The literature on lifetime mortality (the death rate) from anorexia nervosa has been cited as 20%, 10% and 5%, but I think whichever turns out to be the real number, we can all agree that it is too high.

When a young person dies, for any reason, we feel a terrible sense of loss if we are close to them, and a terrible sense of waste if we are not. To die because your brain commands you to refuse food, to fear your own body, to resist your family’s attempts to feed you is sad indeed. Sad and inexplicable. As my grandson asked me when he was four and learned of death in animals: “Is it forever?” Yes, little guy, it is forever. And you know what? It’s not less sad in an older person either.

Today a seasoned and caring therapist came to me to “vent.” That is a contemporary word for sob. Through her tears she told me about a man in his 60’s whom she had cared for for years and who recently took his own life in despair. He had had anorexia nervosa for 40 years and by the time of his death was a diminished, wraith-like man who weighed less than many ten-year-olds. This therapist had battled at his side for the past few years, helping him painfully gain a few pounds and then watch him swiftly lose it. He had long since ceased to find triumph in this weight loss, finding instead only the feeling of being a loser. A loser in pain.

“What could I have done differently for him?” she asked me.

“Nothing,” I told her, having heard the facts. The truth is, some patients are destined to die, despite all you do. Taking care of patients with anorexia nervosa, we learn that some people will go on to die of their illness, some will have their condition remit spontaneously, some will struggle chronically and some will recover with hard work and support. No one knows the exact percentages of each group. No one knows exactly who is in which category, but one thing for sure: you can’t tell by looking. Although some patients will die emaciated, others will take their own lives at any weight, or have their heart give out at some arbitrary weight everyone thinks is “normal.”. Sometimes a person who was obese before they got anorexia nervosa will be at a weight where friends (or doctors!) will tell them, “You could still lose a few more pounds,” even though they are desperately ill: bradycardic, orthostatic and weak.

You should fear this illness. You should respect its potential severity and resist the temptation to trivialize it as “just a desire to be thinner.” But you should not give into it, whoever you are. Do battle with it, oppose it, seek support from your family in your quest to survive, or for your loved one to do so. And don’t give up. Never give up.