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a decade: that treatment is coming too late, delivered too weakly, coordinated so chaotically, supported too poorly, withdrawn too early, and exists outside the context of real life.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.