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You aren’t what I expected

by Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director

Eating disorders are truly dreadful brain disorders. There are a range of these conditions we call “eating disorders” and they are all, every one, devastating diagnoses. Even in the best of circumstances — early intervention, skilled up parents, access to care, experienced providers — these insidious disorders can disrupt, detour, and kill.

Research on what helps is still scattered and weak. Treatment is scattered and spotty, and often nonexistent.

Those who have lost their loved ones to permanent disability, estrangement, or death suffer deeply in a world that did not help them enough when it started, and continues to fail to understand after the damage is done. Those whose loved ones have found their way to good health again are often shattered, permanently altered, by the experience of fighting a disorder they never expected and struggled to understand.

Families have to fight not just the disorder but health systems and community and others around the patient to advocate for necessary intervention and support. All this pain leaves us tender. Sometimes bitter. Often: unrelievedly angry.

It can burrow us down into our own point of view to where we only see our own experience. We feel invalidated by the lack of understanding around us and the unfairness. We feel unlistened to, and we feel protective of those out there we feel are like we were: we want to save them. We continue to defend and fight the battle that got us where we are, and we brook no dissent.

We become warrior saviors for the people we were before, for the innocence and the unknowing of those who have not yet come this way.

I have seen, and I have felt, tremendous and unrelenting pain in our community. That pain has led to tremendous improvement in the field as people have worked for personal and systemic change. That pain has also snarled and shredded relationships and torn down efforts that could have been positive: through pettiness and drama and exhaustion.

I became an activist, an advocate for fellow parents, to prevent the suffering of other families; we all do. It began as a quest to help those very much like me, who had the same struggles: same diagnosis, same lack of access to evidence-based care, same flawed health system, same dissent from the mainstream view, same gender, same stage of illness, same outcome. Over time my point of view has been informed by a broader scope: the range of diagnoses, the spectrum of outcomes, the vast landscape geographically and culturally and personally that these disorders affect. My view and my heart have been expanded.

My experience has been a connecting one, despite several times when divisive forces have tried to deflect me and isolate me. It has happened in the past and will happen again in the future. I keep showing up. I keep learning and increasing my connections and my compassion — especially for my critics. I have great sympathy for those who would see me as their enemy because I know it isn’t really about me. That sympathy battles with my genuine passion to connect and gather everyone I can to build genuine collaborations that will move the field forward, but connection always wins.

Connection always wins

Each of us individually really can’t have the will and the voice that gathering together can do. Each of us can be dividers or we can be connectors and I choose the latter. That means criticism, and locking arms against the temptation to tear down and the temptation to make it about any one of us or any one cause within our many causes in this field.

I have developed a thick skin, over time, of necessity. I “keep going.” That may leave an impression that I am fiercer than in reality.

I once met a mum in London who had only known me online, and through reading my books. After a minute of knowing me in person she laughed out loud, and Charlotte had a lovely booming laugh, and declared me not at all what she expected.

“What did you expect?” I asked.

“Meryl Streep in The Devil Wears Prada.”

Which made ME join her laughter. I’m not at all intimidating, apparently, in person. I may need to upgrade my shoes… We’re all just individual human beings in a world that would love to divide us, often in the kind of pain that blinds and terrifies, and is even cruel. We have SO MUCH work to do as a field and I still continue to believe that we can’t afford to do either of these things:

  • Lose courage as we demand progress together in this field
  • Make it personal, as villains or as heroes
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  1. Dave Dempsey

    Thank you Laura. You hit the nail on the head with. “Those whose loved ones have found their way to good health again are often shattered, permanently altered, by the experience of fighting a disorder they never expected and struggled to understand.“.
    Our daughter and our family are such a good place compared to a year ago and mores so from four years ago when this black web grabbed entangled itself in our daughters brain. She is happy now and for the most part remains at a healthy weight but still struggles with ingrained behaviors toward certain foods and as parents we are still working through “trust”. It’s painfully obvious that we have more trust for our 14 y/o son then we don our 16 y/o daughter who had(has) AN. For us it was the combo of accepting the continually increasing Goal weights and low does meds that got our daughter out of the woods. Thank God also for people like you that fight the fight continually while many of us look forward to the day where we have nothing to do with this disease – someday because of people like you, that may become a reality in the future:). May Hid bless you in your journey and may you be guided and strengthened by the Holy Spirit!

  2. Claire

    Thank you for sharing. I do identify with what you wrote. This illness is horrible and connections are so important to find compassion and support

  3. Doreen

    Thank you for a brilliant read. Been alone with ed (Anorexia) since my daughter was 14 and will turn 38 this year. She has certainly has lost all hope of ever getting better. She was just a couple of hundred hours away for getting her Bachelor of Science in Nursing and lost all hope of ever being a nurse.

    Again thank you
    God Bless
    From Canada

  4. Laura Lyster-Mensh

    Agreeing with Doreen. Recovery is possible at every age and every stage. Holding hope, even when there isn’t any other active role, is hard but also a natural and special role for parents. Parents often are the only ones to hold that hope throughout, despite ups and downs and despite the disorder robbing the person of their own hope.

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