Five Actions that are Helpful (and Five that are Not)
Introduction
OCD and it’s Related Disorders are a family matter, affecting not only the individual sufferer, but all members of the household. It can be an excruciating struggle to determine which ways to approach the myriad host of complicated issues that OCD presents. Sometimes knowing how to respond to obsessive or compulsive symptoms can be baffling. We all want to be of help to those we love and with the right approach, we can.
However, there is a complicating factor at play. Sometimes the most intuitive, natural response from a family member or parent can be a misstep. Our primary urge is to relieve suffering any way possible. But OCD is squirrelly, and often those urges provide only temporary relief and can sometimes perpetuate the symptoms. Here are some approaches endorsed by the International OCD Foundation and The OCD Clinics.
Five Ways to Help your Family Member
Education
Learn About OCD
OCD is not rare. Estimates vary, with most suggesting that between 2% and 4% of children and adults in the US have OCD. Excellent resources for information about the nature of OCD and its treatment are available from the International OCD Foundation (www.iocdf.org) and the Anxiety and Depression Association of America (www.adaa.org). Consider joining these excellent advocacy organizations. The PANDAS Network (www.pandasnetwork.org) provides an excellent resource for parents of children who show symptoms of or have been diagnosed with PANS/PANDAS.
Many former-OCD sufferers have written about their experience, treatment and recovery. These books can serve as an example that recovery is possible.
Support
You Are Not Alone
Many areas offer OCD Support Groups for both the individual and family members. The IOCDF has a directory of support groups available in many locations. Several dedicated parents and family members have composed Blogs that provide a way to connect with others who are learning and growing in their understanding of OCD and Related Disorders. For the PANDAS community, the following blog offers a wealth of information and detail the experience of families: https://survivingpandas.wordpress.com/home/.
Books are an excellent way to introduce those with OCD that they are not struggling in isolation. The following books are a selection of what is available:
- Mr. Worry by Holly L. Niner
- Up and Down the Worry Hill by Aureen Pinto Wagner
- What to do When Your Brain Gets Stuck by Dawn Huebner
- What to do When You Worry Too Much by Dawn Huebner
Understanding
Most everyone who has been diagnosed with OCD reports that they understand the essential nature of the Disorder: that it is irrational. It makes no sense to those with it as well of those observing those with this condition. It does not make it any less real for the person struggling. In fact, it can add to the frustration of trying to navigate and justify giving in to the urges, obsessions and compulsions. This understanding provides no relief, nor does it lessen the intensity of the perceived need to conduct these behaviors. Doing so feels “worth it” in the instant that they occur: a temporary relief from the anxiety and fear that is threatened by the OCD Voice. Understanding the struggle builds a sense of compassion and humanity.
Hope
Here’s the good news: very many people suffering can and do experience a significant reduction in symptom severity and intensity with the appropriate therapeutic intervention. Persistent hope involves not giving up until the solution has been found. Many people with OCD resist treatment for many years from onset, believing that their condition is impossible to improve or resolve. Statistics indicate that this is simply not true. With the standard of success measured as an 80% reduction in symptom severity, treatment with Cognitive Behavioral Therapy by a trained OCD therapist has a very favorable potential outcome: somewhere between 75% to 80% of those engaged in treatment experience this success.
Chose Treatment Modalities Wisely
This is arguably the most important predictor of treatment success; finding the appropriate provider in the proper setting to meet the needs of the person with OCD. Many well-intentioned therapists state that they treat OCD. Frankly speaking, if they have not had extensive education and experience in the matter, they are probably equating OCD treatment with traditional psychotherapy. They are not the same.
Ask potential treatment providers the following questions:
- are you experienced in providing Cognitive Behavioral Therapy, specifically Exposure/Response Prevention?
- what percentage of your clients are those with Obsessive Compulsive and Related Disorders?
- have you participated in advanced training? For example, the IOCDF conducts advanced trainings for OCD therapists through the Behavior Therapy Training Institute. That credential is a hallmark of commitment to OCD treatment.
- what is your position regarding medication in treating OCD?
- have you been effective in treating clients with OCD?
Five Actions that are Not Helpful
Reassurance
Persons with OCD often chronically ask friends and family members for reassurance. These might be “Are you sure…” questions or inquiries that “everything will be OK if X occurs”. As you work with your OCD therapist, you will be strongly encouraged to not provide reassurance. This, especially to parents, seems counter-intuitive: who wouldn’t want to make their loved one or child feel better? The problem with this is that the relief provided by reassurance is mild and quite temporary. Thus, the repeated need to ask the question with enough frequency to disrupt the family routine. The key to successful OCD treatment is generating the ability to tolerate anxiety and uncertainty. Reassurance blocks the development of these important skills.
Accommodation
It is common for those with OCD to ask (even demand) those close to them to perform undesirable tasks for them. For example, opening doors that they perceive to be contaminated, driving a certain route to avoid triggers and nighttime ritual exchanges or prayers. Conducting these actions for the person does not forward their treatment progress. As instructed by your OCD therapist, you’ll likely be strongly discouraged from doing these tasks. Doing so only perpetuates the anxiety and denies them the opportunity to practice their coping skills and assists them in avoiding the feared action.
Altering the Routine
As part of OCD treatment, families are often instructed to go about life as usual. Doing the usual activities, such as eating at restaurants, going to movies or social functions should carry on, maintaining the family pattern. Alterations to this routine only serves to postpone or prevent the person with OCD coming in contact with the troubling OCD triggers. In time, this can also inhibit the healthy functioning of other family members, resulting in resentment. Within reason, it is best to not engage in this form of accommodation.
Feeling Shame
OCD is a disorder that affects the person who has it, but it does not define the person. It is helpful to regard OCD as being external to the person, rather than part of who the person is. Those who suffer with this disorder need to live in an environment where others assume that treatment exposures will be successful. We were humans with intrinsic value before OCD, remain so during the OCD struggle as well as after treatment has been completed.
Not Choosing the Appropriate Modality
There are essentially three categories or modalities of OCD treatment. Each one can be tailored to the person’s individual needs. A brief description of each follows:
- Outpatient Therapy- this is usually most appropriate for those with relatively mild or moderate symptom presentations who are nonetheless able to function in their daily life (work, school, family interactions) without substantial disruption. These individuals may have intermittent problems completing tasks or engage in excessive compulsive behaviors or obsessive rituals, but are otherwise not suffering physical complications or are able to manage life with OCD. Outpatient therapy can be four to six months in duration, sometimes longer.
- Intensive Outpatient Programs (IOP)- this modality is appropriate for individuals who have moderate to severe symptom presentations and are not able to function in their daily lives. They might be able to maintain school and work responsibilities, but most often are very substantially impacted by OCD, many times to the degree that life is unmanageable. They might ritualize to the extent that they are unable to leave the house at times (and only if certain conditions are met), very often suffer physical consequences as a result of their compulsions and are unable to imagine life without being controlled by obsessions. IOP treatment is usually conducted for four or six hours per day for three to five days per week. IOP can last from two to four weeks. It is the preferred option for those seeking rapid relief from symptom severity, or those for whom Outpatient Therapy has not proven successful
- Hospitalization- this modality is appropriate for individuals who have very severe to catastrophic symptom presentation and who might be in physical jeopardy due to the OCD symptoms or are utterly unable to function in nearly every area of their lives. Residential Inpatient treatment in OCD Hospitals commonly lasts for four to six weeks.
The journey to relief from OCD can take many paths (and, sometimes, detours). With diligence, proper treatment and sufficient engagement, OCD can reside in a person’s past instead of defining their present and future.