Recently, while responding to a struggling parent who had posed a specific concern on the F.E.A.S.T. website, I used the word “remission.” Another mother on the forum responded that she did not like my use of the word “remission” since she preferred to think her daughter’s illness was not chronic. Until that moment it had not occurred to me that this question of chronicity was a controversial one for some parents.
Ken Nunn, neuro-anatomist, eating disorder specialist and great thinker, wrote an important chapter called “The Sensitivities that Heal and the Sensitivities that Hinder” in Drs Lask and Bryant-Waugh’s Eating Disorders in Childhood and Adolescence 3rd Edition. In it he called childhood anorexia nervosa a “malignant disease of children with parents usually trying to do more than could be expected of any parent…”
” Malignant disease” puts it well and, as one who has tried to help families come to grips with early onset anorexia nervosa, I echo this description. Anorexia nervosa has the same lifetime mortality rate as some types of childhood leukemia (and we don’t stop loving and being terrified for our children just because they become young adults). The spectrum of severity of illness in anorexia nervosa is very wide, with some people whose illness is so severe that they lose their lives to it while still young; some are unable to conceive children later in life or to care for those they have; some have less severe illness with periods of complete quiescence and there are even some cases where symptoms mysteriously disappear and seem to be gone forever. But all children can be treated and most can be treated successfully, though that is a topic for a different blog.
What are the patterns we observe with this disease when it strikes in childhood and adolescence? Does it rise up suddenly, get treated and disappear? Does it creep up on the patient and family, then respond to treatment? Does it seem to go away and then resurface in times of stress and change or for no apparent reason? There is definitely more than one pattern, so let me try and describe what I have seen over the course of more than 1500 children with eating disorders, more than 80% of whom have anorexia nervosa or one of its variants.
Anorexia nervosa can begin abruptly or appear to do so. It can also start slowly, or appear to do so. Often the signs and symptoms get ignored or glossed over, more often by physicians than by parents, but sometimes by parents as well. No one wants to look for trouble. Everyone wants their child to be “normal,” for everything “to be alright.” Commonly, in retrospect, our patients tell us that their preoccupation with weight/fat/food or similar began long before any physical symptoms of the illness appeared, sometimes many years before. Some children remember having a personal, unspoken concern for these issues as far back as earliest childhood.
When I first began treating childhood eating disorders adult providers often spoke of “recovery”, a term borrowed from addiction science. I did not feel that it rang true for our young patients. Over the ensuing years of following our patients, the chronic nature of anorexia nervosa began really to strike me. It acted like so many other diseases of “remission and exacerbation”, chronic conditions such as depression, anxiety, diabetes, rheumatoid arthritis or inflammatory bowel disease. It was clear that anorexia nervosa could seem, for all intents and purposes, to be gone only to reappear (or to try to) after months or years. There seemed to be no distinct way for us to predict the course although a common resurgence time was late high school or early college. Some cycles were shorter: six months of good health where the eating disorder seemed to be gone only to resurface with increasing ED thoughts for a few months and then to remit again with more treatment.
I began to think in terms of “relapse” and “remission”. Why? For me these were hopeful terms —and more importantly, they were honest terms. How does it serve a family for us to imply that their daughter or son has been “cured” when this flies in the face of our own clinical experience? Even if you are very uncomfortable telling parents what no one would want to hear, does it make sense, is it fair, to give them this (often but not always false) hope and let them find out the truth on their own? For find it out they will. My concern is that if we frame a child’s condition as “cured”, when they do relapse the parents will experience this as a personal failure—either their own or the child’s. It is not a failure, not even a treatment failure, it is the nature of the illness. Understanding that we do not cause and therefore cannot “un-cause” is both empowering and terrifying. As parents and providers we offer up all of our strength, resources, love, knowledge and the power of good medicine and food. More we cannot yet do, given the state of the science. But it will be enough to get our young patients into remission and to allow them to grow and develop normally while their brains heal.
Can anorexia nervosa ever spontaneously remit? It can. Is that the usual pattern? No. Can it “disappear” with treatment and never come back? It can. But that is not the usual pattern, anymore than it is usual for the other above referenced chronic, medical and psychiatric conditions of childhood.
By focusing on the relapsing nature of the illness we can de-stigmatize the journey. Of course, at first parents are saddened (even angered) to learn how long the road will be, who wouldn’t be? But if they can be bolstered by the near certainty of achieving a happy and successful life for their child, is not the truth better? Let’s honestly recognize the illness for what it is: a potentially malignant disease of childhood that can be firmly brought into good remission and which, when it relapses, can be fought back into remission with the tools at hand.
So, is anorexia nervosa a chronic condition? It usually is. But this chronicity does not reflect poorly on the child, the parents or even the treatment team. It just is the way it is.
Ken Nunn ends his chapter with these words: “But AN is not immortal any more than smallpox or poliomyelitis. It is time to systematically, tenaciously and strategically seek a cure, just as our colleagues in oncology seek a cure for the malignancies they face…” There is much we can do today that even a decade ago we could not have achieved. There is much more we could do if all those who suffer or have loved ones who suffer combined forces with clinicians to “crack” this malignancy of mind and body. There is so much more suffering that could be relieved by the simple recognition, by the community as a whole, that those who suffer with anorexia nervosa should be accorded the same dignity as those who suffer with other malignancies. The dream of healing anorexia nervosa will only be realized at a very substantial cost; the cost of us as a community becoming aware of the pain of those who suffer from anorexia nervosa, the anguish of those who care for these young people and our responsibility to relieve their suffering and anguish.”
So let’s not despair—far from it—but fight on.
Editor’s note: This post was originally published in September, 2011.
