“I Don’t Have a Problem!”
Anoso-what? Understanding the Basics of Anosognosia
Anosognosia is an extravagant term borrowed from the neuropsychological/neurological world, which essentially means that person is unaware or “in denial” of their illness or symptoms of their disorder as a result of a brain-based issue (Prigatano & Schacter, 1991). This term has since been used by eating disorder professionals to describe the very common symptom of denial that patients with eating disorders are known to show, particularly upon admission to the hospital. In other words, anosognosia is present when a person truly believes that there is no problem and that they do not have an eating disorder (which is different than when a person knows they have an eating disorder but are keeping it secret from others).
Often this is supported by what they see in the mirror, as they typically see themselves as normal weight or perhaps even overweight even though the world may view that same person as dangerously underweight. Psychologists, Bryan Lask and Ian Framptom (2009) describe anosognosia associated with eating disorders as confusing, since there are times when the person fluctuates from having insight into their problem to other times when they appear to switch to instant denial. This type of shifting insight into whether a problem exists can be particularly disheartening to families and loved ones who are coping with a family member affected by an eating disorder. It can also be particularly challenging for clinicians working with these patients in therapy.
Determining whether anosognosia exists in a person with an eating disorder is relatively uncomplicated. Clinicians can identify when anosognosia is present for an individual simply by listening to the differences in what they are saying (verbal communication) in contrast to how they are present physically and to what they are doing (nonverbal communication). Specifically, an individual struggling with anosognosia may attempt to persuade others of their belief that they do not have an eating disorder by saying things such as, “I’m not the one with the problem,” “everyone is blowing this out of proportion,” “there is nothing wrong with me.” On the contrary, they may also indicate that they really are overweight and report that they see an overweight person when they look in the mirror. However, though their words indicate no issue or that their feelings are justified, the person’s physical health and behaviors may suggest something extremely different.
The individual may present looking particularly gaunt, appearing to be afraid of food, having strange habits with food, restricting their caloric intake, over-exercising or taking part in other extreme behaviors that are anything but healthy (here is a full list of symptoms associated with eating disorders). The vast difference between what the person with anosognosia sees/believes of themselves and the reality of what their condition really is can sometimes be so different that it can feel impossible to know how to help. We have heard families ask, how do you help someone who does not know they have a problem? Honestly, that is a great question to ask and not the easiest to answer – but there are things that can be done to help!
The first step in this process is to know that as a family member or loved one of the person with the eating disorder, you do have power! One of the most important things you can do is be clear in your own reality to avoid getting caught in the web of ED. Anosognosia can be tricky and can permeate the family system if family members are not discerning and vigilant!
How Anosognosia Can Extend Beyond the Patient and Into the Family
How do loved ones identify if they are under the spell of ED? Watching a loved one experience the physical and psychological dangers associated with eating disorders can often leave the family feeling extremely powerless in this fight. Psychologist Sarah Ravin, Ph.D. (2011), supports this, noting that anosognosia is particularly dangerous especially when the patient feels indestructible while the support system is watching the loved one make self-destructive decisions. As a result of this distressing situation, the family can sometimes unknowingly “collude with the eating disorder”. This may occur in different ways, including believing the explanations made by the patient with the eating disorder (e.g., believing it is an unknown medical issue rather than a psychological issue, stating the child was always thin and not recognizing that weight loss indeed has occurred, etc.).
In addition, the family may relent to bargaining with the family member in order to get them to eat anything they are “willing to eat.” Furthermore, it is not uncommon to see families change their eating patterns to accommodate the eating disorder (e.g., preparing different meals for different family members, allowing the individual with the eating disorder to eat separately, etc) in an effort to get the family member with the eating disorder to consume food. Unfortunately, none of these strategies work to assist the person with the eating disorder in getting well – in fact, on the contrary, this often unintentionally supports the eating disorder strengthening and gaining power over the entire family, not just the patient.
How families can regain their power through externalizing ED. One of our most highly recommended strategies to help develop separation between the family and the eating disorder is to externalize the eating disorder – recognizing that the patient is not their disorder, but rather, their disorder is simply something they are struggling with. When the family externalizes the eating disorder, this immediately helps them to recognize and begin to identify when the anosognosic patient is “speaking” through their eating disorder and when they are using their own voice. Externalizing ED can help decrease shame that families sometimes feel when they realize they have been manipulated by the eating disorder and when they begin to see the devastation (both physical and mental) that has occurred as a result of the eating disorder. In addition, it can lead to family members reducing blame and all involved can begin accepting responsibility for their role in the patient’s recovery. Externalizing the ED implies that the patient and family can develop the skills to manage the symptoms of the eating disorder, much like, a patient with diabetes is expected to manage the symptoms of their condition.
Our extensive clinical experience reinforces the significance of helping the family to regain their power and begin to trust in their ability to parent again. Externalizing the eating disorder will help the family to increase awareness of the ED behaviors and to follow through with treatment recommendations even if the patient insists they do not have a problem. Dr. Ravin supports the importance of the family as the first line of defense against the ED, noting that individuals with anosognosia should never be expected to seek treatment on their own because they initially lack the insight to do so until they are far into recovery (Ravin, 2010). This is one advantage of family-based treatment.
What to do for ED Patients That Have Anosognosia
People often have feelings that symptoms of anosognosia cannot be treated. However, the research (and our personal clinical experience) shows that there are many things that can be done to assist with reducing the effects of this symptom on the patient and on the family. One of the most important first steps is for the family to realize their role in the recovery process, externalize the eating disorder, and remove the spell of the eating disorder on the family. Once this has occurred, using motivation can be a very effective strategy for beginning to help the patient externalize and separate from the anosognosia. Self-determination theory (SDT) can help us to understand how to use motivation effectively to create change (Ryan, Deci, Grolnick, & La Guardia, 2006). SDT states that there are two types of motivation, including internal motivation (i.e wanting to get better) and external motivation (i.e., earning rewards, or decreasing internal pressures like guilt, etc.) – both can be used effectively to help the person separate from ED.
Internal and external motivation: How can we use it in treatment? Ultimately, we want to help the person with an eating disorder to be driven by internal motivation of wanting to be healthy; however, initially that may be very unrealistic given that the anosognosia will not allow them to see that there is even a problem. That leads us to the importance of first using external motivations that will allow the person to earn things they want (e.g., video games, reading, activity, time with friends, etc.) when they are able to complete healthy behaviors that support recovery.
This type of positive behavior management is the very system we use at the Center for Pediatric Eating Disorders, and it is extremely effective. Our experience shows that as patients are externally motivated to complete healthy behaviors, they have the space to begin to understand the impact of the eating disorder, hence moving out of the anosognosic state. Eventually, with enough time and space from the eating disorder and increased mental clarity (through the assistance of nutritional/psychological therapies), the motivation moves inward and becomes internal in nature.
Using gentle confrontation and “brave parenting.” Psychologist Eva Shoen, Ph.D. and colleagues (2012) notes that feedback from others can be the most important first step in breaking through the anosognosia. Mental health activist Laura Collins (2010) uses a parental point of view, noting that parents need to reframe their child’s lacking desire to get well as “can’t rather than won’t.” Essentially, she is pointing out that child is not choosing to lack the insight; rather, it is simply a symptom of the disorder that can be overcome. Furthermore, she suggests that parents “insist on restoring the insight” by taking their children to appointments and following through with treatment recommendations. This is an excellent recommendation and is one of the most critical things a family member can do while they are awaiting the anosognosia to abate. Finally, Collins (2010) challenges parents to “be brave” in their parenting and continue with what they know is right even if the child gets upset at the parent for doing so.
As clinicians who have seen children’s reactions to treatment, we will add that it is reasonable to expect that the child (and their eating disorder!) will be very upset that you as a parent are no longer following the rules of the eating disorder. Feeling prepared for these reactions can make them less stressful for you and easier to “be brave” in your support.
Take Home Points
- Anosognosia in eating disorders is an unintentional denial of one’s eating symptoms that can be disheartening for loved ones who see the person struggling with an eating disorder.
- Families need to protect themselves from becoming manipulated by the eating disorder, and one way to do so is to externalize the eating disorder from the person suffering from the disorder. Recognize that the disorder will try to convince the entire family that there is nothing wrong, leading to the family “catching the disease” of anosognosia.
- Families need to recognize that a person with anosognosia cannot be expected to seek treatment, as they are unaware of the disorder; therefore, those closest to the anosognosic person are the first line of defense and need to listen to the treatment recommendations of the skilled treatment team.
- Self-determination theory supports the use of external motivations as an initial reward system to motivate the individual to choose healthy behaviors. With consistent use, internal motivation for recovery can be achieved over time.
- Families can help break the anosognosia through use of gentle confrontation and “brave parenting.” These articles may be helpful:
About The Authors:
Kelsey M. Latimer, PhD, is the lead psychologist in the Center for Pediatric Eating Disorders of Children’s Health/Children’s Medical Center Plano. She works in all levels of care, including inpatient and partial hospitalization and leads the intensive outpatient program. Her research is focused on eating disorder prevention and intervention, and clinical outcomes of eating disorder programs. She is also an Assistant Professor of Psychiatry at the University of Texas Southwestern Medical Center.
Sonia Schwalen, PhD, is a psychologist at the Center for Pediatric Eating Disorders at Children’s Health Plano and is an Assistant Professor in Psychiatry at UTSW. Her primary areas of research include the spectrum of pediatric eating disorders (e.g., anorexia nervosa, bulimia nervosa, binge eating disorder, and obesity), linking systems of care for parents and families, and issues in supervision.
They can be reached through the Center for Pediatric Eating Disorders Website.
Collins, L. (2010, May 12). My Daughter Does Not Want to Recover From Her Eating Disorder. Retrieved April 15, 2016.
Lask, B. and Frampton, I. (2009), Anorexia nervosa—irony, misnomer and paradox. European Eating Disorders Review, 17: 165–168. doi: 10.1002/erv.933
Latimer, K., & Schwalen, S. (2016, April 01). “I’m Not Going!”: How to Talk with Your Child About Hospitalization for an Eating Disorder – Eating Disorders Catalogue. Retrieved April 15, 2016.
Prigatano, G.P., & Schacter, D. (1991). Awareness of deficit after brain injury: clinical and theoretical issues. Oxford: Oxford University Press. ISBN 0-19-505941-7.
Ravin, S. (2011, June 12). Insights on Insight. Retrieved April 15, 2016.
Ryan, R. M., Deci, E. L., Grolnick, W. S., & La Guardia, J. G. (2006). The significance of autonomy and autonomy support in psychological development and psychopathology. In D. Cicchetti & D. J. Cohen (Eds.), Developmental psychopathology: Theory and methods (2nd ed.). New York, NY: Wiley.
Shoen, E., Lee, S., Skow, C., Greensberg, S., Bell, A., Wiese, J., & Martens, J. (2012). A retrospective look at the internal help-seeking process in young women with eating disorders. Eating Disorders, 20, 14–30, DOI: 10.1080/10640266.2012.635560
Written – 2016