By Amy E Cunningham
Eight years ago, I faced the most challenging experience in parenting in my then 25 years of parenting. My youngest daughter, Emma, aged 12, was diagnosed with restrictive anorexia in 2013. She was disappearing before my eyes, with personality changes so dramatic it was hard to believe that she was the same girl who had joyfully made snow angels in winter that year, and who had cheerfully and persistently learned how to sail in our then home of Dar es Salaam Tanzania. In the course of just a few short months, Emma morphed from a happy and healthy child to one who battled to put even a bite of food into her mouth. While I knew early on that something wasn’t quite right, I thought that this could be a stage in her growth. After all, I was a parent to four other children, and each had passed through challenging stages. As a parent, you learn to surf the waves of each child’s adolescence, and you don’t often push the panic button immediately.
Waiting is, of course, a huge mistake when it comes to eating disorders. With no known or proven prevention approach for eating disorders, the best approach is to act early, decisively and effectively when your child exhibits symptoms. Luckily, Emma was formally diagnosed within three months of onset. Three months during which I pleaded, cried, threatened, cajoled and reasoned with Emma to eat enough calories to stop losing weight. Once she was diagnosed at the University of North Carolina at Chapel Hill, Emma’s dad and I began intensive family based treatment (FBT) – by the book – and started on a long path to recovery. To say that treatment was hard is the biggest understatement I could offer. Over the next six months I fed Emma six times a day, 4000-5000 calories or more each day. The weight came on in fits and starts, and her mood, personality and behaviors changed even more slowly. But in time, she did get better, little by little, day by day. Today she is a beautiful and strong 19 year old young woman – healthy and generally happy. She is still acutely aware of the perils of her predisposition for this mental illness, and keeps a close eye on both her food intake, her state of mind and the quality of her mental health. While she certainly deals with the ups and downs of young adulthood as any young person would, she knows that going back to the hell of an eating disorder is not an option.
All this leads me to the need for more parents to be involved in any level of advocacy around eating disorders. My perspective has been that I cannot help my own children with this devastating illness if I deepen the stigma around mental illness by not talking about it. I decided early on that to heal Emma, and another child who was coping with mental health and substance use issues – I could NOT be quiet about it. I needed to come right out of the closet of stigma. That also meant that I needed to be open and honest about my own eating disorder experience and struggles. Being able to speak about mental health and eating disorders brings the topic into the light, into a space where it can be discussed, not as something to be embarrassed about – but a serious health issue that needs a strong public health, clinical and research response. In fact, misinformation about eating disorders in the scientific literature prior to 2010 has done a great disservice to our understanding of its etiology, causes and effective treatment. The myth, oft supported by insufficient research, that eating disorders only affected thin, young, rich white women, caused great damage as regards development of effective treatments.
Thankfully, with the advent of rigorous scientific research by leading clinicians and researchers such as Lock, Le Grange, Bulik, Kaye and others, there is now a growing evidence base to show what actually WORKS in eating disorders treatment. However, it can take a long time for research to show up in practice, and this is another reason parents must engage in advocacy. We should not stand for treatments that do not have effective outcomes, especially when evidence based treatments are available. Parents and carers of those with eating disorders have to be the front line fighting for better science, better treatments, more affordable and accessible services and fundamentally – positive health outcomes.
I cofounded International Eating Disorders Action and later World Eating Disorders Action Day along with several other like-minded advocates and activists when I realized that the eating disorders field needed a uniting force across the globe that could concurrently raise awareness and bring together the good science with a far wider group of global parents, professionals, people affected by eating disorders and policy makers. World Eating Disorders Action Day is a volunteer run grassroots collective, and parents/carers are key stakeholders and actors in raising awareness through in person (socially distanced today) and online events. It is also a wonderful platform for those fighting eating disorders to come together around a common cause, and to use the platform to build new policy and program changes. In Canada, Italy and Australia, the advocacy carried out by parents has helped shape national policy to expand treatment services, increase training in FBT, expand community services and more. Parents have been a huge part of making these changes, for our children, real.
Finally, advocacy can be a life raft when you are in the depths of despair. I found that during the refeeding of my daughter, my life was consumed with shopping, cooking, cleaning, feeding and therapy – all while trying to work and keep sane. Advocacy allowed me to channel my fear, anger and frustration to something that actually can make a big difference in changing the way eating disorders are addressed globally. It also brought me closer to many, many people who have dealt with the same issues that I have. While I’ve not met many of them in person, I consider them close and dear friends. The other side effect of public advocacy is that others will seek you out for counsel, or to share this secret they have been harboring for years, to invite you to join their advocacy efforts or to join yours.
Please consider using your voice as a parent to advocate for change, either in your own community or on a wider scale. We are stronger together, as a parent/carer community. And we can make change happen.
Thank you. I love everything about this piece (other than your family’s suffering, of course) and relate on many levels. I particularly appreciate your comment about parents sometimes missing warning signs when you’re “riding the waves of adolescence.” As a former high school teacher and with a background in Educational Psychology, I falsely assumed (at first) that certain mood and behavior changes might just be “normal” teen stuff–all because I *thought* I knew a lot about eating disorders. I share your mission of advocacy and education.
I can so relate to this article and totally empathise. The drive to make changes in early intervention and treatment access and improvements has also been my life raft in an turbulent ocean at times.
Advocacy can also gives some feeling of productivity when you have little feeling of being involved 💜
“advocacy can be a life raft when you are in the depths of despair. I found that during the refeeding of my daughter, my life was consumed with shopping, cooking, cleaning, feeding and therapy – all while trying to work and keep sane. Advocacy allowed me to channel my fear, anger and frustration to something that actually can make a big difference in changing the way eating disorders are addressed globally. It also brought me closer to many, many people who have dealt with the same issues that I have.”
I too resonate deeply with this article. Early intervention and HOW to intervene is crucial. Having suffered an eating disorder for many years in my teens I thought I was hyper vigilent but in hind sight, I should have acted 3 months earlier. I would like to join in this cause but we’re at the beginning of this recovery journey and it’s tough…to put it mildly. Holding down a business and being there for my daughter…and my son who is hugely affected is taking all of my (and my husband’s) energy. I hope to join forces with you in the future.
OMG……. I certainly relate to this post. If only I had this type of help/advocacy when my daughter got sick, I wouldn’t be 22 years into this HORRIFIC nightmare. Every minute of every second of every day I continue the fight to keep her alive. She was short changed 22 years ago and still pays a very high price. Looking for support for adults who suffers from Anorexia/eating disorders.
Our 12 year old daughter is 5 weeks in with inpatient therapy. I agree wholeheartedly about going with your gut as a parent and not getting caught up in talking yourself out of what you know deep down because of adolescence changes and growth spurts. Our daughter also is diagnosed with restrictive anorexia and it floors me still how quickly this can spiral out of control. What amazes me is the survivors and how willing many are to reach out to share and help in so many ways, many not even knowing us initially. I don’t know what we would do without this support. It propels me every day to want to do the same and gives me strength to share our story and continue to decrease the stigma surrounding this disorder.
I am an elementary teacher and this has further allowed me to be vulnerable and reach out to my students even more surrounding mental health issues.
If we all continue to advocate and talk, we can propel forward and continue to help all the families who continue to be affected by this and ensure our children get the best evidence based treatment available with us alongside them.