November 21, 2014

Dirty Laundry?

A mother I know has started  The "Dirty Laundry" Project in response to a friend who called it "dirty laundry" to discuss her daughter's eating disorder on Facebook. I am posting this picture as my profile picture all this week to show solidarity and say very clearly that no illness should be treated as shameful or to be hidden. Stigma only serves the purpose of isolation and lack of information. The person who should have been ashamed is the one who thinks talking about illness is something to hide. Hooray for the Dirty Laundry Project and boo hiss to the haters!

November 20, 2014

Research study: Are you a mother who has had an eating disorder?

I believe strongly in the importance of research and I have great hopes for the future when families are better prepared and able to act when it comes to eating disorders.

Researchers in the UK are looking for mothers who have suffered in the past (or currently) with an eating disorder who have a healthy daughter between 11 and 15. Travel costs are covered if you decide to participate.

If this describes you, please consider joining the study being conducted by the UCL Institute of Child Health? Research is so important in understanding and better treating eating disorders. If we could learn more about those at risk before they become ill it could lead to advances in treatment and even prevention.

BREDS (Brain in high risk for eating disorders study) 

We are currently recruiting mothers who have had an eating disorder in the past or have one now, and who have a healthy daughter between the ages of 11 and 15. 

Research has started to study whether the way someone thinks and brain characteristics are linked to the development of an eating disorder, however, we still don’t know if this differences were there before the eating disorder; or if they are a consequence of the disorder. 

We are currently recruiting for a study to understand why young people develop an eating disorder. The purpose of this study is to look at the brain structure and the way of thinking of healthy adolescents who have a first degree relative with an eating disorder. This study will help us figure out if these healthy adolescents have a similar way of thinking and brain characteristics to those shown in patients with eating disorders. If this is the case we might be able to understand what brain characteristics increase the risk for eating disorders. 

What’s involved? - Computerised brain games and IQ test- Questionnaires- Saliva sample Inclusion criteria - One half-hour MRI scan

You are eligible to take part if you:- Have a healthy daughter between the ages of 11 and 15.- Have had an eating disorder at any point in the past, or have one currently this could include Anorexia Nerovsa (AN), Bulimia Nervosa (BN), Eating Disorder Not Otherwise Specified (EDNOS), or Binge Eating Disorder  

We are also recruiting control participants who have never had any mental health disorder and have a healthy daughter between the ages of 11 and 15. 

Compensation You will be reimbursed for travel costs and your daughter will receive a £20 voucher as a token of our appreciation. 

Contact - Tel: 02079052166   -

The study was approved by UCL Ethics Committee (5487/001) and Dr Micali is the principal investigator.

Click here for more details.

November 18, 2014

The picture wall is growing: where's your pic?

I'm having a great time every morning checking out the picture board at F.E.A.S.T. - every day there are new entries and they move around so I love seeing my family in different constellations with other families.

Are you on the board yet???

Fund Drive Updates - Families Empowered and Supporting Treatment of Eating Disorders

November 11, 2014

Principles and Scenarios, and a Bungee Jump

Staying calm and consistent while caring for a loved one suffering from an eating disorder, that is the question. I've spent a decade being shouty about the WHY and the WHAT parents can do. I've been more cautious about the HOW. The truth is: parents want the HOW. NOW.

So, Eva Musby, another parent writer, has rolled out the HOW that so many families are begging for in a new book. She does so with wonderful analogies, references, and some mad animation skills. Check out her video:

In a perfect example of how Musby has thought through what you, the parent, need and are going to ask, she's worked out all the formats you might want to access the book!

Here's what I like best. I have observed, over the years, a growing knowledge base in the parent community. Parents are sharing what they've experienced and tools they've stumbled on and sharing them with others. There is no formula for all, no recipe that will work for more than one family - but what a parent does need is a pantry to walk into and read ingredients and pick up ladles and pans - this book is like that pantry. Dip in anywhere -- and there is a lot here - and find a concept or a tool you would probably only stumble over long after you needed it.

Thank you, Eva, for taking your experience and listening to others -- to other families, to the professionals, to the literature.

And thank you so much for the Bungee Jump analogy!

November 7, 2014

I hate fundraising. But I hate ED more.

When a group of parents around the world started F.E.A.S.T., the first internatonal group OF and SUPPORTING parents of ED patients, we didn’t just want to copy what others were doing. We wanted to change the landscape of what families find and how they respond to these life-draining and life-threatening disorders.
We believed two things were essential:

Focus on what parents can DO.
Follow the science.

We knew we wanted to be a unique voice and that we might stir controversy. For that, we needed financial independence. You see, most advocacy is funded by sponsorships by those selling services to families. This is not to say that providers would tell us what to do, or that what they do was wrong, but an acknowledgement that financial independence would leave us free to focus on the message and not keeping sponsors happy.

So, being financially independent means F.E.A.S.T. depends on the very people we represent: families. We depend on contributions from the F.E.A.S.T. community to do the work we do. Those contributions are not just how we pay the bills for our services but how we know what we do matters. Since 2007 parents and other supporters have been donating what they can to F.E.A.S.T. and by doing so they make the Around the Dinner Table forum possible, they make sure that there are parents represented at eating disorder events, they fund the written materials that families bring to their schools and doctors, and those kind donors make sure that the lonely mother at her computer in the middle of the night finds a place that assures her that it is not her fault and that she can, indeed, get her child back.

F.E.A.S.T. is independent but also frugal. We don’t have an office or paid staff. Everyone at F.E.A.S.T. is a volunteer working from a kitchen table or their laptop in the den. We don’t spend donations on stationery or pens: we spend it on supplying services and providing information.

Independence means F.E.A.S.T. is focused on our mission and not cultivating donors.

I hate fundraising, myself. But independence has its cost. If we don’t want to have to worry whether Hospital One wishes we wouldn’t talk about evidence-based outcomes, or worry that parents at one of our conferences will feel more trusting of XYZ Clinic because they paid for a conference breakfast then we can’t play the sponsor game and we have to operate on less and get it from our own members.

Notably, we rarely ask folks for money. We don’t pepper our members with fundraising appeals, nor do we make donations a condition of membership. We believe parents and caregivers have a great deal on their minds and don’t need to see a fundraising message every time they hear from us.

But F.E.A.S.T. isn’t made of fairy dust and we do need to get donations to continue our work.

Donating to F.E.A.S.T. in any amount is more than a money thing. It’s a vote of support for the parent perspective, and for good science. It’s paying it forward to the parents who will need F.E.A.S.T. for the first time tomorrow morning, or next month, or next year. If what we do matters to you make sure it is there for others. Be part of making the world a better place for families facing eating disorders.

November 5, 2014

Wait, why DON'T we all get along?

I've been fascinated, and of course saddened, by an increase in unfair personal attacks in the ED world. Many people are telling me they feel attacked, shouted down, bullied, unsafe.

Wait, this isn't new. And, oh dear, it's not just in the ED world.

It seems to happen when certain elements collide:

Ideas and people.

I am skeptical that this is really about what any one person did or said or thinks or wants. The interactions are too similar and the outcome is formulaic: shunning of the person and anyone who doesn't shun her and her ideas. Yes, there are a scattering of really maddening people, but they are the exception. I believe these scuffles are not personal but ideological. I believe these battles end in defensive wounds more often than not. And: I believe the conflict is inevitable and necessary and healthy. For that last sentiment I will be roundly spanked, I know. This is a world that fears and loathes conflict!

#realtalk: there is no safe space when you are expressing your opinions in public. There's not supposed to be.

That's the price of being in public. And with Facebook and Twitter and blogs and even email we are now in public a LOT. If your opinion is more than a fluffy bunny affirmation surrounded by rainbows you will hear grumbles. Before, people just smirked and you never knew. Now even fluffy bunny affirmations may be criticized. (Note: I'm not a fluffy affirmation fan.) Bring it!

"But, but, she wasn't nice!" No, she probably wasn't. People aren't always nice. Sometimes they are angry, and sometimes they are just crabby people, and sometimes you've made them jealous or didn't show them enough respect or you look like their mother-in-law. Sometimes something is important enough and delayed long enough to make people really, really, really, really angry. If you require nice 100% of the time you will need to stay home and read bunny books alone. The Internet, your book club, your town council are all closed to you. Also: don't attend any family events.

"But, but, I feel threatened." Many of us feel under threat when criticized or put on the defensive. We care SO MUCH about what we're doing and we work SO HARD to claw a place for what we believe in and we've been brave and kind and patient and WTF! Why is someone damaging my reputation? How could anyone think that I'm anything but right and righteous and good? But are we really being threatened? Isn't it really more that we're not being appreciated and we are being thwarted in our good works? Isn't it that our intentions are being questioned and that is deeply painful?

"I'm a nice person!" Yes, well, my mother thinks I'm a nice person, too. Doesn't make me or my beliefs or my causes nice, too. Nice people can be wrong, even harmful. Rotten people can be right.

Honestly? I think we all need a bit more courage and strength of our convictions. It is okay to disagree. It is okay to be disagreed with. If we are all truly to see one another as equals with the expectation of mutual respect we need to own our place and know that it is JUST our individual place. Being right alone in a room isn't advocacy. We need to be vulnerable, too, and allow ourselves humility.

Laura's New Groundrules
  • Let's pretty please stop saying "people are saying" or anything like this.** This is a sly way of getting individuals to shut up, implying that they are out of line but in such a horrible way that the other person won't say it themselves and that some amorphous group of people is whispering out of earshot. It's creepy. If it's not in public and no one is putting their name on it let it go. Just say "This thing you said bothers me because..." and get on with the actual conflict.
  • Let's stop doing things back-channel. We can fool ourselves that it is being respectful but it is usually politicking and Mean Girling. Say the same things in person as to others. Don't talk about others behind their backs and don't repeat rumors. I know. It's hard. But let's try.
  • Let's stop calling it "attacking" when it is really just disagreement. Sure, it stings when people question or criticize us but let's practice mutual respect by assuming both parties are equals and can both handle the conversation. Let people think wrong of you. Let people BE wrong.
  • If it is an attack, whatever THAT is, let's deal with it. Won't kill us. If we hear the criticism and don't agree then keep going. If not, talk about it and consider change. 
  • Be nice, for goodness sake. Treat others with respect and expect it in return even when they don't -- and they won't -- but take the high road with sincerity for your own karma's sake. Also, it drives people nuts when you behave: they can't dismiss you as rude, which they really, really want to do.
  • Let's accept the fact of disagreement. It's there. We're living on the leading edge of a fast-moving wave: lots is going on, it's complicated, and we're all scrambling to figure it out. We do NOT all agree and we don't agree on some very basic points. Until we do better on that we will not work together, row in the same direction, find common ground, or whatever our palliative phrase of the month is. We do disagree, some of us are going to have to change or split, and while we're arguing things are going to change and we'll ALL need to keep learning. 
  • IDEAS NOT PEOPLE. Discuss ideas, not the people who hold them. It works!
  • Ask questions. Listen to the answers. People are not always saying what you think they are.
  • We're not friends, we're family. It's not about being liked it's about being linked by a cause. 
  • OMG: there are other ideas out there! People hold the most fantastical and bizarre belief sets! I didn't even know those where there! Exactly. Know the history, know the ideas, get to know the people. Be curious. Allow yourself to be surprised.
  • Hot kitchens. It does get heated. But no one can keep anyone out of the kitchen any more. It's a free and open potlatch of ideas and voices. Everyone is responsible for only one voice: their own. We can't make others not be "wrong on the internet" nor can we group people off and segregate them. We will hear things we don't like. We will say things that others don't like. It doesn't break anything. If you're offended or exhausted by it go do something else but don't expect a zen garden in the middle of the highway.
  • No more black and white thinking about individuals. There's too much "our sort" and "OTHER" going on. Reality: we are all in the same boat and but we're each picking which hole to patch and which part of the hull to hammer through but we're all sinking or swimming together. By designating a person on the boat as somehow UNACCEPTABLE what happens is the boat just gets harder to walk around in. I have to see and speak to and share mutual friends with a handful of people who make me terribly uncomfortable. They've hurt me personally and they've damaged my reputation. But I'm not getting out of the boat, nor should I need to throw them overboard. We're in this together. We don't all need to be friends. We don't all need to get along: we need to be alongside.
  • Babies, bathwater, boats... I hate the way people dismiss ideas by associating them with a particular person or group. It's lazy, it's intellectually shallow, and it hurts us all. If you think that I am a horrible person, fine, but don't dismiss the ideas I believe in because you don't like me. I've met too many people who treat ideas like sports teams: this is my set of beliefs because this is my team. Have your own ideas. And don't take the easy way out of rejecting anything I stand up for because I'm associated with it.
Dyspeptic rant over.

** Yes, I know I started this VERY rant saying something like that. Go figure. Believe me when I say I am speaking as much to myself as others as I rant, here.