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
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.
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.
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.
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?
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?
Get out of denial ASAP.
Learn as much as possible as fast as you can.
Connect with other families living with these deadly brain illnesses.
Practice EXTREME Self-Care!
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