and especially OCD, early diagnosis and treatment maximize the recovery.

Family members as enablers

Like co-alcoholism or codependence, there is a parallel disorder that strikes those closely related to and impacted by the person with OCD. It unfolds as family members struggle to adapt and to protect the family, and thereby inadvertently “enable” the person with OCD. Because the family atmosphere is typically crisis oriented, often explosive, and at times abusive, the spouses, the children, the parents, the brothers, the sisters, the grandparents, even the friends, can all develop emotional, mental, physical and spiritual problems.

OCD is an illness of denial, secrecy and shame. Like sufferers of OCD, “para-OCDs” (a term I use for family members whose lives are impacted by a person with OCD) often endure their disorder alone and isolated. Frequently, its sufferers are not seen as having a problem. Consequently, its millions of sufferers are ignored and minimized by the healthcare fields.

Without effective intervention and outreach to the family, damaging effects can range from mild to incapacitating. Affected family members need to know that they are neither sick nor neurotic. They are simply traumatized.

Troubled families

In general, a troubled family is easy to spot. People are uncomfortable, their faces look strained and tense, their voices are loud and aggressive, or meek and timid, and there is little evidence of joy, affection and nurturance. Unspoken rules guide what is permissible and what is not. Isolation and disconnection from family members and loved ones exist inside and outside the immediate family. Communication is limited and often indirect.

The atmosphere or emotional tone in a family under the influence of OCD will vary depending on the stage of awareness and healing in which the family finds itself. Before recognizing the need for recovery, often both the person with OCD and the family with OCD live in ignorance and denial. Failure to recognize the OCD and to acknowledge its effects creates the most damaging family environment. Yet, this may be one of the most common emotional atmospheres in homes where OCD resides.
Such a home or “family culture” can be characterized by chronic shock, chronic loss, chronic grief and chronic exhaustion. Although the person with OCD does not consciously intend to, he or she can dominate the family through stubbornness, intimidation, embarrassment and fear. Everything and everyone can revolve around the person with OCD. All decisions, from minor ones like what and where to eat, to major issues like rearing children or purchasing a house, can become funneled through the illness.

Walking on eggs

As a result, family members fear doing anything that might set off the person with OCD. Because obsessions and compulsions are illogical and variable, some days are worse than others. You may know some of the things that set off the OCD, but since OCD is so unpredictable you can never be sure. Therefore, stress and fear can be staples in the home. The atmosphere can be crisis oriented, with everyone waiting for and reacting to the next crisis. Family members are afraid to relax, because they are never sure of what may happen. They can feel besieged and harassed by the illness. When this happens, they are in a state of chronic shock.

Chronic loss

OCD invariably involves some sort of loss, whether:

• a loss of a complete relationship with the person with OCD
• a loss of a social life
• a loss of personal time and energy due to the time spent dealing with OCD
• a loss of leisure
• a financial loss
• a loss of privacy
• a loss of control
• a loss of hope

The family culture is saturated with chronic loss. One of the consequences is a constant feeling of being alone.

When these losses aren’t acknowledged, those under the influence can experience chronic grief as well. The frustration and helplessness that follow can create an atmosphere of guilt and subsequently resentment and anger — all formidable burdens on any family. To make matters worse, the secrecy can create an atmosphere of shame.

Because OCD can rear its head at any time, there is a state of constant expectation that if something bad can happen, it will. The result, of course, is chronic exhaustion.

Given this atmosphere of ongoing stress, loss, grief and exhaustion permeating the family, it is easy to understand why family members under the influence of OCD can feel any or all of the following: helpless, confused, frightened, angry, manipulated, controlled, terrified, hesitant, tentative, cautious, indecisive, guilty, humiliated, sad, bad, crazy, protective, embarrassed, ashamed, distant and worried. And the result of all these powerful and uncomfortable feelings can be a sense of drowning in emotion.

Further, the heaviness of the atmosphere can be compounded by the secondary effects of other concurrent disorders such as substance abuse and depression as well as life’s problems such as separation, divorce and desertion.

How family members adjust

Without a clear understanding of what’s going on or how to help, everyone is trying to cope on his or her own. Like all families, families under the influence of OCD often adjust by creating their own rules and roles to adapt to the chaos. These rules and roles create some sense of control over the unpredictability that is often characteristic of a family under the influence of OCD.

When the family lives by rules and roles designed to avoid confronting the effects of OCD, they adjust to the OCD. For example, family members may engage in checking or other enabling behaviors. Adjustment in this sense is illusionary, because what is actually occurring is an unhealthy accommodation to the strange and bizarre behaviors of the person with OCD. This type of “adjustment” can create isolation among family members who no longer communicate or experience intimacy with each other. Further, this type of adjustment can actually perpetuate the OCD, break the family apart or cause problems in family members. What was originally designed to be a positive, helpful response to an acute crisis becomes a negative, unhealthy reaction to a chronic situation.

However, the adjustment to this unpredictable environment doesn’t have to be damaging if there is help in managing the repercussions OCD can create. By changing or transforming the family, the suffering can end and members can adjust in a positive way. They learn to move from “caretakers” to “caregivers.” They stop reacting to the OCD and start responding to the situation.

Rules that guide a family with OCD

Every family has rules. Rules are the unspoken and spoken guidelines which instill attitudes, expectations and goals for a family; determine who has the power and authority; and dictate how, what, when, where, and in what ways, members communicate. Rules either detract from the family functioning or enhance it. Before recovery, rules tend to be dysfunctional and decrease the well-being of all family members, while in the later stages, revised rules become more functional guidelines and contribute to stability, safety and security.

Dysfunctional rules tend to be rigid, discouraging change and making little or no room for differences in people or events. Dysfunctional rules are unrealistic, impossible to keep and encourage dishonesty, deception and manipulation. They also limit communication and create isolation and disconnection. “Never raise your voice,” “Don’t trust other people,” or “Never share your feelings” are examples of dysfunctional rules which weaken the family.
Prior to the recovery of a family under the influence of OCD, the number one, and often implicit rule, is that the OCD is the most important circumstance in the family. That’s why so many decisions become organized around the OCD. A second rule is that everyone in the family must be an “enabler.” This means everyone must cover up, take over the responsibilities and accept the “rules” of the OCD. No one may say what he means or mean what he says, and no one can talk about what is going on either to a family member or to someone outside.

Families under the influence of OCD become very invested in keeping things the same: the status quo must be maintained at all costs.
In addition to these general rules, there may be specific rules which apply to particular families. For example, in some families under the influence of OCD, there may be little room to walk into a room or even into the house because there is so much clutter, while in other families you must shower or hose yourself off before entering the house or touching anything. These specific rules are overt or readily evident. However, there are covert or hidden rules which might include, “Don’t challenge,” “Don’t say the obvious,” and especially, “Don’t do anything that might trigger the OCD.” All these dysfunctional rules are rigid and unhealthy. They restrict choice and growth and may prevent you from exploring alternative behaviors. In addition, they may hinder the recovery of the person with OCD.

The foundation of healing

Functional rules, on the other hand, foster direct communication and lead the way toward accountability and responsibility instead of blame and denial, two aspects that drive dysfunction. “Respect others’ rights,” “Honor privacy,” or “Pick up after yourself” are examples of functional rules. Families in the later stages of healing have functional rules. They work to make the family stronger. They are a part of the foundation of all healing.

Roles that family members develop

Research in the field of family therapy shows that family members behave in predictable ways when they are under stress. Since life in a family under the influence of OCD can be unsettling for both adults and children, family members develop roles as a way to cope and feel more in control. These roles have been given various names by different researchers. Some common roles people learn to play are: the responsible one (or hero), the adjuster (or lost one), the placater (or mascot) and the scapegoat (or the person who acts out). In families with OCD, the roles are more rigidly fixed and are enacted with greater compulsion and intensity than in most families.

The hero

The “responsible one” is the person in the family who, in order to feel safe, develops a rigid sense of control and says to him/herself, “In the midst of these compulsions and rituals, I’ll handle it and take care of it.” These people often take over the duties and responsibilities of others, especially those of the person with OCD. They may cover up and protect the person with OCD. These overly responsible people are also referred to as caretakers. If this role is adopted by children, they become the super responsible children, often the marvel of their family and the neighborhood.

For example, Marjorie, age ten, is the oldest child in a family in which her mother continually obsesses that she has run over someone with her car. To keep things more stable, Marjorie takes on a lot of responsibility for managing the family. She often does the laundry, cooks the meals, helps her brothers and sisters with their homework and makes sure everything is running as smoothly as possible.

She seems mature beyond her years and is often praised by family and friends for being such a grown-up young lady. On the surface, this may seem like a desirable trait, but this sense of over-responsibility is robbing her of a normal childhood. She’s always worrying about her mother and father and doesn’t have much time to play or to think about her own needs. Unfortunately, while worrying about others, she never has a chance to be a kid, to play with her friends and to spend time in childhood activities.
She pays a price for her role of the “responsible one.” She feels cheated, resentful, angry and socially inept. The “responsible one” might be called the “hero.” The hero attempts to make up for the family’s weaknesses by super achievement. However, heroes can feel confused and inadequate inside even though they look great outside. (It is critical to distinguish the term “hero” in this context from the use of the term “hero” or “heroine” in their mythological sense

The adjuster

The “adjuster” attempts to cope with the trauma in the family in a different way. The adjuster’s guiding thought is, “In the midst of the OCD, I’ll ignore it.” Feeling powerless in the face of the OCD in their parent, spouse, child, or sibling, adjusters cope by detaching, walling themselves off from their feelings and reactions to the unsettling home atmosphere around them. These are people who, in the midst of disturbing and confusing OCD rituals, seem not to notice, continuing their activities no matter what is happening. The person with OCD might be performing rituals and acting irrationally and the adjuster continues to read, watch TV or eat dinner as if nothing unusual were going on. Ignoring the person with OCD’s irrational behavior can be a positive way of adapting to the trauma by distancing oneself. However, for adjusters, not noticing becomes a way to dissociate from the feelings of frustration and discomfort they have about the irrational behavior, and their ability to identify and express feelings begins to deteriorate.

The lost one

Similar to the adjuster is the role of the “lost one” who tries to help or improve things by not being a problem. Like the adjuster, this person makes no demands on anyone and prefers to be a loner. The “lost one,” especially if a child, often spends a lot of time alone, playing quietly in his or her room, feeling lonely and forgotten. The lost one pays a price for this coping strategy by feeling unseen and unloved, even irrelevant.

The placater

Another role is that of “the placater,” whose guiding principle is “In the midst of obsessions and compulsions, I’ll fix it and make it better.” These people, whether adults or children, try to “fix” or take care of others’ feelings, worries and troubles — everyone’s except their own. Placaters in a family with OCD attempt to keep tension and stress levels down by trying to please everybody and often apologize for everything whether it’s their fault or not. It’s as if they hope this strategy will keep the person with OCD in better control and thus the home environment more comfortable.

The mascot

Similar to the placater, “the mascot” tries to relieve the tension and lighten up the atmosphere by doing something funny. It’s as if mascots try to cover up their pain and confusion with humor and jokes, always performing. The price they pay for this cover-up is a well-developed false self and loss of a real self.

In families with OCD, father or mother might become a “rager,” always flying off in an angry tirade in response to something, or an “avoider,” refusing to confront or even discuss emotionally challenging issues. Other family members, spouses or siblings may enable those with OCD by protecting them from threatening situations, covering up for them or helping them with their rituals.

In an episode of Oprah dealing with OCD, there was a woman whose fears of contamination were so severe that she was afraid to eat. She insisted that her husband and her mother go through an elaborate series of rituals in order for her to eat anything. The purchase, preparation and presentation of all her meals had to be carried out in a precise manner or she was literally too frightened to eat. These exaggerated behaviors exacerbate the formation of unhealthful roles that family members adopt.

Family members under the influence of OCD do not choose these roles consciously. They don’t sit down and say to themselves, “Our family is in a lot of trouble. I think I’ll try to protect myself and make things better by picking a different way to be.” These roles are developed unconsciously as a survival technique. Just like the mascot discovers that his humor seems to temporarily distract everyone, other family members stumble on seemingly effective ways to get through life while living in a chaotic and unpredictable atmosphere.

Family members change slowly to adapt to the OCD and are often unaware that they’ve developed rigid ways of reacting and behaving. Only when they become aware of these patterns can they begin to discover and practice new and healthier ways of responding.
Unfortunately, dysfunctional roles can reinforce the unhealthiness of the family and limit the freedom and growth of the individuals. Children who take on such roles often carry them into adulthood and play them out in their own families. For both children and adults, these roles are progressive. Unless interrupted, they become more and more rigid and encompassing, and they impact the atmosphere of the home and its members.

Suffering in silence

As you can imagine, these increasingly rigid rules and roles color the atmosphere of the family. Everyone may feel on edge, as if they’re walking on egg shells. They may become afraid to try new things. Many family members suffer in silence and isolation, often feeling confused, scared and bad. They distance themselves from their own feelings and deny their own needs. Their imagined fears, and often real-life experiences, are that when they do express a need or say how they’re feeling, the need doesn’t get met, or saying how they feel just seems to make things worse by fueling the obsessions or compulsions. In fact, they’re often blamed for making matters worse.

Family members begin to worry that they will say or do something that will somehow “set off” the OCD. The needs and feelings of the person with OCD always seem to come first. Family members become bound by the OCD as they restrict their actions and their feelings more and more. The result is a lose-lose situation. Everyone loses: the loved ones lose as does the person with OCD.

Unreasonable demands

Family members often learn to tolerate a multitude of intolerable situations. One family was required to undress on the back porch before they were allowed to enter the house because the person with OCD was terrified of contamination. They all did this without realizing how unreasonable the demand was and probably thought that what they were doing would in turn help the person with OCD. In another extreme case, because the person with OCD could not throw out any paper products, family members were forced to sleep outside in the garage as the house was filled with the OCD person’s paper “possessions.”

In a healthy family, people are free to express what they are feeling, talk about what’s happening around them and grow according to their needs. They are free to organize their lives around their own needs, not solely those of another.

Help is essential

Without help, the illness progresses and the family atmosphere or culture can become increasingly alienating. Rigid rules and roles, while they seem to produce safety, only support the OCD and cripple the loved ones. These rigid and unspoken rules and roles are simply ways to survive the tyranny of OCD by maintaining the status quo, not a way to thrive and grow for the family or for the family members.

Living with OCD is an abnormal situation when the family system isn’t working toward recovery.

At its extreme, the family system is truly suffering. Suffering is endless. It has no beginning, middle or end. Pain, on the other hand, is limited. It has an onset and an ending. One important task on the journey to recovery is to move from needless suffering to normal pain.

With accurate information, it is possible to begin to understand what is happening in the family. Knowledge is the first step to restoring health. And, as the family moves along the path of recovery, they may experience relief and even exhilaration as they learn to meet the challenge of living with OCD.

Herbert Gravitz, PhD, is a licensed clinical psychologist, family consultant and systemic traumatologist in private practice in Santa Barbara, CA. This article is excerpted from his book, Obsessive Compulsive Disorder: New Help for the Family, with permission of the publisher, Healing Visions Press.

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