Tuesday, January 20, 2015


An International Project
F.E.A.S.T. is thrilled to support and participate in the Sockit Project

Sockit to Ed is a global effort to raise awareness
and support eating disorder charities and foundations.  

DURING

EATING DISORDERS

AWARENESS WEEK(s)


F.E.A.S.T. would like to celebrate our members 

and community through Sockit  Meetups. 

Let's 

Get Together 

and SOCKIT to ED! 


F.E.A.S.T. Members Meet Ups: wear a pair of your silliest socks to support families affected by eating disorders. Laugh; Talk; Share and Strengthen!



EDAW DATES:
CAN-   Feb 1-7
US -  Feb 22-28
UK-  Feb 22-March 1


Exact Locations and Dates of  F.E.A.S.T. 'Sockit' Meet Ups to follow. 

*Anyone willing to host a local or virtual meetup contact me at: labordelisa@gmail.com
Facebook Sockit to Ed page:  https://www.facebook.com/groups/381545115359407/

Monday, January 19, 2015

Advocacy Mondays: 5 Questions Answered by Sam Thomas, UK

Sam founded "Men Get Eating Disorders Too" (MGEDT )in Spring 2009 following his own experience of an eating disorder throughout his teens. Having had bulimia for eight years, he managed to recover in his early twenties. Reflecting on his experiences he realised being male was largely why he found it difficult to get appropriate support. In response to this he set up the original MGEDT website with the support of ITV Fixers to raise awareness of male eating disorders and provide information and advice that is specific to men's needs.




1. How did you find your path to advocating for families?  
We’re fortune that Lynn Crilly (parent of a daughter in recovery from anorexia, counsellor and author of top-selling book ‘Hope To Eating Disorders’) is a Trustee on the management committee at MGEDT. some time she has advocated and supported for parents caring for their sons and daughters suffering from eating disorders making us all too aware of the specific and unique needs parents are faced with. Lynn has been instrumental in e-profiling MGEDT as a charity not just for sufferers but for their carers’ and families, too. Too often, it’s the parents that will spot the signs or at least something is wrong in their son’s behaviours ringing the alarm bells and typically we’d hear from mothers. More often than not it’s the women in the men’s lives that are first to recognise the symptoms.

With this in mind, we wanted to ensure that MGEDT supporters not just the sufferers but the family unit to ensure that men with eating disorders and best supported to go on to live a life free from the symptoms.
In 2015 we have launched our new online peer support service including live chat one to one and a new online forum containing two boards: one for male sufferers and the other for carers. Our online peer support services are available to anyone in need of support from the UK and beyond.Over the coming months and years, we are seeking to set up peer support groups for sufferers and carers initially in the South-east and further afield in due course. 




2. What does your advocacy work consist of/ how do you define advocacy?  
To us advocacy is facilitating and supporting sufferers and carers to get their voices and experiences heard. Those affected by eating disorders feel isolated, mariginalised and stigmatised – hearing someone speaking out so openly and honestly goes a long way to shattering the gender stereotypes. Peer support is also key to enable those affected to reach out and communicate with others in similar situations. MGEDT is committed to enabling those to network and be a part of an online and face to face community so no-one has to feel on their own. For parents this is especially important given they are in a supporting role and in need of support themselves.

3. What change do you hope to affect? 
In a sentence we want sufferers and parents to feel that gender is not a barrier to support – after-all eating disorders have no gender and anyone can be affected. Ultimately we want eating disorders to be understood as an issue that anyone can affected by irrespective of age, ethnicity, religion, sexuality, social class and indeed gender. In ten years from now I hope suffers and parents of men affected will be able to seek help without the gender issue. Moreover, I hope that it would be ‘laughable’ that we ever thought eating disorders was once assumed female-only conditions.

4. What are some of the challenges/frustrations inherent to this type of advocacy?  
MGEDT is presented with a number of challenges – mainly that men with eating disorders are not so quick to recognise their symptoms. They can be in denial for some time and reluctant to open up, let alone seek help. This adds to the stress on parents who often feel responsible and the sense of urgency for their son to seek help perhaps getting to crisis point before they do. The lack of recognition and understanding of eating disorders in men is another obstacle. Professionals can often feel that they are working in ‘alien-territory’ working with a man with an eating disorder. Our training for professionals aims to provide the knowledge and confidence they need to support men as equals to women clients, not as separate on the basis of their gender. Furthermore, is the limited support available for sufferers and parents of affected by male eating disorders. We tirelessly to raise the profile of the cause in the media and social networks to engage with those in need, as well as raise awareness of eating disorders in the wider community.


5. Top 5 things you would share with a family facing a new diagnosis?
1) Don’t panic – You are not the only family in the world facing a male loved one with an eating disorder. Reach out to others in similar situations via FEAST Round The Table and MGEDT Carers Forums.
2) Communicate – Keep talking with one another as a family and with your male loved one. Eating disorders thrive on secrecy and speaking about it – as hard as it can be – will help you move forward together as a family. Never let the eating disorder by the ‘elephant in the room.’
3) Support one another – Eating disorders are difficult for everyone involved and impacts on families in a way that nothing else can. The key to recovery is to work together at it as a family. Despite the challenges you can do it together, if you stick at it together.
4) Don’t go it alone – Support is available for families so speak to your GP or healthcare professional to find out the options available and don’t hold back.
5) Be positive – It’s cliché and obvious to say but being positive throughout the ups and downs is essential. People with eating disorders will stand a better chance of recovery in positive environments. Believing that they as the sufferer can achieve this, will mean a better chance that you will recovery from the eating disorder, together.


------





Sam is dedicated to raising awareness of male eating disorders and frequently talks about his experiences and of the issue of male eating disorders in the media and at conferences. Sam's work has been recognised in the Shelia McKechnie Campaigner Awards, Beacon Prize, Beat Awards and the Talk Talk Digital Heroes Awards. 
Men Get Eating Disorders Too is an award winning national charity is run by and for men with eating disorders including their carers and families.

MGEDT www.mengetedstoo.co.uk provides essential information that is specific to the unique needs of men and provides an online space for those affected to get their voices heard (e.g. peer support via our forum and one-to-one live chat sessions). We also campaign in the media and organise awareness raising events and training for professionals.

Wednesday, January 14, 2015

Reason and Eating Disorders: One Mom’s Perspective


My daughter, now 10, is  2 ½ years out from her initial diagnosis with anorexia nervosa, and in a very solid recovery. One thing I have learned about in guiding her recovery, is that what seems “reasonable” to me and to her has changed at different stages of the recovery process.

My daughter was an articulate (for a 7 year old), reasonable little kid before she got sick. She was amenable to logical explanations. So, at first I tried to talk her out of having anorexia. To talk reason into her. But, none of my reasoning worked. In fact, she became even more entrenched in disordered opinions. Or, or my explanations, so clear to me, would end up twisted and de-formed by the disorder to mean something quite different from what I had said.

Thanks to the moms of Around the Dinner Table (ATDT), I learned to say a somewhat bored “mm hmm” in response to disordered things she would say, and to change the topic to something other than food/bodies/eating disorders. My job was to present her with the nutrition she needed, to provide loving and consistent support, and to arrange whatever back-up I needed to create optimal conditions to promote calm meal and snack times. And, to try to help her to have a normal 7-8 year old life despite all of the supervision a kid who can’t self-regulate her own nutrition needs.

Fast-forward today, and my healthy, happy daughter is eating well, and doing great. I have my articulate (for a 10 year old) and logical daughter back, and that’s been true for some time now. Her reason has returned! She can understand and process a solid explanation, and her analyzed knowledge of how eating disorders work to trick her into disordered thinking helps her to recognize and disable the ED thoughts that come her way. For example, related to her desire to be skinny (yes, she does want to be skinny!) she can lament the fact that her muscular body isn’t a good fit for “skinny jeans” or “jeggings” and understand that fashions change (skinny jeans won’t be “in” forever!), that leggings work great with dresses or mini-skirts, and that our job is to find clothes that flatter the bodies that we have. And, I’ve been amazed to hear her repeating my explanations to others. My daughter still has some disordered thoughts, but is becoming an expert at sorting out the junk mail and asking for help with disordered thinking by asking for a reality check.

I am very grateful!


---Mother of a daughter diagnosed with AN at 7 and now in an active recovery.


ATDT Links:

How Long Does it Take 
How to Respond to the Irrational ED Talk

Monday, January 12, 2015

Advocacy Mondays: 5 Questions Answered By Fiona Bromelow, UK



1.  How did you find your path to parent-advocacy?   
 
As an Englishwoman I'm still not sure that I am a "parent-activist". Our culture still seems to associate parenthood more with Philip Larkin's description of what your mum and dad do than with responsible leadership. As for activism well that at the very least involves illegal protest doesn't it, if not actual taking up of arms? 
 
So a "parent-activist" would be a wild-haired mother hurling Molotov Cocktails. I don't associate with such people. I was on the Playgroup Committee followed by the Primary School PTA for goodness sake. 
 
It was my contact with Laura Collins in the early years of this century that taught me both the more American words for what I was doing and the necessity to fight for the right to do it.
 
As a conformist, a good girl following the rules, I joined the committees one was expected to as my children progressed from Toddler Group to Swimming Classes. If the ED clinic had had a Parents and Professionals Association I'd have joined immediately. Among the many shocks in those first terrifying years was the realisation that they didn't, that although thousands of families must have been going through the same kinds of challenges at exactly the same time, and millions must have done over the centuries that these foul illnesses have existed, as a family we were expected to go through this alone. 
 
I reached out via the Internet. I met a lot of very broken people, and a lot of very ordinary ones, and a few really inspirational ones like Laura. 
 
Together we discovered that there wasn't a Parents' Association or an Awareness Raising Committee or a Parent Activist Group but that, whatever you called it, there was an enormous need to create one NOW.
 
 
2. What does your advocacy work consist of? 
 
Over the years since I met Laura I have done quite a few things that might be called advocacy. Some have been fun, others have been rather scary. As the daughter of parents who met through politics I don't mind writing to Prime Ministers. I wrote to Blair and got a reply from Brown so that dates me.
 
The Internet makes anonymous or discreet campaigning easy. I have accounts for most of the major newspapers in this country, and for quite a few in other countries, that allow me to comment on articles and to try to get more factual information out there and to post people to the F.E.A.S.T. website. I’ve also enjoyed speaking at various smaller conferences and events about F.E.A.S.T. as long as I have a Laura or an Erica to hide behind.
 
Facing my local services, the professionals who have seen me weep, watched me fail and flail, is another matter. I have done more local work, attended more local meetings and written to more local bodies, but I haven't enjoyed it and I don't think it has been as fruitful. 
 
I am currently a moderator on the Around the Dinner Table forum and still do some coordinating of UK activity but sometimes feel that I am beginning to flag. Then a new challenge will come along, or, more likely, someone new will be facing the same old challenges, and I become enthused to keep on keeping on with advocacy.
 
 
3. What change do you hope to affect? 
 
My first motivation for reaching out on-line was for understanding, to not feel so alone. My main motivation now is still to help other parents realise that they are not alone.
 
After that, well it would be wonderful to feel that I have contributed in some way to raising proper awareness that eating disorders are treatable biologically based illnesses. It seems to be something that isn’t being grasped quickly enough by intelligent people even within the “eating disorders world” let alone by the popular press, but I WILL keep plugging away at it. I may not be a very patient person, I may sigh and even scream when I read something stupid, but I’m persistent and I will keep on sighing and screaming and then taking  a deep breath and trying to put the case for understanding and treating these ILLNESSES into polite words.



 
4. What are some of the challenges/frustrations inherent to this type of advocacy?  

When I petitioned the Prime Minister in 2007 it was a time when we still remembered (if with a hint or a dollop of irony) that "Things can only get better".  The petition was deliberately general, basically asking "please sir can we have some more". More research, more support, more money.

I honestly think it did do some good and that in some areas we did get a little more. But it's not enough. Not nearly. 

Progress IS being made in treatment protocols and service provision. The existence of F.E.A.S.T. and other organisations means that people don’t have to feel alone even though far too many of them still do. The world of genetic research and genuinely personalised medicine is only just waking up. 

And yet, and yet…. Progress is painfully slow. Parents are STILL,14 years on, having to challenge blaming attitudes and dismissive professionals. Patients are STILL being treated as if they are being wilful or vain, rather than sick. I really don't think that the Daily Mail will be the first source of educated comment on anything any time soon, but the cover available in some of the professional press is almost as bad, and that is appalling.  
 
 
 
 
5.  Top 5 things you would share with a family facing a new diagnosis?

1. You are not alone

2. You did not cause this and your child did not choose it

3. This is a biologically based, TREATABLE illness

4. You have EVERY right to be involved in your child’s treatment but you AND YOUR CHILD deserve PROPER, tailored, support. Being expected to do things that you cannot is NOT “empowerment” it’s an abrogation of responsibility on the part of the professionals.  

5. Hang on in there and enjoy the good bits like making some of the best friends you’ll ever be lucky enough to make

Thursday, January 8, 2015

From the Forum: Advice from One Father to Another.....


For your Husband:

As a Dad, I can tell you that this disease is simply the hardest thing I've ever come up against.    ED takes every technique I've ever used as a Dad and turns it against me.   These girls are smart, and ED uses that intelligence to turn our strength into a weakness.   ED cannot be reasoned with, cajoled, intimidated, consequenced, flattered, bribed, or anything "elsed" out of our daughters.    ED is a horrible, brain-based illness that forces us into learning new and often very uncomfortable and seemingly unnatural methods of parenting that we have never even considered before.   

I've been home and at school with my daughter for more than 2 years of this journey so far.    I've seen behaviors that I would have never believed possible come from this beautiful young woman in my life.   I've suffered fear,  anxiety and feelings of helplessness like never before in my life as I've seen this disease ravage my little girl.   (I've said it many times:  If a person were doing to my daughter what this disease is doing to my daughter, I'd be in prison right now...because there is no way I could not defend her.)    I didn't want it to be true.  Not my girl.  But it is, and I have to change to help her get through this fight.    

So I read.  I started with  "Brave Girl Eating" - and realized that this disease is frighteningly similar across countries and cultures.   I've hung out on this forum and shared my frustrations, and read the frustrations of so many others.    Sometimes it is depressing, but when I've needed a lift, it has been good to not be alone.     I've started counseling with my wife - because this thing places incredible strains on all my relationships, and I need that "sounding board" once every few weeks to help maintain my sanity.   

And, finally, I'm coming to accept that this is a marathon, not a sprint.   We're 2 years into this battle and coming off a massive relapse, but, so far, coming away from that horror in a better place than we were before.   Things DO get better in most cases, but not quickly and not easily.   There are setbacks, relapses, heartbreak all over again, and it takes a huge toll.   But there is also recovery, and respite, and the occasional small victory (which I celebrate VERY quietly) that make the effort worthwhile.    

So step 1?   Start by accepting that you can't "fix" this.   Step 2?  Learn all you can about this disease, the experiences of others, what works, what doesn't, and so on.    Step 3?    Get in the trenches.    I'd rather face live ammunition than my angry daughter on most days, but that is the battle I've been handed.   Step 4?   Learn new ways to respond.    Learn to be a concrete wall in a typhoon.   Lean to NOT react.   


Once you get to that point - you're ahead of me...so please write and give me advice.   



- From ATDT parent support forum.  
Link to full thread here.