From One Parent to Another – What I’d Like You to Know
By Caroline R. Blaire
When asked to share “three points parents would benefit from knowing,” I only needed a few moments for three to rise above all others, in matter of importance from my perspective. This information and more is further discussed in my new book, Eating Disorder Recovery: A Simplified Guide for Families. Although my experiences are specifically with supporting recovery from anorexia nervosa, some of the information presented here may apply to other eating disorders as well.
Like most parents with a child struggling with an eating disorder, I learned all I could to help my daughters (yes, daughters!) recover. However, there is some important information that I learned later, which would have helped greatly when we were in the midst of our family crisis—two daughters struggling with anorexia nervosa at the same time.
I urge you to seek professional help. Whether choosing family-centered, family-based, or another treatment option, the highly skilled professionals that specialize in eating disorders are there to help your child (and you) every step of the way. Parents play a key role in facilitating recovery. Work collaboratively with the team of specialists to help your child.
It’s not my place to discuss the nuts and bolts of treatment, as that is the domain of the professionals. I can provide practical information to serve as a foundation to help you participate effectively. Understanding causation, motivation, and personality changes with anorexia nervosa will help you stay the course and feel confident that your child can recover.
Sure, I understood that eating disorders are mental illnesses and often cause someone to feel and see themselves differently, heavier than they really are. Essentially, this was the extent of my knowledge and at the time I thought this was enough. I was wrong. Had I understood this illness, as I do now, I am certain I wouldn’t have wasted valuable time and energy blaming myself, feeling guilty, and trying to figure out what I was doing wrong as a mother to have caused both of my daughters to develop this. I am certain I would not have ignored the signs out of embarrassment about my abilities as a mother and sought help much sooner. Delaying getting them the help they both needed put both of my daughters’ lives at risk, as both of their conditions deteriorated quickly. I would have been less frustrated, and more patient and empathetic. I would not have thought, or even worse–said out loud, such things as Why won’t you just eat? or Just stop! I would not have underestimated the power the illness has over those it afflicts nor oversimplified the remedy, which only left my daughters feeling further misunderstood and frustrated. My lack of knowledge added to our collective stress.
Learning how an individual with anorexia nervosa experiences negative energy balance was an ‘ah-ha’ moment for me. It all made so much more sense. In my opinion, it is only logical to first discuss the role of genetics. The Academy of Eating Disorders (AED) released a position paper, stating unequivocally, families do not cause eating disorders. Eating disorders are caused by a combination of genetic, biological, behavioral, psychological, and social/environmental factors. Experts have determined that due to genetics, certain individuals are predisposed or prone to developing eating disorders. Having a genetic predisposition basically means you are susceptible or at risk for developing an eating disorder, not that you will develop one. Many people experience weight loss from intentional reasons such as dieting, exercise, or from unintentional reasons such as medication side effects, illness, surgery, yet most do not develop eating disorders.
The effects of negative energy balance (expending more energy than taken in) on those with the genetic predisposition to anorexia nervosa as explained by Dr. Cynthia Bulik, is a “physical experience that is different in people prone to anorexia” and “the starvation state is alluring to them, not because it signals weight loss, but because it is anxiolytic (reduces anxiety). That means that negative energy balance, actually confers a sense of calm on their otherwise unsettled biology. What makes the rest of us more anxious makes them less.” According to Julie O’Toole, M.D., for “a person who does not have the brain chemistry associated with this eating disorder,” food “improves mood.” Normally, feeling hungry is unpleasant. It makes us irritable and cranky. When hungry, food makes us feel better. During a state of starvation, for those genetically predisposed to this illness, hunger has the reverse effect. Hunger is calming and gives them a false “sense of well-being”; a “positive biological reaction” continues Bulik. According to Jessica Baker, Ph. D., eating less begins to feel “soothing and pleasant.” As I understand it, for those genetically predisposed to this illness, intentional or unintentional weight loss causes changes in the brain that sparks the illness to begin.
Why do I prioritize the knowledge of negative energy balance as so important for parents, families, and for the individuals suffering? It is my opinion that understanding negative energy balance and the role of genetics leads to the following:
- less time and valuable energy wasted on blaming and feeling guilty during an already exceedingly difficult time; supporting your child in recovery deserves your full attention without these distractions.
- parents and families capable of being more patient and empathetic.
- reduced frustration and improved communication within the family.
- And of critical importance, increased awareness on the risks of weight loss and the importance of avoiding weight loss to sustain recovery and prevent relapse.
Lack of motivation may be the greatest hurdle to overcome on the road to recovery. Or, at least it may seem so to those of us desperately wanting our child well again. Here is a simplified solution—don’t expect it. Instead, be motivated for them and relentless in your efforts. Work to support recovery, especially in the beginning, without the expectation that your child should want to get better.
Unlike most illnesses, where one would take whatever steps necessary to get well, this is likely not the case with anorexia nervosa. This illness lives in the brain. Due to starvation and malnutrition, the brain’s functioning is altered. Remember, for those predisposed, starvation or negative energy balance has a reverse effect. Instead of feeling irritable and anxious, your child may actually feel calmed by starvation. It makes sense that the individual is drawn to something that makes them feel better. This anti-anxiety effect can perpetuate the problem.
Secondly, there is a common symptom of anorexia nervosa called anosognosia, which means that the individual has little or no insight into the problem. If an individual does not perceive there to be a problem, why would he or she have any interest or motivation to make changes to get well?
The initial focus should be on restoring weight to improve your child’s medical condition, which can become serious and life threatening. Weight restoration will also gradually improve the individual’s brain functioning.
There are a few ways however, to maximize even the smallest amount of motivation your child may possess. Knowing your child better than anyone else, you possess insight on what is normally most meaningful and enjoyable for him or her. Consider those aspects and what seems to be most important at this moment in time. Then, set consequences on the expectations established in treatment. Realize that often when malnourished, one’s interests dwindle and that depression is a common comorbidity. The expectations established in treatment and the consequences set by you, will likely be modified throughout recovery as improvements and any set-backs occur.
An example of setting consequences in my family, even when a child has minimal to no interest in getting well, involved my daughters’ compliance with the meal plans at home on weekends. Knowing both of my daughters wanted to please their therapists, I set the consequence of needing to adhere to the meal plan or I would need to inform their respective therapist. They did not want to disappoint nor face that discussion on Monday morning when they returned. This consequence focused on the initial goal of restoring weight and was highly effective
Further along in recovery when nearing their target weight ranges, I recall setting the consequences for taking driver’s education and maintaining a role in the high school musical. I feel it is important to avoid making the consequence punitive. There is no place for feelings of guilt in recovery. Remember it is no one’s fault. Offer an explanation as to why the consequence is being set. For the three examples above, the explanations went something like: The doctors know what a healthy weight is for you and to get to that range you need to eat what is on your plan not only in treatment, but at home, too. It’s not safe to drive if you are malnourished. The extra activity from rehearsals requires more energy and you could slip backward. Your cast is counting on you to learn your lines, the songs and dances. If you are not nourished properly you won’t be able to perform at your best.
Another way you can promote your child’s motivation to recover is to expose him or her to those activities or aspects of their lives that are most meaningful and enjoyable. For one of our daughters it was sewing lessons, which soon led to her thinking about college and possible careers with excitement about her future. Participation in activities need to be appropriate given your child’s condition and most will be more appropriate once weight is restored. Physical activities and sports will need to be limited and carefully monitored. I worked closely with my daughters’ therapists when establishing consequences for the expectations at many points along the way and when engaging my daughters in activities, especially those involving physical activity.
I do believe that getting my daughters involved in activities that they each enjoyed, once healthy enough, did spark an increased interest in their desire to get well and live more fully. The personal satisfaction and enjoyment derived was a turning point for each of them. They focused less and less on negative thoughts and behaviors and replaced those with ones that enriched their lives and were meaningful. Gradually, my daughters developed their own personal reasons to recover.
Facilitating motivation at any level is one way that we, as parents, can lend support. Recovery from an eating disorder requires hard work and loads of patience. It is often a winding and difficult road for the entire family. Discussing motivation is important to improve a parent’s ability to remain patient, empathetic, and supportive.
I feel that to remain patient and effective in helping your child recover, a parent also needs hope. Initially, I was paralyzed from feeling hopeless. Once I took that first step and finally called a treatment facility, I recall how quickly my feelings changed and I felt a sense of hope that my daughters would get well. From my first-hand experience helping not one, but two daughters, I can offer you hope that recovery is possible.
Much of my despair revolved around worrying that my daughters would never be the same again; that what made each of the them unique and special was gone forever. I felt as though I mourned the loss of the daughters I once knew and loved with all my heart. Beyond the physical changes and decline often apparent with anorexia nervosa, personality changes may be equally devastating to experience as a parent.
Longing for the child you once knew is likely coupled with your child becoming more difficult behaviorally. The individual suffering may become unreasonable, irrational, irritable, or depressed. A child that is normally mild mannered, may become angry and belligerent. An enthusiastic, high energy, and positive child may become depressed and uninterested in everything. Be reassured. From my experience witnessing two daughters with two different personalities, once the weight was restored and underlying psychological issues were being addressed in treatment, both girls returned to exactly who I knew them to be—only better. My daughters came through recovery more self-aware with improved coping and communication skills.
The message I want to leave you with is this: Recovery is indeed possible. Remain hopeful and unwavering in your commitment.
About the author:
Caroline R. Blaire is a speech therapist in practice for more than twenty-five years. She is the author of Eating Disorder Recovery: A Simplified Guide for Families. With her two daughters now recovered and living full, independent lives, Caroline happily empty nests with her husband in Wisconsin
Baker, Jessica, Ph.D. (2015). “Causes of Eating Disorders.” www.mirror-mirror.org/causes-of-eating-disorders.htm
Bulik, Cynthia. (2014). “Negative Energy Balance: A Biological Trap for People Prone to Anorexia Nervosa.” https://uncexchanges.org/2014/12/01/negative-energy-balance-a-biological-trap-for-people-prone-to-anorexia-nervosa/
LeGrange, D., Lock, J., Loeb, K., and Nicholls, D. (2009). “Academy of Eating Disorders Position Paper: The Role of Family in Eating Disorders.” https://www.aedweb.org/downloads/Role_of_Family.pdf
O’Toole, Julie, M.D. (2015). “Avoiding Negative Energy Balance.” https://www.kartiniclinic.com/blog/post/avoiding-negative-energy-balance/