3 Ways to Support Parents Who Are Supporting their Child Through an Eating Disorder
by JD Ouellette, Expert by Experience/Family Peer Support Provider
I am no stranger to the reality of doing hard adulting, having provided end of life care to my mother and sister, who died at 61 and 41 of lung cancer. These experiences didn’t approach the torment that was having a daughter with anorexia. There’s something so elemental about both feeding one’s child and such a strong connection with one’s identity as a parent, that having a loved one of any age be unable to eat is painful and terrifying in specific ways. The heartbreaking statistics that show us eating disorders are the deadliest of all mental illnesses, and that recovery is neither quick nor guaranteed adds to the terror.
Often, and just when we are at our most depleted, we have to deal with the rest of society – frequently including as part of medical care – not trusting what we are telling them. “It’s a genetic, neurobiological disorder with a psychosocial component and affects people with specific temperamental profiles” is my go-to sentence when discussing anorexia.
“Ohhhhh, you don’t have to tell me! I watch lots of Lifetime TV Movies/had a friend in college who had anorexia/took an abnormal psych class in 1984/went to medical school/etcetera and I know it’s all about control – they can’t control their lives, so they control their food. Have you tried not being the food police? Also, why are you a bad parent?” Lest you think the last is hyperbole, I was actually asked by someone why I was confessing to being a terrible mother when I was discussing my daughter’s eating disorder.
The #1 way you can support parents is with EMPATHY. Put yourself in our shoes and think about what you would need if you were walking in them. You would need people – from partners to coworkers to friends and neighbors and doctors and other clinicians – to understand that while they may have some passing experience with eating disorders, they have likely not read 7 books, 34 articles, listened to 5 podcasts, watched a couple of hours of TED Talks and videos to ascertain the state of research and treatment in the month since their child was diagnosed with a life-threatening eating disorder.
You would think it reasonable they used Internet magic to connect with other parents in similar situations, wouldn’t caution them against listening to Experts by Experience from groups available via FEAST and other organizations, and would not suggest they step back from talking to “those people” and leave things to the “real” experts. You also would not want anyone to blithely suggest you are enmeshed or codependent for trying to save the life of your loved one of any age; a common clinical and societal diagnosis if your child is older, as mine was, when ill.
The #2 way you can support parents who are fighting this battle is LOGISTICAL SUPPORT if appropriate to a family’s circumstances. There needs to be a name for carpooling that is actually you-just-drive-the-other-kids-everywhere-and-feed-them-while-you-have-them. I’ve been both on the initiating and receiving ends of meal trains when someone receives a cancer diagnosis and it’s the best part of humanity we see and feel at those times. Full nutritional normalization for child with an eating disorder is often a traumatizing process, so if you can host siblings for dinner, that’s a huge help. And if you are the very best kind of friend or family member, you can express willingness to be trained in refeeding skills to give us a break. Oh, and grocery shopping help would not be amiss – there’s a point where we hate the very sight of food (okay, many points).
There’s a corollary to this as well and it’s for the parents of a child with an eating disorder: ask for and accept help. Seriously, you have likely never needed it more. I am, by temperament and socialization, a person who prefers to be the helper versus the helpee. I learned a lot about myself in helping my daughter fight anorexia and beat it into submission and one thing was that it was actually selfish of me to resist asking for the help I readily gave others. Asking for what you need is a surprisingly efficient way of getting it and yet one many of us don’t do often enough.
EDUCATION is the 3rd way and I mean both receiving and giving. Click on the links we post, read the articles we recommend, and learn enough to both be able to support us well in ways such as understanding the treatment model we are using, or the long journey this will be, or the ways you can make it easier for our loved ones to socialize, or the ways in which prevailing culture can be a toxic influence. One casualty of having a child with a serious illness is it can be isolating and many people fall out of touch with longtime friends because the diet/exercise/clean eating talk is too painful, common concerns can seem trivial, we’ve just lost our fun spark, etcetera. Friends that “get it” are precious.
We are seven years out from diagnosis and all is well – all is amazing actually – and my time is spent very differently now. My presence in online and on-ground peer support communities is a large part of my free time and I have friends as close as siblings I’ve only met in person a time or two. Luckily, I still have the group of friends who were with us before this happened and who supported me as I have outlined here. They trusted me to have done my research. They understood when I disappeared. They respected me when I began socializing again and said, “I am now a no-body shame/diet talk zone” and they opened their eyes to toxic cultural norms, as well. And if you want someone to deliver a concise and thorough primer on eating disorders in 2019 and gently and firmly connect misconceptions, my friend Kelly is just the one to do it and I cannot adequately explain how supported that makes me feel.
Parents of a child diagnosed with an eating disorder need the same support as if a child was diagnosed with cancer and that doesn’t happen for most families. Eating disorders and the common co-morbids that accompany them are not seen as “casserole illnesses”, but that can change! You can be part of changing it and it’s both as easy and hard as having empathy, providing logistical support, and educating yourself so that you can educate others – powerful ways to support a parent whose child has been diagnosed with an eating disorder and ones that will earn you a special spot in the heart of an exhausted, committed Warrior Parent.
About the author:
JD Ouellette is a married mother of four; the youngest is a 24-year old daughter in strong recovery from anorexia. She provides mentorship and peer support for parents and caregivers of those with eating disorders at JDOuellette.com. She writes frequently on eating disorders, is a F.E.A.S.T board member, a member of the University of California San Diego Eating Disorder Center for Treatment and Research Parent Advisory Council, a member of the Patient-Technical Committee on Behavioral Health for The Joint Commission that updated eating disorders standards of care, active in the Facebook communities Around the Dinner Table and International Eating Disorders Family Support, and a founder of World Eating Disorders Action Day. In her past professional life, she was an educator and administrator, making peer support a natural fit for her skill set and the most fulfilling work she has ever done.
Thank you for this! I have your concise explanation of anorexia copied into my little book of stuff that feels important to learn or revisit, on the inside front cover. I have a 34 year old daughter just starting (AGAIN) toward recovery, having been on and off the edge for 18 years. I have moved across the country to be in the city where she lives to support her for at least a couple of months. She has a lovely group of her supportive friends (her age), but I feel quite isolated. I sure wish I had a support group of moms dealing with adults with prolonged anorexia. Any suggestions would be welcome. I’m now in Brooklyn, NY.
Thank you for the well stated article and bringing hope to those parents continuing to struggle with this horrible disease. The struggle is real including our children who are mid twenties and older. Thank you for your voice.
Thank you for writing this JD! It’s exactly what we Warrior Parents need! This will be a great link for parents to share with friends and family. [And Maria Lynch there are great parent and carer support groups on FB – two I recommend are IEDPS (International Eating Disorder Parent Support) and ATDTfb – Eating Disorders Center Family and Carer Support. Also JD mentioned FEAST. ]
Wonderful JD! Timely too! A dear friend reached out today and asked me to send her everything I’ve got on how to help family and friends and extended friend, understand what she and her daughter are up against! First thing I sent her is this fantastic article.
For partners and other caregivers, please do see out International Eating Disorder Family Support on Facebook, ATDT-FB, also on Facebook. You can access in the moment live chat as well at http://www.feast-ed.org
Thank you for sharing this with us. I am always in awe of people who are open and tell us their story.
I am the Granny and support my daughter and her daughter (who suffers from eating disorders). It is so difficult and it helps to hear that we are not alone and that we can, and must giving support.
Thanks for the comments and I would love to connect! I have lots of ideas and experience about how to reboot when you are still struggling.
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