Why It’s Not Denial: How Anosognosia Impacts Eating Disorders

If you have a loved one struggling with an eating disorder, it’s likely that you have felt a wide range of emotions—from scared and confused to frustrated and helpless. Those feelings can amplify when you hear your loved one saying that they are “fine” when they clearly are not. Why do people with eating disorders refuse help at times? How can families best support them through it?

For families watching as loved ones struggling all the while saying that there is not a problem, emotions can run high. The answer may seem straightforward—get help, now. You want them to attend their doctors’ appointments, see their therapists and dieticians, get their blood work done, but they are refusing eating disorder treatment. For the ones struggling, it may feel confusing or unclear that you are raising an alarm. It is important to remember—it may not be denial or minimizing. It may be anosognosia.

Anosognosia is a brain-based inability to register the risk of an illness. It can happen in those with schizophrenia, strokes, or traumatic brain injuries, but it also can happen to those struggling with an eating disorder, most often with anorexia. Essentially, there is a lack of insight because the eating disorder is affecting the part of the brain that registers danger. Symptoms of malnutrition are affecting brain function, as the brain literally shrinks as grey matter is lost.

 For those with eating disorders, anosognosia might sound like:

“The doctors are overreacting.”

“I’m not that sick.”

“I’m not at risk. My team is just being dramatic.”

Like those with traumatic brain injuries who do not see the cognitive impairment, those with eating disorders may not see the impairment they are experiencing. What seems straightforward may not “get through” to them.  What’s important to remember is that anosognosia can fluctuate (there can be moments of insight), it can resolve once the malnutrition is rectified, and support is still needed every step of the way.

I often hear from parents, as they question when to intervene when their child has an eating disorder but is not ready for eating disorder recovery. It becomes increasingly more complicated if their loved one is an adult, since adults are autonomous and get to make decisions regarding their care. This question- “What can I do?”—is an important question that will vary from family to family. However, the following do’s and don’ts may provide some guidance.

Don’t

- Wait for your loved one to be ready before taking action. It is incredibly difficult to watch a loved one struggling with an eating disorder, especially if they are not understanding the gravity of the situation. To add to the complexity, adults who are struggling still have the autonomy to decide when—if at all—to get treatment. While patient autonomy is vital in eating disorders and recovery, do not wait to provide support. Trust your gut. If it feels urgent, it probably is. Find ways to support your loved one every step of the way. What does support mean to them? What does it mean to you?

-Engage in a debate. You may find yourself approaching the situation using the rational part of your brain to point towards evidence of risk.  While this makes sense to someone without an eating disorder, debating that your loved one is malnourished, that their labs are “bad”, etc. will likely only bring defensiveness, especially when speaking with someone with a malnourished brain.

-Broach the topic when your emotions are high. You are scared, and that makes sense. You want your loved one to be safe and live life to the fullest. However, approaching a conversation when emotions are high can also create defensiveness in your loved one or push them farther from opening up.

Do

-Use wise mind. In therapy, wise mind is a synthesis of the logical and emotional mind. It does not overpower or flood with emotion and it does not get stuck in rigidity. Wise mind may sound like,

“I’m concerned because you fainted and I want you to be safe.”

“I can’t ignore how little you are able to function right now. We don’t need to agree. I need you safe.”

Using wise mind helps communicate the message while helping you remain focused on the task at hand.

-Set boundaries. Healthy boundaries are needed in every relationship but may vary from family to family. Some specific boundaries might include safety, including when your loved one can use the car (if you own the car), frequency of appointments, and when and where you discuss concerns. Remain consistent in your boundaries and remember that they are “limit lines”, not threats for your loved one with an eating disorder.

-Use calm, repetitive language. Using “I statements” that are clear and concise help maintain the direction of the conversation and decrease the possibility of defensiveness. Calm tone of voice helps keep everyone out of “fight or flight” mode.

Clarifications

Anosognosia is not often talked about in the eating disorder community, but it is vital to be aware of in order to consider next steps for treatment. Anosognosia is not the same thing as denial or ambivalence.  It is not taking away the fact that your loved one has responsibilities to meet, nor does it indicate that they are a hopeless cause. It is a signal of impairment that needs a full-team approach and familial support. Research shows the importance of family involvement in eating disorder treatment, and increased understanding of the disorder’s impacts on the body can create space for increased empathy and understanding.

Remember, you cannot argue your loved one out of an eating disorder. Eating disorders are incredibly complex and often serve a very important function in the lives of those living with them. Often times the recovery process can be arduous, and it is important to give yourself space to grieve. Eating disorders do not happen in a vacuum, and it impacts the entire family system. Feel your feelings so that you can have space to give support and compassion, with limits.

Because of the impact an eating disorder can have on a family, please reach out for support in some manner. FEAST is an incredible resource for families created by families who have been through it. There are blogs, support groups, and individual peer support opportunities. The National Alliance of Eating Disorders has support groups for loved ones as well. While there are limited resources for supporting adult children who are struggling, Sick Enough by Jennifer Gaudiani and When Your Teen Has an Eating Disorder by Lauren Mulheim are helpful books that discuss eating disorder care. If you are looking for individualized support, I encourage you to reach out for a 15-minute consult call today.