If you or someone you care about has been diagnosed with obsessive-compulsive disorder (OCD), you may feel you are the only person facing the difficulties of this illness. But you are not alone. In the United States, 1 in 50 adults currently has OCD, and twice that many have had it at some point in their lives. Fortunately, very effective treatments for OCD are now available to help you regain a more satisfying life. Here are answers to the most commonly asked questions about OCD.
Absolutely yes. You need to become an expert on your illness. Since OCD can come and go many times during your life, you and your family or others close to you need to learn all about OCD and its treatment. This will help you get the best treatment and keep the illness under control. Read books, attend lectures, talk to your doctor or therapist, and consider joining the Obsessive-Compulsive Foundation. A list of recommended readings and information resources is given at the end of this handout. Being an informed patient is the surest path to success.
When beginning treatment, most people talk to their clinician at least once a week to develop a CBT treatment plan and to monitor symptoms, medication doses, and side effects. As you get better, you see your clinician less often. Once you are well, you might see your clinician only once a year.
Regardless of scheduled appointments or blood tests, call your clinician if you have:
It is normal to have occasional doubts and discomfort with your treatment. Discuss your concerns and any discomforts with your doctor, therapist, and family. If you feel a medication is not working or is causing unpleasant side effects, tell your doctor. Don't stop or adjust your medication on your own. You and your doctor can work together to find the best and most comfortable medicine for you. Also, don't be shy about asking for a second opinion from another clinician, especially about the wisdom of cognitive-behavior therapy. Consultations with an expert on medication or behavioral psychotherapy can be a great help. Remember, it is harder to get OCD under control than to keep it there, so don't risk a relapse by stopping your treatment without first talking to your clinician.
Many family members feel frustrated and confused by the symptoms of OCD. They don't know how to help their loved one. If you are a family member or friend of someone with OCD, your first and most important task is to learn as much as you can about the disorder, its causes, and its treatment. At the same time, you must be sure the person with OCD has access to information about the disorder. We highly recommend the booklet, "Learning to Live with Obsessive Compulsive Disorder" by Van Noppen et al. (Information on obtaining this and other educational resources is given at the end of this handout.) This booklet gives good advice and practical tips to help family members help their loved ones and learn to cope with OCD. Helping the person to understand that there are treatments that can help is a big step toward getting the person into treatment. When a person with OCD denies that there is a problem or refuses to go for treatment, this can be very difficult for family members. Continue to offer educational materials to the person. In some cases. it may help to hold a family meeting to discuss the problem, in a similar manner to what is often done when someone with alcohol problems is in denial.
Family problems don't cause OCD, but the way families react to the symptoms can affect the disorder, just as the symptoms can cause a great deal of disruption and many problems for the family. OCD rituals can tangle up family members unmercifully, and it is sometimes necessary for the family to go through therapy with the patient. The therapist can help family members learn how to become gradually disentangled from the rituals in small steps and with the patient's agreement. Abruptly stopping your participation in OCD rituals without the patient's consent is rarely helpful since you and the patient will not know how to manage the distress that results. Your refusal to participate will not help with those symptoms that are hidden and, most important, will not help the patient learn a lifelong strategy for coping with OCD symptoms.
Negative comments or criticism from family members often make OCD worse, while a calm, supportive family can help improve the outcome of treatment. If the person views your help as interference, remember it is the illness talking. Try to be as kind and patient as possible since this is the best way to help get rid of the OCD symptoms. Telling someone with OCD to simply stop their compulsive behaviors usually doesn't help and can make the person feel worse, since he or she is not able to comply. Instead, praise any successful attempts to resist OCD, while focusing your attention on positive elements in the person's life. You must avoid expecting too much or too little. Don't push too hard. Remember that nobody hates OCD more than the person who has the disorder. Treat people normally once they have recovered, but be alert for telltale signs of relapse. If the illness is starting to come back, you may notice it before the person does. Point out the early symptoms in a caring manner and suggest a discussion with the doctor. Learn to tell the difference between a bad day and OCD, however. It is important not to attribute everything that goes poorly to OCD.
Family members can help the clinician treat the patient. When your family member is in treatment, talk with the clinician if possible. You could offer to visit the clinician with the person to share your observations about how the treatment is going. Encourage the patient to stick with medications and/or CBT. However, if the patient has been on a certain treatment for a fairly long time with little improvement in symptoms or has troubling side effects, encourage the person to ask the doctor about other treatments or about getting a second opinion.
When children or adolescents have OCD, it is important for parents to work with schools and teachers to be sure that they understand the disorder. Just as with any child with an illness, parents still need to set consistent limits and let the child or adolescent know what is expected of him or her.
Take advantage of the help available from support groups (for addresses and phone numbers, see the end of this handout). Sharing your worries and experiences with others who have gone through the same things can be a big help. Support groups are a good way to feel less alone and to learn new strategies for coping and helping the person with OCD.
Be sure to make time for yourself and your own life. If you are helping to care for someone with severe OCD at home, try to take turns "checking in" on the person so that no one family member or friend bears too much of the burden. It is important to continue to lead your own life and not let yourself become a prisoner of your loved one's rituals. You will then be better able to provide support for your loved one.