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.