We had the great honor to speak with a mother who shared her own first-hand experience of an eating disorder within her family. She works tirelessly to promote eating disorder knowledge, awareness, and recovery through her own advocacy work. This week’s blog post gives insight into a her personal view of treatment, recovery, and the experience of eating disorders within the family unit.
What behaviors should families be aware of within the home and at meals? What are the warning signs your loved one has an eating disorder?
CM: The big thing is a change in behavior and eating habits. It [eating disorders] can change its face for different people so look for any type of drastic change in behavior or eating habits. Be aware of an an overall increased focus on food that was not present before; an obsession with cooking and baking, but no participation in eating the item, watching cooking shows, completing research on recipes and creating elaborate meals, but not actually eating the meals themselves, etc. Some loved ones may begin eating in a ritualistic manner or finding excuses not to eat food. Some loved ones may begin eliminating food groups, begin dieting, or become a vegetarian or vegan for no particular reason. A health focus can lead to restriction of different food groups, quality or quantity of food groups, that leads to more and more restriction; and excessive water loading before or during meals.
Look not only for changes in eating behaviors, but also changes in overall behaviors and social behaviors; for example, loved ones may start withdrawing from friends and family, won’t eat in public, don’t want to attend events that will involve food, and will eventually not want to attend public events at all.
Additional warning signs may include constant body comparison and body image issues, obsession with weight, size, shape, constant weighing, and isolation, excessive and ritualistic exercise, rigid beliefs and actions around food, exercise, body image, and behaviors, decompensation of mental functioning, dramatic and quick mood swings, inability to retain information, emotional unbalance, or physical symptoms such as lanugo, extremities turning blue, etc.
Keep in mind that significant weight loss may not occur for all individuals struggling with disordered eating; while weight may remain constant, focus on changes in the behaviors of your loved ones.
What was helpful in getting your loved one to commit to treatment?
CM: Parents have to call it as they see it and have to be an ally for their loved one. Many times parents are in denial that something is wrong. You have to send a clear and steady message that your loved one is decompensating while providing specific examples, work together with your loved ones’ outpatient team, and express your support with a statement such as, “I am not going to stand by while these things are happening.” Parents need to address the situation calmly and rationally, explain the behaviors you are witnessing and why you feel he or she needs to attend treatment.
Be aware that as a parent, you have a different view of your loved one than her outpatient team. There are times the loved one may be able to put on a “healthy face” for the outpatient team or while at home and act as if they are doing well. At times, it may require the parents of the loved one to care for the individual and spearhead the path to treatment.
How does a parent know their loved one needs to go to treatment?
CM: When things aren’t getting better, even in outpatient treatment. When your loved ones’ entire life is falling apart. When you are in a living hell at home. When there is decompensation in all areas. Everything is screaming that your loved one needs residential or inpatient treatment and it is obvious she needs much more support. Remember it [the eating disorder] is not just a phase and it will not go away without proper treatment.
Parents may become very frustrated with their loved one. Their loved one may say they do not need help or support. Parents have to remember that eating disorders are not a choice and that their child is not an eating disorder. It is important to remain your child’s ally and to avoid becoming confrontational. Do not get on the roller coaster with the child. Be supportive, but also separate the disorder from your child – externalize the illness.
There are times when your loved one is not in the position to say yes to treatment and you will have to eliminate all other options. You have to say, “You need help, this is serious. You have two options: going to treatment or going to the hospital.” Parents cannot negotiate with treatment, but should include the child in the decision (i.e. provide specific examples of the behaviors and decompensation witnessed and why you feel your loved one should enter treatment). Paint the picture very calmly, express love and concern for your loved one’s wellbeing, and then provide one combined option of treatment and support. Do not let it become a battle because then you are also battling with the eating disorder.
What was successful in treatment (i.e. family therapy, phone calls from clinical team, family Friday)?
CM: Therapy with the entire family is critical. Do not forget about the siblings and how they are affected during this process.
The more learning curves in the road during treatment the better (i.e. someone saying something triggering at a dinner outing, etc.) Your loved one will learn to handle experiences that are going wrong instead of everything being perfect. You want treatment to go smoothly, but you want your loved one to be able to navigate difficulties whether they be social, food, etc.
What advice would you give parents whose loved one is in treatment?
CM: School often takes priority over all else. You need to firmly establish that health is the number one priority and that school and anything else comes second to health. You cannot negotiate because of these other “important” life events. If you do, you are sending the message this is not a top priority and that getting help for your eating disorder is not urgent. Children need to understand this is urgent, this is serious, and that nothing else is more important.
Do not negotiate with the eating disorder. The minute you start negotiating with the eating disorder all bets are off.
Be clear, be firm, and do not negotiate on any level (i.e. becoming vegan, staying at school to finish up before treatment, coming back to school for trip or play, etc.) Do not engage in these conversations – the eating disorder will see the crack in the window and will keep picking at it.
What support do parents need or do you suggest they get while their child is in treatment?
CM: If you have questions or concerns while your loved one is in treatment, speak directly to the treatment team. Do not cast doubt on the treatment team or the treatment; your loved one could take this as an opportunity to disengage, she may begin feeling she is not sick enough to require treatment, or the eating disorder may find a way to sneak back in.
Make sure you are also taking care of yourself. You may be physically and mentally exhausted so make sure you are receiving support; whether that is through self-help books, psychotherapy, education, and understanding what it will look like when your loved one leaves treatment. Know the path to recovery will not be a straight shot and there are going to be bumps in the road.
Siblings, couples, and individual therapy are all helpful. The eating disorder can infiltrate and effect the entire family. Join an advocacy group (listed below) to find support and affect change. Find support in any way you can so you do not become isolated. Find individuals and community support from people who understand where you are coming from.
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