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.
- 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.
- 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.
- 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.
- 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 Expertsin 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.