Sunday 27 November 2016

Are you a parent or carer looking for support from other parents of young people with eating disorders?

In early 2010, some months into my 16-year old son's escalating eating disorder (anorexia nervosa), I discovered a life-saving resource after a chance search on Google. It was the F.E.A.S.T. website (Families Empowered And Supporting Treatment of Eating Disorders) and its online forum Around The Dinner Table (ATDT). Through this wonderful resource I found the rock-solid support I needed from parents across the world who had 'been there, done it' and also those who were still battling to get their sons and daughters through the hell of an eating disorder such as anorexia, bulimia or EDNOS (eating disorder not otherwise specified).

I am still friends with many of the 'stalwarts' of this wonderful community - virtual friends on Facebook and also friends who I meet up with now and again for coffee or over lunch.

I wish I'd discovered F.E.A.S.T. earlier during that terrifying period when I realised that something frightening was happening to my son and that that 'something' was probably an eating disorder like anorexia.

This is why one of the purposes of this blog is to direct other families to this supportive and informative resource so they don't have to face their child's escalating eating disorder alone.

In the Introduction to my book When anorexia came to visit - Families talk about how an eating disorder invaded their lives - Laura Collins, the Founder of F.E.A.S.T. (Families Empowered And Supporting Treatment of Eating Disorders) and Author of “Eating With Your Anorexic” explains about the F.E.A.S.T. community and its online forum Around The Dinner Table (ATDT). I am sure Laura won't mind me reproducing this Introduction here (which explains more about the  ATDT forum for readers of this blog who may not be aware of its existence):

I hear lots of questions when a parent realises their child has an eating disorder. The question that comes up most often is: “Where can I find other families who have survived this?”

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 practising 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!

Laura Collins, Founder of F.E.A.S.T. & Author of “Eating With Your Anorexic”

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