All right, so I was a bit depressing in yesterday's post. I even committed the great sin of casting doubt on the long-term prognosis for Family-Based Maudsley. I used broad numbers that are anecdotal, which wasn't fair either. So, if you can bear it, the rest of the story.
I'm weary of parents coming back to the ATDT community and my inbox whispering about something that needs to be discussed more openly: the need to remain involved and vigilant during the transition to independent living. There is an acute sense of "what did I do wrong?" when a loved one starts to relapse that needs to be answered.
It also needs to be said that the rates of relapse for those in traditional treatment are well-known: greater than 2/3. The numbers of people I know who have kept a hands-off this is between you and your therapist and don't you want to finish your salad, dear, approach not only see their loved ones relapse it is considered normal and expected! We can't even call it "relapsing" for most patients because they've never actually gained full health: maintained healthy weight and behaviors and thinking for more than brief periods.
I really see a problem out there where families who HAVE done all they can, and well, and worked with outstanding clinicians, drop it all at 17 or 18 during Freshman Orientation. I may be more sensitive to this because I did it myself, but still, the pattern is really common.
I am calling on all of us to "snap out of it." Let's lose the fiction that the ED predisposition goes away with recovery. It doesn't. It certainly seems to lessen and have less control the more time passes in good health but a big factor in that is the habit and structure of living without ED.
Two, to be a bit stronger against the "normal" drumbeat. It isn't normal for someone who has a history of an eating disorder to go off to the greatest transition of their young lives, the greatest exposure to disordered thinking and eating, the off-the-cliff change from family meals to dining hall, an open spigot of alcohol, new routines, mountains of decisions, social uncertainty, and academic competition - without hearing the Siren call.
Three, there IS more most families could be doing but we're afraid to do it. We feel pressured, unsupported, obnoxious, and disloyal - but it may still be the right thing to do. We wait and wonder and worry. I'm saying that having that family-centered approach to treatment and maintenance can and probably SHOULD extend to the college years and we need to give one another permission to do it.
I'll also confess to this, because I know I'm not alone in it and it may comfort others to hear it: I had a bit of a chip on my shoulder. I wanted people to look favorably on our family's approach and to prove that we were not, in fact, overbearing and enmeshed - that our involvement in her treatment had been temporary and that we - more than other families - were able to let go and watch her fly because we were so wonderful. I confess to wanting to be the good, compliant mother.
Dumb hubris. Dumb hubris made easier because we got so little encouragement from other parents or professionals to be more proactive. I'm just one mom out here but I want to be the fellow parent saying to you that your instincts matter and it is okay, if you see fit, to take a more involved role and even to say no. It is okay to go down to school for a visit and, seeing signs of concern, withdraw your loved one kicking and screaming. It is okay to have a contract in place, to require doctor checks and verifiable therapist visits, to require calls home, visits, meeting with RA - whatever YOU need to feel fully confident.
Here's the good news. I see really great results from families who do take a more active role and put protections in place and those who step in without ado as needed. These are the patients who struggle a bit and then get back on track. These are the families who can remain confident and supportive of and the expected wobbles don't turn into full scale protracted relapse.