Thursday, July 16, 2015

“Same Brain, Different Operating System”










I love metaphors. A few days ago on I scrolled by a meme on Facebook related to autism awareness.  It got me thinking about eating disorders and brain science and my work with F.E.A.S.T., and I thought it would be a great title for a blog entry, so here goes…

I’m sorry to disappoint anyone, but this isn't going to be a blog on neuroscience or technology or even directly about eating disorders - it’s about advocacy and relationship building and how F.E.A.S.T. works to support our mission and achieve our goals.

I have been puzzled by the latest flurry of "old vs new" attitudes between ED advocacy groups with similar goals which is occurring on social media.

Of course some groups are older than others, but that doesn't mean that a "new" approach is any better than another group's "old" approach. Every group needs to work according to their own operating structure, which will be different, not "good /bad" or "old /new."

Basic Advocacy is Simple.

Anyone can advocate for something they believe in. On the surface it is a simple recipe:

1. State your mission.
2. Set your goals.
3. Do your research.
4. Plan your strategy.
5. Get to work.

Along the way, you will probably find others with the same goals. Collaboration is good and can broaden your voice; but, as a wise friend once told me, collaboration is about relationships, and relationships are far from simple.

F.E.A.S.T. began with simple. A group of parents found each other through whatever networks they could - conferences, online groups, letter writing, phone calls, etc. They identified a similar mission and similar goals and they got to work. The “Around the Dinner Table” forum was the result of that first effort, and continues to be a place for caregivers to connect and share resources, experiences, and support each other through the crisis that is a loved-one with an eating disorder.

This group realized that the ineffectiveness of many eating disorder treatments, the lack of research, the lack of support for families and the stigma around mental illness were creating huge barriers to understand and treating eating disorders, and were breaking apart families needlessly.

By creating F.E.A.S.T., choosing a Board of Directors, establishing a set of Principles, adopting by-laws, and filing for legal status as a non-profit organization, F.E.A.S.T. was poised to start building relationships with other organizations in the eating disorder community. As F.E.A.S.T.'s membership grew, the voices of families and caregivers began to be heard by professionals and other advocacy groups in the field.

F.E.A.S.T.'s Primary Mission is to Empower Caregivers.

We do this in three ways:

1. We provide peer support on the “Around the Dinner Table” Forum.
2. We provide access to facts and resources for caregivers to educate themselves and others about eating disorders.
3. We provide public spaces for discussion of ideas and advocacy issues.

F.E.A.S.T.’s discussion spaces are public because we believe transparency fosters a broader dissemination of ideas, and a broader point of view for all stakeholders in the eating disorder community.  F.E.A.S.T. does not censor discussions even when they do not align with our principles and our discussion spaces are moderated because we hold high standards of conduct.

Censorship is not the same thing as refusing to tolerate bad behavior. Kindness and civility is our first and most important rule and we will step in to stop personal attacks, or self-promotion and will occasionally close down a thread when a discussion becomes disrespectful, hurtful, or when others use F.E.A.S.T.’s  spaces to promote their own agendas, events, or initiatives without permission.

Censorship is also not the same as setting requirements for participation. Our ATDT Forum is public for anyone on the internet to read; however, only caregiving members may join the discussion. We have important reasons why we do this, but that is the subject of another blog!


Relationships are Complicated.

F.E.A.S.T. believes that educating caregivers gives them the tools to advocate, and we are excited to see new advocates starting new groups with similar goals. Unfortunately, sharing goals doesn't always make for effective collaboration with groups that have different missions, different strategies, and different operating procedures. Alliances work when relationships work. Relationships work when we respect each other's differences.

F.E.A.S.T. believes in a collaborative approach to advocacy that requires mutual respect.

F.E.A.S.T. welcomes opportunities to collaborate with other non-profit organizations in the eating disorder field, and individual advocates and other advocacy groups working on specific initiatives. These proposals are brought to a committee or the F.E.A.S.T. Board and discussed before a decision is made to partner with or join an initiative, support a position paper, publicize an event, etc.

F.E.A.S.T. understands that challenging an idea is different from challenging an organization or an individual. F.E.A.S.T. believes in having difficult conversations in order to open doors and build relationships.  F.E.A.S.T. has never shied away from criticizing ideas that contradict our principles or scientific fact, but we do not find it productive to do so by publically putting a potential ally on the spot, or by demanding insight into an organization’s internal operations or discussions.

F.E.A.S.T. plans its advocacy efforts through our Board of Directors, Committees and Task Forces. We welcome new ideas, constructive criticism, and individuals who want to join our volunteer pool and help with specific tasks or programs. F.E.A.S.T. is only as strong as its members and its relationships and we hope you will join us or work alongside us in the spirit of respectful collaboration.

Leah Dean
Executive Director, F.E.A.S.T. 


Friday, May 15, 2015

Nine Wonderful Truths

F.E.A.S.T. is committed to a coalition-building model of advocacy work.  It is one of our bedrock principles: a committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients.

In April, a group of representatives from 13 eating disorder advocacy groups and professional organizations sat around a table in Boston.  A group comprised of professionals, caregivers and patients sat around this table, eating lunch, and talking about points of connection and how best to work together in service.   The starting point, it was decided, would be the basics, identifying a clear and unified message that all agreed upon.

This is important.  Very important.  A unified message based on current scientific knowledge about a group of illnesses that has been poorly understood for so long.  This is so beneficial for families. It is a new baseline.  It is a place where families can start and it can inform what they ask for and what they can expect.

To all those at the table:  It was an extraordinary effort and the mutual respect was palpable.

Here are the basics.....Nine Truths (pdf for printing):

  

Truth #1: Many people with eating disorders look healthy, yet may be extremely ill.

Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.

Truth #3: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.

Truth #4: Eating disorders are not choices, but serious biologically influenced illnesses.

Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

Truth #6: Eating disorders carry an increased risk for both suicide and medical complications.

Truth #7: Genes and environment play important roles in the development of eating disorders.

Truth #8:  Genes alone do not predict who will develop eating disorders.

Truth #9: Full recovery from an eating disorder is possible. Early detection and intervention are important.











*The Nine Truths About Eating Disorders is produced in collaboration with Cynthia Bulik PhD, FAED, Distinguished Professor of Eating Disorders in the Medical School of the University of North Carolina, Chapel Hill, based on her 9 Eating Disorders Myths Busted talk at the National Institute on Mental Health in 2014.

Monday, May 11, 2015

Advocacy Mondays: 5 Questions Answered by Alec Rodney

1.  How did you find your path to parent-advocacy?  

I spent the early part of my working career in public policy.  I always admired those with a passion for advocacy but I didn't feel connected enough to a single cause.  Low and behold Eating Disorders found me (via my daughter) and I had a reason to become passionate.  Why?  Because, for most of us, the system feels like it is working against us when we are trying to help our children.  The fact that there is so much outdated and bad information about eating disorders still circulating strengthened my drive to be an advocate for change.



2. What does your advocacy work consist of/ how do you define advocacy?  

Advocacy can be defined in many ways.  I believe any time we can EDucate someone about the truth behind eating disorders we are advocating.  My daughter has wanted to keep a low profile regarding her illness.  I have respected that and kept my efforts “behind the scenes” sharing our story with family and close friends who live outside of our geographic area.  I have asked them to financially support FEAST and other organizations on the forefront of treatment so to aid in the dissemination of the latest information on eating disorders.  I have volunteered for some projects with FEAST, served as a peer mentor for parents whose children are undergoing treatment at UCSD, and I moderate a closed peer support group on Facebook.  I also have joined in Twitter and email campaigns directed at companies who belittle the seriousness of eating disorders and websites who promote outdated or bad information.  

I went to ICED in April 2015 and that experience opened my eyes to the potential to engage the treatment and research professionals in the field.  I had many positive interactions about the benefits of being more inclusive of parents in the treatment process and I plan to dedicate a lot of time and effort into keeping those dialogues going.


3. What change do you hope to affect?

I hope to affect change in many areas.  As a parent mentor, I hope to get other parents who find their way to the other side to stay connected to the ED world.  So often parents want to just move on with their lives and run back to normalcy.  Unfortunately this desire helps perpetuate the stigma associated with the illness.  Parents of recovering/recovered sufferers can be the foot soldiers in the war against bad information.  We can join together to EDucate the population at large.  If every parent is willing to share their story with a half dozen close friends, there will be thousands of more EDucated people. As these close friends come into contact with other misinformed people, they can educate and this type of ripple effect can change public opinion.

I am also working hard to project the following message to the professional community of doctors, clinicians, and researchers: The exclusion of parents should be the rare exception in the treatment of eating disorders, regardless of the setting.  Empowered, educated, valued parents can be the key to guiding a successful recovery for many sufferers.


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

My biggest personal challenge is wanting to speak up more but also wanting to respect my family’s desire for privacy.  This revolves around the continued stigma associated with eating disorders.  As my daughter’s recovery has taken firmer hold, I have raised my voice and profile a little more.  I am most frustrated by treatment centers and professionals that refuse to bring their treatment methods into the 21st century. If an oncologist was practicing 20-year-old medicine, patients would be outraged.  We need to find a way to discredit the eating disorder professionals that continue to profess that families cause EDs or that patients shouldn't be treated until they “want to get better.”  We need primary care doctors and treatment providers to follow the evidence and read the current research on the genetics and neuroscience of eating disorders.



5.  Top 5 things you would share with a family facing a new diagnosis?

  1. There is hope for recovery
  2. You have to be your child’s biggest advocate in the treatment process and you can/should question doctors and treatment professionals, many of whom are using outdated treatment modalities or have not been educated in recent advances.
  3. You did not cause the ED.  Run away from anyone who tells you otherwise.  Their words are poison to your family.
  4. Weight restoration is the critical first step AND you have the ability to re-feed your child.  It may be the most difficult thing you have ever done, but there are thousands of parents and carers who can help you get through the process on forums like Around the Dinner Table and Eating Disorder Parent Support.  
  5. The care team must present a unified front at all times in front of the eating disorder. The team of parents, doctors, therapists and dietitians must act as if they are always in agreement in the presence of the sufferer.  Disagreements should be aired and settled behind closed doors.








Alec Rodney has an extensive background in public sector budgeting, fiscal and policy analysis and currently works part time in the family government benefits consulting business.  He dedicates the majority of his time to volunteer work, serving as an adult leader and merit badge counselor in boy scouts and playing a number of support roles for various high school fundraising activities.  Alec commits a substantial amount of time to supporting other parents whose children are being treated for eating disorders.  As a member of the Parent Advisory Committee for the UCSD Eating Disorders Treatment Center he meets with dads groups, mentors parents one-on-one and advocates for treatment that includes greater parental involvement.  Alec also moderates on Eating Disorder Parent Support, a closed Facebook Group for peer-to-peer carer support.

Monday, March 30, 2015

Advocacy Mondays: 5 Questions Answered by Lizabeth Wesely-Casella


1.  How did you find your path to advocacy?   

I found my path to advocacy because I FINALLY found out I had a treatable condition; binge eating disorder (BED).  

I was 42 when I finally understood I had an eating disorder, different from the disorders that were traditionally represented.  I was so shocked, and so thankful, that after I sat down and thought about it I realized, being an average women, if I’d never heard of my eating disorder, most people probably hadn’t either.   That being the case, if others were as profoundly unhappy and confused as I’d been, I had to spread the word.  I simply could not let people suffer in silence and shame the way I did if there was information to be shared, and consequently social justice to be obtained.


2. What does your advocacy work consist of/ how do you define advocacy? 

I try to describe what I do in two distinct but important roles.  I think of activism as the fun, group, grassroots, slightly controversial cousin of advocacy which is more, relationship building, talking, collaborating and informing. 

I mainly advocate but that is probably due to my geography.  Living in Washington DC I have the opportunity to interact with people who require relationships and conversation and whom, if they have learned to trust you, will allow you to educate them on nuances they may not understand personally, but which can make a huge difference in policy and programming.

There are times I put on my activist hat too, marching, joining campaigns in person or on social media and the like.

Sometimes, as in my experience with the Let’s Move! Program, activism becomes advocacy.  Were it not for the activism of petition drives, social media campaigns and the orchestration of a sign-on letter to the White House, I would not have had the opportunities to meet with the staff, formally review the program and make recommendations on the initiative to prevent weight stigma.

All action is worthwhile action – just know your audience and work with them accordingly.  Don’t use your booming activism megaphone and taunting language in an office with people who would otherwise listen to your concerns.


3. What change do you hope to affect? 

Over the years my passion has become advocating for weight bias and weight stigma prevention.  I dearly wish to bring the conversation about the discrimination of people in larger bodies to the civil rights table where it belongs.  When people talk about rights and liberties for other demographics, I believe that size and weight should be as natural a part of that conversation as gender, race, religion and sexual identity.


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

People cling to their prejudices – whether intentionally or not.  The hardest part is actually two fold in my opinion.

First there is a glut of misinformation about weight as it relates to health.  People have been told, and sold, and continue to buy (to the tune of $65 Billion a year) the idea that thin bodies are inherently healthy and large bodies are inherently unhealthy and this is a myth perpetuated by the diet industry.  Science, and untold number of studies confirm, that the body can be healthy in any number of sizes and shapes – health is dependent on care and healthy habits, not size.  This misinformation leads us to point number two, which is…

People think they’ve got this figured out.  They are not interested in learning the realities of size diversity and how it impacts the lives, livelihoods, education, cultural identities, community involvement, crime, mental health, economics and much more. They don’t understand why the fat joke actually does harm and how it perpetuates stigma and discrimination.  If point one is misinformation, point two is intellectual laziness.



5.  Top 5 things you would share with a family facing a new diagnosis? 

No matter what the ED, it is treatable – some EDs have a wealth of information and others do not, but there are top notch organizations to help guide you to the right resources and treatment providers.  Reach out to BEDA, NEDA, MEDA, ANAD, FEAST, EDC…  Just start reaching!

Families and friends don’t cause EDs (but they can have an impact on both crisis and recovery)

There is an entire spectrum of people in the ED community – some will be “your type of people” and others will not.  Do not get involved in personal politics, focus on your recovery.

There are are no perfect paths – what’s right for one person’s recovery may not be right for another person.  Choose what works for you even if it’s unpopular or you have to advocate for yourself.  You are unique and so is your ED.

You do NOT have to put up with medical providers who do not honor you – your doctor, or your team, is there to guide and support you, not shame, blame, judge or any other purpose.  If you are not receiving the care you feel you need or deserve, break up with your doc and find someone who respects you.  You won’t make headway if you hate your provider.







Lizabeth Wesely-Casella is an advocate and business consultant.  Her work supports binge eating disorder (BED), impulse control disorders and Weight Stigma.  As a speaker, she blends science, humor and cultural wisdom to engage her audience, creating a clear understanding of where health disconnects from body shape and that neither impact personal value. Lizabeth specializes in the prevention of weight bias and mental health stigma through speaking writing and coalition building.   She is the founder of the website BingeBehavior.com and her skills as a respectful leader and thoughtful teammate have built a reputation among her peers as a key individual to work with in the policy arena  Lizabeth lives in Washington DC with her loving husband and delightfully spoiled dog Noodle.







Friday, March 13, 2015

Hope as a verb: DO! hope

So....Hannah's blog post (find here) has been spinning in my head since I received it last week.  Much about the post is brilliant, but what I have been turning over most is what she says about the limits of, or perhaps the 'role', of hope:
So while my story is one of hope, it is not a how-to guide. Hope is a wonderful thing and I am truly honored if my story can provide that for anyone but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary.
Hope is the reason to take action.  Think about that.  This is not touchy feel-y 'optimism' hope.  Hope is the reason to take action:   Hope as the agitator and catalyst.  This is hope under pressure. This is hope shown through how you act and what you do. Hope as a verb.

This was in my head when I read an study entitled "Eating Disorder Symptoms and Quality of Life: Where should Clinicians Place their Focus in Severe and Enduring Anorexia Nervosa?" (full article linked in the January edition of International Journal of Eating Disorders.  

Severe and Enduring Anorexia Nervosa (SE-AN) is a term increasingly used to describe individuals with a self-reported illness duration of over 7 years.  I have to confess, I dislike this term quite thoroughly.  Naming is a powerful tool. Naming is how we make sense of our world.  Naming gives meaning and power to a term. 'Severe and Enduring Anorexia Nervosa' sound like some diabolic squatter-  like a really bad case of anorexia just took up residence and refused to leave.  If I had naming power I would choose something more along the lines of:

  • "What it looks like when the illness is misdiagnosed and/or left untreated for years-AN" or, 
  • "When we are confounded by particular combinations of comorbids and simply don't know how to treat effectively - AN".  or,
  • "Phased out of Adolescent care under old treatment models and languished, now waiting for patient to 'choose' recovery-AN" 

I could go on but you get my point: naming is informed by perspective.

The study poses the question:  Where should clinicians place their focus with individuals who have been failed by treatment?  The article states:  ...Existing treatments for AN place emphasis on primary medical symptoms, most notably weight gain. This can be seen as indicated for the majority of individuals with AN where the traditional definition of recovery that includes full symptom remission is the ultimate goal.  Offering treatment where the clinician is focused on weight restoration and recovery could be seen as ill matched to a patient who has been struggling with their disorder for many years and does not share these goals.

The study is a secondary analysis of data acquired during an earlier RTC exploring whether the focus for those with SE-AN may need to change to primarily address quality of life issues.  It is, of course, not an either/or situation and this study does not present it as such.  Rather the study cautions that treatments seeking solely to improve quality of life may be unlikely to produce lasting change and clinicians should maintain a focus on weight and behavioral symptoms as much as on improvements in quality of life.

In other words: Do not give up hope in recovery!  Even when treatment fails....do not give up hope.

Where should clinicians place their focus with individuals who have been failed by treatment?

Hannah writes this in her last paragraph:
I want to tell caregivers that your loved one wants to get better even if they can’t show it. Nobody wants to live in the hell that is an eating disorder but getting out seems impossible and they need you to believe in recovery for them.

Hannah is speaking directly to parents with these words but they are applicable to all those who work with and on behalf of our children.

Do not stop believing in recovery.  Hold fast and tight to 'hope' in your work and remember, in the ED context, hope is a verb..... you don't feel hope you do hope.  DO hope in your work....no matter the length of time, no matter the 'severity'....DO hope.



Reference:

Bamford, B., Barras, C., Sly, R., Stiles-Shields, C., Touyz, S., Le Grange, D., Hay, P., Crosby, R. and Lacey, H. (2015), Eating disorder symptoms and quality of life: Where should clinicians place their focus in severe and enduring anorexia nervosa?. Int. J. Eat. Disord., 48: 133–138. doi: 10.1002/eat.22327