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

Monday, March 9, 2015

Advocacy Mondays: 5 Questions Answered by Becky Henry


BLH head09 copy.jpg1.  How did you find your path to parent-advocacy?


In 2000 my daughter was diagnosed with EDNOS after a two year fight to get a diagnosis.  Had I known then what I know now, I believe we would have received excellent evidence based treatment. Instead what we received was treatment failure and people who pushed us aside and implied we were part of the problem.

The only thing that kept me from rocking in a corner was the coaching training I was getting at the time.  


Once I learned how to reclaim my sanity and joy and to support my daughter I decided I would help other parents to reclaim their joy, and learn to unconditionally support their kids  while setting healthy boundaries.  It was the beginning of my quest to change the way parents are supported when caregiving a child with an eating disorder. I knew of no one who was doing anything for parents at that time. Someone had to change this and I decided that someone was me.

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


Refusing to be Silenced by ED
My advocacy work began right away when I refused to succumb to the silence that eating disorders want to use as their power over us. Much to my daughter's dismay I told friends and family about it openly. We need their support and even then I knew that this wasn't anything to be ashamed of.  I knew her brain was deceiving her.


Research and Learning
Bookcover.jpeg
During the two years of trying to get her diagnosed, I researched eating disorders and learned more than I could even believe about these deadly brain illnesses. Thank goodness the internet had just become accessible. Yes, that's how long I've been studying these most deadly of all brain illnesses.  Because my daughter was never slim or anywhere near thin, no one believed she could have an eating disorder. It wasn’t until after 2 suicide attempts that anyone believed me.


Coaching Parents and Supporting them with Resources
Because I’d just been trained as a professional coach, my advocacy then moved onto coaching the parents of kids with disorders, educating healthcare providers so that people could be properly diagnosed and receive treatment and then I wrote my book, Just Tell Her To Stop: Family Stories of Eating Disorders to help parents feel less alone and to educate health-care providers about the realities of eating disorders.  


Attending Conferences
I have attended as many conferences as I can and have enjoyed meeting professionals and families alike.  Things have definitely changed since I first started attending conferences in 2004 when I met Kitty Westin in Chicago. Back then parents were not very welcome at conferences, fortunately I met Kitty and she was thrilled to see another mom there and welcomed me with open arms. I decided I would change the viewpoint of what professionals thought of parents so they could see that we aren't a bunch of nut jobs who caused our kids to be sick or who dieted  so much that our kids became sick.  I've been determined for professionals to see us as colleagues and I couldn't be more thrilled to see the tide turning and including families in the course of treatment.  


Speaking OUT
I truly believe that families must continue to speak up and speak out and show the world that we have nothing to be ashamed of these are biological brain illnesses and they would happen regardless of what type of parents we are.  I helped with the first ever M.O.M. March on DC in 2014 and it was very empowering to see so many parents on The Hill being seen in the sunlight - out in the open - no longer hiding in shame behind closed doors.
Becky Henry speaking at MN LPN conference Alexandria, MN April 2010


I also speak to health-care professional associations to teach them about the family experience of eating disorders along with the basics so that they can be better equipped to recognize, diagnose and refer families to proper evidence based treatment.


Serving on the F.E.A.S.T. Board
I’ve served on the F.E.A.S.T. Board for about 4 years now. It is a wonderful opportunity to connect with bright, talented, compassionate parents who are making a difference in the world.


Bringing FUN to Parents
Most recently my advocacy has included hosting retreats for the parents of kids with disorders so that they can get their lives back.  It’s been a great honor to assist moms as they get their groove back and learn that it's okay to have joy, peace and fun again.  Watching moms reclaim the power that ed had temporarily taken away has brought me great joy while I  help them learn how to support their loved ones in recovery.



3. What change do you hope to affect?


I hope to change the way parents are supported when caregiving.


What does this mean?
It means continuing to create programs that parents world-wide can access to have the much needed gentle-loving kick in the backside to do what it takes to help their child all while keeping their 02 mask firmly in place.


It also means I hope to get treatment centers to include the families in treatment AND provide support for the family in a sustaining way.


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


HNR 2014 photos.jpg
There is no money for supporting and nurturing the family.  Insurance companies are very short sighted and do not see the value in providing coverage for parent support services. There has not been enough research on what a difference it makes in the child’s recovery when the parents are supported through the caregiving.  We are getting there though.










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

  1. Get out of denial ASAP.
  2. Learn as much as possible as fast as you can.
  3. Connect with other families living with these deadly brain illnesses.
  4. Practice EXTREME Self-Care!
  5. Get your oxygen mask firmly in place and keep it there. If this sounds a lot like #4, it is because it is SO VITALLY important I wanted to make sure you got it.  SELF CARE IS NOT SELFISH, (Yes, I was yelling that) it is Essential.


Becky Henry, CPCC, Mom, Founder of Hope Network, LLC

Friday, March 6, 2015

Friday Reflection: Just Keep Going

By Hannah Joseph


Hope is a reason to take action, to make a plan and then to change the plan when it isn't working....

I’m never sure where to start when I tell my story. I was a severely anxious and overly-sensitive child with recurring nightmares, OCD-like rituals, and a host of sensory issues. I remember having body dysmorphic thoughts and feelings as early as 4 years old. At 13, my anxiety was replaced by the severe depression that would be my near constant companion for the next 10 years. My path into my eating disorder started at 14 with restricting my food intake so I wouldn’t gain weight after giving up the sports I had been active in my whole life. My weight fluctuated for the next three years as I alternated between restricting and over-eating but never enough that anyone noticed. And then, few weeks before my 18th birthday, I stopped eating almost completely. Thing got very bad quite quickly. And then they got worse. The next six years would see me caught in a never ending cycle of binging, purging, starving, abusing diet pills and laxatives, over-exercising, and self-harming. I was often suicidal, experienced frequent panic attacks, used drugs and alcohol and engaged in every self-destructive, impulsive behavior you can think of from driving almost everywhere at 100 mph without a seatbelt to walking through dangerous parts of foreign cities alone in the middle of the night.

Honestly I’m not sure that any of that matters - when it started, how long I was sick, how much weight I lost, or the specific behaviors that I engaged in. Here is what does matter: My illness did not fit neatly into any diagnostic categories. I am both incredibly anxious and highly impulsive. My depressive episodes are accompanied simultaneously by hypomanic symptoms. I crossed the lines between anorexia, bulimia, and ednos more times than I can count. Even now I do not fit into a PTSD diagnosis but I clearly suffer from trauma related symptoms. I want people to know that even from an incredibly complicated and muddled starting point, recovery is possible.

I celebrated five years in recovery this month although, as with the illness, it is hard to pinpoint exactly when recovery started. Was it when I stopped binging and purging? When I stopped over-exercising? When I stopped counting calories or relying rigidly on a meal plan? Was it when I reached what everyone thought was my “healthy” weight or when my weight stabilized 20lbs above that number? I don’t know for sure when I stopped being sick but I can tell you what being well looks like. It looks like eating all types of foods without guilt or fear. It looks like being active in ways I enjoy because I want to not because I have to. It looks like playing soccer once a week, not caring that I’m not very good, and drinking beer and eating nachos with my teammates afterwards. Recovery means accepting that I need to maintain my weight where my body wants to be even if I don’t really like it. It means understanding my life-long vulnerability to my illness and doing the things I need to to stay well. It looks like asking for support when I am struggling.

People ask me how I got better. I tell them it took a lot of food, finding the right medications and learning the right skills. It took a lot of time and support from people around me and a huge amount of luck - a million little things happened at the right time to keep me on the right track and a million little things that could have derailed me did not happen. I know this answer is frustratingly vague and I so wish I had more concrete advice to give them.

There is one thing I can say with the utmost certainty: finding good information about my illness changed the course of my life. I found F.E.A.S.T in 2007 and began reading the forum daily. Until that point I had only encountered old school ideas about eating disorders - that it was my parents’ fault or society’s fault, both of which I interpreted as meaning that it was mostly my fault. I wish I could say that I was an instant convert to a biologically-based view of EDs or that once converted I was able to immediately begin to apply the principles to my own recovery, but neither of those are the truth. At first I thought the parents on ATDT were horribly misguided - how could they not know that eating disorders aren’t about food? I was, however, immediately struck by how much these parents cared about their children and so I kept reading and gradually noticed something: their kids seemed to be getting better while almost everyone I knew from treatment stayed sick. So I started reading the books and articles recommended on the forum and slowly my view of eating disorders in general and my narrative about my own illness - and what was needed for recovery - began to change. This new perspective allowed me to begin to forgive myself and my family. It allowed me stop searching for reason and meaning where there was none, where there was only ever my own muddled brain chemistry playing malicious tricks on me. It took another three years and several false starts before any of this translated into any lasting change but I know that finding FEAST changed my life.

People tell me I should be proud of myself for my strength and persistence and I am but I don’t for one second believe that those were the key ingredients in my recovery. I do not believe that the way I found recovery should be considered roadmap for anyone else. My recovery is not more real because I did it myself and the fact that my illness did not kill me first is some sort of miracle. Allowing anyone to continue in their eating disorder until they can find their own way out is cruel and misguided and will most likely fail. 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.


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. I want to tell you that their unspoken anger and hurt if you do nothing will be far greater and longer lasting than the words of hatred they will hurl at you when you intervene. And I want to tell sufferers that recovery is real even though you can’t imagine it. You are not too broken - you can be whole again. There are so many wonderful things waiting for you on the other side of this battle. To everyone facing this hideously unfair and horribly misunderstood illness: just keep going. This journey is not never-ending and the view from the top is pretty awesome.




Hannah is 29 and has been in recovery from her eating disorder for five years. She lives in San Diego with her husband and their dog. Hannah currently works at a residential mental health treatment center and plans on pursuing a career in the eating disorder field. 

Monday, March 2, 2015

Advocacy Mondays: 5 Questions Answered by Faith Yesner

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


It was April of 2009, 7 months after my daughter was diagnosed with anorexia, when I first stepped out of my life of "politically ignorant bliss" and onto Capitol Hill as a lobbyist for the Eating Disorders Coalition (EDC). Before that day, I didn't know what a lobbyist actually did!! In fact, until I actually lobbied...until I took my first step into the office of my Representative (heart pounding, hands shaking), I never imagined how empowering and satisfying lobbying would be! Of course, before that day, I had no reason to get “all political" or even marginally involved in what I just didn't "get." I was your middle class mom of 2 easy going kids, one in college and one in HS, focused on college apps and auditioning for my finally flourishing acting career!

Life came to a screeching halt with the anorexia diagnosis, and devastation ensued for our family. I was barely functional from shock, fear and depression. I was full of rage at what this disease was doing to my family and more so, to my beautiful daughter. In addition to that, I had to battle insurance for coverage even when it was medically necessary and urgent, and advocate constantly to keep my daughter from falling through many treatment cracks. As I educated myself about eating disorders, treatment protocols, lack of fair and necessary insurance coverage, and lack of educational programs and info about this deadly disease, it was evident that the system was terribly flawed.  It was also evident that many battling eating disorders were, in fact, falling through the cracks and suffering terrible consequences.

Now I had a reason to become “all political"


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


Advocacy according to Merriam Webster:ad·vo·ca·cy noun \ˈad-və-kə-sē\
: the act or process of supporting a cause or proposal : the act or process of advocating something

Advocacy in my words:   Listen Up, we have a serious problem...unnecessary deaths and suffering from a treatable, biologically based disease.  Insurance companies making medical decisions that are akin to malpractice and that risk lives, insurance companies that refuse to even allow treatment for eds, little or no research dollars allotted to eds...need I say more?

After my first experience with lobbying with the EDC, I felt more determined to advocate further, not only by lobbying, but by being more knowledgable about: eds, insurance companies and how they fail, the team treating my daughter and how to have a voice in that mix, and how to have a voice all around in this war that threatened to take my girl.  First and foremost, I had to be HER advocate and to effectively do that, knowledge was power, a weapon and the force that I needed.  I went to a NEDA conference and attended sessions that discussed battling insurance for coverage, gathered information from every exhibitor there, whether I felt is was relevant for me or not...I made as many contacts/connections as possible and hung on every word of every professional I heard speak.


I was well aware that, although my first priority was my daughter, the information I was gaining would eventually be shared with others in need. While advocating for her almost daily while my daughter was in treatment both outpatient and even when she was inpatient/ residential, I also stayed in contact with parents of other children suffering.   Both online and by phone or in person, it was important for me to have support and to be able to share whatever wisdom I gleaned from each step of our journey.

If I found interesting and informative articles on eds, updates on research, etc...I would pass them on to my daughters tx team.   I didn't assume they read or knew about these...and most of the time they were clueless.   Made me realize just how much we as parents NEED to advocate on some level, if only for the sake of our own child(ren).  Recently I attended a FEAST conference and gained new knowledge about FBT that had never been explained in a way so clear and understandable to me.   This opened up new possibilities for our family and new ways of approaching recovery.

I also joined a support group on FB called MAED (mothers against eating disorders) and that has been a Godsend...connecting with moms worldwide who GET it! who share information freely about their experiences, treatment info, facility info.  So many on MAED have been guided and hand held thru this devastating maze, and many MAED moms continue to offer their hearts, knowledge and support to help.   It is a lifeline in a storm sea!!!
If I could help even one family avoid any unnecessary agony by offering them a better way/answer/solution I've learned by going before them, it is a victory.

There are times I must limit advocating on a broad level, if my daughter is struggling.   We are still in the battle after 6 years, and i need to know when to pull back from public advocacy, and focus on personal advocacy and support for her.

3. What change do you hope to affect?

I hope to send a message that we, as strong and passionate and pissed off moms, dads, friends, etc,  will use our voices, influence and strengths to get the attention of the political/medical/insurance professionals and insist they take actions that will de-stigmatize eds, demand that insurers provide necessary treatment for all sufferers, provide adequate research dollars towards further in-depth study of eating disorder etiology and treatments, and to insure that medical personnel are fully trained about the medical components/symptoms and dangers of eds.


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


The challenges can be many...yes, balancing the desire to make change happen fast, with the reality that change is slow.  Especially in the political arena.  Very slow.   Patience becomes second nature, a learned virtue in this marathon.   There are times when I desperately want to use my voice but doing so could be detrimental to my daughter in her recovery.   So I need to know when to pull back against the driving force to plead my case!!


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

1. This isn't your fault, and it isn't your child's choice, nor is it just a phase.


2. Put on your armor...knowledge, oxygen tank, support system.  This is a marathon, not a sprint.  Self care is vital.  For the survival of all.

3. Do not delay getting your child treatment...join MAED, FEAST, Around the Dinner Table, ASAP and ask for guidance. Understand that your child is held captive by the Ed and cannot stop behaviors without help. Early intervention upon diagnosis is crucial.

4.  Do not assume your medical dr. is knowledgeable about eds.  Try to find ones that are, or are willing to read and learn.  An excellent resource to give to doctors is  the Guide to Recognition/Management Eating Disorders: Critical Points for Early Recognition and Medical Risk Management in the Care of individuals with eating disorders (www.aedweb.org).  It's downloadable.  Have multiple copies on hand.

5.  Breathe. Hope. Reach out for support, do not go it alone.  It's ok to feel angry, devastated, sad, helpless, and it's also ok to be gentle with yourself as much as possible.  Find your own therapist if possible. No guilt, no blame...just a new normal, towards recovery.








Faith Yesner lives in Philadelphia with husband Peter. Besides her most important job of being MOM of two young adult children, she is an actress, singer-songwriter, and eating disorder advocate and mentor. Her passion in this field comes from supporting her own child as she recovers from a 6 year battle with an eating disorder.