To beat ‘Ed’, we need to come out and shout!

To beat ‘Ed’, we need to come out and shout!

I kept my eating disorder a secret for decades, fearing stigma and shame if people knew about it. I feared this re-action among family, friends and in the work place. Everywhere! But keeping the illness under wrap prolonged my suffering. ‘Ed’ thrives on secrecy and does all it can to persuade us to keep quiet. To beat ‘Ed’, we need to shout! We need  to encourage people with eating disorders to ‘come out’ and share their experience – because doing so will challenge the power of ‘Ed and cause it to crumble. Let’s all come out, acknowledge our illness, show we are not scared of it, or ashamed of it, let’s give it nowhere to hide. To do so will do more than help ourselves; we will help others, too.

‘Coming out’ in 2007 as a sufferer of an eating disorder opened up a whole new world for me. Life is enriched in countless, exciting and fulfilling ways.

Above all, becoming involved in eating disorder advocacy has enabled me to know, respect and love my self (no ‘Ed’ in sight!). The benefits go on and on – for instance, advocacy work, which requires confronting ‘Ed’ head on, doubles as a powerful insulation against relapse prevention. Attending conferences, listening to researchers describe their work, always provide light bulb moments – of increased understanding about the illness, the behaviours and symptoms of which were not the real me. What liberation!

Don’t be afraid. The more we share, the more we rock, and shake free, Ed’s hold on innocent lives.

Through coming out, amazing people have become part of my support network. They include Jane Cawley, Maudsley Parents co-founder and chair.

Jane was of great assistance with research in the writing of My Kid is Back, and we met when I travelled from Australia to the USA  to attend my first NEDA eating disorder conference. Jane is both a treasured friend and research colleague.

Jane understands the importance of speaking up about ‘Ed’ and of providing venues where people with eating disorders can contribute to, and be enriched by, the current knowledge in the eating disorder field. Jane’s view:

Clinicians, researchers, patients, parents: All these tribes have their own languages. With an open and curious attitude on all sides we can all learn a lot from each other…. It seems to me that this sort of exchange is much needed. That said, maybe there’s a place for all kinds of meetings, groups, and conferences–together, separate, in varying combinations. For what it is worth, anyone who signs up for a Maudsley Parents conference can come. Since FBT is our main focus and the patients are usually kids we haven’t had bunches of them. But a few have come and it’s been really great for other parents to hear from a kid on her way to recovery. People who have recovered from eating disorders have fought hard to win back their own voices. So why not use them? Other sufferers will benefit, and so will the rest of us.

– Jane Cawley (Cofounder and Chair of Maudsley Parents)

* Maudsley Parents today is running a half-day conference in Madison, Wisconsin, for families to learn about eating disorders. Check out the Maudsley Parents site for future conferences, which are held regularly across the States to explore the current state of treatment as well as new directions and hope for the future. Who should attend? Treatment providers, families, friends and others involved in outreach and advocacy.  For more information, email: contact@maudsleyparents.org