by Erica Husain, UK
1. How did you find your path to parent-advocacy
Without conscious effort! Grateful that anyone was out there to talk to, I joined the ATDT forum – not without a certain amount of trepidation and concern over apparent need for a pseudonym. “Hiding out” in public, from anyone and everyone I knew, was a leap of faith, but people here helped me. They didn’t want my money, they didn’t require me to sign up or own up to anything much more than a name and an email address, and they offered freely their experience and their confidence that I could do what they had already done, and they offered their cheer leading while I navigated the worst thing that had ever happened to my family. The worst not because it was the first time that a life had been threatened in it but because it was the first time that there wasn’t a safety net of clear professional understanding and prognosis, the first time that pity had not been the least that could be offered, and the first time that family members wanted to conceal the true nature of what we were dealing with for fear of what others might think. The alternative to finding ATDT was and is unthinkable, and the desire to offer something back to it, overwhelming.
I arrived as supplicant and found myself amongst friends – people I later met in person, or behind the scenes, with complete names and identifiable lives – and with these friends I became an advocate for the power of parents, and for “hope that is real” for real recovery from eating disorders.
2. What does your advocacy work consist of/ how do you define advocacy?
“Advocacy” involves a belief in what you are doing or have done, and a belief that others may benefit from it too; it acknowledges that what you know may be news to others.
Advocacy does not require a banner or for anyone to hold a megaphone; it can be a quiet word to a single other person as easily as a voice to a room full of people. Advocacy is offering a hand of friendship.
My advocacy work has been both anonymous and public; I have been a pseudonymous peer supporter on an anonymous forum, and I have stood on a stage to challenge an audience to acknowledge and seek change forlong-accepted injustice. But there is much that lies in between, and the most important part of advocacy may be in the building of community and in “showing up” and assisting, whenever and wherever there is opportunity.
3. What change do you hope to affect?
I hope for parents to feel that they can be a part of the whole picture – included in and useful to treatment, worthy of their own support systems,and a part of effecting change in attitude and understanding for the future. I also hope for better understanding of recovery – how it looks and what it means – and for full recovery to be the expected outcome for anyone with an eating disorder.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
Finding a seat at a table at which you are not already treated as equal maybe the biggest challenge. Earning a voice and a place can be hard work, and humility is a necessity.
5. Top 5 things you would share with a family facing a new diagnosis?
(In no particular order of importance):
Gather a supporting team and learn how to work with it.
Have confidence in full recovery – it can and does happen and it helps to believe that it will.
Learn all you can; make plans; don’t be afraid to tweak them as often as they need it.
Don’t be scared to talk about anything and everything with everyone who matters.
Keep compassion centre stage, always!