Organisations and online parent-support groups for eating disorders

On this page:

• Online peer-support groups: these are usually facebook groups set up by some parents, for parents. I list some of them, but first I tell you things to check out so get the best and avoid pitfalls

• Worldwide support organisations: they may run peer-support groups online or in person, they may have helplines, provide information, organise speakers, and they may campaign for better services.

Online parent support groups

Groups are a great way for you to learn fast by reading other people's conversations. You can also ask questions, get cheered on and comforted. I keep learning from parents' experiences on groups, and from the research links they share.

Before I list a few groups I know about, I want to make you aware of possible pitfalls that may or may not apply to you.

Once you know what might go wrong you'll be better equipped to take the best from a group and leave the rest… or even to move on to another group that suits you better.

Here are a few things that parents have told me went wrong for them on a group. I might still list that group below, because other parents have told me how it was a lifeline for them.

So pitfalls…

Is there good expertise on this group?

Anyone can create a group. They then moderate the inputs and set the tone. How do you know that they have the expertise to advise others?

One thing that helps is when a group has a group of well-respected professionals on their team. F.E.A.S.T has that, and it may not be a coincidence that its forums are, in my view, safe and informative. F.E.A.S.T. also has the funds for board members to attend conferences and keep learning.

Facebook groups tend to only be open to parents, not professionals. So it becomes up to each of us to check if a group feels safe and informative.

I am very conscious that it's precious to have professionals on hand to check some of my own resources: they keep me right, and I continue to learn from them. And of course, we parents learn tons from each other. It's not either-or.

How a particular group might not serve you well

First, if you're immersing yourself in other people's complex and distressing stories, this may scare and weaken you. Sometimes you have to choose what nourishes you.

Next, I've never seen a group where I agree with everything everyone says. Get your learning from multiple sources, take the best and leave the rest.

Another type of pitfall is when a group is an echo chamber of a few strong voices. They may believe you should be treating your child the same way they treated theirs. They give advice and are unhappy when you don't follow it. The fact their child is now recovered makes their way the only way.

You may hear that a particular thing to do or say 'is FBT', yet if you read the FBT or Maudsley manual you will see it's not. On a group you may see parents being told to go against a clinician's advice, based on minimal information. I have been appalled to see unchallenged posts on groups asserting that all professional help — or all of the UK's treatment through the National Health Service — is damaging. All therapists are considered to be idiots. Views are aired that self-help and the advice given by group members is the only acceptable route.

I have seen dissenting views and experiences of a parent being shut down. Some parents tell me that they left a group –rather too late — after feeling bullied or shamed for putting forward a different experience. Some tell me that they regret using some of the one-size-fits-all advice that kept being repeated in the group.

In short, be cautious of those who give dogmatic advice and who discourage you (bully you) from thinking for yourself or from using professional support.

More on these types of issues from Judy Krasna, director of F.E.A.S.T, in this great piece on the topic: 'There is no one path'. See also Daniel Le Grange in this YouTube, commenting on things parents share on some groups, that are not compatible with FBT.

So use these forums for their wonderfulness, remember that people really want to help others… and at the same time remember your situation may be different from that of the person giving you advice.

To get a more rounded a picture of what may help you, read more widely too, listen to podcasts. I list all kinds of great resources here.

Confidentiality

Take care to protect your child’s anonymity, and be careful about the level of detail you give. With a short internet search, your child or your therapist can easily find what you write. There are parents who have deleted a year’s worth of posts and changed their username because their child discovered the site. Children have every right to want privacy.

So, after all these words of caution, here are a few groups you might like to test out for yourselves.

First choice: F.E.A.S.T. and Around the Dinner Table forum

I am so impressed with the  Around the Dinner Table  forum, which is part of the parent organisation F.E.A.S.T. It is not perfect — no group is — and the words of caution above apply. But the forum is moderated with care, and the board comprises some highly-respected professionals. Members get much support, kindness and encouragement. There is a commitment to sharing information that is science-based, and where science has no answers, there is a wealth of personal experience to draw from. You'll find help on feeding your child at home, or dealing with eating disorder inpatient units, or with clinicians who don't know enough about the illness.

You have to join to post anything, but anyone can read what's on the forum.

F.E.A.S.T is for every caregiver, whatever the treatment path. So it's not just about family-based treatment, or treatment at home. And it's not just parents of kids and teens: if you are supporting an adult with an eating disorder, it's there for you too.

Dads, check out the subgroup, 'Men of F.E.A.S.T.' which you may enjoy if you feel too much of the support is female-orientated.

The forum is international, but notice this section as it may help you immediately to get local information: 'Connect with local members wherever you are in the world'. Note also all the information for parents in the  Hall of Fame section. For education on eating disorders, sign up to receive 30 days of emails in The First 30 Days. In my view it is good for those of you who are wanting to learn more once you feel pretty confident about supporting your child.

F.E.A.S.T. also provides a great worldwide list of organisations that offer online support here.

You may also get a one-on-one mentor through F.E.A.S.T.'s mentorship program.

The F.E.A.S.T website is huge a source of information for parents, clinicians, and the community. You can read about causes, interventions, your role, and find links to research. F.E.A.S.T is supported by a number of specialists, researchers, and an army of knowledgeable parents, so I trust that the information in there is top-notch.

Check this out: a therapist-led group

Treatment providers may lead groups for carers, and often that's for a limited time and just for the families they treat. I see that therapist Alli Spotts-De Lazzer holds a carers' group and it's not just just her clients: details on her site at therapyhelps.us/support-group. I am guessing it will be super-supportive, judging from how she talks on her webinar for F.E.A.S.T here.

Facebook groups

Facebook groups to support parents are usually 'closed', which means you cannot read posts unless you've joined. The fact that you're a member of the group will be visible to other Facebook users, so if you want total privacy, create a new Facebook account just for this. 

I've mentioned FEAST's Around The Dinner Table forum. There is also ATDTfb – Eating Disorder Family and Carer Support which does roughly the same.

There are more. If I don't list them it's either because too many parents have told me that they found the advice harmful and/or the tone abusive, or most often it's because I don't know the group well enough.

If your daughter with an eating disorder is also autistic, there is this Facebook group : Autistic Girls with Eating Disorders – A Place of Care & Understanding. So far whenever I've dipped in I have found it to indeed be caring and understanding. And it's not just for girls, in spite of the name.

There's also rather quiet Facebook group EDParent2Pro where parents can pose questions to a small number of professionals.

The International Eating Disorder Action (IEDAction) Facebook group is a world-wide bunch of hard-working parents, carers, survivors, sufferers and others, campaigning for better education and treatment. They've also created a World Eating Disorders Action day (in June).  There is also an IEDAction website. As I check it today, it seems to have gone quiet.

Eating Disorders Resource Center runs a weekly group online — I have no direct knowledge of this California-based centre, but I'm listing it here as a parent I spoke to told me it was excellent.

Again, be in choice. Use the groups that inform you and treat people well, and vote with your feet anywhere you don't appreciate.

Organisations, charities, campaign groups throughout the world

Note that I don't personally know all of these.

* Link: Crisis / suicide helplines *

UK

B-EAT : www.b-eat.co.uk  Beat is a big, active, eating disorder charity and campaigning force in the UK. They run support groups, they educate and run conferences, and I have spoken to parents who really appreciated the workshops for carers. There's a scheme to mentor carers, or for people with an eating disorder to have a peer mentor. The website includes great materials to campaign or for individuals to press for better care, and there's also a whole self-teaching section (called 'Pod') which includes the ability to chat online with other carers. At the time of writing, in my view the educational resources are slanted towards treatment approaches developed for adults. So if you're the parent of a child or teen, if you see a few recommendations that don't match what your treatment services are supporting you with, that's why.

The Royal College of Psychiatrists :  www.rcpsych.ac.uk

Scotland

Princess Royal Trust for Carers : www.princessroyaltrust.org.uk I don't personally know anyone who's used this, but it seems worth a try. 'The Princess Royal Trust for Carers has been fighting to provide carers with the support they so desperately need. The Trust understands that few of us plan to become carers, so when a caring role starts, every carer needs an expert to guide them through the maze of services, rules and entitlements. For a carer, this can make the difference between keeping and losing their job, or between staying healthy and collapsing under the stress. At the heart of The Trust is a unique network of 144 independently-managed Carers' Centres, 89 young carers' services and interactive websites (www.carers.org and www.youngcarers.net) which deliver around the clock support.'

Edinburgh Carers Council : www.edinburghcarerscouncil.co.uk . 'We are an independent organisation that provides advocacy, information and learning opportunities to carers; regardless of where they live; who support someone who is in hospital, uses mental health services or has a mental disorder in the City of Edinburgh.'

See a lot more information I've collected for Scotland on this page.

Ireland

The Eating Disorder Association of Ireland : www.bodywhys.ie  'Bodywhys provides a range of support services for people affected by eating disorders, including specific services for families and friends.' I've spoken to parents who were very glad for the help from Bodywhys.

Canada

I know one of the parents in charge of Eating Disorder Parent Support Group Canada and I imagine they do great support — they also have invited guests lectures. The Facebook group is on https://www.facebook.com/groups/eatingdisorderparentsupportgroupcanada/ The email is: hope4eatingdisorders@gmail.com They wrote to me: "We are parents of children who are in recovery from an eating disorder. Our group members are all carers of children and youth who have had or have currently an eating disorder. The group is informal and its goal is to be a source of support for its members and to provide information and resources to help in the eating disorder journey."

USA

National Eating Disorders Association : www.nationaleatingdisorders.org . 'NEDA is here to support the millions of families whose loved ones are battling eating disorders. How do we do it? By offering the latest information, resources, action-oriented advocacy and media campaigns to educate the public and policymakers and, most importantly, a sense of community to people often feeling alone and overwhelmed in their struggle to access quality, affordable care.'

Alaska has a most active group of parents: Alaska Eating Disorders Alliance (AKEDA) www.akeatingdisordersalliance.org They have guest speakers (I spoke there a while back) and seem very active.

New Zealand

The Eating Disorders Association of New Zealand EDANZ is active and has a helpful website: www.ed.org.nz They provide support, information, and resources for carers of people with eating disorders, educate doctors, nurses and other medical professionals working with eating disorder patients and lots more.

EDCS – Carer's support group is a Facebook group for New Zealand parent/carer support and their website is https://edcs.co.nz "We are Kiwis caring for loved ones with Eating Disorders. This group is a closed forum and strictly confidential. Available for New Zealand carers to seek support, increase awareness, understanding and learn to navigate ED services available. We provide educational resources and advocacy for system and legislation change and improvements in the treatment of eating disorders."

EDFA: New Zealanders now have access to parts of Australian organisation EDFA. See my Australia guidance here.

Australia

Eating Disorder Families Australia (EDFA): I'm well impressed by EDFA and sad it's only open to Australians. I was lucky to become a member when they invited me to contribute some webinars. They have a fantastic video library of webinars. They also provide one-on-one support. And they have various support groups and I've heard parents telling me how helpful it's been to attend. And they have a podcast, 'Strong Enough', available to anyone. EDFA is established by parents and supports who have cared for and treated a young person with an eating disorder. It advocates for the needs and roles of other parents during this experience.

The Inside Out Institute's website InsideOut GP Hub & Tools is a great resource for Australian GPs designed to support them with prevention, screening, early intervention, diagnosis, treatment, medical management and rehabilitation of eating disorders and navigating Australian health networks.

* More help: International – Resources in many languages *