Think your Child has an Eating Disorder? 10 things you should know about what comes next.
Finding out your child may have an eating disorder can feel a bit like standing in the wake of a tsunami. All at once, you feel terrified, completely overwhelmed, very aware that you are out of your element and utterly powerless. Fortunately, the good news is that research is revealing all the time how important the role of the family is in the recovery process. You are your child’s strongest ally and will form a significant part of their healing journey. Below are some of the most important things you should know about the days that lie ahead.
It’s not your fault. In my career treating adolescents with eating disorders, a staggering portion of parents I have encountered have harbored a painful secret fear: This must somehow be my fault. Perhaps this self-blame is the natural response of a parent whenever their child encounters difficulty. Or, perhaps it’s a desire to control the outcome- if I am to blame, then maybe I can course correct and somehow guarantee that my child will get well. The truth is that eating disorders are the result of an extremely complex, extremely unique mix of many factors including genetics, personality, life experiences and cultural influences. Energy spent blaming yourself for something that is simply not your fault is vital energy wasted- energy that your child will need from you in the days and months of recovery ahead. Further, by placing unnecessary blame on yourself, you increase the chances, whether consciously or unconsciously, that you will act in ways that are unhelpful to your loved one: distancing yourself when you are most needed, becoming defensive instead of remaining open and available and avoiding or denying some or part of your valuable insights.
Trust your gut. Many times, the person with the eating disorder is one of the last to recognize that there is a problem. The clinical term for this is anosognosia. It is extremely common for those suffering from eating disorders to deny or significantly minimize a problem when confronted directly. In addition, eating disorders thrive in secrecy, and often the person suffering from the eating disorder is terrified of the detection because this would threaten their condition. This means that even previously very honest children, who have enjoyed an open relationship with their parents throughout their lives, may begin to cover up, hide, minimize and deny the existence of a problem. The bottom line here is that you know your child. You know when something is wrong and you can and should trust those instincts. You will not create a problem where one does not exist by demonstrating care and seeking appropriate clinical advice for your child.
Prepare to be in this for the long haul. Here’s the good news. The chances that your child will ultimately recover from their eating disorder are good, and when intervention is early, the prognosis only improves. However, most parents enter this process hopeful that this is just a small hiccup or a phase that, with proper treatment, will disappear just as quickly and quietly as it seemed to come on. Unfortunately, the truth is that while each recovery journey is different and it is nearly impossible to anticipate the needs of your unique child and predict the length of their treatment, research seems to indicate that the average course of active treatment typically lasts anywhere from 6 months to 2 years. In addition, most girls and women who struggle with eating disorder will not experience a linear recovery process. More than likely, it will be a process filled with peaks and valleys, successes and setbacks. And while many of the issues that plague them so strongly at the outset of treatment, will diminish significantly in intensity and be something they eventually learn to manage on their own, many will continue to face variants of these issues for decades into the future, if not a lifetime. Further, because many adolescents that struggle with an eating disorder are highly-sensitive and have a strong desire to please others, they are very susceptible to strong feelings of guilt and pressure related to the inconveniences and financial stressors their parents often encounter in the treatment process. One of the best gifts you can give your child in this process is to continually monitor and work through your own expectations of what the recovery process should look like. Without a doubt, your child has her own expectations of herself in recovery, and those expectations are likely to be much more stringent than your own. So, let her know that she is well worth this period of investment in her health and happiness, that she can count on your support and that you know that she can do this, and that you will remind her of these facts whenever she needs. But please, for your own sanity, prepare for the marathon (and, if you’re lucky, welcome the sprint).
Seek specialized treatment. While any therapist, social worker, psychologist or psychiatrist technically can treat an eating disorder, finding a provider with specialized training and experience in this area is integral to the success of treatment. And because the prognosis for treatment is significantly better with early intervention, it is important to get the right help for your child from the start and not waste valuable time in treatment that is ineffective or inappropriate for your child’s needs. While most providers that do not have experience treating eating disorders recognize that this out of their scope of competence and will refer out, others may not. Do not be afraid to ask questions about a provider’s training, experience and expertise prior to beginning treatment. In addition, eating disorder treatment varies dramatically by type of diagnosis, so a provider experienced in treating bulimia or compulsive overeating, for example, is not necessarily best qualified to treat anorexia, which requires weight restoration and medical stabilization as an essential part of beginning treatment. Many eating disorder providers have experience working with a variety of diagnoses and can effectively treat a variety of eating disorders, but it is always best to save the assumptions and ask directly about their training and experience relative to your child’s specific concerns.
Get comfortable with a treatment team approach. In many cases, especially in the early and middle phases of treatment for an eating disorder, a multi-disciplinary team is required to provide comprehensive treatment and to ensure the safety and success of your child’s recovery. A mental health therapist, who often oversees and coordinates care in addition to providing essential psychotherapy services, is not qualified to address essential components of recovery such as meal planning and determining caloric needs, prescription of psychotropic medication to address underlying anxiety and/or depression, or to monitor weight restoration or ensure medical stability (unless they have addition licenses as a registered dietitian, physician or physician’s assistant). It is always best practice for a therapist to have any new client complete a physical exam relative to the eating disorder concerns that have come to light. Basic functions of this appointment should include, at a minimum: a general physical, including vital signs and blood work to rule out co-occurring medical issues, establishment of an accurate current weight and a discussion of healthy body weight range for recovery, and specific labs to determine electrolyte imbalances and enzymatic indicators of specific eating disorder behavior and/or malnutrition. Many providers will also schedule an EKG to ensure normal heart functioning. Depending on the severity of the eating disorder, your physician will work with you and your therapist to determine how often your child should be seen to have testing and medical monitoring repeated. Similarly, a registered dietitian is often a core part of the treatment team, co-creating and monitoring meal plans, monitoring blind weights, and providing education and experiential challenges to restore or create a healthy relationship with food. The frequency of these visits will vary with your child’s specific needs. Lastly, another common part of the recovery process often includes psychotropic medication to treat co-occurring psychiatric issues that can complicate treatment. Such psychotropic medication is most often prescribed either by your child’s primary care provider or through a referral to a psychiatrist. For further information and a helpful resource to guide discussion with your child’s primary care physician, please see the Academy of Eating Disorder’s (AED) Guide to Medical Treatment here.
Remember that a higher level of care is not an indicator of failure or poor prognosis. As described above, the standard of care for eating disorders is a multi-disciplinary approach encompassing psychological, medical and nutritional care. One of the best ways to receive such concentrated and comprehensive care is through an inpatient, residential, partial or intensive outpatient hospitalization program. Depending on the severity of the eating disorder, it is sometimes just not practical to replicate the amount of services your child requires on an outpatient basis. Other times, due to complicating medical or psychiatric issues, an individual may simply not be safely managed in an outpatient level of care. And in still other cases, despite receiving adequate treatment, an individual may not progress in outpatient treatment as necessary. In these scenarios, an outpatient provider will suggest seeking a higher level of care for your child. Understandably, most parents (and clients!) want very much for treatment to be completed with the child remaining in the home and with the least amount of disruption to their normal routine as possible. However, in almost all cases, treatment at a higher level of care is extremely beneficial and often jump starts, or allows access to, the outpatient work which will still need to be completed after stepping down. This is a normal outcome in eating disorder recovery and should not be viewed as failure, but instead as an opportunity to provide your child with the best possible care for their needs at the moment.
Let education be your ally. Simply put, the better informed you are, the better ally you can be to your child. Seek out information continually, read and learn about eating disorders and how parents can help. Read here for further information, or explore any of the following reputable sites, all of which contain additional recommendations for further reading:
National Eating Disorders Association (NEDA)
The Academy for Eating Disorders
Families Empowered and Supporting Treatment of Eating Disorders
Seek support for yourself. While it is important to note that eating disorders are biologically-based illnesses and are not the fault of the person suffering, it is additionally important to recognize that having a child with an eating disorder disrupts the entire family system. Particularly for parents, who in addition to their normal role, have now become the front-line therapists, nurses, supporters and advocates for their child, compassion fatigue and burn out are predictable, normal responses to an inordinately stressful situation. Parents should take care to engage in their own regular practices of self-care, not out of luxury, but necessity. It is highly recommended for parents to find a mentor or therapist of their own with whom they can safely and neutrally work through and process strong emotions. Further, many parents find that the most helpful thing they can do is access support from and share insight with other parents and families who have a loved one with an eating disorder. There are online mentors and support forums available, such as NEDA Navigators and F.E.A.S.T’s Around the Dinner Table Forum, and your child’s therapist should have referrals available for local family support groups, as well, depending on location.
Manage your expectations, manage your expectations, manage your expectations. Many adolescents struggling with eating disorders are high-acheiving, creative, intelligent, competitive, athletic, driven and capable young people. It can be disorienting to say the least when your child expresses a desire after beginning treatment to withdraw from activities, roles and relationships that they previously found enjoyable or seem fail to challenge themselves academically in the same way. However, for many struggling with an eating disorder, reducing external demands temporarily until they can learn to cope with the pressure in a healthier way can be an extremely vital part of the recovery process. For others, some of the pressures, relationships, roles and demands that were previously a part of their identities will not find a place in a healthy recovery-based future. But do not despair! Relapse prevention planning, or the evaluation of one’s environment and its conduciveness to recovery, is actually one critical element that demonstrates a healthier mindset and indicates better prognosis for recovery. Have faith that your child will eventually learn to embrace a new, fuller identity. Communicate your concerns with your child’s treatment providers and determine to trust their experience and leading. And most critically, let your child know that there is nothing you value more than their health, praise them for taking their recovery so seriously and remind them that your love for and approval of them is not based on any condition of their performance.
Resist the temptation to provide feedback to your child about their weight or physical appearance. It is frustrating enough when your child appears obsessed with their body weight and shape to the exclusion of all other qualities, values, talents and attributes they possess. It is even more perplexing and frustrating for a parent when your child’s perception of their physical appearance is grossly inaccurate and your child is responding to these misperceptions with considerable distress and fear. The temptation to reassure them that things are not as they seem is very great. And certainly, nearly everyone struggling with an eating disorder would welcome direct feedback about their appearance, and most will chronically seek out that external validation. The problem with this is multi-faceted. First, often the person struggling with the eating disorder will also receive feedback through the lens of the eating disorder, i.e, in a distorted way, with an ear to confirm their fears. Second, by providing consistent feedback in the areas of weight and body shape, we unintentionally confirm their importance as something we highly value and use to evaluate others. Third, “fear of fat” is not the true issue. Most often, the person struggling with an eating disorder unconsciously hyperfocuses on weight as a way to distract from other anxieties and stressors in their world, and feelings about their physical appearance come to represent all of the areas in which they feel inadequate and out-of-control. In responding only to fears about body shape and size, we never truly soothe the root fears beneath and the cycle continues. And finally, if in an attempt to provide reassurance, a parent were to offer feedback that their child’s perceptions of their own physical appearance are completely inaccurate and their fears that they will become obese are silly and unrealistic, this parent unintentionally invalidates the child’s feelings and runs the risk of adding to feelings of isolation, shame and rejection. So, what’s a parent to do?! First, even though you don’t share and can’t agree with your child’s perspective, you can always empathize with what it must feel like to be in their shoes, to be struggling with such intense fears and feelings of failure and constant self-recrimination. Ask if there is something you can do to support them while they are struggling- whether to provide some distraction, some comfort or to just be present with them. This is and of itself is a tremendous way to support and validate your child’s very real feelings, fears and experience. On occasion, it can sometimes be helpful to gently ask in what other areas of life your child may be feeling this way. Even if they do not have an answer at the moment, and in many cases they will not, this will, at the very least, draw their attention to the fact that these feelings have very real roots in other areas of their life and symbolize much more than just “feeling fat”. In fact, in eating disorder treatment, the old adage, “Fat is not a feeling,” is a common one!