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A life worth living: parents asked to define recovery

There was exciting news on the eating disorder research front this past week: did you catch it?

In an article published in the International Journal of Eating Disorders on November 19, “Parents know best: Caregiver Perspectives on eating disorder recovery,” the researchers surveyed parents around the world for our definition of recovery and our experiences with our own children’s outcomes.

The response surprised the researchers. It was enthusiastic, passionate, generous… and unsatisfied. This didn’t surprise us at F.E.A.S.T, though!

We are not surprised that parents defined full recovery differently than research usually does with weight targets and eating symptoms. Parents defined full recovery in ways that only parents, perhaps, would truly see: someone free of the compulsions and behaviors of an eating disorder, eating normally, behaving normally, feeling normal, but they didn’t stop there. Parents, who have known the person all their life, saw full recovery as “a life worth living.” Not just free of the eating disorder but living their own full and authentic life.

Parents are not built to settle for limping along without need for medical or psychiatric intervention. Parents also know instinctively, and this was supported by the research as well, that full recovery more often leads to lasting recovery. Parents who are made to settle for less than that know that it isn’t enough, that being recovered is not just being discharged from treatment.

None of this surprises me because at F.E.A.S.T. our community has been saying these things for a decade: that treatment is coming too late, delivered too weakly, coordinated so chaotically, supported too poorly, withdrawn too early, and exists outside the context of real life. Parents have been saying that forever, and despite there being better treatments — in theory — those interventions are not reaching or not strong enough for real families in our real worlds.

Parents are angry and scared and confused.

Much has been made of the low recovery rates for the survey responders. I’d like to offer some context on that “21% recovery rate” being cited. That was for full recovery as defined by parents, and that was from the survey population, not the full parent population.

The 21% was for the parents reachable right now by forums and social media. And that is a community I know well: it is my own address book, mailing lists, and community. What isn’t in that study population are the thousands of families who have passed through and moved on. And millions more who never even found the active and rich network of English-speaking internet-savvy families who can be easily reached in 2019. Families whose affected people have recovered usually move on: the experience of caring for an eating disorder diagnosis is frightening and exhausting and regardless of outcome often something people want to leave behind as soon as possible. I have many, many apology letters on my hard drive from parents who were once deeply involved with our community who simply couldn’t bear to see one more family suffering, couldn’t continue to be reminded of the exhaustion and the fear for their children’s life. Generations of mentors on our forums turned it over to newer families and have gone on to other interests and topics. If we were able to access a true random sampling of that population I suspect we’d see very different numbers on recovery rates, but the very same definition of full recovery.

Another population of parents have left, and those are the ones who I most hope see this research. They believed in full recovery but felt alienated by the rah-rah you can do it language of online communication. They moved on feeling judged and condescended to. They too could tell the stories of healthcare providers who failed to give early warning, partners who couldn’t manage to align for treatment, mixed messages from members of the team, co-morbid issues that disrupted treatment, the needs of other siblings or grandparents, financial constraints, language difficulties, parental illness, and uncontrollable symptoms. The odds are stacked against families from the start: the world is not yet ready to help us when our kids get ill. Only the most fortunate get appropriate care, and the even more fortunate are able to draw a full circle to contain the disorder in the real world. All families want recovery and would do everything they could to save their child, but parents can’t do it alone. If we don’t recognize that alienation, we risk harming families not just by the ravages of the eating disorder but by driving away the families who need support and feeling heard the most.

I hope those families see this research and feel heard and included.

I also hope the one-fifth of our community who remain after recovery: who mentor and support and cheer on and share resources and meet for coffee and who support what F.E.A.S.T. is doing know how appreciated you are. You stay and fight for other families in your way: you do your bit to empower others and show by example that recovery is possible and why. You are needed, you are appreciated.

And the many longtime members of the community who remain after your own loved ones have been lost to permanent estrangement or death. And those for whom the illness remains after many years and interventions, alongside your steadfast hope: you are so appreciated. Your participation in the study and in the community and as my mentors and teachers is vital and never ever taken for granted.

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  1. Wendy Pearson

    What an amazingly inclusive article. So many points you made hit home. My adult daughter is still working on recovery and feels she may never claim she is recovered but is ok with that…and I am too as I have given her ownership of this, being her cheerleader rather than her caregiver.

    Thank you so much.

  2. Therese Waterhous

    Great article Laura. So many truths. One I appreciate is that those of us who have lived with an ED in our homes and those who have donbe work for FEAST have known this all along…recovery never was just about weight gain and eating 3 squares a day. Much more. Nice to see it in a study. That said I feel like it is research that comes to conclusions those of us more practical have come to by doing the work, either within our families or as providers working with other families. The “new” research now is pointing to using FBT techniques with adults (TBT-S) or addressing behaviors long after weight restoration has happened ( becoming truly flexible around eating and foods, engaging in joy) yet so many parents and others have reached these conclusions long before now. This is why this paper is important. It shows the research community that wisdom is out there for the taking, from sources not usually sought after.

  3. Blanca

    I don’t speak inglish like you guys so I’m going to try my best, this is a very, very difficult nonsense illness, very sad I’m going throu that now with my 13 years old daughter 😥😥 I’m praying for all the adolescents with anorexia and for those parents also, we need a lot of patient, is very hard to get help, thank to all the people for the support F.E.A.S.T.for thinking of us, hopefully you guys can read and understand my inglish, I wish there was something In Spanish so I can u understand it better, but I really appreciate the help.

  4. Jacqui Mann

    Lots I recognise in this, daughter is much improved, describes herself as recovered but Im not sure she is, she is stable at the bottom end of healthy weight, improved in behaviours but so much about her is taught, restricted, full of anxiety, fearful and lots of learnt behaviours that keep the world ticking over, cos she wants it to be alright. But any slight pressure, was Uni, now new job and I see the flaws. Its sad but its a tricky line to tread ‘noticing’, but not advising, supporting without overstepping….so hard and in UK, poor access to help even if she asked. I hate being mum her safe place but also her nemesis.

  5. Val

    As a mother of a “recovered” daughter since 2015, I rarely check in here any longer. My daughter is thriving in health and in life, but there always lingers a small portion of ED, so I remain on the FEAST mailing list and do come back once in awhile. As much as I want to forget the horrible, terrible years, I also believe it is important to never forget, whether for my own daughter, or in case I can help someone else’s family. FEAST is incredibly important, and was such a support to me once I found it. Keep up the good work. Can you put up an article, or point me to it if it exists, on how to approach others or how to open conversations on ED. What should be a stranger’s role when witnessing a child, or even an adult, that seems in the grips of the terrible world of ED?

    • Laura

      Dear Val, so lovely to hear from you, and so glad you are out there on the lookout to help others. I’m sure we all have our own favorites in terms of resources, but it really depends on the situation. One rule I have is I do not approach sufferers themselves. If there is a family member, or someone who knows them well, or if in a work situation perhaps HR, but the nature of an eating disorder is to make the person feel “fine” and to be offended or on guard. Alienating the person without having a way to be of real help isn’t helpful, I don’t think. If I’ve only got one shot, I go for a copy of the Nine Truths. It’s one page, well-sourced, authoritative, and clear. If I think the person will be eager to know more, I’d go for either one of the F.E.A.S.T. Family Guides, or the AED’s Purple book. But if all I’ve got is a conversation, I just go personal and warm: “I had this experience and I wish someone had mentioned that eating disorders are dangerous but treatable, and there is new science to help”

  6. Diana

    I read the above. I too am a mom of a ED person in recovery. She is not totally there but working hard to get there. Where can i find the Nine Truths mentioned by you Laura? Or can you send them to me using my email? Thanks, Diana

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