If you were to ask me the question: "What helped most?" I'd insist that it was the Around The Dinner Table Forum which I came across in early 2010, nine months into my son's eating disorder. Through this wonderful forum (which is run by the FEAST network) I became part of a global community of parents, many of whom are on first-name terms and who I have met in person. Basically, the ATDT forum was a lifesaver and I have no idea how I would have coped without it.
Here's what FEAST's and ATDT's founder, Laura Collins, said in the Introduction to my second book When Anorexia Came to Visit about the F.E.A.S.T. community and its online forum Around The Dinner Table (ATDT):
Before the diagnosis, few of us will have talked with another family facing anorexia, bulimia or another eating disorder. So when we discover our child is sick, we can feel alone, isolated and frightened. We want to know that there is hope; that our child will recover - and we want to meet other parents that have faced the crisis and come out the other side. Indeed talking to families that have survived an eating disorder can be one of the most encouraging and empowering comforts during difficult times.
Bev Mattocks has collected together just some of these stories, many from a very special place: the Around The Dinner Table forum - an online forum run by parents for parents. ATDT (as it is often known) began in late 2004 with only one member: me. I started it because I envisioned a community of parents helping other parents to survive this devastating experience. I knew that the internet was an ideal place because it's low-cost, open 24 hours, international and anonymous. When a mother or father is desperately searching for information and inspiration the ATDT forum is like a lighthouse on a stormy night, showing the way to safety. What started out with me asking my relatives and friends to “please post something” is now a longstanding institution with thousands of families that have come to us for support.
The generosity of the community that developed at ATDT continues to amaze me. There are caring folks there at all hours to offer leads to information, provide inspiration or simply a friendly shoulder to cry on during stressful moments. These fathers and mothers give willingly of their experience and show genuine compassion for one another. The number of readers always exceeds the ones writing so we know that the experiences of our users have a wider impact and will continue to do so for years.
ATDT is run by a wonderful group of volunteers. The moderator team - or "Mod Squad" - know our vast archives inside out and can refer a new parent to relevant “threads” whether current or past. British, Canadian, American, New Zealand or Australian families find one another, families facing similar symptoms find one another, and those living near enough to actually meet for coffee form invaluable local support networks across the globe.
By using the power of the internet, even with its drawbacks, ATDT has been able to offer support that is found nowhere else. Many practicing clinicians tell us they learned of a new technique, book or other information source from reading the forum. I regularly hear from parents that ATDT was an essential tool in their family's success. Indeed many of the families in When Anorexia Came To Visit describe ATDT as a "lifesaver" during the darkest days.
Because we are a peer-to-peer environment, one of our rules is that we are limited to our own experiences. We do not tell other parents what to do or how to think. We share our stories so that others can use our experiences in making their own decisions. This isn't always easy: at times every one of us wants to say, "You should..."
The limitation of an online forum, however, is that each story is told in individual “threads” over time. Rarely can you follow a family's whole story through one “thread.” This is what makes a book like When Anorexia Came To Visit so important. I applaud Bev Mattocks for gathering these stories and giving these 20 wonderful families a voice.
Of course with such a complex illness and widely differing personal circumstances, every story is different. Nonetheless there will be overlaps and elements that families will recognise and identify with. Like me and countless others, you will read these stories and find yourself nodding your head and saying "Me, too!" as you hear about families undergoing similar experiences to your own.
May these stories, and these brave families, offer you the hope and inspiration you need and deserve in the fight for full and sustained recovery. Your story, too, is yet to be told!
Worried that your child is developing an eating disorder? Not sure where to start? The FEAST Learning Center provides a huge list of resources for families facing an eating disorder from printed literature to videos. FEAST is also the home of the very excellent Around The Dinner Table Forum which is run by parents for parents.
This page on the FEAST website lists recommended third-party books on eating disorders plus blogs, videos, support tools, clinician interviews, etc.
Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method - by Janet Treasure
Help Your Teenager Beat an Eating Disorder - by James Lock and Daniel Le Grange
Treating Bulimia in Adolescents: A family-based approach - by James Lock and Daniel Le Grange
Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders - by Carrie Arnold
Anorexia and other eating disorders: how to help your child eat well and be well - by Eva Musby
Brave Girl Eating: The inspirational true story of one family's battle with anorexia - by Harriet Brown
Just Tell Her to Stop: family stories of eating disorders - by Becky Henry, Founder of Hope Network, LLC
Eating With Your Anorexic - by Laura Collins
Running on Empty: A Diary of Anorexia and Recovery - by Carrie Arnold
A Girl Called Tim: Escape from an Eating Disorder Hell - by June Alexander
Boys Get Anorexia Too - by Jenny Langley
Hope with Eating Disorders: a self-help guide for parents, carers and friends of sufferers - by Lynn Crilly
My Kid is Back - by June Alexander
CircumMensam.com: Mobilizing parents for lasting eating disorder recovery by Laura Collins, Founder of F.E.A.S.T. (Families Empowered & Supporting Treatment of Eating Disorders) & Author of 'Eating With Your Anorexic'
Eva Musby is a Scottish mother, author and professional illustrator who has produced some excellent videos on topics like how to get your eating disordered child to eat. You can also read Eva's story in my book: 'When anorexia came to visit'.