Is anorexia nervosa (AN) a chronic illness? What do we mean when we say that AN, or any other eating disorder, is a chronic illness?
Wikipedia says: “The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV/AIDS. In medicine, the opposite of chronic is acute.”
Lasts for more than three months? Oh yes. By that metric AN is certainly chronic. But does chronicity imply anything about whether or not it can be cured? No, because on that sample list of chronic illnesses hepatitis C, for example, can certainly be cured, as can several cancers. And note that it was a major accomplishment to turn HIV/AIDS from a death sentence into a chronic (but controllable) illness.
So I would say that eating disorders, like depression and anxiety disorders, are chronic illnesses which (with treatment) can be made to disappear for years, perhaps even for a lifetime. Far, far from being hopeless, the situation with pediatric eating disorders is very hopeful. Kids can and do get well and go on to lead wonderful lives. Last week, a 29 year old former patient of ours came to see us and to thank us. She is happy, beautiful, married, educated and the mother of two. She is successful and… grateful. “Thank you,” she told us “for insisting that I do what was right rather than do what I wanted.”
Acute illnesses come on suddenly, sometimes within hours, get treated and go away (or are fatal) within a short period of time. Chronic illnesses often come on more slowly, even subtly, and typically require longer treatment in order to go into remission. Remission means the symptoms are gone for now, whether “for now” means for months or for years. And no doubt in some people their symptoms extinguish forever. The trouble is, you can’t fast forward to the end of someone’s life to find out.
The opposite of remission is relapse.
But let’s be careful with our vocabulary here: you have to actually be “in remission” in order to be said to have “relapsed.” A common error we observe is for parents or providers to say that a child has relapsed when they were not in remission in the first place.
In the case of AN it is not enough to be weight-restored in order to be “in remission.” There can be no remission without weight restoration, but the fact that a patient is no longer restricting or losing weight is not enough to call them in remission. They may still have tortured thoughts about their imagined large body size, their weight/size may assume much more importance in their minds than it deserves, they may not be able to resume their former easy social and familial functioning and they may be too anxious to return to school. Resolution of these issues is called psychological remission, and it takes longer to achieve that mere physical remission.
So what does relapse look like? First and foremost it is likely to look like a resurgence of the psychological symptoms you saw initially: increase in social isolation, focus on schoolwork to the detriment of time with friends and family, increased anxiety, increased exercise, perhaps an increase in body checking or a refusal to wear a swimsuit, increased irritability. Then the “shaving calories” behavior starts: decreased portion size, uneaten snacks, new rejection of categories of foods (“gluten” “meat” or whatever)... Basically it begins to look like it did when you first met the eating disorder, only sometimes more subtle.
What do you do? JUMP on it. Do not tolerate any weight loss, monitor exercise, supervise meals and if weight loss cannot be stopped within in 10 days or so seek help.
The problem with relapse is that it is terrifying and it feels like a failure: your failure, your child’s failure, the treatment team’s failure. Yet it’s not. Relapse is a common feature of any chronic disease.
But the good news is that you can get your child back into remission as long as you do not stick your head in the waters of that ole river in Egypt: de Nile.
Stay calm. Don't panic, you actually do know what to do. Avoid a circular firing squad with your family, child and treatment team. It’s no one’s fault. It’s just the way this illness acts sometimes.
Avoid wishful thinking: I’m sure she doesn't want to get worse because she’s graduating in a few months, going off to college, taking a trip to France, just got on the swim team... you name it. Remember that your child is not choosing this relapse, they are suffering from it.
Relapse is not fate; it is a stumbling block on the road to your child’s future. Take a deep breath, reach out to those who support you, and carry on. With determination and treatment, this too shall pass