In this section, we reflect on our experiences merging our two fields. The members of the team who are couple researchers and therapists (DB and JK) did not have extensive prior experience with eating disorders. The eating disorder researcher was trained in family therapy but not couple therapy. Our coming together to create UCAN was illuminating for both sides. In this next section, we describe our individual experiences with merging our fields and clinical approaches.
Reflections on the couple-based approach by the eating disorders professional (CB)
Historically and typically, partners are not systematically included in the treatment of adults with AN. Inpatient models may at best include partners at admission and discharge, in family weekends, or family meetings either face to face or by phone. Often family sessions are tailored more for parents than partners, and they inform rather than engage. The partner may be enlisted in times of crisis, to assist with financial matters, or for instrumental support; however, typically they remain in the dark about the complexities of the recovery process.
Not including partners in treatment perpetuates a culture of secrecy and maintains “no talk zones” around many aspects of the eating disorder. In many ways, allowing this secrecy to continue colludes in maintaining the disorder. In developing and piloting the UCAN trial, it became clear how poorly informed partners were about the illness. Many believed their loved ones were choosing to starve and failed to appreciate the underlying biological aspects of the illness. Most partners had preconceived expectations that recovery would be linear and had great difficulty appreciating, but also great relief when they learned, that recovery from AN was anything but a linear process. AN effectively mutes partners. Their deep concern is often trampled by the force with which the illness pummeled or scared them into silence. Partners clearly appreciated the gravity of the illness and feared for the patients’ lives, but they were often cornered into positions of learned helplessness, unable to find strategies or approaches that could “get through” to their loved one.
Traditional approaches in which the partner was not included are clearly highly frustrating and confusing for partners. The patient is hospitalized, in residential treatment, or in outpatient treatment, and none of the details of the therapeutic work is shared with the partner. The partner does not know when weight is increasing, when exchanges are being skipped, what is enough exercise, etc. They are effectively shut out of everything related to the eating disorder which permeates most aspects of life and have no idea what is therapeutic and what is not. Without guidelines partners remain deeply fearful that no matter what they say, they will do harm. AN mutes them and rules the relationship.
A useful parallel to consider is a patient with diabetes. Imagine if the partner had no information about what caused diabetes, what was an appropriate diet, when insulin or glucagon was required, and what a diabetic crisis looked like. The partner would live in constant fear and be ill-prepared to deal with the medical crises that would emerge if the patient was non-compliant with treatment recommendations. With no point of reference or anchor in “normality,” partners of individuals with AN simply have no idea what patients need to eat to maintain weight, how they need to curtail exercise, or how damaging laxative use can be, for example. Precisely because they love and care for the patient, they struggle with when to believe them and when to challenge. AN erodes the basic trust essential to a healthy relationship.
Partners also sacrificed their own health for the well-being of the patient. Many partners gained weight as they attempted to “eat with” the patient, hoping that this joint activity would encourage her to eat more. Others stopped exercising because the patients would be envious of their time at the gym or compete for who exercised more. Other partners became completely exhausted by not only having to be the primary or sole wage earner, but also taking over all shopping, cooking, and family feeding activities because they were too triggering for the patient. We have done a disservice to partners for years by not appreciating the magnitude of their co-suffering and proving them with a blueprint for dealing with AN.
One heartening observation from the UCAN trial is the dedication that the partners showed to the patients and their recovery. These partners gave their all once they knew what and how to give. In most cases, their love and dedication survived the challenges posed to the relationship by the complexities of the illness. For some, the distrust, secrecy, and distance were simply too pervasive to recover from. Occasionally AN creates irreparable damage to relationships arguing for earlier rather than later partner involvement in treatment.
Hopefully the inclusion of the partner in treatment also can help to address a major challenge in treating AN, a high rate of treatment drop-out and premature discontinuation. In part this high drop-adult in adults stems from patient ambivalence about recovery and deep-seated fear and discomfort with weight gain. Unlike other forms of psychopathology in which the patient is eager to achieve symptom remission, individuals with AN desperately cling to the starvation state. Theoretically, many believe this is because food restriction and exercise serve an anxiolytic role in these individuals who tend to be temperamentally anxious and dysphoric. Our treatments and the weight gain that entails, rather than leading to a greater sense of calm and decreased anxiety, actually can increase anxiety and dysphoria until other approaches at emotion regulation can be effectively implemented. We have observed that engaging the partners in treatment is clearly associated with lower drop-out. Their presence can help the patient keep her “eye on the prize” and weather the temporary discomfort and recrudescence of anxiety associated with renutrition and weight gain with an eye towards biological normalization and the eventual ability to manage anxiety and dysphoria by more effective means than starvation. There were many points during the UCAN clinical trial where, had patients been in individual therapy, we may never have seen them in the clinic again. But the partners, after already putting so much effort into team recovery, played an active role in keeping the patients in treatment. Remaining in treatment is a critical outcome for the treatment of adult AN and perhaps the greatest contribution of the UCAN approach.
Reflections on anorexia nervosa by the couple intervention team (DB, JK)
Providing a couple-based intervention for AN results in several challenges, some inherent to treating AN, and some more unique to the couple intervention format. First helping the couple work together to treat AN is complicated by the fact that there are no established efficacious interventions for adult AN. In many instances, our couple-based interventions for individual psychopathology build upon well-established, efficacious individual treatments, attempting to make these interventions more robust and with greater maintenance of gains by including a partner. For example, in a different context, DB is involved in evaluating a couple-based intervention for obsessive- compulsive disorder (OCD). Exposure and response prevention has been demonstrated to be a highly efficacious individual intervention for OCD. Our couple-based interventions build upon this strategy, having the partner assist in exposure outings, helping the couple incorporate exposure to anxiety-provoking aspects of life into their everyday routines in an informal fashion, and helping the partner understand how to avoid providing inappropriate, anxiety-reducing strategies such as providing reassurance to the patient. Because such well-documented individual interventions for AN have not been demonstrated, what to include in couple-based interventions for AN is less certain and must build upon the current state of the field, even though limited.
Second, as noted previously, the couple therapist is only one of several persons providing psychosocial intervention for the patient, with involvement from an individual therapist, dietitian, and psychiatrist. For many couple therapists, this is an atypical treatment context. In many of our previous interventions for psychopathology (e.g., anxiety disorders) or health concerns (e.g., osteoarthritis, cancer, cardiovascular disease), the couple-based intervention is the sole psychosocial intervention. In treating AN, there must there be frequent, ongoing communication among all these treatment providers in order to clarify roles and maintain a consistent treatment approach across providers. In addition, the couple therapist must become comfortable with the world of hospitals and, perhaps, eating disorder programs. Due to rapid psychological deterioration or complicating medical conditions, at times patients with AN need a high level of care such as partial hospitalization or inpatient treatment, and such decisions need to be made quickly. The couple therapist must learn how to function in this complex medical system that requires rapid communication and response. This is in contrast to many couple-based interventions in other contexts in which the therapist sees the couple weekly, with little communication or coordination between sessions.
Third, a major complicating factor in a couple-based intervention for AN results from the fact that many patients with AN are not motivated to recover or at least have strong ambivalence regarding making eating-related changes. This is a complicating factor in treating AN in general but poses additional challenges in a couple-based intervention. In a couple-based intervention, a partner’s role is to help a patient make needed changes. However, this becomes difficult if the patient does not want to make these changes. Contrasting goals between the two members of the couple in terms of eating-related changes runs the risk that their interactions might come adversarial and a power struggle can ensue. That is, the patient can experience the partner is attempting to control the patient’s eating behaviors. Given that the theme of control is central to many individuals with AN (Bruch, 1980
), this can provide a context for reactance from the patient who feels the need to assert her autonomy and challenge her partner’s attempts to change her eating behavior. This can solidify her commitment to maintain her eating disorder and shut her partner out of the process. Our experience is that a skilled couple therapist can address these issues and help the couple avoid control and power issues relating to eating, but it is a complex and challenging issue even for a skilled therapist.