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What do we want? When do we want it?

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

For me, being an eating disorder advocate isn’t about feeling good. In fact, it doesn’t always feel good at all.

I understand we have to rally people with positive messaging and build awareness. But let’s not forget:

It’s about bringing change and progress. I know that makes me a bore, and it isn’t as attractive as wearing certain colors and talking about loving our bodies and smashing scales. But I say there must be a point, and there have to be real goals.

Early Diagnosis

Eating disorders aren’t that subtle. They are pretty obvious if we know what we’re looking for. What blocks that looking, and seeing, is a society that normalizes disordered eating, exercise, and body image.

Early Intervention

It’s like cancer or other progressive health issues: catch it early or it is harder to treat.

Effective Treatment

It isn’t enough to just find a specialist. Those with eating disorders need treatment that is established as effective and safe. That’s called “evidence-based.”

Safe Environment

Eating disorder interventions don’t happen in a vacuum. The family, including siblings and extended relatives, and school and the community need to be equipped with and surrounded by awareness and recovery-oriented support and language. No dieting. No body shaming. Acceptance of body diversity. Joyful movement. Community connection. Stable and nurturing homes. Caregivers with the time and community support to focus on recovery.

Access to Treatment

Knowing what treatment one needs isn’t enough either: it needs to be available immediately, and in your community, affordably, at will.

Well-provisioned Treatment

Treatment that is too weak, poorly trained, lasts for only a short time, or isn’t coordinated with other levels of care is not acceptable.

Family and Community Support

Eating disorders isolate and alienate affected people from family, friends, and community. Successful recovery without that support is not just difficult it is often impossible. No one with an eating disorder should have to maintain that journey with only themselves and their professional team. Family, friends, and community need to step up.

All the above is doable. These are not rainbows and unicorn dreams. Eating disorders are one of the most treatable brain disorders, and one of the easiest to diagnose. Diagnosis and treatment do not require expensive equipment or drugs. We know what to do, and we know when to do it. We’re just not doing it. That’s where “awareness” needs to be.


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  1. Kaz

    All I can say is 4 years on and why isnt it this simple ???

    our family have supported my d throughout her illness
    We were onto it early refeeding etc
    Our initial GP’s,many phycologists and now (after finally my d getting SO ill and needing specialised ED hospital IP admittance) and now OP care
    We are still left out of her treatment (her choice)
    It’s ridiculous
    My d illness shouldn’t have lasted this long and I feel that in the whole process the parents hands are tied and the many specialists make a fortune by our kids staying ill
    But at the same time we need these specialists as the illness tricks their brains (as we care givers all know)
    IMO I think the system fails the patient and the carers
    It’s a very frustrating, tiring, expensive, and complicated complex journey for all
    And I guess it’s NOT as simple as it seems ??? Is it ?

    Our entire family will be forever damaged by my d experience/journey

    My own recent advanced cancer dx has been serious but not so complicated although just as scarey for us all
    My professionals seem to have a plan and I feel confident in the care I’m getting

    Unlike my d when we never know from one week to the next wether she is coming or going it’s up and down and back and forth
    Actually probably on a bit of a par with my own illness atm
    But for some reason I feel more confident with my treatment
    Maybe it’s just because it’s mental illness that it’s so very complicated ??

    There needs to be more $$ and research and treatment centres (here in Australia at any rate)
    It’s discraceful that we didnt get the professional help that my d needed immediately (there was a 6 month waitlist) she was nearly dead by this stage
    I guess that’s the difference with my dx, I was immediately into treatment

    I guess It’s up to the government to spend the money in this area

    • Victoria Schonwald

      I am so sorry to hear of this experience for you. I am an ED dietitian in NZ and the funding here is worse than Australia, but we do have similar issues. Unskilled and unwilling to learn staff in the public system. I have found there is lots of stigma with ED within health professionals, and I am thinking of creating an education workshop for health professionals to teach how to treat a patient/ client with an ED. It is very very frustrating, and I again I am so sorry that this is your experience. It should not be like that at all.

  2. Sarah Rowland NZEDCS

    Fantastic article! I too am in New Zealand Victoria Schofield and part of a support kiwi support group. We have so many shared carer poor treatment experiences of their loved ones in the public system. Change is an urgent and essential need..advocacy is almost a dirty word here though sadly.

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