I spent the early part of my working career in public policy. I always admired those with a passion for advocacy but I didn’t feel connected enough to a single cause. Low and behold Eating Disorders found me (via my daughter) and I had a reason to become passionate. Why? Because, for most of us, the system feels like it is working against us when we are trying to help our children. The fact that there is so much outdated and bad information about eating disorders still circulating strengthened my drive to be an advocate for change.
2. What does your advocacy work consist of/ how do you define advocacy?
Advocacy can be defined in many ways. I believe any time we can EDucate someone about the truth behind eating disorders we are advocating. My daughter has wanted to keep a low profile regarding her illness. I have respected that and kept my efforts “behind the scenes” sharing our story with family and close friends who live outside of our geographic area. I have asked them to financially support FEAST and other organizations on the forefront of treatment so to aid in the dissemination of the latest information on eating disorders. I have volunteered for some projects with FEAST, served as a peer mentor for parents whose children are undergoing treatment at UCSD, and I moderate a closed peer support group on Facebook. I also have joined in Twitter and email campaigns directed at companies who belittle the seriousness of eating disorders and websites who promote outdated or bad information.
I went to ICED in April 2015 and that experience opened my eyes to the potential to engage the treatment and research professionals in the field. I had many positive interactions about the benefits of being more inclusive of parents in the treatment process and I plan to dedicate a lot of time and effort into keeping those dialogues going.
3. What change do you hope to affect?
I hope to affect change in many areas. As a parent mentor, I hope to get other parents who find their way to the other side to stay connected to the ED world. So often parents want to just move on with their lives and run back to normalcy. Unfortunately this desire helps perpetuate the stigma associated with the illness. Parents of recovering/recovered sufferers can be the foot soldiers in the war against bad information. We can join together to EDucate the population at large. If every parent is willing to share their story with a half dozen close friends, there will be thousands of more EDucated people. As these close friends come into contact with other misinformed people, they can educate and this type of ripple effect can change public opinion.
I am also working hard to project the following message to the professional community of doctors, clinicians, and researchers: The exclusion of parents should be the rare exception in the treatment of eating disorders, regardless of the setting. Empowered, educated, valued parents can be the key to guiding a successful recovery for many sufferers.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
My biggest personal challenge is wanting to speak up more but also wanting to respect my family’s desire for privacy. This revolves around the continued stigma associated with eating disorders. As my daughter’s recovery has taken firmer hold, I have raised my voice and profile a little more. I am most frustrated by treatment centers and professionals that refuse to bring their treatment methods into the 21st century. If an oncologist was practicing 20-year-old medicine, patients would be outraged. We need to find a way to discredit the eating disorder professionals that continue to profess that families cause EDs or that patients shouldn’t be treated until they “want to get better.” We need primary care doctors and treatment providers to follow the evidence and read the current research on the genetics and neuroscience of eating disorders.
5. Top 5 things you would share with a family facing a new diagnosis?
- There is hope for recovery
- You have to be your child’s biggest advocate in the treatment process and you can/should question doctors and treatment professionals, many of whom are using outdated treatment modalities or have not been educated in recent advances.
- You did not cause the ED. Run away from anyone who tells you otherwise. Their words are poison to your family.
- Weight restoration is the critical first step AND you have the ability to re-feed your child. It may be the most difficult thing you have ever done, but there are thousands of parents and carers who can help you get through the process on forums like Around the Dinner Table and Eating Disorder Parent Support.
- The care team must present a unified front at all times in front of the eating disorder. The team of parents, doctors, therapists and dietitians must act as if they are always in agreement in the presence of the sufferer. Disagreements should be aired and settled behind closed doors.
Alec Rodney has an extensive background in public sector budgeting, fiscal and policy analysis and currently works part time in the family government benefits consulting business. He dedicates the majority of his time to volunteer work, serving as an adult leader and merit badge counselor in boy scouts and playing a number of support roles for various high school fundraising activities. Alec commits a substantial amount of time to supporting other parents whose children are being treated for eating disorders. As a member of the Parent Advisory Committee for the UCSD Eating Disorders Treatment Center he meets with dads groups, mentors parents one-on-one and advocates for treatment that includes greater parental involvement. Alec also moderates on Eating Disorder Parent Support, a closed Facebook Group for peer-to-peer carer support.