Guest Bloggers: Heidi J. Pollard, RN, MSN and C. Alec Pollard, Ph.D.
Some people visit their doctor at the first sign of a physical symptom; others may wait till the symptoms interfere with their daily routine. Then there is a group of sufferers who seldom avail themselves of professional help, even when the problem negatively affects their life and the lives of their family. This last group can be characterized as “recovery avoiders,” or RA’s. Recovery avoidance is difficult for most people to understand and there are few resources available to help understand it. The purpose of this article is to provide some information on recovery avoidance and discuss resources available to families and friends of OCD sufferers who avoid recovery.
What is Recovery Avoidance?
Recovery avoidance can be associated with almost any type of problem, from someone who has lung disease and doesn’t stop smoking to someone with manic-depressive illness who refuses to maintain Lithium treatment. In all cases, a person’s behavior is incompatible with the pursuit of health or well-being. RA’s usually downplay the severity of the problem or do not acknowledge having a problem at all. They take few, if any, steps on their own to find help or to learn about their disorder. Family members and friends are usually working much harder than the RA to do something about the problem. If treatment is sought, it is only because others have pressured the RA’s to go. And they do not fully participate once they’re in treatment.
We do not know exactly what portion of OCD sufferers are RA’s. However, it is probably a substantial number. Studies indicate only a minority of OCD sufferers has received appropriate treatment. While there are other reasons why people do not obtain professional help (e.g., lack of information, too few qualified providers, etc.), our clinical experience suggests recovery avoidance is one of the major reasons why so many cases of OCD remain undertreated or untreated altogether.
It is natural for those who do not have OCD to wonder why an RA would not do everything possible to overcome this disabling disorder. However, it is important to remember RA’s do not fully recognize the self-defeating nature of their behavior. They are usually responding out of habit and do not know what else to do. It is easier to empathize with an RA if we recognize most of us have avoided dealing with some problem or another in our lives. Putting off addressing a problem is very common. The consequences of not dealing with OCD, however, can be devastating for those who sufferer from this disorder and for their loved ones as well. The effect on family and friends can lead them to conclude the RA is lazy, spoiled, unmotivated, or selfish, or that s/he must like being ill. Judgments like these may feel justified to someone who does not understand recovery avoidance, but demeaning labels tell us nothing about why RA’s behave the way they do. Such harsh judgments, expressed or unexpressed, do not spur the OCD sufferer to change, nor do they help the family heal. A useful explanation of recovery avoidance should make sense of the individual’s behavior and provide clues for how to improve the situation.
Why Don’t Some OCD Sufferers Deal with Their Disorder?
There may be other factors involved, but we believe there are two main reasons why some people avoid recovery. The first reason is fear. Those who do not have OCD often fail to appreciate the level of fear an OCD sufferer experiences. The fear may not be based on realistic concerns, but that does not matter. What a person perceives determines the level of fear. The very thought of giving up the avoidance and compulsions can be overwhelming to an OCD sufferer. These counterproductive ways of coping create an illusion of safety and control that is not always easily surrendered. Nobody wants to be disabled, but some OCD sufferers are terrified of getting better. The second reason some people avoid recovery is what we term incentive deficits. Incentives are things that push a person to act. Money, for example, motivates people to go to work. Money is an incentive. Human behavior is influenced largely by incentives, and recovery behavior is no exception. You go to the doctor because you want to get rid of something negative (e.g., unpleasant symptoms) or because you want something positive the disorder is keeping you from obtaining (e.g., a job, food, relationships, pleasurable activities, etc.). In order to be willing to endure the discomfort of treatment and generate the effort necessary to pursue recovery, a person must have sufficient incentive. Incentive is different from motivation, which is characterized as desire. For example, one may desire (be motivated) to lose weight, but without sufficient incentive to maintain behaviors that need to be performed to accomplish the weight loss, the goal will not be accomplished. Desire alone is not sufficient for behavior change, wanting something to occur is not the same as doing what needs to be done. Incentives increase motivation and fuel action. Some OCD sufferers do not fully recognize the negative consequences of their disorder. Others do not sufficiently recognize the positive things in life they are missing because of their OCD. Still others no longer believe life’s pleasures are possible for them. All of these individuals may desire to get better. A few may have even tried therapy. But they are unable to do what needs to be done to maintain the behaviors that will accomplish their goal. These individuals have incentive deficits.
We can summarize the relationship between fear, incentive, and recovery behavior with a general proposition: All things being equal, a person will not seek recovery unless the incentive to get better is stronger than the fear of getting better. Therefore, an RA’s behavior is unlikely to change unless the fear goes down, the incentive goes up, or both. The significance of this understanding of recovery avoidance is that both fear and incentive can be modified to assist the RA. Remember, a useful explanation for problem behavior should provide clues for how to change the behavior. In the next sections, we discuss how families and friends positively and negatively influence both the fear and incentive of OCD sufferers.
How Do Family & Friends Unintentionally Contribute to Recovery Avoidance?
Before discussing this topic, it is important to address the sometimes overwhelming guilt and shame experienced by many family members, especially parents. Some parents worry the OCD is a sign of their inadequacy as a parent (“Was there something I could have done to prevent this?”). Please be clear. There is no convincing evidence the behavior of parents or any other family member causes OCD. Too many parents are tortured by misguided guilt and shame, blaming themselves for something over which they had no control. This level of self-criticism and overassumption of responsibility is harmful for everyone involved. Guilt and shame only complicate the already challenging task of dealing with OCD.
Does this mean families have no responsibility? Certainly not. Although families don’t cause OCD, family behavior can influence how a person deals with the OCD. And how people deal with OCD can determine whether or not they get better. It is pointless to ask, “Did I cause the OCD?” It is useful, however, to ask, “How can I support recovery?”
In order to understand how to support recovery, it is helpful to know what not to do and why. There are two ways in which family members and friends unintentionally contribute to recovery avoidance. The first we call “minimizing” because the person’s behavior minimizes the severity of the problem. The assumption underlying minimizing behavior is that the OCD sufferer should be able to change simply because of something the family member or friend says or does. Examples of this behavior include nagging, prodding, lecturing, yelling, threatening, pressuring, criticizing, name calling, shaming, etc. These tactics rarely achieve the desired effect. In fact, they are usually met with increased resistance and anger. The implicit message of minimizing is “you can and should change now,” a pressure which may only produce more fear and defensiveness.
Remember, fear is one of the factors behind recovery avoidance. The minimizing behavior of loved ones risks generating more fear, which can make an RA even less likely to seek treatment. The second way to contribute to recovery avoidance is called “accommodating,” also known by the more popular term “enabling.” Accommodating is engaging in abnormal behavior (i.e., behaving differently than you would around someone who does not have OCD) in order to help OCD sufferers avoid exposure to obsessive triggers or assist them to perform compulsions. Parents, for example, who have trouble witnessing their children experience frustration or failure, may do their children’s homework for them. Other examples include family and friends doing chores the person with OCD should be doing, repeatedly providing reassurance, complying with irrational demands, and unconditionally supporting an adult OCD sufferer financially. Accommodation sends the opposite message of that implied by minimizing. It says to the OCD sufferer, “you are incapable of doing these behaviors and we must do them for you.” Accommodation promotes recovery avoidance because it protects OCD sufferers from the natural consequences of their OCD and, thus, reduces the incentive necessary to actively pursue recovery.
How Can Family and Friends Support Recovery?
The goal is to support recovery from OCD. That means promoting the recovery of everyone affected by the disorder, not just that of the OCD sufferer. In order to accomplish this goal, family and friends must at times perform a balancing act. They must try to be understanding and empathic of the OCD sufferer’s plight, while gently but firmly refusing to participate in the OCD sufferer’s avoidance. They must stop trying to control the OCD sufferer’s behavior and start focusing on the things they can control – their own behavior. Here are a few things families and friends of an RA can do:
1. Learn as much as you can about OCD and its treatment.
2. Share what you learn with the OCD sufferer and with other family members and friends who are interested.
3. Express your concerns to the OCD sufferer about the OCD and the impact you feel it has had on his life and your own. And communicate your hope that s/he will seek help. Also, inform the OCD sufferer of any changes you will be making in how you deal with the OCD. Include other family members in the discussion if they are willing to participate. This should not be confused with nagging or lecturing. The type of discussion we are suggesting is respectfully prearranged with the OCD sufferer. It is not initiated spontaneously out of anger and repeated over and over. And it does not involve arguing. Make your point, but do not argue. You are there to express your concerns and perhaps to set some limits, but not to change anybody’s mind. Your well-being and that of the OCD sufferer do not depend on convincing him/her of anything right now.
4. Normalize your life as much as possible. By this we mean take steps to reduce the impact of the OCD on your life and any other participating family members and friends. This does not require the cooperation of the OCD sufferer. It does require that you stop accommodating the OCD. A family impaired by the stress of accommodating OCD is not in a state to truly help the OCD sufferer. They must first take care of their own health.
We do not suggest these steps are easy to implement. On the contrary, disengaging from minimizing and accommodating can be extremely difficult and stressful. You will be trying to change behaviors that may have become strong habits. These changes are likely to make you feel guilty or fearful (“Am I doing the right thing?”). It will not be easy to witness your loved one experience the distress of being less protected from the consequences of OCD. And you will need to be prepared to deal with the OCD sufferer’s negative reactions to the changes in your behavior.
Some people have tried implementing steps like these but were unable to follow through. It can be extremely difficult to do without help. When the OCD sufferer is participating in treatment, family and friends often receive guidance from the patient’s mental health professional. In this instance, changes in the family’s accommodation of the OCD are typically made gradually in collaboration with the therapist. Accommodation is withdrawn in a way that is sensitive to the patient’s level of progress. However, an RA often does not agree that changes are necessary and s/he is usually not in therapy. Without a therapist involved, family and friends have to decide for themselves at what pace they are going to withdraw accommodation. Fortunately, there are some resources available to help them.
What Help Is Available for the Family and Friends of a Recovery Avoider?
There are numerous resources to help family and friends learn about OCD and its treatment. It is well worth the investment in time to browse the many sections on quality web sites. Another resource is people who have been in a similar situation. On the internet, there are several chat rooms and bulletin boards related to OCD. Although mostly for OCD sufferers, many family members and friends seek information and assistance there as well. Also, check to see if there is an OCD support group that meets in your area. Many of them allow people other than OCD sufferers to attend and some even have special groups for families and friends. In addition, the International OCD Foundation’s annual meeting has many programs specifically for families.
Despite the value of resources we have already mentioned, many people need ongoing professional consultation to deal successfully with a friend or family member who is an RA. A therapist can help you anticipate and deal with real life complications that arise as you implement the steps we have outlined. Admittedly, you may have to search to find the expertise you need.
There is still a limited number of clinicians experienced with OCD and not all of them work with families. We suggest you begin by contacting OCD therapists in your area and ask them if they have ever provided this type of service. If you cannot find an appropriate therapist in your area, technology offers another option. Some of the major treatment centers provide ongoing phone or email consultation to families and friends of RA’s. For over 15 years, our clinic has been helping families from various parts of the country through long distance consultation.
The good news is there is hope for families and friends confronted with the difficult challenge of dealing with an RA. They have options other than minimizing or accommodating the OCD or waiting helplessly for the recovery avoidance to go away. They can begin by doing something for themselves and focusing their efforts on the things they can actually control. No matter what you do, there is no guarantee the OCD sufferer will ever decide to seek help. However, recovery avoidance is less likely to persist when those around the RA are actively seeking to improve their own quality of life.
Ms. Pollard is a staff therapist at the Anxiety Disorders Center and Clinical Instructor at St. Louis University School of Nursing. Dr. Pollard, PhD, is a Professor of Family and Community Medicine and the Director of the Anxiety Disorders Center at the St. Louis Behavioral Medicine Institute.