It is very common, indeed it is one of the hallmarks of the illness, that patients resist treatment. Parents and family members often find themselves arguing with the patient trying to convince him or her of the seriousness or the facts of the illness. While friends and families see an illness causing damage and pain often the patient remains convinced the situation is under control. Patients often hide symptoms and trick family and even doctors into believing things are better than they are. This is especially frustrating when the patient is able to maintain other parts of life, like work and athletics and academics, at a high level at the same time believing one can ingest calories from smells or that food is unnecessary.
It is very important that families know that eating disorder patients are often "anosognosic." They are blocked in their own minds from seeing the gravity of the illness or the risk of the behaviors. This is a condition similar to that found in certain brain injuries, but is reversible. With full nutrition and normalized eating and behaviors the patient can regain self-awareness and engage in therapy and learning that nurture insight and motivation.
Regardless of age, families should not delay treatment while waiting for insight or motivation, or settle for treatment that only addresses insight and motivation without also including medical treatment and restoration. Whether the patient is able to understand or not, the family can do everything possible to facilitate treatment. In other words, the level of resistance ought not guide treatment decisions.
Families should be aware that resistance to treatment can come in many forms including hiding food, faking weights, self-harm, verbal and physical attacks on care givers, false or distorted stories to authorities, threats of suicide and self harm, actual suicide and self-harm. Keeping patients and other family members safe while refusing to enable eating disorder behavior is the highest priority during eating disorder recovery. Patients and siblings need to know that the anxiety and resistance of the patient will neither delay care nor will it be allowed to harm anyone. As difficult as recovery is, delayed recovery is harder. Although early intervention and firm boundaries in the home can be enough to contain resistance it may also be necessary to use inpatient care when situations arise that the family cannot handle safely at home. The time a patient is hospitalized is an opportunity for the family to create safe boundaries for after discharge.
"Some patients lash outward during the necessary anguish of recovery, some suffer invisibly, but the pain is there. When parents and care givers react with anger, or with avoidance, we can inadvertently aid the illness. Our confident, optimistic, firm support is so important in helping our children feel safe." Laura Collins, F.E.A.S.T. Executive Director.
One tool for families to use when trying to understand eating disorders is to "separate the illness from the patient." This concept has many names, including "narrative" therapy and "externalization," and can be very helpful to caregivers. By seeing the actions and reactions of the patient as belonging to "ED" or "the illness," the parent can be freed from anger at the loved one and ally with the patient being held hostage and out of sight by this malignant condition. Anger, frustration, bargaining, arguing, moral pressure, fear: all of these may be set aside when a parent knows they are not dealing with the loved one directly, but through the illness. The love a parent feels, as well as the optimism, need not be dependent on a loving or insightful response. By not taking the resistance, anger, and desperation of the patient personally, a caregiver is also free to make decisions based on the patient's needs and not his or her words.