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The setting sun, roll credits

Posted Jan 03 2010 2:47pm
There is so much a parent needs to learn when a loved one is diagnosed with an eating disorder. The beginning is SO HARD and there is so much information and fear and hope and readjustment. But here's a detail for parents that needs to be stated up front and repeated even if you don't want to hear it and it scares you: this isn't a movie. In a movie, the protagonists struggle and evil is vanquished and the credits roll. In real life relapse is always a risk and there is nothing ED wants more than to outlast your energy. Pace yourself. Don't let relapse be an inconceivable thing.

Relapse isn't about doing it wrong, or life never being good again, or never being able to exhale. The risk of relapse is about the nature of the underlying brain disposition. Relapse isn't a slap in the face or a betrayal or hopelessness. Relapse is waiting, and here's my advice:

Plan for relapse. Don't cower and tiptoe or turn your back. ED's favorite phrase "I couldn't bear to go 'back there'"

Trust but verify: keep monitoring in place not because "you don't trust me" but because this brain predisposition comes with a cloaking mechanism. Patients usually can't see the road they are going down until it is too late and that's neither their fault nor should it - in my opinion - be their responsibility without backup. An ED diagnosis means add monitoring to one's lifetime plan: your doctor, your family, your friends, your spouse need to know the symptoms of a returning ED just as an epileptic needs to wear a bracelet. Keep a relationship with an experienced (and progressive) ED therapist wherever you live. Check in every few months, or once a year. Keep them on your holiday card list.

Being able to talk about it isn't a luxury, it is a necessary step of recovery. Parents may want to avoid provoking irritation but I don't think we have finished our job until the whole family is fluent in the mechanics of the illness. Patients, I have observed, mostly hate this. Tough.

Keep learning. ED science is changing daily - there may be new tools and approaches and therapies on the horizon next year, or down the line. We're just beginning to understand this illness.
Normalize recovery. Make it permanent to behave normally around food and activity. The recovery period can't be the only time for family meals and communicating well and lowering stress - that's a lifestyle not a temporary thing. Make a lifelong rejection of dieting, body talk, relentless stress, and un-fun exercise.

Be assertive with the ignorant. Doctors will say stupid things, Aunt Freda will talk about diets at the Thanksgiving table, coaches will wink and nod over missing meals, and teachers will think you are overbearing when you want accountability. Expect this. Do the right thing anyway.

Fall apart. You may do this naturally, but put it on your schedule and congratulate yourself for it when it happens. Most parents are pretty good during the crisis but lose it entirely when they start getting any sleep. This is a time ED seems to love: great opportunity to exploit lowered defenses. So fall apart on a schedule instead. Put cathartic crying, screaming, loud music, and emotional movies on the daytimer. You've earned 'em.

Back off slowly, come back in slowly as needed. It's not a one-way deal: it's a dance. Don't wait for a crisis.

Parenthood doesn't end at 18. The law will try, the media will try, your friends will try to sell you this BS, but don't you buy it. Your rights may be curbed, but not your responsibility. Parenthood is forever.

"No questions asked." This is the promise we made to our daughter: that at any sign of struggle we are going to be there to help, no questions asked, as often as needed.

Nothing but the truth: staying well and weathering storms requires a level of honesty that may not have otherwise been comfortable or necessary. Brace yourself for awkwardness. Sense of humor and humility come in handy here.

"It's not failure, it's feedback" is a favorite phrase among ATDT parents for a good reason. You have to know your enemy and a relapse of behaviors and thoughts offers valuable information needed for the future. Hiding from it doesn't make it not so. In fact, hiding from it nurtures ED.

My biggest lesson from ED: parental instincts are the most powerful diagnostic tool out there. Parents KNOW something is up. Sometimes we over-reach and see symptoms that aren't there, and overreact, but more often our instincts are ignored and disregarded when we knew all along that thoughts and behaviors are drifting toward relapse. We can nurture that ability in ourselves by treating ourselves well, surrounding ourselves with healthy support, and refusing to let ED intimidate us.
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