What is OCD?
Obsessive-compulsive disorder (OCD), one of the anxiety disorders, is a potentially disabling
condition that can persist throughout a person's life. The individual who suffers from OCD becomes
trapped in a pattern of repetitive thoughts and behaviors that are senseless and distressing but
extremely difficult to overcome. OCD occurs in a spectrum from mild to severe, but if severe and left
untreated, can destroy a person's capacity to function at work, at school, or even in the home.
The case histories in this brochure are typical for those who suffer from obsessive-compulsive
disorder--a disorder that can be effectively treated. However, the characters are not real.
How Common Is OCD?
For many years, mental health professionals thought of OCD as a rare disease because only a small
minority of their patients had the condition. The disorder often went unrecognized because many of
those afflicted with OCD, in efforts to keep their repetitive thoughts and behaviors secret, failed to
seek treatment. This led to underestimates of the number of people with the illness. However, a
survey conducted in the early 1980s by the National Institute of Mental Health (NIMH)--the
Federal agency that supports research nationwide on the brain, mental illnesses, and mental
health--provided new knowledge about the prevalence of OCD. The NIMH survey showed that
OCD affects more than 2 percent of the population, meaning that OCD is more common than such
severe mental illnesses as schizophrenia, bipolar disorder, or panic disorder. OCD strikes people of
all ethnic groups. Males and females are equally affected. The social and economic costs of OCD
were estimated to be $8.4 billion in 1990 (DuPont et al, 1994).
Although OCD symptoms typically begin during the teenage years or early adulthood, recent
research shows that some children develop the illness at earlier ages, even during the preschool
years. Studies indicate that at least one-third of cases of OCD in adults began in childhood. Suffering
from OCD during early stages of a child's development can cause severe problems for the child. It is
important that the child receive evaluation and treatment by a knowledgeable clinician to prevent the
child from missing important opportunities because of this disorder.
Key Features of OCD
Obsessions
These are unwanted ideas or impulses that repeatedly well up in the mind of the person with OCD.
Persistent fears that harm may come to self or a loved one, an unreasonable concern with becoming
contaminated, or an excessive need to do things correctly or perfectly, are common. Again and
again, the individual experiences a disturbing thought, such as, "My hands may be contaminated--I
must wash them"; "I may have left the gas on"; or "I am going to injure my child." These thoughts are
intrusive, unpleasant, and produce a high degree of anxiety. Sometimes the obsessions are of a
violent or a sexual nature, or concern illness.
Compulsions
In response to their obsessions, most people with OCD resort to repetitive behaviors called
compulsions. The most common of these are washing and checking. Other compulsive behaviors
include counting (often while performing another compulsive action such as hand washing), repeating,
hoarding, and endlessly rearranging objects in an effort to keep them in precise alignment with each
other. Mental problems, such as mentally repeating phrases, listmaking, or checking are also
common. These behaviors generally are intended to ward off harm to the person with OCD or
others. Some people with OCD have regimented rituals while others have rituals that are complex
and changing. Performing rituals may give the person with OCD some relief from anxiety, but it is
only temporary.
Insight
People with OCD show a range of insight into the senselessness of their obsessions. Often,
especially when they are not actually having an obsession, they can recognize that their obsessions
and compulsions are unrealistic. At other times they may be unsure about their fears or even believe
strongly in their validity.
Resistance
Most people with OCD struggle to banish their unwanted, obsessive thoughts and to prevent
themselves from engaging in compulsive behaviors. Many are able to keep their
obsessive-compulsive symptoms under control during the hours when they are at work or attending
school. But over the months or years, resistance may weaken, and when this happens, OCD may
become so severe that time-consuming rituals take over the sufferers' lives, making it impossible for
them to continue activities outside the home.
Shame and Secrecy
OCD sufferers often attempt to hide their disorder rather than seek help. Often they are successful in
concealing their obsessive-compulsive symptoms from friends and coworkers. An unfortunate
consequence of this secrecy is that people with OCD usually do not receive professional help until
years after the onset of their disease. By that time, they may have learned to work their lives--and
family members' lives--around the rituals.
Long-lasting Symptoms
OCD tends to last for years, even decades. The symptoms may become less severe from time to
time, and there may be long intervals when the symptoms are mild, but for most individuals with
OCD, the symptoms are chronic.
What Causes OCD?
The old belief that OCD was the result of life experiences has been weakened before the growing
evidence that biological factors are a primary contributor to the disorder. The fact that OCD patients
respond well to specific medications that affect the neurotransmitter serotonin suggests the disorder
has a neurobiological basis. For that reason, OCD is no longer attributed only to attitudes a patient
learned in childhood--for example, an inordinate emphasis on cleanliness, or a belief that certain
thoughts are dangerous or unacceptable. Instead, the search for causes now focuses on the
interaction of neurobiological factors and environmental influences, as well as cognitive processes.
OCD is sometimes accompanied by depression, eating disorders, substance abuse disorder, a
personality disorder, attention deficit disorder, or another of the anxiety disorders. Co-existing
disorders can make OCD more difficult both to diagnose and to treat.
In an effort to identify specific biological factors that may be important in the onset or persistence of
OCD, NIMH-supported investigators have used a device called the positron emission tomography
(PET) scanner to study the brains of patients with OCD. Several groups of investigators have
obtained findings from PET scans suggesting that OCD patients have patterns of brain activity that
differ from those of people without mental illness or with some other mental illness. Brain-imaging
studies of OCD showing abnormal neurochemical activity in regions known to play a role in certain
neurological disorders suggest that these areas may be crucial in the origins of OCD. There is also
evidence that treatment with medications or behavior therapy induce changes in the brain coincident
with clinical improvement.
Recent preliminary studies of the brain using magnetic resonance imaging showed that the subjects
with obsessive-compulsive disorder had significantly less white matter than did normal control
subjects, suggesting a widely distributed brain abnormality in OCD. Understanding the significance of
this finding will be further explored by functional neuroimaging and neuropsychological studies
(Jenike et al, 1996).
Symptoms of OCD are seen in association with some other neurological disorders. There is an
increased rate of OCD in people with Tourette's syndrome, an illness characterized by involuntary
movements and vocalizations. Investigators are currently studying the hypothesis that a genetic
relationship exists between OCD and the tic disorders.
Other illnesses that may be linked to OCD are trichotillomania (the repeated urge to pull out scalp
hair, eyelashes, eyebrows or other body hair), body dysmorphic disorder (excessive preoccupation
with imaginary or exaggerated defects in appearance), and hypochondriasis (the fear of
having--despite medical evaluation and reassurance--a serious disease). Genetic studies of OCD
and other related conditions may enable scientists to pinpoint the molecular basis of these disorders.
Other theories about the causes of OCD focus on the interaction between behavior and the
environment and on beliefs and attitudes, as well as how information is processed. These behavioral
and cognitive theories are not incompatible with biological explanations.
Do I Have OCD?
A person with OCD has obsessive and compulsive behaviors that are extreme enough to interfere
with everyday life. People with OCD should not be confused with a much larger group of individuals
who are sometimes called "compulsive" because they hold themselves to a high standard of
performance and are perfectionistic and very organized in their work and even in recreational
activities. This type of "compulsiveness" often serves a valuable purpose, contributing to a person's
self-esteem and success on the job. In that respect, it differs from the life-wrecking obsessions and
rituals of the person with OCD.
Treatment of OCD; Progress Through Research
Clinical and animal research sponsored by NIMH and other scientific organizations has provided
information leading to both pharmacologic and behavioral treatments that can benefit the person with
OCD. One patient may benefit significantly from behavior therapy, while another will benefit from
pharmacotherapy. Some others may use both medication and behavior therapy. Others may begin
with medication to gain control over their symptoms and then continue with behavior therapy. Which
therapy to use should be decided by the individual patient in consultation with his or her therapist.
Pharmacotherapy
Clinical trials in recent years have shown that drugs that affect the neurotransmitter serotonin can
significantly decrease the symptoms of OCD. The first of these serotonin reuptake inhibitors (SRIs)
specifically approved for the use in the treatment of OCD was the tricyclic antidepressant
clomipramine (AnafranilR). It was followed by other SRIs that are called "selective serotonin
reuptake inhibitors" (SSRIs). Those that have been approved by the Food and Drug Administration
for the treatment of OCD are flouxetine (ProzacR), fluvoxamine (LuvoxR), and paroxetine (PaxilR).
Another that has been studied in controlled clinical trials is sertraline (ZoloftR). Large studies have
shown that more than three-quarters of patients are helped by these medications at least a little. And
in more than half of patients, medications relieve symptoms of OCD by diminishing the frequency
and intensity of the obsessions and compulsions. Improvement usually takes at least three weeks or
longer. If a patient does not respond well to one of these medications, or has unacceptable side
effects, another SRI may give a better response. For patients who are only partially responsive to
these medications, research is being conducted on the use of an SRI as the primary medication and
one of a variety of medications as an additional drug (an augmenter). Medications are of help in
controlling the symptoms of OCD, but often, if the medication is discontinued, relapse will follow.
Indeed, even after symptoms have subsided, most people will need to continue with medication
indefinitely, perhaps with a lowered dosage.
Behavior Therapy
Traditional psychotherapy, aimed at helping the patient develop insight into his or her problem, is
generally not helpful for OCD. However, a specific behavior therapy approach called "exposure and
response prevention" is effective for many people with OCD. In this approach, the patient
deliberately and voluntarily confronts the feared object or idea, either directly or by imagination. At
the same time the patient is strongly encouraged to refrain from ritualizing, with support and structure
provided by the therapist, and possibly by others whom the patient recruits for assistance. For
example, a compulsive hand washer may be encouraged to touch an object believed to be
contaminated, and then urged to avoid washing for several hours until the anxiety provoked has
greatly decreased. Treatment then proceeds on a step-by-step basis, guided by the patient's ability
to tolerate the anxiety and control the rituals. As treatment progresses, most patients gradually
experience less anxiety from the obsessive thoughts and are able to resist the compulsive urges.
Studies of behavior therapy for OCD have found it to be a successful treatment for the majority of
patients who complete it. For the treatment to be successful, it is important that the therapist be fully
trained to provide this specific form of therapy. It is also helpful for the patient to be highly motivated
and have a positive, determined attitude.
The positive effects of behavior therapy endure once treatment has ended. A recent compilation of
outcome studies indicated that, of more than 300 OCD patients who were treated by exposure and
response prevention, an average of 76 percent still showed clinically significant relief from 3 months
to 6 years after treatment (Foa & Kozak, 1996). Another study has found that incorporating
relapse-prevention components in the treatment program, including follow-up sessions after the
intensive therapy, contributes to the maintenance of improvement (Hiss, Foa, and Kozak, 1994).
One study provides new evidence that cognitive-behavioral therapy may also prove effective for
OCD. This variant of behavior therapy emphasizes changing the OCD sufferer's beliefs and thinking
patterns. Additional studies are required before the promise of cognitive-behavioral therapy can be
adequately evaluated. The ongoing search for causes, together with research on treatment, promises
to yield even more hope for people with OCD and their families.
How to Get Help for OCD
If you think that you have OCD, you should seek the help of a mental health professional. Family
physicians, clinics, and health maintenance organizations may be able to provide treatment or make
referrals to mental health centers and specialists. Also, the department of psychiatry at a major
medical center or the department of psychology at a university may have specialists who are
knowledgeable about the treatment of OCD and are able to provide therapy or recommend another
doctor in the area.
What the Family Can Do to Help
OCD affects not only the sufferer but the whole family. The family often has a difficult time accepting
the fact that the person with OCD cannot stop the distressing behavior. Family members may show
their anger and resentment, resulting in an increase in the OCD behavior. Or, to keep the peace, they
may assist in the rituals or give constant reassurance.
Education about OCD is important for the family. Families can learn specific ways to encourage the
person with OCD to adhere fully to behavior therapy and/or pharmacotherapy programs. Self-help
books are often a good source of information. Some families seek the help of a family therapist who
is trained in the field. Also, in the past few years, many families have joined one of the educational
support groups that have been organized throughout the country.
Continuing Research
Research into treatment for OCD is ongoing in several areas--ways of increasing availability of
effective behavior therapy; cognitive therapy; relapse prevention; methods of reducing medication in
patients who have a history of being unable to tolerate medication, such as small, liquid doses of
flouxetine or the use of intravenous clomipramine; and neurosurgery, a new approach to
treatment-refractory OCD. In the very few centers where neurosurgery has been performed as a
clinical procedure, candidates are generally restricted to those who have failed to respond to
conventional treatments, including behavior therapy and pharmacotherapy.
In addition to research into treatment modalities, NIMH researchers are conducting studies into
possible linkage of OCD to some autoimmune diseases (diseases in which infection-fighting cells, or
antibodies, turn against the body, trying to destroy it). Other NIMH-supported studies compare
behavior therapy, pharmacotherapy, and a combination of both.
Anecdotal reports of the successful use of electroconvulsive therapy (ECT) in OCD have been
published over the past several decades. Most often, the benefit from ECT has been short lived, and
this treatment is now generally restricted to instances of treatment-resistant OCD accompanied by
severe depression.
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