- What I thought I knew about eating disorders when my child was diagnosed with one could be summed up as “isn’t that that thing where a person looks in the mirror and thinks they are a different size than they really are?” Basically I knew nothing and did not understand the gravity of what we were facing. I did not know that eating disorders are a serious mental illness and that eating disorders have the highest morality rate of any mental illness. Every 62 minutes at least one person dies as a direct result from an eating disorder.
- Much of what I did not understand about eating disorders revolved around who could get it. Our child was diagnosed as a teen, but I now understand from what she has told me that she had these “feelings” much younger, starting around 9 years or younger. Teen girls are not the only people who suffer from eating disorders. It is estimated that up to 1/3 of sufferers are male. (CDC, 2007) Other groups of people at risk for eating disorders include athletes, sexual minorities, and people who have had active military duty. http://www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics/
- You would think it would be really obvious if a loved one were suffering from an eating disorder. It wasn’t. It is likely that there won’t be a lot of warning signs. For us it seemed like a slide into “healthy eating” or “vegetarianism” or “picky eating.” That, combined with clothing that may be worn to obscure weight loss and meal times that are suddenly eaten at a friends or while you were at work and all of a sudden you are in the middle of it. My child “disclosed” to me by telling me about a health concern. She told me that it took a great deal of effort to go against her eating disorder to try to signal to me that she had a problem. I almost missed it. Something about what she said just nagged at me, don’t miss the signs. SMEDA has a Speaker’s Bureau including a parent-led talk that discusses the warning signs of eating disorders that is available for clubs, school parent groups and others. If interested in scheduling a talk, contact email@example.com
- Once you catch the signs, you need to move fast. Up to 20% of individuals with chronic anorexia nervosa will die as a result of their illness. Early intervention is consistently associated with higher recovery rates. https://www.nationaleatingdisorders.org/sites/default/files/Toolkits/ParentToolkit.pdf
Professionals, or others, who tell you as a parent or caregiver that you need to step back and stay out of your child’s recovery are wrong. Research has shown that parental involvement in a child’s eating disorder treatment can increase chances of recovery when using effective therapy methods like family-based treatment. Here is some more info about effective treatment: http://www.southwestmichiganeatingdisorders.org/treatment/
- This brings me to the next thing I wish I had known, you need to work hard to assemble the right team of professionals around your child. Finding professionals, any professionals, who are knowledgeable and able to effectively treat someone with an eating disorder is difficult to find. Individuals who do not have experience working with this can actually do more harm than good. You can start your search by checking the SMEDA Professional Directory to find knowledgeable professionals in the areaThese are all professionals in the area who work on a regular basis with clients with eating disorders, who continue to participate in their own professional development in this field, and who are committed to working in a team setting. Treating eating disorders will take a team and on YOUR team you will want a knowledgeable medical person as well as a therapist and someone to provide nutritional counseling. All three need to be able to communicate and work together as well as work with the family.
- One thing I thought a lot about going through this were the lyrics to the Sarah McLachlan’s song Hold On – “Hold on. Hold onto yourself. This is going to hurt like hell." https://www.youtube.com/watch?v=MHBmpGLGyk8
And it does hurt like hell. Here are some things I wished I knew. Your child will change. Your child will engage in behaviors such as lying or throwing fits during mealtimes that don’t seem like your child at all. For our family, it became useful to remember that there was my child and then there was the eating disorder. A helpful book at this point for us was Life Without ED http://www.jennischaefer.com/books/life-without-ed/ which compares having an eating disorder to being in an abusive relationship. Your child, and his or her behavior, will become eclipsed by the eating disorder; your goal is to help them get free. For a list of other helpful books and resources, check out the SMEDA Resources.
- Speaking of books and resources, once my child was diagnosed with an eating disorder I obviously became very interested in the numerous books written on the topic. What I didn’t know was that I needed to be careful about what I brought into the home. Many of the books, especially the first person biographies, can be very triggering for people with eating disorders and can actually provide a road map for additional “tips & tricks.” http://well.blogs.nytimes.com/2009/05/11/the-troubling-allure-of-eating-disorder-books/?_r=0 I would NEVER have allowed them in my house if I had known that.
- This brings me to an overall, catchall on how much I did not realize that I needed to be vigilant about the toxic environment surrounding my child. While it is not difficult for any child to soak in a toxic environment that is obsessed with things like “thin,” “healthy," “high performance,” “clean eating,” and of course the bugaboo of “childhood obesity,” for a child who is trying to recover from an eating disorder, it is absolutely vital that their support people help to navigate and protect them from this toxic environment as much as possible. For our family this meant removing certain types of media from our home. It meant being vigilant about our own inadvertent “fat talk” and it meant educating, and if necessary being prepared to remove, unhelpful people from their life, including coaches, health professionals, peers, even extended family members.
- Frequently family members will provide “meal support” to a person with eating disorders as part of their recovery journey. Here is a video on meal support https://www.youtube.com/watch?v=pPSLdUUlTWE One other thing I never could have imagined is how much our entire family’s relationship with food would be impacted. I never would have imagined how many hours grocery shopping, preparing and making sure my child ate food would take. A trip to the grocery store suddenly stretched to hours as we looked for foods that I knew our child would eat and we avoided any “diet” or “low calorie” foods. We also had times when we would have to repackage foods out of their original packaging so food labels, especially calories, could not be read.
- Finally, the one thing I want all family members, caregivers and support people to know is that it is not their fault. Fortunately, in most cases, the theory of how eating disorders develop no longer blames the family, especially the mother, as it has in the past. See this video on myth busting on mothers and eating disorders. https://www.nimh.nih.gov/news/media/2014/eating-disorders-myths-busted-myth-3-mothers-are-to-blame.shtml Even though I knew this, what I didn’t realize is that it is easier said than done. While the official word is you no longer need to feel guilty, it is so much harder to not feel guilty. Your child is suffering, how can this not be your fault somehow? Just remember if the illness were cancer instead of an eating disorder would there still be those niggling feelings of guilt? If, when you replace the word cancer for the word eating disorder it changes how you feel, then you might still be working under a cloud of stigma and shame that you don’t deserve. Remember, it’s not your fault.