I am occasionally asked whether or not anorexia nervosa is a chronic illness.  As far as I am concerned, anorexia nervosa is a chronic illness of remission and exacerbation, which is a medical way of saying an illness that often returns after a period of stability.  Anorexia can be gotten into good remission, which may last many years, but it can flare up with a recurrence of symptoms during times of stress, life change or for no apparent reason.  We call this relapse.

As with the first time eating disorder symptoms appear, no one is to blame.  When a person relapses, no one is to blame either, although after the first round of treatment we should have enough information to effect “early recognition” and “prompt management”. Early recognition and prompt management of eating disorders are necessary to get a patient back into remission with as little disruption to their life (and the life of their parents!) as possible.

“Be not afraid” should be stenciled on discharge papers when families graduate from Kartini Clinic. We tell our families: “you have the knowledge to keep this eating disorder at bay”.

When our patients graduate from eating disorder treatment we meet with them and their parents to draw up two lists.  One list is for the parents; it will contain a numeration of eating disorder symptoms which, should they occur, would mean that parents need to contact us promptly for a status evaluation of their child. This is true for young adults as well as for children and teens.  Typically, this list will contain such eating disorder symptoms as “weight loss”,  “food refusal”,  “social isolation”, etc. The other list is for the young person to write up.  This second list basically states  “what it would take to convince me  that I needed to come back to Kartini Clinic for help”.  The two lists may look different, but that’s ok.  The idea is to take the blame out of relapse by identifying concerning eating disorder symptoms ahead of time and agreeing that, should they occur, there will be no arguing or denial, the family will simply return for an evaluation.

As with all diseases of remission and exacerbation, early recognition of when a person is “in trouble” (becoming ill again) is essential to preventing hospitalization.  The sooner symptoms of anorexia or other types of eating disorders are recognized, the more likely they can be arrested with outpatient interventions.

So what prevents patients/parents from catching an eating disorder relapse early every time?  Why are so many kids already medically compromised by the time they are returned to us?

The basic reason has to do with the trauma of treatment in the first place.  Family-based treatment of anorexia can be so labor intensive, so expensive and time consuming that when a family first begins to notice signs of relapse there is a tendency to close their eyes in the spirit of “Oh no! This can’t be happening again!  I can’t handle it!”  Which of course works as well as sticking one’s head in the sand.  But it is tempting. 

Another reason patients are brought in late when they relapse relates to their or their family’s fear that they will be blamed for this “failure”.  Relapse, let me say it loud and clear, is not a failure.  Relapse is part of the natural history of any chronic illness, including anorexia.  In my next blog I will discuss the actual symptoms of relapse.

Forewarned is forearmed.