A blog from Laura Lyster-Mensh, an award-winning American writer, healthcare advocate, consultant, writer, and podcaster
I could write you a long essay on the recent BEDA/NEDA conference from the perspective of an eating disorder advocate. I have plenty to say about eating disorder science and practice and outreach.
But I’d like to say a few words from a perspective I don’t always make a part of my eating disorder advocacy but is more familiar and important in my life. I am a mixed-race 50-something raised by social activists. My family’s activism was around race and poverty and war. I grew up with a sign in my hand and a protest song in my ears.
Despite all the work of people like my parents, racism and war and economic inequality are still with us. But because of their efforts and those of many others, things are improved. Without their dogged attention to righting wrongs and helping others the world would be a worse place, and I would not be an eating disorder advocate. It was their example of showing up and speaking up that help me know when I need to do so as well. When I chose to be an eating disorder advocate I had already been an activist on other issues. I am a veteran of many campaigns and initiatives and times of change.
When I think of the BEDA conference in Brooklyn I think of my parents. I think of the lessons I learned from them and from those around me growing up. From them I absorbed that change is hard. Change is challenging and uncomfortable. Change sometimes feels intolerable, and yet, looking back, it was necessary distress.
Change is messy. It isn’t easy to understand, at times, what side of an issue to make our own, and there are times when we think we’re doing the right thing but learn that we were wrong. We learn we messed up or were blind and need to acknowledge that. We learn that people were angry at us, feared us, or misunderstood us and that it is our job – not theirs – to bridge those gaps.
The worst insult, in a community for whom caring and feelings are so important, is to be told we are insensitive. But what group would also have the skills – in fact be experts at TEACHING the skills – of listening? And behavior change.
For many, it was probably new and off-putting to hear language that was not only unfamiliar but not meant to comfort us. The vocabulary of change is rarely familar. Hearing the words privilege and intersectionality used over and over probably isn’t home ground for those whose focus and advocacy have been on eating disorders. Some have not been paying attention to growing discontent and frustration even within the field: and that’s okay. Pretty much everyone who uses those words now was once someone who found those ideas uncomfortable. But change does not usually come about in comfortable places. We know this. WE know this as well as any one.
As someone who has fairly often been seen as “angry” and “extreme” and “single-minded” I am very familiar with the feeling of making people uncomfortable just by showing up. Being in opposition to the mainstream, no matter how politely and patiently and reasonably, makes people uncomfortable. I am mixed-race: I have been making people confront their own discomfort from the cradle on. Occasionally, it genuinely makes me angry to be marginalized and misunderstood for my positions on issues and the long-delayed justice for issues that matter in this field. But show one bit of my frustration or create one conversation that starts with my position rather than apologizes for it and I can be dismissed. And that is familiar, too.
My heart was glad at the BEDA/NEDA conference. I didn’t agree with everything and I didn’t feel included or valued by everyone. But I felt at home in a way that I rarely do at eating disorder events not because everything that came off the podium agreed with me but because genuine discussion and argument and dissent were welcome. People took risks, and engaged. No one professed to be perfect and all that was asked of us was to be ourselves, not to hew to a view or ideology. Just to be ourselves and listen to others.
I felt at home at the BEDA/NEDA conference this year because I believe collaboration isn’t just kumbaya and holding hands but facing differences in the same room and making progress. We need change and improvement in our field. We need to not be rooms full of people who think, act, make our money, look, protect our egos, feel valued, and fear things the same way.
The aspirations and the humility of this BEDA/NEDA collaboration were, for me, like family. And, like family, we learn from and gain from the experience. Nobody gets to go off and sulk, or nurse injuries, or gloat for long in a healthy family. For the first time I have a lot of hope that we can be that family.
I applaud and celebrate what happened in Brooklyn. I look forward to the next opportunity!
Laura Collins Lyster-Mensh, M.S.
Laura continues her mission with Circum Mensam LLC. She serves as a trusted advisor for clinics and treatment providers and offers her deep knowledge of the field from a parent perspective to educational and advocacy organizations. Starting in 2017 Laura is also providing services for parents as well: through private consultations and Starfish Packages.
Much has changed and improved in the past decade when it comes to eating disorders. Patients are being diagnosed earlier, getting into effective care more often, and recovering faster and more lastingly. But the rapid changes have not reached most families yet. Retraining and changing the way treatment is provided takes time and courage and the challenging of long-held myths. Laura truly believes that parents and treatment providers are doing the best they know how, but that we all can do better if we know how.
- Founder, Current Outreach Director, past Executive and Policy Director for F.E.A.S.T., the only international parent-led parent-focused eating disorder advocacy group in the world.
- Co-Founder of Charlotte’s Helix, a UK DNA project to contribute to AN25K, a search for the genetic underpinning of eating disorders vulnerability
- Awarded Meehan/Hartley Award for Public Service and/or Advocacy by the Academy for Eating Disorders
- Experienced peer mentor alongside parents since 2003
- Academy for Eating Disorders member and volunteer
- M.S. in Environmental Conservation
- Popular international speaker: US, Australia, Canada, Austria
- Author of two books for parents about eating disorder treatment
- Longstanding advocate for families
- Organizer and host of two international eating disorder conferences
- Huffington Post Blogger
- F.E.A.S.T.’s Family Guides editorial team
- Supporter of eating disorder clinicians and clinics around the world offering family-inclusive and effective treatment and saving lives