In 2007 I publicly shared my inner story, with the hope that if I helped one eating disorder sufferer know that they had an illness from which they could recover, this would make my own suffering worthwhile. So began the most fulfilling, contented, purposeful period of my life. I became an advocate in raising awareness of eating disorders.
I have learnt:
* Helping others helps myself.
* Sharing my story helps others feel it is okay, safe, to share their story (sometimes after many years of suffering in silence).
* Sharing my story helps people see that they, too, can recover.
* Getting involved, doing voluntary work, far surpasses the reward of any paid employment.
* In helping others, in pushing personal boundaries, a reward in personal growth always follows – in often surprising and delightful ways.
* Meeting like-minded people (researchers/sufferers/carers) who share the same passion for increasing awareness of eating disorders gives the feeling of belonging, of being connected, understood and accepted, and worthwhile. In short, meeting like-minded people is like being at home with a supportive family – in which there are no secrets and everything is shared.
* Attending conferences and support groups, listening to others, sharing with others – is like an injection of well-being, a booster against relapse.
* Evidence of life experience DOES count.
* Everybody can help. Including you.
* Everyone can make a difference. Alone, we may be a drop; together we create a wave.
* Passion cannot be learnt. It comes from within. Alone, we have one voice; together we have a shout.
* Eating disorders thrive in the dark; they thrive on secrets. Advocacy is about shining a light, speaking up, creating a din, giving eating disorders nowhere to hide.
* Advocacy is the bridge on which knowledge travels from researcher to treatment centres, from an evidence-base to a health provider, from an academic paper to a GP, from a non-profit eating disorder support organisation to families, from all of these, to you.
In 2009, at the NEDA conference in Minneapolis, I met Kitty Westin who has her own, deeply moving, inspiring and empowering advocacy story. We met again in Salzburg, at the AED conference the following year (where the sock of hope story began).
In her never-ending pursuit of advocacy and outreach, Kitty, together with Jillian Lampert, has authored guidelines for advocacy. These guidelines are intended as a tool kit to help those interested in advocacy begin new endeavors while also providing guidelines to support current activists in the field. The guidelines have been in development for some time, and are available on the AED web site.
Get involved. You will be so glad you did.