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.