How common is OCD?

Our best estimates are that about 1 in 100 adults – or between 2-3 million adults in the United States – currently have OCD.^1,2 This is roughly the same number of people living in the city of Houston, Texas.

There are also at least 1 in 200 – or 500,000 – kids and teens that have OCD.  This is about the same number of kids who have diabetes. That means four or five kids with OCD 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 OCD.

OCD affects men, women and children of all races and backgrounds equally.

At what age does OCD begin?

OCD can start at any time from preschool to adulthood. Although OCD does occur at earlier ages, there are generally two age ranges when OCD first appears. The first range is between ages 10 and 12 and the second between the late teens and early adulthood.

Is OCD a brain disorder?

Research suggests that OCD involves problems in communication between the front part of the brain and deeper structures. These brain structures use a chemical messenger called serotonin. It is believed there is not enough serotonin in the brains of people with OCD. Medications that increase the amount of serotonin in the brain often reduce OCD symptoms. Although it seems clear that reduced levels of serotonin play a role in OCD, there are no laboratory tests for OCD. The diagnosis is made based on the observation and assessment of the person’s symptoms.

Pictures of the brain at work also show that in some people, the brain circuits involved in OCD become more normal with either serotonin medicines or cognitive behavior therapy (CBT). Click here for more on the most effective type of CBT for OCD called Exposure and Ritual Prevention.

What are common obstacles to effective treatment?

Studies find that it takes an average of 14-17 years from the time OCD begins for people to obtain appropriate treatment.

• Some people choose to hide their symptoms, often in fear of embarrassment or stigma. Therefore, many people with OCD do not seek the help of a mental health professional until many years after the onset of symptoms.
• Until recently, there was less public awareness of OCD, so many people were unaware that their symptoms represented an illness that could be treated.
• Lack of proper training by some health professionals often leads to the wrong diagnosis. Some patients with OCD symptoms will see several doctors and spend several years in treatment before receiving a correct diagnosis.
• Difficulty finding local therapists who can effectively treat OCD.
• Not being able to afford proper treatment.

How effective are treatments for OCD?

Most studies show that, on average, about 70% of patients with OCD will benefit from either medication or behavior therapy.  Patients who respond to treatment often report a 50 to 80% reduction in OCD symptoms.

However, medications have to be taken on a regular basis and patients must actively participate in CBT for the treatments to work.  Unfortunately, studies show that at least 25% of OCD patients refuse CBT, and as many as half of OCD patients discontinue medications due to side effects or for other reasons.

What if these treatments don’t work?

When the first OCD medicine or Cognitive Behavior Therapy (CBT) doesn’t seem to help, patients shouldn’t be discouraged. There are a number of alternative treatment options that can be tried.  These include other types of medicines or adding on a second medicine.  CBT is probably the best thing to go along with an OCD medicine, but its relative lack of availability is a major problem. Finding the right treatment might take time, but many people who do not respond to treatment at first, will likely find an effective treatment for their OCD.  Please see our referrals page for a list of cognitive-behavioral therapists in the Twin Cities who use ERP therapy.

What is the impact of untreated OCD?

If left untreated, OCD symptoms can negatively affect almost every facet of life, including school, work, marriage, family relations and friendships.  OCD symptoms can become so severe and time consuming that accomplishing important daily assignments and activities becomes difficult or impossible.  For example, a student might have a difficult time completing assignments or finishing a test on time, which can very negatively impact school performance and achievement.  An employee with OCD might fall behind due to absenteeism or compulsive slowness or checking. Receiving a promotion or even holding a job might not be possible.  For many, untreated OCD can make it difficult or impossible to work, leading to under-employment, unemployment and disability.  It might also be difficult for the person with OCD to share in household duties, which can put stress on a marriage or family.  People with OCD often find it more difficult to participate in and enjoy social or leisure activities, which can also negatively impact the family or friendships.

How do I find the right therapist?

Remember that some therapists are better at treating OCD than others. It is important to interview therapists to find out if they know how to do exposure and response prevention (ERP) therapy well. Their responses to your questions are a good guide to what you want to know about a new therapist. Your initial consultation may be done over the phone, or in person, but either way, remember:

• You have a perfect right to ask questions. This is your life and health!
• If the therapist is guarded, withholds information, or becomes angry at your requests for information, you should probably look elsewhere.
• If the therapist appreciates how important a decision this is for you and is open friendly and knowledgeable, you may have a gem of a therapist!
• Your relationship with the therapist is important. Especially since they will potentially be asking you to do things that you find uncomfortable as part of your treatment.

Here are some good questions to ask as you consider whether the therapist is a good fit:

• “What techniques do you use to treat OCD?”
  If the therapist is vague or does not mention cognitive behavior therapy (CBT) or Exposure and Response Prevention (ERP) use caution.
• “Do you use Exposure and Response Prevention to treat OCD?”
  Be cautious of therapists who say they use CBT but won’t be more specific.
• “What is your training and background in treating OCD?”
  If they say they went to a CBT psychology graduate program or did a post-doctoral fellowship in CBT, it is a good sign. Another positive is if a therapist says they are a member of the International OCD Foundation (IOCDF) or the Association of Behavioral and Cognitive Therapists (ABCT). Also look for therapists who say they have attended specialized workshops or trainings offered by the IOCDF like the Behavior Therapy Training Institute (BTTI) or Annual OCD Conference.
• “How much of your practice currently involves anxiety disorders?”
  A good answer would be over 25%.
• “Do you feel that you have been effective in your treatment of OCD?”
  This should be an unqualified “Yes.”
• “What is your attitude towards medication in the treatment of OCD?”
  If they are negative about medication this is a bad sign. While not for everyone, medication can be a very effective treatment for OCD.
• “Are you willing to leave your office if needed to do behavior therapy?”
  It is sometimes necessary to go out of the office to do effective ERP.

¹ National Institute of Mental Health
² Talking Back to OCD, John March and Christine M. Benton (2007)
This information provided courtesy of the International OCD Foundation.