Your questions about OCD (obsessive-compulsive disorder) may be answered by this document provided directly by the US National Institute of Mental Health.
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.
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.
If You Have Special Needs
Individuals with OCD are protected under the Americans with Disabilities Act (ADA). Among organizations that offer information related to the ADA are the ADA Information Line at the U.S. Department of Justice, (202) 514-0301, and the Job Accommodation Network (JAN), part of the President’s Committee on the Employment of People with Disabilities in the U.S. Department of Labor. JAN is located at West Virginia University, 809 Allen Hall, P.O. Box 6122, Morgantown, WV 26506, telephone (800) 526-7234 (voice or TDD), (800) 526-4698 (in West Virginia).
The Pharmaceutical Research and Manufacturers Association publishes a directory of indigent programs for those who cannot afford medications. Physicians can request a copy of the guide by calling 800-762-4636 (800-PMA-INFO).
For Further Information
For further information on OCD, its treatment, and how to get help, you may wish to contact the following organizations:
Anxiety Disorders Association of America
8730 Georgia Ave, Suite 600
Silver Spring, MD 20910
Phone: (240) 485-1001
Fax: (240) 485-1035
Makes referrals to professional members and to support groups. Has a catalog of available brochures, books, and audiovisuals.
Association for Advancement of Behavior Therapy
305 Seventh Ave.
New York, NY 10001
Membership listing of mental health professionals focusing on behavior therapy.
Madison Institute of Medicine
Obsessive Compulsive Information Center
7617 Mineral Point Road, Suite 300
Madison, WI 53717-1914
Computer data base of over 13,000 references updated daily. Computer searches done for nominal fee. No charge for quick reference questions. Maintains physician referral and support group lists.
Freedom From Fear
308 Seaview Ave.
Staten Island, NY 10305
Offers a free newsletter on anxiety disorders and a referral list of treatment specialists.
Obsessive-Compulsive Foundation, Inc.
337 Notch Hill Road
North Branford, CT 06471
Phone: (203) 315-2190
Fax: (203) 315-2196
Offers free or at minimal cost brochures for individuals with the disorder and their families. In addition, videotapes and books are available. A bimonthly newsletter goes to members who pay an annual membership fee of $45.00. Has over 250 support groups nationwide. Can refer to mental health professionals and treatment facilities in your area with experience in treating OCD by mail.
Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
New York, NY 11361-2874
Publications, videotapes, and films available at minimal cost. Newsletter goes to members who pay an annual fee of $45.00.
Trichotillomania Learning Center
1215 Mission Street, Suite 2
Santa Cruz, CA 95060-3558
Membership fee of $35.00 includes information packet and bimonthly newsletter.
For information on other mental disorders, contact:
Information Resources and Inquiries Branch
National Institute of Mental Health
6001 Executive Boulevard, Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
Books Suggested for Further Reading
Baer L. Getting Control. Overcoming Your Obsessions and Compulsions. Boston: Little, Brown & Co., 1991.
DeSilva P and Rachman S. Obsessive-compulsive Disorder: that Facts. Oxford: Oxford University Press, 1992.
Foa EB and Wilson R. Stop Obsessing! How to Overcome Your Obsessions and Compulsions. New York: Bantam Books, 1991.
Foster CH. Polly’s Magic Games: A Child’s View of Obsessive-Compulsive Disorder. Ellsworth, ME: Dilligaf Publishing, 1994.
Greist JH. Obsessive Compulsive Disorder: A Guide. Madison, WI: Obsessive Compulsive Disorder Information Center. rev. ed., 1992. (Thorough discussion of pharmacotherapy and behavior therapy)
Jenike MA. Drug Treatment of OCD in Adults. Milford, CT: OC Foundation, 1996. (Answers frequently asked questions about OCD and drug treatments)
Johnston HF. Obsessive Compulsive Disorder in Children and Adolescents: A Guide. Madison, WI: Child Psychopharmacology Information Center, 1993.
Matisik EN. The Americans with Disabilities Act and the Rehabilitation Act of 1973: Reasonable Accommodation for Employees with OCD. Milford, CT: OC Foundation, 1996.
Neziroglu F. and Yaryura-Tobias JA. Over and Over Again: Understanding Obsessive-compulsive Disorder. Lexington, MA: DC Health, 1991.
Rapoport JL. The Boy Who Couldn’t Stop Washing: The Experience and Treatment of Obsessive-Compulsive Disorder. New York: E.P. Dutton, 1989.
Steketee GS and White K. When Once Is Not Enough: Help for Obsessive Compulsives. Oakland, CA: New Harbinger, 1990.
VanNoppen BL, Pato MT, and Rasmussen S. Learning to Live with OCD. Milford, CT: OC Foundation, 1993.
The Touching Tree. Jim Callner, writer/director, Awareness films. Distributed by the O.C. Foundation, Inc., Milford, CT. (about a child with OCD)
DuPont RL, Rice DP, Shiraki S, and Rowland C. Economic costs of obsessive-compulsive disorder. Unpublished, 1994.
Foa EB and KoZak MJ. Obsessive-compulsive disorder: long-term outcome of psychological treatment. In Mavissakalian & Prien (Eds.), Long-term Treatments of Anxiety Disorders. Washington, DC: American Psychiatric Press, 1996, 285-309.
Hiss H, Foa EB, and Kozak MJ. Relapse prevention program for treatment of obsessive-compulsive disorder. Journal of Consulting and Clinical Psychology 62:4:801-808, 1994.
Jenike MA. Obsessive-compulsive Disorder: efficacy of specific treatments as assessed by controlled trials. Psychopharmacology Bulletin 29:4:487-499, 1993.
Jenike MA. Managing the patient with treatment-resistant obsessive-compulsive disorder: current strategies. Journal of Clinical Psychiatry 55:3 (suppl):11-17, 1994.
Jenike MA et al. Cerebral structural abnormalities in obsessive-compulsive disorder. Archives of General Psychiatry 53:7:625-632, 1996.
Leonard HL, Swedo SE, Lenane MC, Rettew DC, Hamburger SD, Bartko JJ, and Rapoport JL. A 2- to 7-Year follow-up study of 54 obsessive-compulsive children and adolescents. Archives of General Psychiatry 50:429-439, 1993.
March JS, Mulle K, and Herbel B. Behavioral psychotherapy for children and adolescents with obsessive-compulsive disorder: an open trial of a new protocol-driven treatment package. Journal of the American Academy of Child and Adolescent Psychiatry 33:3:333-341, 1994.
Pato MT, Zohar-Kadouch R, Zohar J, and Murphy DL. Return of symptoms after discontinuation of clomipramine in patients with obsessive-compulsive disorder. American Journal of Psychiatry 145:1521-1525, 1988.
Swedo SE and Leonard HL. Childhood movement disorders and obsessive-compulsive disorder. Journal of Clinical Psychiatry 55:3 (suppl):32-37.
Swedo SE and Leonard HL. Excessively compulsive or obsessive-compulsive disorder? It’s Not All in Your Head. New York, NY: HarperCollins, 1996.
The National Institute of Mental Health is part of the National Institutes of Health (NIH), the Federal Government’s primary agency for biomedical and behavioral research. NIH is a component of the U.S. Department of Health and Human Services.
This brochure is the second revision by Margaret Strock, staff member in the Information Resources and Inquiries Branch, Office of Scientific Information (OSI), National Institute of Mental Health (NIMH) of a publication originally written by Mary Lynn Hendrix, OSI. Expert assistance was provided by Jack Maser, PhD, Dennis Murphy, MD, Matthew Rudorfer, MD, and Lynn J. Cave, NIMH staff members; Wayne K. Goodman, MD, University of Florida College of Medicine; Michael A. Jenike, M.D., Massachusetts General Hospital; Edna B. Foa, PhD, and Michael J. Kozak, PhD, Medical College of Pennsylvania; Gail S. Steketee, PhD, Boston University; and James Broatch, MSW, Obsessive-Compulsive Foundation.
NIH Publication No. 99-3755
Printed 1991, Revised 1994, Revised September 1996, Reprinted 1999
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