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.  

Monday, February 9, 2015

Advocacy Mondays: 5 Questions Answered by Mary Beth Krohel

1. 

  How did you find your path to parent-advocacy?   

My road to advocacy began at NEDA in 2004.  I attended their conference in Atlanta to begin my education in the field to assist my daughter with her battle.  At this conference, I was able to consult with many of the experts in the field including Dr. Walt Kaye and Craig Johnson.  I tended to gravitate to the people who were not blaming parents and acknowledged the genetic component of this illness.  I was very lucky to see this illness as a brain disorder from the onset. 

In addition, because of my professional background in the field of autism, I was able to see that the treatment of this illness by many was very similar to the early treatments in autism.  Isn’t it strange how history keeps repeating itself and we cannot easily learn from previous mistakes?

I felt that it was very important for parents like myself to be there to reflect and challenge the professionals in the field that I knew were at best useless and at times harmful to the patients and their families.

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

My initial “advocacy” was just being present at meetings, sharing our struggles and challenging the professionals to meet the actually needs of the patients and their families in addition to sharing and debating their theories and practices to train more professionals in the field.  For example, In 2007 I asked Dr. Thomas Insel, Director of the NIMH, to put in writing a medical description of ED’s and their treatment based on current medical knowledge.  When he did this, families were able to present this information to their family doctors, insurance companies etc.  It was news you could use!  Other families could then share this information to advocate in their local communities and spread the word!

Once my daughter was well on the road to recovery, I continued to attend meetings and began to question myself about how I could give back to the field in a meaningful way.  Since I had heard so many horror stories over the years from family members about their initial experiences when they approached their Primary Care Physicians about their child’s needs, I decided that some basic education of PCP’s and initial contact professionals, not trained in ED’s, would be beneficial.  

In 2007, I became a member of the Academy for Eating Disorders (AED) and “stimulated” the formation of the Medical Care Standards Task Force (MCSTF), which is now the Medical Care Standards Committee (MCSC).  I helped with the creation and distribution of the AED Guide to Medical Management: “Eating Disorders--Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.”  Over 100,000 printed copies and many more “e-copies” of this document have been distributed to ED professionals, related non eating disorder professionals, patients and family members around the world.  It has been translated into Spanish, French, Chinese and Portuguese.
This was also something that family advocates helped to distribute around the world!

With this success, Walt Kaye approached me about follow up and with his direction the FEAST Family Guide series was started which is another source of basic educational materials for families and the public that could be shared by family advocates globally.

3.   What change do you hope to affect? 

My goal is to help spread basic knowledge to the professionals that are the first people parents contact when faced with an ED in the family and give those parents some basic information to seek appropriate services.  In addition, my hope was that as PCP’s begin to request adequate services for the treatment of their patients, it would up the challenge of the experts in the field to become more accountable for their treatments and new training for future ED professionals.

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

I think the biggest challenge is the slow pace of change.  It takes many years to “turn the ship” from old practices that professionals hold on to before adopting the new practices that are truly cutting edge in the field.   This is not unique to this field but Mental Health seems to be much slower then general medicine.

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

* If you or your child’s friends believe there is a significant eating issue, trust yourself!  You know your child best!  Eating differences are ubiquitous in our culture.  Eating Disorders are serious medical illnesses!

* Educate yourself, act fast and hit it hard at the onset.  As we all know, embedded behavior is more difficult to change.  Respond as you would if your child was diagnosed with cancer or developed a heroin addiction.

* Form a family “TEAM” to fight this illness.  You will all need to support each other because this illness, like ALL illnesses, will affect all of you.  For example, we utilized something we called “My Night” which we had used as a family prior to an ED in the family.  Basically, any family member that was seriously struggling could ask for it to be their night.  This meant that the others would give them special treatment that evening … i.e.: they could pick the TV show to watch or game to play or others would serve them a treat etc.  Surprisingly, this activity was not used unless truly necessary and, at times, the ED child can help others, which can be very therapeutic.

* Trust your instincts and make sure you are a part of your child’s treatment.  You know what your child was like before the eating disorder. 

* Only allow your child to be treated by Qualified Experts in the field of Eating Disorders.  Unqualified professionals can be useless and even harmful.  If you are not seeing progress, ask for a review, determine an appropriate level of care and possibly seek treatment from more appropriate providers.  Sometimes, it is not the level of expertise of the provider but maybe just not the right match for the needs of your child and family.





Mary Beth Krohel is a Eating Disorder Advocate and parent. She is a founding member and Advisor of F.E.A.S.T., and  Chair of the F.E.A.S.T. Family Guide Task Force.

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