Monday, September 15, 2014

Advocacy Monday: Weight Stigma Awareness Week 2014- #WSAW2014


F.E.A.S.T. is proud to support BEDA’s Weight Stigma Awareness Week 2014 (#WSAW2014) September 22 – 26.  Together we are extending our outreach and creating awareness about the harms of weight bias and weight stigma – how it promotes disordered eating, how it impacts health care and how it leads to social injustice.

Throughout the week of September 22 – 26 you will find toolkits, blogs and interviews that support the theme Tools That Build Conversations: Initiating the Weight Stigma Talk on the BEDA website as well as among our social media activity.

Together we support the concept of asking for what you need and valuing your lived experience.  By learning how weight bias and weight stigma affect your interactions, you can learn the best ways to address the occurrences in your life.  We want to be part of building framework to promote the act of self advocacy in the presence of your doctors, your therapists, your movement experts, your nutritionists and your child’s school setting.

Look for #WSAW2014 on Twitter and visit the Weight Stigma Awareness 2014
Facebook and Google+ pages during the month of September to share in the discussion.  This matters to us all-  be part of the conversation!






Friday, September 5, 2014

Friday Reflection: Does 'Refeeding' Change Relationship

I worried refeeding would do lasting damage to our relationship.

I went from instinctually working to make the world a safe and easy place for my daughter to actively creating highly distressing circumstances that she was required to suffer through.  It felt horrible.   I was able to put it in context and think of the long game but, nothing about it feel right. Our days were fraught and tense. Sitting for meals took up most of our time and I would steel myself and murmur 'another bite...just one more...nope, you can't stop.... keep going" through raging and heartbreaking tears.  I struggled mightily to summon up 'compassionate drill sargent' but, more often than not, during meals I veered away from compassion and more towards automaton taskmaster.  I didn't talk much.  I didn't touch her other than to still a jiggling leg or stop a hand from flicking food off the plate.  I wanted to comfort her but that raised her ire and she lashed out physically. I couldn't really look at her and take it all in for fear of busting into tears,  so I just sat close prompting through the pain.   It felt at times like we were adversaries in battle. I tried to create points of closeness and connection to offset all the rest but nothing made things better. She was closed and gone.  She said she hated me.  Weird.  After 10 years of intense little kid love it was weird. weird. weird.

 I wanted her alive more than I wanted her to like me so I did not back down but I spent many a night lying awake thinking: What does it do to a kid when home doesn't feel like a safe place anymore?  What does it do to a kid when the people they love and trust most in the world are making them face their biggest fear....6x a day.  Does it leave a mark?   How can it not?

These two studies, one from the International Journal of Law and Psychiatry and one from the International Journal of Eating Disorders, suggest that that taking control and coaching them through the difficulty of eating will benefit our children and that we should not fear it will damage our relationships.

1.  How do parents of adolescent patients with anorexia nervosa interact with their child at mealtimes? A study of parental strategies used in the family meal session of family-based treatment
Findings: Despite associations with negativity from the adolescent, the use of food-related prompts (both verbal and physical) seems to be associated with increased eating. This indicates the potentially important role of parental control of eating. 

2.  Attitudes of patients with anorexia nervosa to compulsory treatment and coercion
Findings: The perception of coercion was moderated by relationships.  A striking result was that what mattered most to participants was not whether they had experienced restriction of freedom or choice, but the nature of their relationship with parents and mental health professionals.  Indeed, within a trusting relationship compulsion may be experienced as care.   


Our experience bears this out.  At then end of the day the bad stuff was left on the field and we ended with the same relationship we had before she became ill (albeit the teenage version which seems to include considerably more eye rolling).  She loved me before; she loves me now.  She trusted me before; she trusts me now.  The world felt safe before; it feels safe now.

Refeeding didn't 'change' our relationship; the 'illness' changed our relationship.  If anything it was refeeding that got us on the road back to the start.

Parents, what is your experience? How is your relationship now?










References:


1. White, H. J., Haycraft, E., Madden, S., Rhodes, P., Miskovic-Wheatley, J., Wallis, A., Kohn, M. and Meyer, C. (2014), How do parents of adolescent patients with anorexia nervosa interact with their child at mealtimes? A study of parental strategies used in the family meal session of family-based treatment. Int. J. Eat. Disord.. doi: 10.1002/eat.22328
2. Jacita O.A. Tan, Anne Stewart, Raymond Fitzpatrick, Tony Hope, Int J Law Psychiatry. 2010 January; 33(1): 13-19. doi: 10.1016/j.ijlp.2009.10.003 


Friday, August 29, 2014

Friday Reflections: Are We There Yet?

Guest Post by Axa Carnes


One of the most common questions that parents of children with eating disorders ask is: How much longer….? How much longer will I have to feed my child? How much longer will my child be ill with this wretched disorder? How much longer until the Ed voice goes away? Then, there is the question that most parents ask “How much longer until my child is back to normal?”.

The cruel reality of this illness is that nobody knows how long it will take a child to recover and neither the child nor the family will ever go back to what was considered as “normal” before the illness.

I asked myself and others “how much longer?” and “are we there yet?” when I was going through the terrifying stage one and then again when we seemed stuck in the never ending stage two. I continued wondering how much longer as my daughter experienced paralyzing social anxiety, exercise compulsion, weird phobias, PTSD, sensory integration disorder,  and started struggling in school. These were all issues that appeared for the first time in her life right after we had supposedly gotten rid of the eating disorder!

In the midst of the uncertainty, I chased promising pots of gold at the end of various rainbows. Among others, I ran after the reach the ideal target weight rainbow, the maintain weight for a certain period rainbow, and the treat the co-existing condition rainbow. Chasing the rainbow was necessary and brought improvement but expecting that “normal” would be found at the end of it,  left me disappointed and frustrated.

One day, I had enough and stopped chasing magical pots of gold at the end of rainbows.  I threw away the expectations for normal and the self-imposed deadlines for recovery.  I came to a point of acceptance that maybe “as is” was as good as it was ever going to get for my daughter and for us as a family. I accepted that she would never be “normal” like she was before the illness and I focused on the progress that she had made. A funny thing happened, *I* changed. I stopped waiting for the elusive “normal” and started loving and accepting my child as she was at that point. I don’t know that things changed overnight, but since I wasn’t ticking off days in the calendar any longer, time frames didn’t  matter to me at that point.

When I found my rest in what I had at that moment, not at what I wanted to have, things got much better. I stopped putting pressure, mostly unspoken but felt nonetheless, on my daughter to be normal and to get over “it”. This new normal wasn’t bad, it was just different. My child was not a little girl any longer but a beautiful teenager who had emerged as a warrior with battle scars to prove that she had battled a deadly illness. My husband and I had grayer hair and more wrinkles as the result of  many sleepless nights, and hours of worry over our daughter. My younger son was wiser with an awareness of vulnerability and risk, that a pre-teen should not have at that age. Our family was normal in the way that only families who have experienced catastrophic illness can be normal.

I have found that this new normal both requires and allows me to live thankful for every little thing that my children do that reflects our familial bond and all that we have conquered together. When my daughter kisses me or snuggles up to me, my heart soars with joy. When I hear hearty laughter between my son and daughter, I feel warm inside.  When my husband and I stand together as partners who will not be manipulated by our children, they understand that we have something unique that was born out of a relationship tested by fire in the midst of crisis.

I now live in the moment with one foot placed in that fun state of living life with abandonment and one foot firmly planted in a reality that demands caution. I indulge myself on occasional glances towards the past that bring a small twinge of pain but that are necessary so that I can keep a keen eye towards the future.





Axa Carnes is a past F.E.A.S.T. Board Director and has been a member of Around the Dinner Table since 2007. Axa's daughter was diagnosed at 9, refed at home, weight restored by 11 and has now been in recovery for 6 years.

Thursday, August 28, 2014

Guest Post: Luck, Love and Good Treatment

 by Dr. Mark Warren  MD, MPH, FAED, CEO, Medical Director


 "...if your Child is not getting well it is because the treatment 
is failing, not you" 


I’ve had the privilege of working in the eating disorder field for many years. To come to this work as a recovered professional has been an extraordinarily powerful and wonderful experience. As a male who has recovered from an eating disorder there are ways in which I know my experience has been both very different and very much the same as a woman in a similar situation. I am part of a group of recovered professionals organized through The Academy for Eating Disorders. There are only two men in this group at this time. So I’ve had the privilege of hearing from many women, and a few men, about their recovery, their experience, and what it is like to have had an eating disorder during the 60s and 70s, when treatment was not available. I’ve also been able to tell my story publicly, which has been very positive and healing for me.


My eating disorder itself was anorexia and followed what I would consider to be a fairly classic pattern. It started in my teens, I was restrictive in food choice and amount, ran excessively for the purpose of losing weight, weighed myself constantly, was obsessed with food, body, size and shape and found myself fairly isolated from the world around me. I think the thing that was most powerful as I recall this period of time was the extraordinary experience of invisibility. As a man with an eating disorder my illness was literally unseen by every single person I came into contact with - including myself.


For me, invisibility was a double edged sword, both making it harder to be seen and making it easier to avoid stigma once recovered. For males struggling with eating disorders this dual nature remains a dominant concern. A man with an eating disorder may be less likely to be remarked upon, have less insight into their own behaviors, misinterpret eating disordered behaviors and medical complications and may be generally ignored by peers, family, and the medical profession. This adds complicating factors for a man to seek treatment, obtain treatment, and find a supportive community to help them stay in recovery. I was fortunate that I fell in love with a woman (my wife, Lisa) who saw my disorder for what it was, who re-fed me, and watches over me to this day. Many people, men and women alike, are not so fortunate.

For parents, it is incredibly easy to not see your child’s ED till it has been present for a while.  As happened to me, the world around you ignores the disorder, your child is unaware they are ill, and secrets are at the core of the illness.  And when you speak to a professional it is likely they will minimize the disorder or recommend a treatment that does not work.  It is so important to remember that parents cannot cause an ED.  And if your child is not getting well it is because the treatment is failing, not you.  Only good treatment produces good results.  Love alone is not enough.  One thing I feel I know for certain is that if my own parents had known of my disorder they would have gotten me into FBT as soon as possible and I would have hated it but I also would have gotten better.  Many years later, when I first discussed my ED history with my mother her first question was did she cause it.  And I knew for certain she did not.  And I will always know that she would have and could have helped me if FBT had existed then.  Your child’s greatest fortune is the loving way that FBT can bring your family together for the health of your child. 

The crucial challenge for the field is that we know we can’t depend on luck and love to recover. Luck is a great thing to have and love is even better. Treatment, however, is a variable we can control. Our task as families and professionals is to continue to create an environment so that good treatment is available to all so that all individuals who are suffering from an eating disorder can have full and joyful lives.





Mark Warren, M.D., is the medical director of The Emily Program. From 2006-2014, he served as medical director and co-founder of the Cleveland Center for Eating Disorders, a comprehensive eating disorder treatment program. His practice focuses on bringing the most up-to-date research into evidence-based care.  Dr. Warren co-chairs the Academy of Eating Disorders Presidential Task Force for Medical Care and serves on the FEAST Medical Advisory Board and the London-based Succeed Foundation Medical Advisory Board. He has presented extensively at the International Conference on Eating Disorders, The Renfrew Foundation and the Multidisciplinary Eating Disorder Association.

Monday, August 25, 2014

Advocacy Monday: Closing the Awareness Gap

As you know, F.E.A.S.T. is honoured to be partnering with EDC and others for the inaugural Mothers and Others March Against Eating Disorders on September 30, 2014.

Advocacy can be intimidating.  I am never quite sure I am doing it 'right'.....or even, what it is I am supposed to be doing.  Influencing public policy and resource allocation decisions seems somehow daunting.....so I don't think about it like that. I start smaller: I think about closing the awareness gap.  I think about all I didn't know about eating disorders before our fated diagnosis;  I think about how 'wrong' I had it before our fated diagnosis......and then I think about what I know now.  That is where I begin my advocacy.

What we know is tremendous and the gap between what we know and what needs to be known by legislators (and the general public) is real and frustrating.   Parents and caregivers are in a unique position to identify changes needed simply by showing  up and telling our stories. In each of our stories there are lessons.  

Participating in the March and Lobby Day is an opportunity to close the awareness gap.




Links:
 #MarchAgainstED-  Updates on March Information and Activity will be posted weekly.
A Parent's experience of Lobby Day
A little perspective on how the treatment landscape has changed over the last 40+ years.  Caregivers are now part of the equation in ways we have not been in the past.
 A 'Tipping Point' takeaway:  Messages spread like viruses and operate on the '80/20" principle; whereby in any given situation roughly 80% of 'message spreading' work is done by 20% of the participants.  We can be agents of change.