Obsessive-compulsive disorder

What is obsessive compulsive disorder?
Obsessive compulsive disorder is disorder of the brain and behavior. Obsessive compulsive disorder causes severe anxiety in those affected. Obsessive compulsive disorder involves both obsessions and compulsions that take a lot of time and get in the way of important activities the person values.

Here is one way to think about what having obsessive compulsive disorder is like:
Imagine that your mind got stuck on a certain thought or image...Then this thought or image got replayed in your mind over and over again no matter what you did…You don’t want these thoughts – it feels like an avalanche…Along with the thoughts come intense feelings of anxiety…

Anxiety is your brain’s warning system. When you feel anxious, it feels like you are in danger. Anxiety is an emotion that tells you to respond, react, protect yourself, DO SOMETHING!

On the one hand, you might recognize that the fear doesn’t make sense, doesn’t seem reasonable, yet it still feels very real, intense, and true…Why would your brain lie? Why would you have these feelings if they weren’t true? Feelings don’t lie… Do they?

Unfortunately, if you have obsessive compulsive disorder, they do lie. If you have obsessive compulsive disorder, the warning system in your brain is not working correctly. Your brain is telling you that you are in danger when you are not.

When scientists compare pictures of the brains of groups of people with obsessive compulsive disorder, they can see that some areas of the brain are different than the brains of people who don’t have obsessive compulsive disorder.

Those tortured with obsessive compulsive disorder are desperately trying to get away from paralyzing, unending anxiety…

How is obsessive compulsive disorder diagnosed?
Only trained therapists can diagnose obsessive compulsive disorder.

Therapists will look for three things:
• The person has obsessions,
• He or she does compulsive behaviors, and
• The obsessions and compulsions take a lot of time and get in the way of important activities the person values, such as working, going to school, or spending time with friends.

Obsessions and compulsions
Obsessions:
• Thoughts, images, or impulses that occur over and over again and feel out of the person's control.
• The person does not want to have these ideas.
• He or she finds them disturbing and unwanted, and usually know that they don't make sense.
• They come with uncomfortable feelings, such as fear, disgust, doubt, or a feeling that things have to be done in a way that is "just right."
• They take a lot of time and get in the way of important activities the person values.

What obsessions are not:
• It is normal to have occasional thoughts about getting sick or about the safety of loved ones.

Common obsessions in obsessive compulsive disorder1

Contamination
• Body fluids (examples: urine, feces)
• Germs/disease (examples: herpes, HIV)
• Environmental contaminants (examples: asbestos, radiation)
• Household chemicals (examples: cleaners, solvents)
• Dirt

Losing control
• Fear of acting on an impulse to harm oneself
• Fear of acting on an impulse to harm others
• Fear of violent or horrific images in one's mind
• Fear of blurting out obscenities or insults
• Fear of stealing things

Harm
• Fear of being responsible for something terrible happening (examples: fire, burglary)
• Fear of harming others because of not being careful enough (example: dropping something on the ground that might cause someone to slip and hurt him/herself)

Obsessions related to perfectionism
• Concern about evenness or exactness
• Concern with a need to know or remember
• Fear of losing or forgetting important information when throwing something out
• Inability to decide whether to keep or to discard things
• Fear of losing things

Unwanted sexual thoughts
• Forbidden or perverse sexual thoughts or images
• Forbidden or perverse sexual impulses about others
• Obsessions about homosexuality
• Sexual obsessions that involve children or incest
• Obsessions about aggressive sexual behavior towards others

Religious obsessions (scrupulosity)
• Concern with offending God, or concern about blasphemy.
• Excessive concern with right/wrong or morality.

Other obsessions
• Concern with getting a physical illness or disease (not by contamination e.g., cancer)
• Superstitious ideas about lucky/unlucky numbers, certain colors

Compulsions:
• Repetitive behaviors or thoughts that a person engages in to neutralize, counteract, or make their obsessions go away.
• People with obsessive compulsive disorder realize this is only a temporary solution, but without a better way to cope, they rely on the compulsion as a temporary escape.
• Compulsions can also include avoiding situations that trigger obsessions.
• Compulsions are time consuming and get in the way of important activities the person values.

What compulsions are not:
• Not all repetitive behaviors or "rituals" are compulsions. For example, bedtime routines, religious practices, and learning a new skill involve repeating an activity over and over again, but are a welcome part of daily life.
• Behaviors depend on the context: Arranging and ordering DVDs for eight hours a day isn't a compulsion if the person works in a video store.

Common compulsions in obsessive compulsive disorder1
Washing and cleaning
• Washing hands excessively or in a certain way
• Excessive showering, bathing, tooth brushing, grooming or toilet routines
• Cleaning household items or other objects excessively
• Doing other things to prevent or remove contact with contaminants

Checking
• Checking that you did not/will not harm others
• Checking that you did not/will not harm yourself
• Checking that nothing terrible happened
• Checking that you did not make a mistake
• Checking some parts of your physical condition or body

Repeating
• Rereading or rewriting
• Repeating routine activities (examples: going in or out doors, getting up or down from chairs)
• Repeating body movements (example: tapping, touching, blinking)
• Repeating activities in "multiples" (examples: doing a task three times because three is a "good", "right", "safe" number)

Mental compulsions
• Mental review of events to prevent harm (to oneself, others, to prevent terrible consequences)
• Praying to prevent harm (to oneself, others, to prevent terrible consequences)
• Counting while performing a task to end on a "good", "right", or "safe" number
• "Cancelling" or "Undoing" (example: replacing a "bad" word with a "good" word to cancel it out)

Other compulsions
• Collecting items which results in significant clutter in the home (also called hoarding)
• Putting things in order or arranging things until it "feels right"
• Telling, asking, or confessing to get reassurance
• Avoiding situations that might trigger your obsessions

1 Reprinted with permission by New Harbinger Publications, Inc. This is an adaptation of the OC Checklist which appears in S. Wilhelm and G. S. Steketee’s, “Cognitive Therapy for Obsessive-Compulsive Disorder: A Guide for Professionals” (2006). www.newharbinger.com

How many people have obsessive compulsive disorder?
Adults. Our best estimates are that about 1 in 100 adults – or between 2 to 3 million adults in the United States – currently have obsessive compulsive disorder.1,2 This is roughly the same number of people living in the city of Houston, Texas.

Children. There are also at least 1 in 200 – or 500,000 – kids and teens that have obsessive compulsive disorder. This is about the same number of kids who have diabetes.That means four or five kids with obsessive compulsive disorder are likely to be enrolled in any average size elementary school. In a medium to large high school, there could be 20 students struggling with the challenges caused by obsessive compulsive disorder.3

1 National Institute of Mental Health
2 Ruscio AM, Stein DJ, Chiu WT, Kessler RC. “The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication.” Molecular Psychiatry. 2008 Aug 26.
3 March, J. & Benton, C. (2007). Talking Back to OCD. (pp.10-11). The Guilford Press.

At what age does obsessive compulsive disorder begin?
Obsessive compulsive disorder can start at any time from preschool to adulthood.

Although obsessive compulsive disorder does occur at earlier ages, there are generally two age ranges when obsessive compulsive disorder first appears:
• Between ages 8 and 12
• Between the late teens and early adulthood

What causes obsessive compulsive disorder?
Unfortunately we still do not know the exact cause or causes of obsessive compulsive disorder. However, research suggests that differences in the brain and genes of those affected may play a role.

Is obsessive compulsive disorder a brain disorder?
Research suggests that obsessive compulsive disorder involves problems in communication between the front part of the brain and deeper structures. These brain structures use a chemical messenger called serotonin. Pictures of the brain at work also show that in some people, the brain circuits involved in obsessive compulsive disorder become more normal with either serotonin medicines or cognitive behavior therapy (CBT).

Is obsessive compulsive disorder inherited?
Research shows that obsessive compulsive disorder does run in families and that genes likely play a role in the development of the disorder. Genes appear to be only partly responsible for causing the disorder though. No one really knows what other factors might be involved, perhaps an illness or even ordinary life stresses that may induce the activity of genes associated with the symptoms of obsessive compulsive disorder.

Some experts think that obsessive compulsive disorder that begins in childhood may be different from the obsessive compulsive disorder that begins in adults. For example, a recent review of twin studies1 has shown that genes play a larger role when obsessive compulsive disorder starts in childhood (45-65%) compared to when it starts in adulthood (27-47%).

What about PANDAS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is a proposed kind of obsessive compulsive disorder that occurs in childhood following the body’s reaction to infection.

Treatment of obsessive compulsive disorder
On average, it takes 14-17 years from the time obsessive compulsive disorder begins for people to get the right treatment.

Obstacles to treatment:
• Hiding symptoms. Some people choose to hide their symptoms, often in fear of embarrassment or stigma. This causes many people with obsessive compulsive disorder to not seek the help of a mental health professional until many years after the onset of symptoms.
• Less public awareness of obsessive compulsive disorder. Until recently, many people did not know there was even a name for their illness and with no name, they assumed there was no treatment.
• Lack of proper training in health professionals. People with obsessive compulsive disorder often get the wrong diagnosis from health professionals and need to see several doctors and spend several years in the incorrect treatment before getting the right diagnosis.
• Difficulty finding local therapists who can effectively treat obsessive compulsive disorder.
• Not being able to afford proper treatment.

What are the first-line treatments for obsessive compulsive disorder and OC related disorders?
The best treatment for most people with obsessive compulsive disorder should include one or more of the following:
• A properly trained therapist
• Cognitive Behavior Therapy (CBT)
• Medicine

If the above treatments don't work, what are my options?
Family support and education
Intensive treatment program
Brain surgery
Gamma knife
Deep brain stimulation (DBS)
Cutting edge research on new medication options

What about PANDAS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is a proposed kind of obsessive compulsive disorder that occurs in childhood following the body’s reaction to infection.

PANDAS should be managed with early antibiotic treatment for strep infections. Continued symptoms can be treated with standard obsessive compulsive disorder treatments (cognitive behavior therapy and/or SSRI medicine). Closely watching a child's reaction to SSRIs is important as they can cause severe behavioral problems, including suicidal thoughts.

This information was developed by the International Obsessive-Compulsive Foundation and is herewith used with permission.

International Obsessive-Compulsive Foundation. What is Obsessive Compulsive Disorder (OCD)? Available at: https://iocdf.org/about-ocd/. Last accessed January 31, 2014.

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